Young Adult Cancer Canada > Community

Boudoir bye-bye?

By Julie Michaud

After I heard the dreaded words, "it is cancer," there was one topic that I found it very difficult to get a lot of information on. It was not the topic of treatments, options, or support. It was also a topic that I expected to occupy my thoughts. I had just found out the large tumour in my body was cancer, it was in my lymphnodes, it may be spreading as I sat there waiting. But I couldn’t shake a little thought bubble: What about sex?

I had been married to my husband for two years. We had been getting ready to plan our son's first birthday. We were fresh into our new experiences, but far from the "honeymoon" aspect of our relationship. Let's face it; sex was a part of our life.

There I was talking to surgeons to discuss removing my right breast. Chemotherapy would be poisoning the cells of my body trying to kill off the cancerous cells and trying to stop them from spreading any further. Would I even want to consider sex during these times?

The fact is, sex is a part of our nature, especially for young adults. It is part of the way we express our intimacy. I knew there were many, many more ways to express intimacy than the simple act of intercourse, but how would my diagnosis and treatments affect my libido?

One nurse was informed enough to tell us to expect excessive dryness due to the medications and chemo drugs. Another nurse tried with gusto and redundancy to express there are more ways than intercourse to express love and affection. Wow. I'm sure there are people out there that don't care for their partner's feelings when they get horny, but my husband actually respects my thoughts when we discuss our sexual encounters.

That was it; a finger wagging at him to "be good," and the tip to invest in lube in case I feel frisky some day.

I imagine this is even harder to deal with if you are single, let alone ask for suggestions. Mentioning to your prospective partner that you have to get up early for your chemo treatment the next day might put a damper on the night's festivities. Telling them that you have no breast under that bra can be a bit of a mood-killer. But, you can do it and get through it.

So did I want sex during my treatments? Of course! I had the desire for intimacy and wanted to share that with my husband. Did we go at it like jackrabbits? No. We had to deal with the cancer crap that kept rearing its ugly head. I started my treatments with six rounds of chemotherapy, and a couple days after chemo I would start to feel normal and was therefore able to start engaging in normal activity.

Hugging and caressing are great when you do not want to have intercourse and just want to share the feeling of being loved. Simply brushing someone's hair back (or lovingly rubbing that now bald scalp—thank you very much, chemo), giving a foot rub, or even running to get the toss-your-cookies bucket can be ways to show you love the person in question.

Now, that being said, there are other things that can happen to your that are completely personal. Remember, everything varies from person to person. We're all different, so if you start finding something has changed and you don’t like it, talk about it with your partner.

Talk about how you feel emotionally and physically. I don't mean just whether you are in the mood, I'm talking about what you have going on in your head. Your partner cannot be responsive if they think you’re doing great because you are hiding your fears and personal limitations.

Talk about what has changed. What works great, and what doesn't.

If you need it, find a third party like a therapist or social worker to talk about your concerns. Not everyone wants to talk about this stuff with his or her partner first. These people have degrees so they can help you.

If you find the positions are not working like they once did, purchase a book on positions, like the infamous Karma Sutra. Buy some new toys. If you don't have toys already, now may be a great time to start looking at them seriously.

If you lose part of your body or start being covered in scars, it is up to you to accept the "new you." There may be ways to help decrease the appearance of the reminders that we once had to endure toxic chemicals and surgeries, but there will be parts that you cannot erase. You need to look at the mirror and see you, not the treatments. That may take a long time. It's okay if it takes you a long time to come to terms with your "new you," we all heal on our own time.

Some of us feel scars deeper than others. For some, losing hair is passé, for others it is like splashing neon green paint on their face and standing under a black light. Deal with your scars as you need to. But face them. You are still you.

Some things may slowly return to normal. Some things may never return to the way they were. You are allowed to change your mind. You are unique. You are important.

RECAP

The big five between the post "It is cancer" and pre "It is cancer" sexual worlds:

1. Nerves are heavily affected by chemo. Do not be surprised if you find it frustratingly difficult to climax or impossible to even climax at all.
2. Some positions that you once thoroughly enjoyed are no longer your cup of tea.
3. Your libido may now be a faulty light switch. You’ll be on one second, the next you’re off...then on…then off…  Make sure to fully vocalize these issues with your partner.
4. If you are female, I recommend you invest in gel lubricants. They tend to stick around longer and are easier to deal with in a moment of passion.
5. Having parts of your appearance change may not bother your partner, but they might bother you. You have to come to terms with your post-cancer body.

It’s hard out here for a Survivor

By Amy Aubin

Drive to the hospital/gas for the car: $62
Car insurance payment: $90
Car payment: $169
Chemotherapy drugs: $12,422 (one treatment)
Child care for the day: $50
Childcare/helper for the week of chemo: $325
Food for the week: $175
Electricity/hydro: $200
Rent: $1000
Medications: $397

I know you’re probably expecting a happy ending like on those MasterCard moments you see on television. Unfortunately, that MasterCard moment doesn’t exist when you have cancer.  

Given that March and April are tax months, it seemed a good time to talk about the dreaded topic of finances.  Finances are such a touchy topic since it is intertwined in so many other topics and it is hard to discuss with new boyfriends, partners, even with parents.

Money gets tangled in with all the other complications and issues that come with a diagnosis of cancer, especially when you are a young adult and just starting out.  Many of us have student loans, have just moved out, have children, pets, and other obligations. 

I am a very proud person who has always been self-sufficient. My husband and I have always managed. We ran out of things to cancel around November 2011 and came to what seemed like an awful revelation: we had to move home.

Everyone has their own situations to face when it comes to finances. We were fortunate enough to have help from family, but so many others struggle to find a balance.

The really unfortunate part is that some people are forced to make the decision whether to receive treatment or not based on money.  This should NEVER happen, to anyone, let alone to young adults. We are supposed to be at a time in our lives when we should focus on love, and living our lives. Cancer puts a complete stop on a lot of that. 

There are limited resources out there to help us young adults continue on, and it varies province to province.  I have personally found the best way is to connect with a Young Adult Cancer Canada (YACC) to find a group in your province. Word of mouth gives the best advice. 

We are all in this together and never forget: no matter what, you are not alone!

Lost in Transition

By Tim Buckland

YACC Alumnus Tim Buckland wrote an article for the Canadian Medical Association Journal called "Lost in Transition" about the space after active treatment where a young adult cancer survivor can feel lost. 

Click here to download the article. 

Bonding through blogging

By Julie Taylor

My hat is off to all young people having to rebuild their lives after cancer and other serious traumas. This includes me! I was a 28-year-old single mom with three sons when I found myself in hospital after being in a coma for several weeks. My life, as it had been, shattered.

Thank God for young people’s very youth. This makes suffering trauma at this age especially tragic but also makes it possible for them to survive. I so appreciate the determination and "can do" (or "fuck you"?) attitude that seems to come with youth.

When I was lying in my hospital bed, unable to move, I was told that "the perfect age" (what wording!) for serious trauma was between the ages of 22 and 32. Just what I needed to hear! I was 28 at the time. Apparently young people’s cell-age is mature but still young "enough." This makes them resilient and the best candidates to heal. 

A few years ago (age 49) I had a minor trauma which brought back some of my earlier symptoms and from which I still have not recovered (three years later). I feel older and tired and "things" seem slower generally. So, even though it is hard to rebuild your life at any age, I really appreciated the possibilities that being young presented to me.

I still feel "young enough" and question "how on earth can this happen again?" I don’t believe in coincidence and I’m absolutely sure there is a reason for everything that happens in life--we just may not be aware of it yet. I am also quietly grateful that it’s not one of my kids or grandkids--or anyone younger--who is in my shoes.

Perhaps because most young adults are busy building their lives for the first time, there are few support groups to connect young cancer "graduates." One of the great website is Baldylocks  for "young people who have overcome cancer." Check out the Baldylocks blog and her rant--I think you’ll enjoy her! And, difficult as it is sometimes, every day of life is for enjoying. Somehow.

I love the vision of Young Adult Cancer Canada's website: “To eliminate the isolation for young adults with cancer (in Canada) by providing inspiration, information and support.” Great! It’s worth searching hard and finding a support group because it’s one of most helpful things you can do to heal. There was no Internet when I was recovering in the hospital. Now that I’m housebound much of the time again, I have discovered how incredibly wonderful the Internet is and the community it provides. I can’t imagine life without it.

If you can’t find a support group, there are virtual support groups aplenty. Or if you want something a little different or more than what's offered on typical blogs, start your own! Blog to your heart’s content. Baldylocks has voiced what cancer has meant to her in a brilliant "cancer-sucks" rant. There’s been no stopping her since she started using her Mac laptop! She fell so in love with it that I was jealous! Eventually I bought one; they are even warm and make great bed-partners! Seriously, the most useful thing you can get for someone undergoing cancer--especially if they’re young and computer savvy--is a laptop computer. It makes such a difference to the life of someone who suddenly finds themselves in hospital. There are zillions of things you can do if you have your own laptop and life can become meaningful again way sooner.

Connecting with people going through the same ordeal as you really helps. Don’t underestimate it! These people will almost certainly have heard of the issues that are bothering you and they will be able to share ways they have found to deal with them. Just to be able to talk about them is a great help. I don’t know about you, but I had to be so careful not to "bore"--or worse still, lose--friends who were important to me but who just didn't "get it" or have the patience or understanding to stay with you through life-changing trauma. This suddenly-being-plunged-into-a-whole-unwelcome and-awful-world can be totally consuming. Because I wanted to be sure of keeping my friends, I had to be careful not to over-expose any one of them to the world I found myself in. They could only take so much.

Do yourself the biggest favour: Connect with a support group today, online or in your hometown. I’ve seen firsthand so many times how much difference it makes. Every time. Groups online can be anywhere in the world. They’re also available 24/7 and of all the people in the whole world, there’s bound to be someone you bond with! There were days when my friend was at her wits end and one of her friends were always online, either in New Zealand, England, Boston or Vancouver.  A funny comment or a heartfelt good wish, often from a stranger who’s in the same boat as she was, would cheer her to no end and help her face stressful doctors appointments, tests, and examinations.

For me it was pure magic too: I knew how badly she needed contact and it was such a relief to know that someone was there for her when I had my own job and family to deal with.

Chemotherapy and "chemobrain" cause many symptoms similar to stroke and brain injury. The thought of anyone having to go through the same loneliness that I felt is what prompted me to create ReBuildingYou. We all need every bit of help we can get to rebuild after cancer as well as after any other serious physical trauma! I look forward to hearing from you!

Good luck!
With a hug, Julie

Remembering Janelle

By Lesley Morrissey

Our world is one of inspiration, passion, sadness, challenges, compassion, enlightenment and love. By "our world" I mean the young adult cancer world.

I have been working at Young Adult Cancer Canada for nearly three years. The best three years in my life, to be quite honest. I started as Program Director, in which I planned Retreats and Conferences, and in which I had the pleasure of working with patients and survivors on a daily basis. While I have moved from that position to the Managing Director role, my favorite part of my job is still working with our survivor community. I had an awesome time working with our new Program Director, Karine Chalifour, this summer at our Retreat Yourself and Survivor Conference events.

I am reminded this month of my first Retreat Yourself back in 2007. The reason I am reminded is because of a fundraising event that is happening through Bold for Breast Cancer. Since 2007 Bold for Breast Cancer has used pictures of women, artfully photographed in the nude, for the Bold for Breast Cancer calendar. The 2010 calendar is being dedicated to Janelle Hughes. Janelle was a wonderful individual that attended Retreat Yourself 2007, and who passed away from Breast Cancer in May 2008.

Bold for Breast Cancer—which employs the slogan, "breast cancer isn't shy, why should we be?"—was launched to help raise awareness of breast cancer in a less conventional way, through the art of body painting. Janelle was featured on the 2008 version of the calendar.

I was contacted several months ago by Ashleigh Topliss, an organizer of the calendar. Ashleigh knew Janelle and told me of their plans to dedicate the 2010 calendar to her. Ashleigh had seen that Janelle had come to our Retreat and that we had set up a fund for her to raise money for her flight to Montreal. Ashleigh contacted us to see if they would be able to donate the proceeds of their calendar to us in Janelle's memory. Of course we were delighted to work with Ashleigh and to remember Janelle in this way.

Janelle joined our Young Adult Cancer Canada family in July 2007 and she will remain with us forever. She was such a bright, positive person with such a light inside of her that she touched the heart of everyone at the event. Personally, Janelle touched me in a special way. During the Retreat we went for a walk together, just the two of us, and I saw a more vulnerable side of her. She was a woman with many faces, all of them wonderful. She will always remain in our family, and especially in my heart.

I wanted to send a special thank you out to Ashleigh. What you are doing is amazing. I know Janelle would be very proud.

The calendar, will be launched Thursday November 19 during a special event in Vancouver. It features photos of body-painted women and men. For details, visit www.boldforbreastcancer.org or call 604-828-5590.

Cancer-free. Now what?

By Denise Organ

So the words the doctor said were, "there is nothing there; it is all gone."  I sat up abruptly and said, "NOTHING? Do you really mean nothing?" He replied, "Yes, nothing." Oh my God, I am cancer free. 

I sat back in my chair not sure how to feel. I looked at my husband and he high-fived me--such a man thing to do. I walked out of the hospital with a jump in my step, lighter on my feet somehow. After over two years of time, emotions, anger, questions all dealing with cancer, all I could think was, "now what?" 

I didn't know if I wanted to cry, laugh, dance, scream, or all of the above. What do people do when they hear that? Well now, I have all this extra time. All the time I had spent in my head quietly thinking about cancer and how life had changed was gone. It was supposed to be gone but sometimes anger still creeps in. You see my twin sister who also has thyroid cancer was not so lucky.

She went to the doctor two weeks after me to hear about her results and they were not as favorable. They found a growth of live tissue where her thyroid used to sit. Now she will endure the radiation again and surgery after that if it is not gone. The doctors told her she is a long way from the words I heard that day that changed my life once again.

So now the emotions start to sink in again: Anger, uncertainty, sympathy and GUILT. I feel so much guilt for being a year behind her in my diagnosis and already I am years ahead of her in recovery. She doesn't make me feel this way, I simply do anyway.

She is the closest person to me in my life. I love my husband with all of me and my children are my life but there is a connection with identical twins I can't explain, and I won't even try. When she hurts I hurt. To have a twin as close to you as she is, and then to go through cancer together, is a bond unlike any other.  I understand all the emotions she is going through. I used to get angry at the stupid remarks people would say when they heard I had cancer, and I sat on the other side of the phone not having a clue what to say to my sister when she told me it was not gone. All I could do was listen, support her choices and tell her I love her.  I can't do this for her but I can listen. Although I find it so difficult to hear it as it stirs up all the "stuff" I am trying to forget at this point. 

I find it difficult because in all the research I have done about cancer, all the people I have connected with, I can't find anyone that knows exactly what it is like to do this at the same time as your twin. But all is not bad with it I don't have to explain anything to her--she just gets it, and on more levels than any one else on this planet could.

All I know for sure is she too will hear those words--cancer free--but she just has to go through a bit more first. And I will be there for her in any way I can.  Hopefully the next time I write a letter it will be to announce the end of her journey, although I think we have a duty to not let the journey end! To make sure that we are available to others in need going through the same thing we are--I just happen to be doing that for someone much closer to me!

Wondering how to go back to school?

By Karine Chalifour

As we know, many young adults have to take a break from school during the treatment phase. Some will manage to do both, but for others, it's just not possible. When the treatments are over, getting back on track or "reintrajectorizing" (as YACC likes to say) into life can be very challenging on an emotional, physical, and environmental level. 

Post cancer, young adults will have personal expectations and dreams, but they will also be subject to the expectations of others. Many questions will arise; What now? What if? Where? Why? Huh? What's up, Doc? Etc. Physically, it can take months for the body to fully recover, and sometimes, it does not necessarily come back to the same place it was prior to the cancer experience. Not necessarily in a negative way, but just in a different way and challenges can also come from the environment. Young adults will have to face obstacles like finding a job, insurance, having financial difficulties and finding some money to go back to school.

Society has not thought all of those problems through, but for some, it's getting there. After having many survivors and professionals asking about existing bursaries to help young adults, who had cancer, go back to school, I did some research.

While searching on the net, I bumped into Scholarships Canada, an educational site for students to find scholarships, student awards, bursaries and grants. At first, I was not really successful in finding anything that could be useful for the YACC Community, so I contacted them directly and they gave me a list of possible awards that could benefit young adults--post cancer--who want to go back to school. They explained to me that, while most of the awards identify information as cancer research, they still found five awards that may be of interest to those affected by cancer.

You can find more details on their site but, if you want full access to their services, I suggest you create an account on ScholarshipsCanada.com. It's free and simple and that way you can get into specifics. When you create the account, they ask a bunch of questions about your interests, schools, degrees, etc. and there is a section reserved for special needs. You could include "personal challenges" in there, cancer not being one of the specific needs but another topic all together!

The awards are:

• Cancer Survivors’ Fund of Canada Scholarship
• Howard Lee Memorial Scholarship
• Spiritual Warrior Scholarship, The
• April Allen Memorial Undergraduate Scholarship
• Marilyn Van Stone Memorial Bursary

 

Continuing my search, I also found the site INFUSION Canada. Their mission is to focus on "fostering innovation, leadership and growth in young Canadians supporting cancer survival." They have a bursary to help those going back to school, but it is only for Ontarians. There seems to be different criteria (childhood cancer survivor, live in Ontario, etc.) that may not fit your profile, but they have many interesting programs and it may be worth a try. At YACC, we will try and connect with INFUSION Canada to see how we can collaborate and be connected to them. 

Megan McLeod, Social Worker and Supportive Care Coordinator at the Community Cancer Programs Network in Winnipeg, facilitator at many YACC events (and a wonderful woman) had a conversation with Jamie Penner, Accessibility Advisor at the University of Manitoba. There seems to be some support to help post treatment return to studies there, but I don't have all the details. I know of other initiatives that were started, but I could not find any concrete information on them. When I do, I'll let you know.

As you can see, this will have to be a work in progress. I am sure there are other sources and bursaries across the country. If you know of any, please let me know at karine@youngadultcancer.ca. I would like to keep that information available on our site so more people have access to it. The awareness around the young adult reality is getting more and more present, and finding out what is out there and what is missing will only help us get closer to having appropriate and sufficient services and support.

Helping every step of the way

By Karine Chalifour

A few weeks ago I told you all about my trip to Vancouver to the CAPO Conference. I also told you the Conference allowed me to meet with great people from everywhere all working towards the same ultimate goal: giving better cancer care to patients and families. Among the professionals I met, I had the chance to talk with Shelly Cory, the Executive Director of the Canadian Virtual Hospice. The Virtual Hospice is a bilingual website which provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. The website is fairly new; it became available in 2004. Shelly approached me after attending a short presentation I did on YACC and the Forgotten Generation; she wanted to talk about how we could work together on making the Virtual Hospice more accessible and in concordance with the needs of young adults and their families and friends. This discussion got me thinking.

On April 16, 2009, the Canadian Cancer Society made their 2009 report public. It was titled: "More Teenagers and Young Adults with Cancer Surviving." Their report focused on cancer in adolescents and young people 15 to 29 years of age. Reading this, I thought, "What about the 30- to 35-year-olds? Aren't they young adults as well? But I digress, let's stay focused here. That was wonderful news, but we know that steps still needs to be made in order to really get the survival rate to reach the level observed in children and elderly people. In the report, we could also read: As more young people with cancer survive, there is increasing need to do more to meet the distinct challenges of these young patients, according to Canadian Cancer Statistics 2009 released today by the Canadian Cancer Society. Totally agree with that, but through my discussion with Shelly, it was also clear that we also need to take care of those young adults that are fighting the disease until their last days. The survival rate is better, but it's not what it should be, which means young adults don't always make it and I believe this needs to be addressed.

The Canadian Virtual Hospice is a source of information and support exclusively on palliative care needs for people of all ages. Patients, family members, friends and professionals can go on the site and access articles, general information and also ask a question to a professional. For most people, palliative care is associated with "there is nothing left to do" when in fact it is still a form of very "active" medicine, the interventions are different, but so much is done in palliative care. Also, palliative care is not necessarily limited to the last few weeks of life. It can last longer, so having proper and sufficient support and information is crucial.

Living with cancer as a young adult is a different experience, we've said it many times. We can then imagine that dying as a young adult is also different in the sense that the issues the young adult, the family, the friends, the siblings are dealing with are different. I believe The Virtual Hospice to be a wonderful resource to get support and information through various channels. You can have access to pertinent and accurate information from home. When you are a patient or someone helping a loved one through the palliative care stage, this can make a big difference.

In the YACC family, we have lost wonderful and inspiring young adults and I truly hope they had all the support and the information they needed in that difficult time. Connecting with Shelly and making sure young adults know about resources like the Virtual Hospice is a way to honor and remember those we miss.

If you have a chance to go on the site and have a look it would be great. If you feel some things could be done to improve it and reach the young adults needs better, please let me know (karine@youngadultcancer.ca) and I will make sure I give the information to Shelly.

I know it's not happy talk, but unfortunately, end-of-life sometimes become part of dealing with cancer and I hope for the care and support to be available at all stages of life. If you want more information on the Virtual Hospice, don't hesitate to contact me.

Live, Laugh, and Love,

Karine

Connecting survivors coast-to-coast

By Diane Spencer

When I was first diagnosed with cancer, I never dreamed I would sit in a room full of young adult cancer survivors and listen to the voices of strangers echo my own thoughts and experiences. At 30-years-old and as a new mother in rural Nova Scotia, I felt very isolated in my disease. I could not imagine a reality that included national conferences focused specifically on cancer amoung young adults. 

This year I've had the pleasure to attend not one, but two, such events held by Young Adult Cancer Canada (YACC), formally RealTime Cancer. This summer, I spent five days in Jouvence, Quebec for Retreat Yourself 2008 and in October, I participated in the Kicking Cancer's Ass Conference (aka: Survivor Conference 2008) in Lake Louise, Alberta. 

Every year, these events bring young cancer survivors and supporters together to share their stories, to inspire each other, to laugh, to cry, and to consider what they have to offer others. 

Geoff Eaton, founder of Young Adult Cancer Canada, had a vision upon his own cancer diagnosis in 1999. Geoff's vision included a support system for young adults dealing with cancer. He recognized early in the game that survivors and their supporters have lessons to share with others. These lessons are important to the healing process and are valuable both to those newly and yet-to-be diagnosed. He launched an online community called RealTime Cancer, a web-based support tool that promoted survivor stories and generated virtual community support.

Having met Geoff in June 2006 at a Cancer Care Nova Scotia Survivor Roundtable, I was intrigued when I received an online invitation this spring to attend Retreat Yourself. This one-of-kind Retreat took place and was delivered in partnership with Montreal-based Hope & Cope, a non-profit, support organization for cancer patients and their families. 

The weekend was free to 31 survivors and supporters, and the program focused on sharing the wisdom of the participants and building a community of others who truly “get it.” Everything from fertility and relationships, to loss of dreams and redirection was discussed amoung survivors, supporters and health professionals.  For some, Retreat Yourself marked the first occasion to speak to someone their age in a similar circumstance. For others, the Retreat provided an opportunity to witness the experiences outside the parameters of their specific cancer for the very first time.

The YACC Conference also involved sharing stories and inspiration, but facilitators also prompted participants to consider how they might help the larger community.  For every 30 attendees at a Conference or a Retreat, there are another 6470+ young adult cancer survivors per year in this country. We know these survivors would benefit from attending Retreat Yourself and/or the Survivor Conference.  These events provide opportunity to share and be heard, to listen and to learn.

At every event, a community is born. A community of supportive, understanding people with one thing and every thing in common. I would encourage any young survivor to consider attending one or both of these events. Supporters who want to learn more about helping their loved one through a cancer diagnosis, or learn how to live well after the battle, should also attend. You are not alone.

Based out of St. John's, NL, Young Adult Cancer Canada not only hosts these events free of charge, but also subsidizes travel for both survivors and supporters. In addition to event information, surfers will find an abundance of survivor profiles, health information, an online community, a photo gallery, fundraising opportunities and YACC background information. Check it out.

[Published in CBCN’s Network News]

Follow your gut

By Denise Organ

Let me start by saying I spent a lot of time trying to figure out why I got diagnosed with cancer: why had he picked me? Well, after some long nights thinking and even longer nights crying, I think I figured it out. I think maybe I was given cancer so I could give cancer a voice. You see I am a talker, about anything and everything. So I guess he wanted me talking about something more important than the weather. 

In August 2007 my identical twin sister got diagnosed with papillary carcinoma (thyroid cancer). She had been on thyroid meds for years and had an unusually large neck that she had asked doctors about for years, but no one felt it was anything to be concerned about until December 2006 when she was really ill with pneumonia. She saw a different doctor who told her he could see the growths in her neck from across the room, and so began her journey with cancer. 

She was diagnosed in August of 2007. She had the entire thyroid removed and did the radiation, and all that comes with that. 

When she saw her oncologist she asked him if her identical twin should be tested and he said well maybe but nothing really to worry about. So being the concerned sister she asked me to demand an ultrasound on my thyroid. In December 2007, I found out that I had a number of lumps on my thyroid but of course nothing to worry about. About two weeks later I was sitting at the same surgeon's office that my sister had and he reassured me it was more than likely nothing. 

Mmmmmmmm nothing; well I demanded surgery as soon as possible. I waited for eight months to get surgery with many calls to the secretary asking for someone to listen to me as my gut was telling me this was not "nothing."

I had half of my thyroid removed to test the lumps. And so began my journey. As odd as it sounds, my sister found out December 2006 she had lumps and found out August 2007 she had cancer. I found out about my lumps December 2007 and that I had cancer August 2008. Coincidental? We don't think so!

I am now waiting for the second surgery to remove the other half as it has three lumps as well. Against the surgeon's opinion, and against the oncologist's opinion; I have made the choice to remove the rest. It seemed so clear to me to remove it but the doctors didn't see it that way. Then again they did not think I ever had cancer so with all due respect, I am going to listen to my gut. 

I wanted to share my story as I am hoping someone out there will read it and get tested, demand someone listen to you, expect more from our medical system and don't stop until you get it. I am now stuck in the waiting game that all cancer patients get really good at playing: "Hurry up and wait" should be the cancer motto. You wait for tests, then results, appointments, surgeries, treatment, and finally your life back.  I am anxiously waiting to be on the other side of this diagnosis. 

I want to get the other surgery complete, treatment (if needed), and kick cancer's ass so I can move on with all the other important things I want to do like laugh, hug, play in the sand, sleep in, walk in the rain, lay in bed with my children telling me jokes early in the morning. I want my life back.

I am angry most days, as I am a control freak and one thing I have learned is you have to be willing to give up some control when you have cancer. My health sits in someone else's hand, date book, and schedule, and that upsets me immensely. I want what I am worth, the best, immediately! We are all worth that much.

I am a survivor already; even though I am not completely through my journey (as if anyone is ever complete with cancer) but I am where I am because of my persistence and my voice. I tell everyone my story who will listen. I don't want anyone to be "shhhhed" by another person telling them it is nothing to worry about. 

These are the only bodies we get and I intend to be good to mine. 

I had no symptoms, no signs, and no reason to be concerned except my twin sister's diagnoses, and that was enough for me!

And so began my journey.

“Chasing Rainbows” and making movies

By Peter Mazereeuw

Cancer. Nothing makes people more uncomfortable than having to say that word and deal with the elephant in the room. Like divorce or depression, it is one of a few topics in our polite society all too often brushed aside with sympathy, re-assurance, or hushed whispers. After all, while it may be tragic, it probably won't happen to you.

That is of course, unless you are a male or female living in Canada, or anywhere else on planet Earth. According to the Canadian Cancer Society's latest statistics, 39 per cent of women and 44 per cent of men will likely develop some kind of cancer in their lifetime. One in four Canadians will die from the disease. In all likelihood, every family will be directly affected by this disease at some point. With local Southlake Hospital soon to become one of the biggest cancer treatment centers in York region and beyond, this cold fact is only going to become harder to avoid. 

When most people think of cancer they think of chain smokers, heavy drinkers, and octogenarians. This is most certainly not always the case. In fall of 2006 I was one of the over 3,000 people under the age of 30 diagnosed with cancer in Canada each year. I am part of a group of young adults and youth often overlooked by statisticians and cancer-care advocates; partly because our numbers are smaller than those in other age groups, and partly because most don't think that this sort of thing happens to healthy, young men and women.

While the diagnosis and type of treatment may vary among patients, none are easy. Physically, the effects go far beyond losing a few pounds and some hair. Every treatment has side-effects, every drug to help with side-effects has more of its own, and more or less every part of the body internally and externally is affected. A young man or woman undergoing cancer treatment can expect a quick change from having a body in its prime to one with many of the weaknesses common in a senior citizen. Ours is a unique perspective, as life is put on hold during some of the most crucial years when it is supposed to truly begin. Sympathy and reassurance are easy to find, but real understanding is not.   

This is precisely what Pat Taylor strives to change. She lost her daughter to cancer several years ago. During the end of their time together, mother and daughter came together with several other young cancer patients to film a round-table discussion on the effects of cancer on young adults, including the physical, psychological and, perhaps most importantly, sociological aspects. When her daughter Sara passed on, Pat turned this footage into a documentary-style film she is now trying to show to public health officials, young cancer patients and care-givers, and the general public across the country. She has already had success in British Columbia where the film was made, and is now doing screenings around the country, hoping to spread the knowledge and perspective the film lends to its viewers wherever she can.

You can find out more by visiting chasingrainsbowsproduction.com. 

Healing with laughter

By Paula Mccoy

We have all been told that laughter is the best medicine and I agree. Laughter helps to release endorphins in our body which in turn makes us feel good and it helps ease our pain and give us more energy when we feel tired.

I have found that one of the best ways to ensure that I have enough laughter to help me to heal, is to participate in a laughter yoga course, often held in places such as the Y or in the case of Montreal, it is held in the Wellness Center run by the Hope and cope organization. The particular course that I am referring to is the one given by Tracy Shafter once a week every Wednesday for 45 minutes. [For more information on Tracy's class please click here].

I find that when I am feeling stressed, laughter yoga helps me to feel relaxed. I feel much better after a class than when I first arrive there.

There are also many benefits to laughter yoga. It teaches you how to breathe properly. Most of us don't breathe properly, we tend to take deep shallow breaths and we breathe from our chest and not our stomach. The laughter also gives your body an "internal jog" making you feel more energized.

This class also gives you permission to laugh and be silly. As adults, we don't laugh as much as we did as children. We are told from a young age to "wipe that silly grin of our faces and to stop acting so silly." As we get older, we tend to forget how to laugh and just be silly. This class gives you permission to do both things, forgetting all your cares and worries. We only laugh about 10 times a day whereas children laugh about 200 hundred times a day.

I have to admit when I first started taking the course, I was a bit skeptical that the laughter would really help me to heal but after attending for the last couple months, my perception has been changed for the better and I would recommend it to everyone that wants to relax and feel better.

There are many relaxation methods available but I have found that this one has been by far the best one for me. It has been well documented that laughter is the best medicine and this is the easiest way to make sure that you have your daily dose of laughter.

Some things that you could try on your own when you are not in the class are:

• Sit down and close your eyes and think of something that happened in your life that is funny. Usually, you will start laughing in no time. Try doing this for about a minute or two and get a full belly laugh going.
• Try greeting someone in a silly way that you would not usually do. It's fun to see the other person's reaction when you do this.
• Talk gibberish, which means to talk nonsense that no one understands. It is one of the best things to do to help relax your mind. It usually results in laughter when you try this with someone else.

 

All in all, laughter yoga is something that I would tell other people to try; with no doubt in my mind they will enjoy it as much as I do. If you are ever in the Montreal area, come and give Tracy's class a try and if you are not, then look up laughter yoga on the Internet and see if you can find any class in your area. You won't be disappointed!

The best and worst thing in my life

By Rachel Baumgartner

Almost five years ago I found out that, statistically speaking, I had weeks to live. No one in the world had ever survived a relapse of my type of cancer following a stem cell transplant. Despite this, I have always said, "Cancer is the best and worst thing that has ever happened to me."

People always understand the "worst part": the surgeries, relapses, chemotherapy and its side effects, rumors flying, and death constantly lingering in my shadow. The element that seems to perpetually puzzle, however, is the idea of a best part. Let me attempt to explain.

The year was 1998 and I was a typical 15-year-old sophomore in high school, minding my own business. Being the starting three-pointer shooter on the JV basketball team, flirting with boys, and shopping with friends took up most of my time. Perhaps I was "too normal" and needed more excitement in my life. My whole back had begun throbbing earlier during the fall field hockey season. After a visit to the pediatrician, we were assured it was attributed to my heavy backpack. Months passed by as I wheeled my backpack around school. Life felt normal, despite my back hurting more each day.

On December 4, a Friday, I woke up early for the usual 6 a.m. basketball practice.  As I got out of my bed, my legs had the sensation of feeling asleep and would not wake up. Although, I was mostly worried about missing the big basketball tournament game that night, I was also scared and agreed to see a doctor at St. John's Mercy Medical Center. After all, my chest was slowly losing feeling too. After an MRI, my mother and I came back to the neurologist's office and immediately, he did the old "Let's sit down" talk. 

He showed us the scans and had emergency surgery lined up as my mother cried softly across the room in her chair. While comforting her, I thought, "Well, I will just accept whatever needs to be done and do it to get better!" My optimistic thoughts lacked any tangible reference point as to what treatment would entail. My second thought was worrying about letting my basketball coach know that I would miss our tournament game that night.

An egg-sized tumor was strangling the upper section of my spinal cord. My breathing was already being suppressed and shutting down my body by the hour. We met Dr. Bergamini, better known by his adoring patients as Dr. Bob. From Day 1, he became a second father who treated me like an addition to his already adequate brood of five. 

As I lay in the bed hooked up to IVs, I studied this man who had an immediate and long term plan to save my life--if I survived this emergency surgery. His tired eyes were very loving and he had driven back to the hospital on a Friday night to meet with my family. I could sense that he was a special person and I decided to trust him. With his relentless, caring, and knowledgeable approach, Dr. Bob became the first good thing in my whole experience. Then came the fact that I did not die that weekend, which was a very real possibility. 

The positive: after the surgery I regained all feeling back in my body and suffered no paralysis. The negative: I was diagnosed with Askin's Tumor, a very aggressive, rare and relatively unknown type of Ewing's sarcoma cancer found in only three to 30 people worldwide each year.

After the surgery my hospital room quickly turned into what looked like a florist and stuffed animal store all in one plus 57 Mylar balloons of all shapes and sizes floating above it all. At times, I had my whole field hockey or basketball team squished into the tiny one-person room. At the beginning, it was like a circus in which you just never knew who or what was in the next act.

Chemotherapy began immediately and for five sluggish days in a row I would have a combination of drugs that dripped through an IV all day. One of the drugs, Adriamyacin, was a juicy dark red one in a syringe as fat as a drinking glass. It was so nasty that it took distracting me just to administer it.  

My friends became excellent at skipping classes to visit me and my high school even encouraged it. During my first chemo, I still remember sitting on the floor playing Barbies like a little girl with a friend. Another time a new group of guy friends showed up mid-day with a bouquet of fresh flowers and just acted goofy. I prefer to remember these instances to the ones of laying in a dark room. Nevertheless, the hard memories seem to have a way of haunting me. 

Every night I would go home with an ugly blue IV backpack that flushed fluids into me. It felt so murky inside my body that I dubbed the drug-induced state "Fogland." Fogland--and the puking that it included--remained until late each night when the drugs diluted a bit in my body. At these times I would stay up late because the sooner I went to sleep, the sooner I awoke which meant more chemo that would make me sick for weeks to come. 

I missed school the week of chemo and then the next. Days were filled with lying in bed and going to the doctor for blood transfusions and leg shots to boost my blood counts that chemo had killed. I would have one "ok week," which meant attending school in the afternoons, and then it was time for chemo again. With so much time missed, attending school became awkward at times; most teenagers are not sure how to react to a "sick cancer girl" and some became overly nice to me.

Before this, at my all-girl Catholic high school, I had been just "one of the girls." Now I was a bald, weak, skinny girl with splints on my ankles and feet and what looked like a basketball game plan in marker on my back (to line me up with the radiation machine). It all stirred rumors that I was dying and I think my situation was scary for a lot of people.  I cannot really blame them though, I can only imagine not knowing how to react if the roles were reversed. 

My class also came together to organize dinners for my family three times a week and saved up money to buy me a TV/VCR for my bedroom. 

After the initial craziness died, it was the real friends that came over to watch movies on Friday nights instead of going to the latest house party. They were also the first to drive me to the house party, when I felt up to it and then if it was not fun, we could leave and say, "Well, Rachel does not feel good." One must take advantage of such little perks-that some in the cancer world call "pulling out the Cancer Card."

In March and April of 1999, I had six weeks of radiation interlaced with the chemo.  A strong memory comes to mind during one of these chemo weeks when I had radiation, too. I stepped out of the car with my IV backpack weighing me down and vomited into the bushes on my way in and proceeded on like it was a normal occurrence. I wondered if it all would ever end and if milk would ever taste good again. The chemo made my beloved milk taste like it was spoiled at all times.

Another positive event included my bald head because having grown up with long straight hair, I secretly always wanted to know what I would look like without it. So my wish was granted and my brother vacuumed my pillow religiously every night until it all fell out. Being a natural artist, my bald head became a challenging canvas--for painting designs, airbrushing, glitter lotion and more. My thought was that if people were going to stare anyways--as most did--I might as well give them something to see! My junior year Fall Ball dance led me to paint hot pink stars all over my head.  I showed off my head to the onlookers as I momentarily danced away any thoughts of my illness.

After a full year of baldness and chemotherapy, I had somehow kept up with my classes with the help of teachers and friends. I was gladly done and ready to be a teenager again. My amazing family had gotten through the tough year victoriously and had done every step of it together. It was hard to adjust because people assumed that my life would go back to the way it was pre-cancer and once again I would be normal; whatever that means. I constantly struggled with feeling older than my peers and that was (and still is) challenging.

The year of 2000 I was one of two young adults chosen by my church to go to Rome, Italy. We attended the Catholic beautification ceremony of Blessed Chaminade, founder of the Marianist community of priests and brothers. He was beautified after a South American woman who prayed to him was miraculously cured of her lung cancer. While in Rome, pain pills got me through increasing pain levels and my faith was strengthened as I prayed to God and Blessed Chaminade for a healthy life. 

In December of 2000, stem cells were taken from me to store in case I relapsed.  While studying them, cancer cells were discovered and my whole body was under attack again. It was very discouraging but with the help of family, friends, doctors and God, I was not ready to give up this easily. 

To embrace a new chemotherapy regimen and anticipate baldness, I ran to the drug store with a friend, bought some cheap hair dye and we bleached my hair, which is naturally very dark brown. It ended up turning an outrageous orangey-red color.  Since it was so hideous, it could not have fallen out fast enough! 

For the next five months, I was more IN than out of the hospital. If I had thought the first year of chemotherapy had been bad, I realized it was nothing compared to this. I was highly sensitive to the new drugs and endured horrendous cramping in my abdomen that the pain medicine could not touch, volatile puking, and explosive diarrhea--the works! On top of it, fevers and infections would develop in my blood and that isolated and hospitalized me even more. 

During one of these stays, Randi, a fellow cancer patient and close friend, was in the ICU. She was fading quickly from a courageous fight with a cancer similar to mine.  Somehow in the midst of the chaos with my body, for a couple hours I was able to sit up and ride down to her room with all my IV poles. In her last hours, we had a very special last night together. We all knew (and she knew) that her time was limited. I will never forget when she looked at me over her oxygen mask and forcefully told me, "Rachel, I will keep fighting in heaven and you must promise me that you will never stop fighting for all of us on Earth." I have never broken my promise.

I missed the second half of my senior year of high school. With extra credits I had taken before getting sick, I somehow graduated with my class, got into the School of Architecture at Washington University in St. Louis and several other schools, had a serious boyfriend, and kept up with friends during this crazy time. 

A new batch of healthy stem cells was taken from me in May of 2001 to prepare for my stem cell transplant. My doctors barely allowed me to walk at graduation, because three days later I was admitted to St. Louis Children's Hospital for the transplant. The night of graduation I found the energy to bounce around (literally) at the senior all-night event-one last hurrah before I was put into isolation for most of the summer. Looking back at pictures, I seemed to somehow have more energy than most of my friends. I guess that is what being in the hospital so long and adrenaline can do to a person.

Stem cell transplant admittance led me to one of the most intense regimens of chemotherapy that exists. It successfully killed my entire immune system like it was supposed to and brought me as close to death as possible. A few days later a hand-pushed syringe put my previously frozen stem cells into my IV in order to hopefully grow a new healthy immune system. 

At first, I was doing as well as one can expect-even enduring the mandatory showers every six hours. These were necessary in order to rid the body of one of the chemotherapy drugs that leaves your body by secreting through your skin. Then the day came that I threw up so hard it projected onto the wall behind my head. From there, most things are blurry. My ENTIRE body started peeling horrendously--this included fingernails, lips, and tops of my feet. Even my insides produced buckets of junk through a tube up my nose and down my throat. I was burning from the inside out. Late one night, we had a special delivery: a noisy new bed usually reserved for burn victims. My loving dad sprung out of bed, strapped on a green and white umbrella hat, donned a Hawaiian luau shirt and huge clown glasses. We had an impromptu party for the new bed! There is nothing much you can do in situations like this but have fun with what is before you.

Well, as if that all were not enough, I soon started hallucinating and they discovered I had two extremely serious infections. I was transported to the ICU as my body went into septic shock. The doctors "brought out the big guns" as they put it (the strongest antibiotics), and along with my tiny immune system, I once again surpassed all odds and pulled through. Later on doctors have told me I am one of the sickest kids they have ever seen that did not die!

I learned to walk and eat again, something I had not done in months. I slowly strengthened my skeletal figure. My spirits were hopeful even though everyone my age left for college. I learned to enjoy each day and whatever came along with it. I also started doing more charity work and traveling to see friends at college.

Small setbacks were part of the norm. One day in June 2002 in typical "Rachel fashion," my gall bladder had to be removed. I went to a concert the next day and discovered a severe case of shingles in my right eye the next. Going to college orientation with a swollen eye, a wheelchair and an IV sure was an adventure--thank goodness I had a friend along!

Fall came soon enough and I ended up starting the architecture program at the University of Kansas (Washington University had proved to be too expensive and KU offered many scholarships).  No one believed I could be "that girl in the wheelchair" at orientation. I excelled in my classes and met some lifelong friends, and was able to touch a few with my story.

Once again my body was screaming at me that something was wrong. I tried pain medicine but it was all too much and I was constantly nauseated, dizzy, and sleepy.  Struggling to keep everything together, I made the decision to move back home.

The day after Thanksgiving, we learned a new Askin's Tumor was fighting my body between my heart, lung, pulmonary artery, and spine. There was not much else to do at this point. We had exhausted our options and my weak body had maxed out on my lifetime doses of lots of chemotherapy drugs and radiation. Furthermore, surgery did not seem promising at the time.

This was when I asked Dr. Bob, "How long do you think I have?" He looked at me with those deep eyes explaining that he did not know, but maybe weeks to a few months at the most depending on what organ was invaded first. He told me whatever I did was my choice and there were no wrong choices. He believed in miracles and had even seen some. 

Hearing this statement made all the difference. There was hope and I decided to try for the miracle route! I would live each day and not pursue treatments since there really were no viable options at that point. I was also sick (pun intended) of most of the treatments even if they had been available to me. 

This was when my love for art and poetry really took off. Doing creative things became my way of leaving myself behind if I passed away. Traveling became something else I dove into deeper while trying to see places and friends. I made it to points all over the Midwest and got a taste of college. My goal was to continually have something to look forward to so I could strive to stay alive for that event.

A lot of my friends continued to stick by me, but I noticed that others distanced themselves. I also became aware of the toxic people in my life and realized that if my time was limited, it was wasted on them. This time less cards came to our house and my family received few encouraging words. I think some did not know what to do or say. On top of it all I despised the thought that if I died, I would become another statistic.

Three months passed and I seemed alright even naming the tumor Spanky. I came out of the fog I had been living in and said to myself, "Wait, I guess I'm not dying!"  I got a job at an art materials store, started dating a fellow cancer survivor and got on with my life! 

In the fall, a whole year with Spanky having passed, I was still alive as can be but was experiencing more pain. To help, I received three very low doses of chemotherapy. In December, a PET scan showed little to no activity in the tumor region. Another scan in January confirmed the same results.

During the entire time, my doctors scoured the globe for options from clinical trials to radical surgeries and new radiations. It seemed the expert doctors and researchers were not willing to help or did not feel they could do anything. Some of them said I should be on hospice or trying to remove the tumor would kill me anyways, so what was the point. In any case, I definitely would not be cured in their eyes. No one else had ever survived my cancer after it reoccurred after transplant.  Out of everyone, my family and Dr. Bob never gave up hope and I pleaded with God and Blessed Chaminade.

By May of 2004, an amazing thoracic and cardiovascular surgeon, Dr. Blucher came from the East coast to St. John's. He considered my case and wanted to take Spanky out. While meeting with him, he answered all of my questions before I asked even one. I knew right away he was the one for the job! We decided to take it out the next week.

Surgery went very smoothly as he removed all of Spanky which by this time was the size of a small Nerf football. It had grown to capacity and sat snugly against my fragile organs. Somehow, it miraculously had not invaded any of them though! I thought of Randi, as I often do, and recalled my promise to keep fighting for her and my many friends now in heaven.

The tumor's biopsy results showed the tumor had completely died inside me with very little treatment. We could not have been more ecstatic! In medical terms, it is a complete miracle and very unexplainable. It has been three years since that surgery and I am the only known case to survive a relapse of Askin's Tumor following a bone marrow transplant.

It is so remarkable that the Catholic Church and the Vatican are doing a formal investigation into my miracle. Church officials are strongly considering using my case to make Blessed Chaminade become a saint because of my prayers and those of my family and friends! (He would be the first Marianist to become a saint.) It is crazy to think they are talking about little me in the big Vatican. From time to time, I will get a call that someone important is coming to St. Louis to meet with me about this, and I never know when so I try to be on alert! I find great joy in seeing the positive sides of everything I have been through.

In April of 2005, I was asked to speak at the biannual conference in Los Angeles of pediatric oncology doctors from the U.S. and Canada. I was able to essentially stick out my tongue at the "experts" and say, "Haha, I survived without your help!" Well, this really means I politely gave a speech about my journey and shared some of my poetry and artwork.

Last summer, my efforts took me all the way to Denmark to help with a bike ride to give global awareness and raise money towards sarcoma cancer and research surrounding it. Another positive example out of many is my recent trip to Washington D.C. where I talked to Congressmen about cancer funding. I found out one of the Missouri Representatives I met with cosponsored the new cancer act!

I have found a couple of friends seemed to have issues with adjusting to "post-cancer Rachel."  It is like they got to know me when I was sick for so long that it was hard for them to see me outside of cancer. Some were able to work through that and one or two slowly drifted apart from me. Now more and more people, including my current boyfriend, only know "healthy Rachel" instead of the "sick cancer girl."

I try to balance all the cancer advocacy and events in the cancer world with all the non-cancer things like school. It is something I am constantly tweaking and configuring. I have accepted that cancer will never leave me. It is embedded in me with what it has left behind, physically, mentally, emotionally and spiritually.

Cancer is the absolute best and worst thing that has ever happened to me. Because of it, I am driven to become an art therapist and continue helping others through my speaking, my writing, my art and volunteering. As Albert Einstein once said, "There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." I choose the latter.

The humanization of radiation therapy

By Paula Mccoy

It was with great trepidation that I approached my radiation treatments as I really didn't know what to expect from the treatments or from the staff. There were many important things learned along this journey that could be of help to both patients and staff and today I wish to pass them on.

The term humanity here emphasizes the quality of humanness.

For the Patient:

Ask questions: If you have questions or concerns that are left unanswered, be sure to keep asking questions until you get the answers you need to feel comfortable about your treatment.

Help: If you need help during the course of your treatment, be sure to reach out to those that have been put in place to help you. If you are not sure where to turn, seek out someone who has been through the same thing, or the doctors who are trained to assist you in the journey.

Openness: Be open to listening to other peoples stories about their experiences and be willing to share your story if you are able to. This shows you that you are not alone in your experience and that there are many other people that have traveled the same road long before you did.

Patience: It takes time to go through the treatments so be patient. Also time is a gift that the staff can give to you by taking the time to explain your treatment and answer any questions that may crop up during your course of treatment.

For the Staff:

A sense of humor: A technician's job is very technical but it helps to put the patient at ease if they have a good sense of humor. It makes the treatments much easier to go through.    

Compassion: It makes a huge difference how you go through your treatment if you are shown a little bit of compassion by the staff involved with your case.

Talking: Talking to the patient to help him/her feel at ease in a very stressful situation, is a great help through the course of the treatment.

Bedside Manner: This is something that the staff should have. It is not something that can be learned by reading about it or through schooling, it is a skill that needs to be in place already.

For Both Patient & Staff:

Relaxation Skills: The ability to put someone at ease whether it is talking to the other person, or asking them how they feel. It is also an important skill that the patient can learn to put themselves at ease and relax enough to go through the treatment without feeling uneasy.

Communication: Something important that both the patient and staff need to be able to do. It helps to be able to communicate your needs or worries and it helps the staff to be able to effectively communicate what they need for you to do.

I am at the end of my course of treatment for cancer and during my journey I have found many of the above skills listed to be of the out most importance for both the patients and staff alike. My only hope now is that they can be of help to someone else going through the same journey.

The cost of living: No cure For cancer

By Matthew Zachery

The following article was sent to us by Matthew Zachary, an 11-year young adult cancer survivor and the Founder/Executive Director of Steps for Living. Matthew has suddenly gone deaf in his left ear. The condition is called Sudden Sensory Neural Hearing Loss, which is a direct result from the cancer treatments he received 11 years ago.

Matthew is a true survivor who believes that this has only reinvigorated him to "stay the course and continue to advocate on behalf of the more than 500,000 [US] young adults living with, through and beyond cancer each and every year."

Matthew wants to "stress the importance of recognizing that remission is not a cure and that public awareness and adequate funding for adolescent and young adult cancer survivorship programming is tantamount to that of cancer research."

Steps For Living is a progressive nonprofit communications, support and social advocacy agent for adolescents and young adults with cancer. Their mission is to increase quality of life for this population by connecting them with trusted and credible cancer survivorship tools, including social networks, peer support programs and psychosocial resources.

 

Matthew's Essay:

THE COST OF LIVING: NO CURE FOR CANCER

 

Life is about choice.

Remission is not a cure.

Survivorship is all the rage.

Why we fight:

I remember the first time I sat down at a piano and asked my mother, 'Where do you put your fingers?" She showed me a simple five-note scale with both hands and, almost instinctively, I repeated with precision. The next words out of her mouth were, "You're getting lessons." At that point, I know music would always somehow be a part of my life.

I was 11 years old. It was 1985.

It wasn't until my third year of college until I realized that a true career in music was possible. My dreams of composing symphonies for film were drawing nearer with each semester. A trip to USC Film School in the spring of 1995 sealed the deal for me and I knew where my life was going, an energized and passionate neophyte with dreams bigger than himself.

Someone once told me that if you want to smash your goals on the rocky shoals of intention, then simply tell God your plans. In retrospect, now 11 years later, that seems a double-edged sword. Truth to power.

Summer 1995: I was enjoying a paid summer internship for Dean Witter on the 68th floor of Tower One of the World Trade Center when I first began to notice that my left hand was behaving strangely. (Growing up in New York City had many advantages but the opportunity to work for three months at this facility was a life-changing event for me, then 21.) It wasn't until I got back to school and begin playing piano again (upwards of 60 hours per week), that I noticed a major difference.

The fall of 1995 was fraught with uncertainty as my left hand slowly lost it's dexterity and eventually failed all fine motor coordination tests, rendering this aspiring pianist (and lefty) unable to perform, write or type. A diagnosis of brain cancer in December would make strange sense of the madness and seal the deal that - perhaps only for now - my dreams must be put on hold.

I could spend paragraphs upon paragraphs about what it felt like to be a young adult with cancer whose invincible life came tumbling down in an instant. Two words, however, can sum up the experience: isolation and resilience. No fear. Perhaps blind ignorance and deft denial served their purpose but, in the end, how dare this get in the way of my dreams? I have a life to live and damned if I let this stop me. The pianist who couldn't play and the college senior who couldn't graduate was determined to see through this uncertain future.

"When am I going to die," I asked the doctor.

Or is this death?

There is a price to pay for surviving anything traumatic, medical or otherwise. Few, if any escape unscathed. That seems to be human nature. So, how do we cope in the aftermath when subtle - or not so subtle - reminders consistently influence and compromise closure, or the illusion thereof? For me, I had the mixed blessing benefit of being told that my life in the wake of my cancer diagnosis may not be a bed of roses given the intensity of the post operative treatments barraged upon my body for 33 torturous sessions of excessively high dose craniospinal radiation (5940cg).

Right off the bat, upon completion of treatment, I had lost a remarkable 110lbs in less than three months. After throwing up 5-10 times per day nonstop for that entire period, I had eroded the lining of my esophageous (antiemitics were of modest help), inducing a permanent physiological and neurological dysphagia (swallow disorder). My saliva glands were decimated (and, to date, only operate at 70%) leaving me with a chronic xerostomia (dry mouth) I was left virtually infertile, my testicles and sperm production was ceasing to function correctly. My brain, eyes, ears, glands, spine, heart, lungs, liver, kidneys and primary chest organs now all faced a potentially compromised future of chronic illness, physiological deficit and, even more scarily, a near certain and unpreventable secondary recurrence of cancer as a direct result of my treatment within 10 to 20 years.

Needless to say, I may have survived, but only in the loosest sense of the word for the "therapy" prescribed to save my life, nearly ended it back then and may be the causal eventuality of a life cut short before it's natural time.

I presently live. That's what I do. As best I can.

And I live a "better than the alternative" lifestyle. Meaning, I'd rather be here with these issues than dead and useless to the world.

Good came from this.

Three years after treatment, in late-1998, I finally got busy living and moved on. One of the happiest days was when I released my first solo piano album - Scribblings, songs from which had been composed in my head for almost three years post treatment as it took that long for my left hand to regain it's strength and dexterity at the keyboard. Balance in my life seemed to have been restored. I may never be the Hollywood composer but at least I still had my music - a peaceful reconciliation for a 25-year-old. A second album followed two years later and a third was composed but never released.

And so, in addition to the Vaudevillian cornucopia of maladies, chronic symptoms and physiological setbacks that I had learned to live with, they were but only the beginning, nee a staging ground for the true tests that were yet to come.

In 2003, my fertility returned however I will forever experience extremely low counts and below average motility. I must continue to spend $400/year in sperm banking in the event my wife and I require a reproductive specialist for fertility assistance.

In 2004, it was an intermittent arrhythmia.

In 2005, it was ocular and periodontal shingles along with the chronic onset of Irritable Bowel Syndrome, Colitis and Gastritis.

In early 2006, I began to experience catastrophic depression and mania. I was diagnosed bi-polar and it was the general consensus of my providers that this was yet another latent influence on brain chemistry from my treatments.

In late 2006, I had a testicular cancer scare as a result of a new circulatory imbalance.

On March 18th, 2007, within a span of three days, I lost all hearing in my left ear. The pianist who once lost the use of his left hand is now unilaterally deaf. The diagnosis? "Sudden Sensory-Neural Hearing Loss", a rare condition that my oncologist confirmed with me is, without a doubt, 100 per cent connected as a long-term side effect of my postoperative brain radiation. Essentially, my cochlea stopped working. Given it's location to be within millimeters of my tumor and the subsequent stereotactic gamma rays which beamed through my brain, I suppose it was only a matter of time before it gave out.

I can only imagine what may lie ahead but it is with utmost certainty that I will continue to be able to say, "I am still here."

Is this what it means to be a cancer survivor?

And yet, more good came from this.

A decade of experience and reflection and dissatisfaction yielded the birth of Steps For Living, a nonprofit support, communications and social advocacy agent for young adults with cancer whose goal was to use music and the arts to create lasting change in how the public relates to cancer. I founded this organization because I believe that this orphaned age group within the cancer continuum stands the most to lose without proper diagnosis, adequate targeted treatment, access to quality care, long-term follow-up programs and social networking support as they have the rest of their lives to reconcile the trauma, move forward and confront whatever ramifications (physical, spiritual, financial, emotional, practical) that may foster in that wake.

In our small, niche world, we're a hit. And we're making a difference by fostering connections, building communities and reversing the feelings of isolation faced by so many.

The past eleven years have played out for me as an orchestrated symphony of odd medical issues and rare, unique chronic health conditions all baffling physicians, defying conventional wisdom and wreaking havoc on my perception of being "cured." I am certainly not alone.

And this raises a controversial issue.

What does "Curing Cancer" mean? Seriously, what does it mean? I personally equate "cure" for cancer with "victory" in Iraq. It's nebulous and subjective but certainly very catchy, sexy and marketable. I remember being told, "You're cured. Go home. Get on with your life."

Evidently, that's not necessarily the end of the story; for me and millions of others like me.

I do not deny that the physical malignancy is gone. It's been 11 years and there is still no evidence of biological recurrence. So everything is hunky dory, right? Uhm... no.

I may be "disease free" or "in remission," but I am certainly not CURED of cancer. Remission cannot be equated with cure. Getting cancer and surviving is not a cure.

Remission is not a cure.

Being disease-free is not a cure.

I get sick to my stomach when I hear of organizations relaying, racing, running, walking and talking about a cure for cancer. In my opinion, there is no cure for cancer in the same way there is no cure for HIV, Diabetes, Asthma, Allergies or Autism. Fifteen years ago we funneled billions into HIV/AIDS research to find a cure and what was the end result? Better medicine. Better technology. Chronic condition. Manageable disease. Great strides. Revolutionary health outcomes. Lasting social change.

No cure. Or, from a certain point of view, the "cure" was in the "chronic."

I am not looking to trivialize this in any way but in the U.S. at least, people live with HIV by taking a cocktail of medication every day for the rest of their lives. The virus never gets worse but it never gets better. Now considered a manageable disease, it was the new diabetes. A death sentence had become a life sentence of lifestyle management, dietary restrictions, ongoing medical costs and endless prescriptions. Today we don't talk about "curing" AIDS, we talk about "ending" AIDS. The semantics make a difference.

In a similar parallel, I have several young adult friends who live with cancer, taking medicines similar to the HIV cocktail where the cancer lies in stasis, never worsening and never retreating. Is this a cure or the end result of better research, targeted therapies and molecular medicine? Instead of talking about "curing" cancer, should we be talking about "ending" it? Is the "cure" in the "chronic"?

With the dawn of the 21st century, it seems time to get with the times.

It should be recognized that the notion of cancer's "cure" has been summarily supplanted with more appropriate and relevant language such as "easing the burden of cancer with a goal of eliminating death and suffering." This was the new directive of the National Cancer Institute when it refocused it's original declarative, "to cure cancer" back in 2003. So, if the focus is now on prevention, early detection, better medical technology and quality of life (e.g. survivorship), where does "cure" fit into this?

It doesn't.

Is cancer the new HIV as HIV was the new diabetes? If so, how do we, as a society, reconcile that notion and reprogram our mindset from a 30 year "Manchurian Candidate"-style inculcation by the establishment that promised, as the old National Cancer Institute mission clearly stated, a "cure" for cancer?

"Cure" has unfortunately become nothing more than a catchy, exploited, arbitrary and abstract health marketing term that has lost all sense of meaning and purpose--and I am not alone in this sentiment. No one wants to lose hope but reality needs to settle in on what's going on in this country with cancer now considered by all measures of public policy to be a chronic condition and manageable disease.

Perhaps someday down the road a "cure" may take the form of individualized genetic vaccines, which enable our bodies to manage cancer cells more effectively and prevent them from spreading rampant. But we're still going to get cancer. It just won't be nearly as life threatening or life altering as it is today.

Here's more food for thought: Cancer is a naturally occurring biological process that is as old as evolution itself. It is impossible to cure it or end it, just manage and control it. Not to mention the fact that we direct most of our energies treating cancer's symptoms and not the causes that induce the process by which it overwhelms our autoimmune systems and spreads. The wildfire-like rise of cancer incidence over the past 20 years has brought shame and disgrace to the Nixon administration's declared "War on Cancer" from the early 1970s. (How's that going anyway?)

More so, the continued defunding of the National Cancer Institute budget by the current administration is yet another perfunctory slap in the face to the more than 10,000,000 American cancer survivors (and their 30,000,000+ caregiver network) who should be rioting in the streets in unification to demand answers and action on the part of the 2008 presidential candidates. Where do they stand on the issue? Hillary? Obama? Are you going to publicly promise to replenish the depleted NCI budget for 2009?

Frankly, I'm willing to bet that if Jenna Bush got cervical cancer tomorrow, George W. and his unenlightened cadre of myopic cronies might reconsider what he has done to decimate our hope in the government's prioritization of this public health epidemic.

Yeah, I said it.

I am a survivor because I choose to be. I wear my experiences like a badge of honor. I am proud of what I have been through and hope to encourage others to stand up, embrace their survivorship and shout to the rooftops, "I Am Still Here."

And when you're young, it's terribly isolating. If I have learned anything, it's that psychosocial support and access to those resources is as critical to survivorship as is access to quality care. It may suck, but at least you're not alone.

And one more thought. I hate when people refer to us as "victims." That's about as low as you can get. Seriously, what's wrong with you people?

Dear Media,
Never use that word again.
Love, Matt

As I mentioned before, cancer, at least for me, was not per se a death sentence. It was an actually nascent to a life sentence of vigilant self-advocacy in navigating the chronic (and hopefully) manageable diseases and health conditions that continue to befall me in the wake of my simply not dying from cancer 11 years ago.

Get with the program.

There are 10,000,000 of me living with, through and beyond cancer in the United States, 600,000 of who are still under 40 and have the rest of their lives to consider the impact of their survivorship long-term.

Think about what "cure" means to you and where you give of your time, talent and treasure. It's 2007. Has your charity gotten with the program?
 

Life is about choice.
Remission is not a cure.
Survivorship is all the rage.
 

I am still here.

You are still here.

This is why we fight.

This is life + cancer. No cure.

Thank you for your prayers. 


 

Fertility Olympic gold medal 1000 mm freestyle

By Geoff Eaton

As I sit to write this article, I have before me a press release dated February 28, 2006, titled "Sperm banking gives teenage cancer patients hope for the future."  This was forwarded by a survivor friend of mine and has been a source of wonder and laughter ever since.

To be honest, I couldn't believe that in 2006 someone actually needed to do a research study to find out that young guys would like the option to bank sperm before treatment kicks their ass and potentially kills all their swimmers permanently.

Having got that off my chest, you will soon find out that this article is one of the most satisfying, jammed-packed with joy articles I've ever written.

My topic today is fertility, I have written another article on this issue on our site and I talk about it all the time.  But today is different; this article is different.

Upon my diagnosis of AML (Leukemia) almost 8 years ago, I started treatment and ultimately had a bone marrow transplant before I was able to bank sperm, thus leaving me permanently sterile (if you consider 99.97 per cent permanent).  My previous article dealt with my life as a sterile young adult recovering from cancer.

This one is all about Geoff Eaton, the Olympic gold medalist. I'll explain.

Although I've been diagnosed with leukemia twice, had my life-time dose of radiation, two transplants and been told by a long list of health professionals that they've never heard of anyone's sperm returning after two transplants, this is the story of how my boys came back. 

Now it's not a medical story because I'm not a medical doc; but it's a great story, and the best part is that it's true.

To give credit where credit is due, throughout the last many years I've seen a few complementary healers (homeopath, naturopath, etc) and they've all felt that my boys would come back as I got healthier.

So I continued having sperm tests after my second transplant, always with the same result: nada.

Then in April 2005, I dropped off my little plastic cup on the way to work to keep my testing up, called in that afternoon to chat with my fertility nurse who said "Geoff you have 0.2 million sperm, with motility of 10 per cent!" I was jacked! Holy shit, how did that happen? This is still a super low count; but it's a number other than 0 and while the boys are barely dancing, they're dancing! 

I wait the standard 72 days and in July have another test, call in that afternoon and get a different nurse. It was the most awkward conversation of my life. I explain who I am and why I'm calling. She checks my record and says, "You have one sperm." I sit silent for a minute then say, "One."  She says, "One." I say, "Can you put that in context for me. On the last test, I had 0.2 million." Cutting me off, she says, "No, you had 200,000" (Obviously not a math major). I thought in my mind, "So last time did you count out all 200,000 and this time just the 1!?"

Weird call.

That fall, my wife, Karen and I get in to see a fertility doc to begin talking about our options for starting a family. We had a great chat but the doc reassures us that my sperm count is like we're using birth control; there is no way we'll have children naturally. Over the course of the last almost eight years, I have begun to love it when the odds are so strongly stacked against me. You'd think this would have been a clear indication of what was to come but not even I could grasp it yet.

Then I wait another month. December comes and a week before Christmas, I go drop off my plastic cup on the way to work and later that day, I call to check my results and talk to my regular nurse. She says, "Geoff, you have 0.3 million sperm with motility between 30-40 per cent!" Now, this is still a super low count but I've increased the count by 50 per cent in six months and motility is up 400 per cent; that's progress.

So I give my wife the good news and say, "Lover (not her real pet name), I'm going to take a few weeks off and then get tested again in three or four months." For those of you new to this game, before going for a fertility test, you are best to avoid hot baths and saunas for 72 days which has some connection to the production of sperm. I happen to love both and had been avoiding them. So over Christmas holidays, I hit the sauna every time I went to the gym, enjoyed our tub and then the strangest thing happened; without even knowing I was training for it, I won an Olympic gold medal in the 1000 mm freestyle, or shall I say one of my boys won!

Yes, a few weeks into 2006, just after my last positive but still super low test and a few weeks of hitting the sauna, one of my boys beat the odds in a way I never have before. He/she heard the start gun and gave 'er, albeit against a much smaller group of competitors than normal but that doesn't take away from the victory at all.

Today, Karen's belly is the biggest it's ever been, she looks the best she's ever looked to me and in another month or so, we'll welcome our little Olympic champ into the family.

So gents, remember, just because you've been given tough news about fertility, just because you've had tests that show your swimmers to be low in numbers, miracles happen!

Two years and counting

By Daniel Cronin

On August 13, 2004, the doctors told me that my cancer was in remission.  Everyone I knew congratulated me on the good news. The funny thing is I don't remember being overly happy that day. I think my non-emotional response was more of a defense mechanism than anything. I didn't want to pin all my hopes on the news given on August 13 because if the opposite news had been given, I didn't want to be of the mind set that all was lost. I also had been cleared before in the spring of 2003 and before that I was cleared in November of 2002 (the time of the original diagnosis/surgery). So I think I was of the mindset that even though the doctor told me that I was clear, I wanted to take a wait and see approach. 

As I write this article my cancer has been in remission for over two years--the longest I have been cancer-free since my initial diagnosis in 2002. Speaking to various medical professionals, I am of the understanding that the two year mark is a big milestone, especially for those such as me who have had a "reccurrence." Obviously, the further one moves away from the date on which they have been "cleared," the better. They tell me that the next big milestone is the five year mark.  At that point, a "reccurrence" of the cancer should be minimal (although not out of the question).

The past two years have been challenging. People who know my medical history always ask me how I am doing. I always say things are going well and then their response is something to the effect of "You must be happy that the cancer is behind you." I always respond, "Yes, I think cancer is behind me." However, what I am really thinking is that my cancer experience will always be a part of me and a part of who I am. Unfortunately, cancer (at least for me) will always be something that is lurking in the shadows. This is especially true when what I call "a life altering decision" has to be made; the thought of relapse is the first thing that comes to my mind. 

In the fall of 2005, two life-altering decisions were cast upon me. The first was the decision to purchase a house (with my common-law girlfriend), the second was the decision to change jobs. In the decision pertaining to the house, the first thing that came to my mind was, "What happens if I get sick again or worse, what happens if I die? Would my partner be able to manage financially?" In the case of the new job I thought, "What if I was to get sick again?" I would be in a situation where I would have to "re-tell" my story again to countless people at work. If I simply remained at the job I was in and become ill again, there would be an "understanding" as people would already know my medical history. These two decisions (a house purchase and taking a new job) are big enough as it is; however, these decisions (at least for me) are made exponentially more difficult when you throw in the issue of cancer and a possible relapse.

I am writing this article a few weeks before I am to go in for a scheduled CT/check-up--a time when the thought of a relapse is perhaps at its strongest. For the most part, I do not think about what I have gone through in terms of my fight with cancer; however, as I approach the date of every CT/check-up, I become more aware of my cancer experience. With every little ache and pain, with every little tweak in my body, I think to myself, "I wonder if it is the cancer is coming back." 

Once the thought of a relapse enters my mind, I quickly start to move down a slippery slope of "What would I do if the cancer came back?" "Would I have to go in for surgery or worse yet, more chemotherapy?" Would I physically and mentally be able to handle a relapse?" "I don't think my body can take anymore treatment." "I hate cancer!" Eventually, after a series of thoughts and questions, I usually end up with the following: if I am living with the constant threat of a relapse, why the hell am I not living for today?

This thought process doesn't get me depressed but it makes me wonder about how the cancer has changed me--or more specifically, how the cancer hasn't changed me. I come across other survivors whose lives have been fundamentally changed by cancer; however, this is not the case with me and I don't know why. My cancer experience (like many) was life threatening and the probability of death was (and still is) very real; however, I am essentially living the same life that I have lived before my diagnosis. You would think that such an experience would inspire a person to fundamentally change their life but for me it hasn't and I honestly don't know why. I am not religious but I have tried to find some higher meaning as to why I was diagnosed with cancer. I have thought to myself, "There must be a reason for this cancer experience." However, I have yet to find one.

I am fortunate to have made it past the two year mark. In some respects I feel unfortunate. I see other cancer survivors "making the world a better place" and, while I am inspired by these individuals, I don't see myself proceeding down such a path. I have a somewhat new perspective on life because of my cancer experience but in terms of everything else (e.g. employment, relationships, lifestyle, etc.), it is pretty much the same and I honestly don't know if this is a good or bad thing.

Fertility: “Oh yes. It’s a certainty” (Summer 2004)

By Geoff Eaton

The system failed me. And the worst part is that I was completely unaware of the issues at play. It's one thing to miss an appointment due to a scheduling screw-up, to have instructions wrong and need a test repeated or to have obstacles consistently thrown in your path unnecessarily. But this failure is something much different. It is something I thought I had dealt with but I now know it is an issue for me more than ever.

Today, I am sterile, despite last-ditch attempts to bank my sperm after two rounds of chemo.

Within a week of being in hospital, I was quite able to recognize the shortfalls in our approach to dealing with cancer. Throughout the course of my treatment, I more specifically noted the big-time lack of focus on the needs of young adults. When you leave the kids hospital, you are thrown in the "grown-up" hospital with all the 50-80 year-olds but you have a totally different set of concerns, fears, issues, and needs.

It is this massive void that has lead to the development of the RTC vision to inspire, inform and support young adults (15-30 years) dealing with cancer. We are founded on the belief that good things can always come from bad. In fact, our existence is that belief in practice.

There is a ton of improvements that I hope to influence in our collective approach to dealing with cancer but the issue of discussing fertility and a patient's options prior to treatment is one of the most important for me.

I was in hospital for six days before starting chemotherapy for my diagnosis of AML (Leukemia). I had a collection of tests done that week and a Hickman Catheter put in my chest, but there was no discussion about the possibility that I might be sterile from the chemo or from the possible bone marrow transplant that I might have.

The only way this topic even came up was through my request to see a Doc after reviewing a list of potential side-effects from bone marrow transplants. I was actually presented with the one-pager of info in a discussion with my doc and he ironically covered every bullet of info on the page except the final bullet which stated something along the lines, "transplant patients will be permanently sterile."

Upon reading that line, I immediately asked to see him at which time he assured me, "Oh yeah, it's a certainty."

Whenever I encounter a situation that I don't like, especially one that I don't want to live with, my mind immediately searches for a way around the obstacle. This situation was no different.

After my second round of chemo, I traveled to Toronto for a bone marrow transplant assessment and, with the help of local healthcare professionals, I got relevant info about sperm banking options. There were no options at the time in Newfoundland but there were in Toronto. So while going to Toronto for my assessment, I planned a one week stay when I would attempt to bank my sperm.

I was already sterile from the chemo. Shitty. But always the optimist, I thought I can get around this by waiting to have a transplant for, say, six months or however long it took for what was suggested as a "temporary" sterility from chemo to reverse itself. Then I could bank my sperm, have my transplant, and hopefully live happily ever after.

I learned pretty quickly that AML doesn.t work that way. You can't give it time to recover, I needed to maintain treatment (which was one more scheduled round) and then go straight to transplant. 

I was then forced to make the most difficult decision of my life. 

Have the transplant and improve my chances of a cure to 70 per cent (which means being in remission for five years) and willingly step into the world of sterility without having had the opportunity to bank my sperm.

OR

Not have the transplant and reduce my chances of a cure to 20 per cent and hopefully have my temporary sterility reverse itself and then live as long as I could without having had a transplant.

I took about a month to make this decision. When you are faced with huge decisions, I feel you want complete comfort with one of the options in front of you.  That's how I work but complete comfort was a luxury I didn't ever experience for this decision.

I ultimately decided to have a transplant and testing since has confirmed I am sterile. I have since had a relapse of my Leukemia and another transplant. The fertility nurse I connect with says she has never heard of anyone's sterility reversing itself after two transplants. 

I've beaten the odds tons of times since entering the "cancer community"in 1998.  I wasn't supposed to ever leave the ICU or be well enough to come out of my drug-induced coma in '99, but I did. I wasn't expected to be in remission past the fall or winter of 2003 but, a couple of days ago, I celebrated my third anniversary of my second transplant. Those odds don't discourage me enough to loose hope because I know there's always hope.

What really frustrates me is that this situation was very avoidable. A simple discussion that first week I was in hospital could have changed so many things for me both during my treatment as I tried to make my transplant decision and now as I build my life with my fiancee, who will be my wife as of New Year's Eve 2004. 

I have started to explore what happened that week I entered hospital. Why didn't anyone have that simple conversation with me prior to starting treatment?

I deal through doing. The other way I want to deal is to make sure every young cancer patient is aware that they should ask the fertility question before they have treatment. Check out the implications of your treatment, ask your doctor, make sure you know your options. Check out http://www.fertilehope.org; it is a great web resource for guys and gals.

My experience is hopefully a rare one but to make sure this happens as little as possible, please share this article with anyone you know who may be young and newly diagnosed with cancer.

Finding meaning

By Geoff Eaton

When you face a major challenge like cancer it is pretty natural to ask the “why me” question. I know I asked it for a long time, and at some level I’m still asking.

“Why me?”

I looked at the question from two main perspectives that were pretty much solely dependent on my mood that day. From one side I asked the question out of frustration because I was unable to do a lot of the things I used to do, like play hockey and soccer, shoot some ball with my brother, or even just be social and hang out with friends. My treatments for leukemia involved lots of chemotherapy and that really beat me down, both physically and also obviously killed my immune-system. While I was in hospital I was often sick and always pretty disconnected from the world and when I got out of hospital I did what I could but my activity was still significantly reduced as I tried to rebuild a little before going back in for more chemo just to get beaten down again. It seemed like a vicious cycle, but it wasn’t that vicious and it did end!

That was a major adjustment for me, reducing my activity level and disconnecting myself from my social circle. And it did push me to ask the “why me” question out of frustration.

However I also asked that question out of true curiosity. I really wonder, why did this happen to me!?

Why medically, as in what did I do in my life to create this disease inside me, what combination of factors lead to me developing leukemia? That was of interest to me at some level, but not a major concern.

The part of the question I still ask myself is the deeper side, the spiritual side of the question that gets me thinking about the purpose behind my illness. I honestly believe that all of our experiences have purpose, nothing is random, and everything has meaning.

I would say that I still ask myself that question because I feel that I’ve figured out some of the answers, others are there waiting for me to discover them. A lot of people ask me about Young Adult Cancer Canada (YACC) and do I feel I got sick because I was meant to start YACC. Maybe, but I don’t feel that way necessarily.

I like to believe that I would have been doing something that had purpose and was helpful to others whether I got sick or not. That doesn’t mean I’d be running a charity, but there are a lot of ways people can make a contribution to the community and help others. The meaning I’ve found from my cancer diagnosis and the amazing benefits have been more internal than anything.

This internal evolution has created many external changes in my world. Cancer has changed my perspective on life and all things in it, I have an appreciation for things in a way I never knew and I approach my life differently.

Before I got sick I was in a hurry, a mad rush to get there. Where is there? Not sure, but I was trying to get there quick. The reality is I would have never reached my destination for two reasons, I didn’t know what it was (I was a little unfocused we’ll say, and that’s an understatement) and the other reason is because I had little grasp of who I was as a person. I had no clue of my strengths and weaknesses as a person. I lived in fifth gear, rarely ever slowing down to “smell the roses” and evaluate what I was doing and where I was going. It just didn’t happen.

My challenges have pushed me in that reflective direction, which you can tell from reading my articles and emails if you have read others. (If not I’d encourage it, cause I feel I’ve learned some important stuff in the six years, and yes it’s almost six years since my original diagnosis) What has happened in these six years is that due to low energy and stamina I’ve had lots of down time, and while you can fill up your down time with Jerry Springer and Ricky Lake, let's face it, there’s only so much of that you can take.

So eventually I turned my focus internally, and while I still suck at understanding my feelings (I live my life in my head far too much, but I’m working on it), I made the effort to think about my experiences and think about why I might have been given these challenges. That train of thought took me to what others call “deep” places. I like to think of it as getting rid of all the crap and focusing on what matters most in life.

Love matters. That’s what I discovered. It’s not necessarily cool and definitely not a tough guy thing to talk about, but I’ve never been worried about being cool or tough. I went to those deep places to think about life, and let’s be honest when you are diagnosed with cancer you are truly wondering how much longer your life will be. So you have extra incentive to try and figure things out before you go, whenever that might be.

Those deep places, for me, don’t involve religion or God, not that there’s anything wrong if it does. But for me I had some things I need to figure out before I explore some of the traditional versions of how we got here and what our purpose is. Here’s what I’ve figured out, agree or disagree, you are welcome to do either.

There’s this huge force, I call it the universe, and it connects all of us. Everything here on earth, and all those things out there in space that we can’t see or touch. So we’re all connected, yes, even “W Bush,” Saddam, and Osama are connected to the rest of us. While we are here we can act from one of two main places, love or fear. We can’t come from both at the same time and after a while you can get pretty good at figuring out from which “pole” your behaviour is originating. For me, I’ve decided that I like how love feels, I like what I experience when I’m focusing on it, and I like what happens in the world around me when I’m coming from that place. So I’ve made the effort to do that. Sometimes I slip, other times I’m golden, it’s all part of being human really.

I’ve also figured out that if more of us came from a place of love, in our relationships, at work, with strangers, with ourselves, then our world would have more love. I take so many positives from my diagnosis of cancer. Would I have chosen cancer, definitely not, would I choose to erase it and start over, definitely not. Would I like another cancer challenge today, no thanks! But if it comes I know it will carry the right purpose, just as it has the past two times.

Pulling meaning and positive things from a situation that is viewed as such a negative has happened primarily through my search for meaning. And it is one of the best things I’ve done with my life to this point.

Shock of diagnosis

By Geoff Eaton

So there I was: a 22-year-old recent graduate from Memorial University of Newfoundland (MUN) who had started my own business helping companies with Internet marketing strategies. Out on a Friday night at a buddy's business reception helping him celebrate the opening of his spot. I was having this great conversation with a guy and felt weak in my gut, started to get the cold sweats and then just turned around to lay my drink on the table behind me and I passed out.

I woke up staring at the ceiling and hearing people tell me an ambulance was on the way.

I had been in an ambulance two times before, both with sirens going rushing to the hospital but neither turned out to be particularly serious. This time we had a relaxed ride, no sirens, no running red lights, just took our time and rolled into the ER for a "make sure things are ok" check.

I had blood taken, as a precaution, and was waiting to have my head/neck x-rayed to make sure I hadn't done any damage in the fall. But those tests were cancelled when my blood results came back.

Hemoglobin 75, platelets 20. What's up with that?

Those numbers didn't reach me until the next day or so and at that point they didn't mean anything to me anyway. I know now that hemoglobin is healthy at around 130-160 and platelet levels are normal between roughly 150-450.

My short stay that night moved into an overnight, then to two days, then three to five days, and on to a two weeks stay, and then ultimately to an undetermined amount of time. They like to slowly bring you into the new situation that you find yourself in. That adjustment in expected hospital stay happened in the course of 48 hours.

So I went in on a Friday night and on Sunday morning my mom, dad, and I had a meeting with my doc to discuss what was happening and that is when I learned the very significant news, that is when I knew the path of my life was taking a very sudden adjustment in direction.

As we neared the end of the conversation my mom very directly asked my doc, "what do you think is wrong?" To which my doc replied, "we think it is Leukemia."

I have no real memory of how the conversation ended but I do know that I was given six hours to leave the hospital, go home, and get some stuff and then I was due to check back in at 8 p.m. for an undetermined amount of time. I was to start chemo later that week and I knew that leaving hospital but I knew very little more than that.

The Simpsons
Do you remember the Simpson's episode where they go to the restaurant and Homer orders this dish that has to be prepared just right? The main cook goes out for a break and the junior guy is left to prepare this crazy dish that is either "poison, poison, tasty fish." Homer gets his meal and is then presented with the fact that the dish was prepared incorrectly and thus he has 24 hours to live.

Well that is kind of the situation I was in. I had six hours out of the hospital, once I went back in I had no idea if I would ever leave again. I knew I would start chemo later in the week and things would flow from there.

So facing six hours that could be my last out in the world I did the things I loved most. I went home to my apartment to get some of the things I wanted for my hospital room (music, gym pants, my pillow, etc). I also went to Signal Hill, twice, once with my mom and once with my dad. And I had some buddies over for supper before I went back into hospital.

The determining moment of the day for me came when I went to my apartment right after getting out of hospital. While I was getting my things I had a brief exchange with my roommate who asked "what's up," to which I replied "it's not good."

He didn't let me away with that. Steve, who I call Gunnar, came in my room and held me to task with the very direct question, "what do they think it is?" I can still remember kneeling on my bed, looking at him as he walked in my room. And the thing I remember most vividly was that I knew the one word answer to his question but it wouldn't come out. I kept trying to say it, it seemed like many minutes before it came out, I don't know how long it actually was but finally I said "Leukemia, they think it's Leukemia."

And as I spoke those words it was as if I this major weight was taken off my shoulders, the knife taken out of my back and literally in that instant my whole perspective switched and I started to say to my inner self..."yeah, they think I have Leukemia and I can f*cking tackle that!" With the voicing of those words "Leukemia, they think I have Leukemia" my whole world change, again, and began to wrap my mind around this massive challenge I had been handed. I entered hospital that night at 8 as expected and I remember going up the elevator with my parents and feeling as though I was walking to the ice before a big hockey game. And I decided that feeling, that mindset was exactly what I wanted in my approach to dealing with big-time challenge.

From there I developed my hockey strategy, which saw me approach each round of chemo like a game in a play-off hockey series. I had, and still have, an official puck, stick, jersey, and cup.

Researching your cancer

By Krista Hong

Cancer. A tough word for some to understand. To others, just an every day word that they deal with constantly, and hear every day.

I always knew what cancer was, it's just that I had never taken the time to really read into it. I knew it was a disease of many. So many different types, some were curable, some were not.

When I walked out of my doctor's office after being diagnosed with lymphoma, aside from telling family and friends, I sat down in front of the computer for at least two hours looking up information. There was so much to take in. All I knew was that I had lymphoma. I didn't know if it was Hodgkin's, or Non-Hodgkin's. I didn't know what stage it was in. I just read EVERYTHING at the time.

After having a visit with my Hematologist, and finding out that I had Non-Hodgkin's Lymphoblastic Lymphoma, that was in the fourth stage, it was a bit easier to get the right information.

Thank God for the Internet. There were so many sites, with so much information. I read and printed off loads of stats, stories, etc. Whatever I could find that was interesting to me. And also anything that would help me prepare both physically and mentally for what I was about to encounter over the next few months.

Each time I made a trip to the hospital, I was faced with many different words, and phrases that I had no idea about. I used to ask what it all meant, and get a very simplified version. I don't like when things are simplified. I like DETAIL. So of course, when I got home, I'd hit the internet, getting more and more information every time. I found out all about red blood cells, and white blood cells, and platelets, and biopsy's, and C.T scans, etc. So much stuff! But it was stuff that I felt I NEEDED to know.

Soon enough I was well educated about my disease, the drugs I was on, tests I would undergo, and anything else that went along with it. I could have written a book. When I saw the doctors, I would fire questions at them, and they'd be blown away at the vocabulary I was using. They actually said that they were going to re-check my birth certificate because I seemed to have too much knowledge for my age. (Funny guys!)

I have got to say, researching your disease, in my opinion, is one of the best ways to help you through. I have read so much information. Both bad things and good. Sometimes the bad is bad, but honestly, it's better to know then to not know. If I hadn't have read and researched about my cancer, I feel as if I would be nowhere right now. You need to be able to throughly understand anything and everything that will and can happen. Not only for yourself, but for others. Many people will have questions, and you will want to be able to explain as best you can.

To this very day, I still research about my cancer, and everything that comes along with it. I am scheduled to undergo a stem cell transplant soon, so I'm on top of all that now. Doing all the reading I can about what will and can happen, and also reading other people's stories, and HEARING other people's stories.

Without research, not only through the Internet, but through word of mouth, I'd be lost.

The continuation of my journey

By Krista Hong

The last few months have definitely been a huge roller coaster ride. Things have been up and down constantly. Let me give you an update.

As you know, on March 23, 2004 I was diagnosed with a type of cancer called lymphoma. A week later, after meeting with my Hematologist, I was given a more detailed form: Non-Hodgkin's Lymphoblastic Lymphoma. 'Nuff said. That day, during my meeting, I was immediately admitted into the Health Sciences, floor 4 north A. I had no idea what to expect.

After spending one night in hospital, all the procedures began. I had a bone marrow biopsy done (which may I add is not that pleasant), plus I had a hickman catheter put into my chest. This catheter is what all of my blood work and treatments would be done through. I was put in hospital on a Wednesday. On Saturday, I would start my first round of chemo. Part A!

My room was constantly filled with family and friends. It was excellent to see how much support I had, although it was very tiring.

For four days, I underwent treatment. I believe it was a Friday when I was discharged. I went home feeling fine, but of course, slowly, things stared to drop. I became tired, and weak, although I wasn't sick at all. I guess those anti-nausea drugs they give you to take really work! It's just that the chemo had started to make all my blood counts drop. Nothing unusual.

The next two weeks I was back and fourth to the hospital for blood work, and then two weeks later, out came my hair! It started to fall out, so I said, "alright, enough of this" and I shaved it off. I'll be honest, it didn't bother me the least. It was almost a relief because when your hair starts to fall out it hurts!

Once I started to get my energy back, BOOM! admitted back in for Part B of my treatment. Another smack at the cancer cells! Four or five days in hospital again. Once I was out, I felt good, and once again, a few days later, I was tired and weak again. After about five days, I was put back in hospital with a fever. That's something that's not uncommon either.

A fever usually indicates an infection somewhere in the body. When the chemo starts to eat away at the cancer cells, it also eats away at your good cells, such as your white blood cells that help to fight off infection.

So, I was in hospital on antibiotics for five or six days. Once my blood counts were up again, and my fever was down, I was out.

I have managed to undergo three full rounds of my regularly scheduled 4 rounds of chemo so far. Lots of trips in and out of hospital, lots of antibiotics to be taking, and lots of tests being done.

Just recently I had visited Halifax for assessment about a stem cell transplant. While there, after meeting with the transplant coordinator and doctor, I was told that a transplant was no longer in my recent future.

The doctor had said that I was responding to my treatment, and that his opinion was to go on with my last round of chemo, and go on a "maintenance" program.

I'm not really sure what exactly "maintenance" is, but I do know it's still chemo treatment I would undergo for up to two years, but it would allow me to go back to school, work, etc. The doc said that once all that was over with, if my cancer had not gone away, or if it came back, THEN I would have to have a transplant. He saw no reason to put me through a transplant and its risks if I was doing well. Apparently 30-50 per cent of people have life-threatening complications when they undergo this type of transplant. That was that.

I was happy enough. Not only would I not have to go away for up to three months for a transplant, but I was closer to getting my life back to normal.

But that's when things changed.

As soon as I returned home from Halifax, the very next day, I woke up with pains in my joints, just like before, and all the lymph nodes in my neck were swollen and big again. GREAT! Just what I needed. I went to see my doctor and informed him of what had happened. I'm sure you can guess what he said. It was something along the lines of, "Well obviously your chemo isn't working the way it's supposed to. We'll have to contact Halifax and let them know the situation. I think the only thing that will work now is a transplant."

So here it goes again! As of right now, I just finished another round of chemo. New drugs. They decided to change from the ones I was on because they weren't working. They are hoping these drugs will stop my cancer from spreading for now. Long enough to get me to Halifax again. I am scheduled to go the beginning of October for a transplant. I will admit that it's nerve racking and extremely scary. There are many risks involved with this transplant, but I am trying to best to prepare, both mentally and physically. I know the next few months are going to be rough. I'll be away from home, away from all my family and friends, and may not even be home for Christmas. But if that's what it takes for me to get better, then let's go!

I'll keep you updated the best I can within the next few months. Wish me luck!

50 pounds from my fighting weight

By Geoff Eaton

I was diagnosed with Acute Myeloid Leukemia at the age of 22, just before I turned 23. I had graduated from university six months earlier. I stand at six foot five (too inches shorter than my little brother) and I was athletic my whole life, mostly playing hockey with soccer and basketball coming second on the priority list. I was generally an active person and loved being so.

What I'm trying to say is that I was a pretty big kid weighing in around 220-225 at the time of my diagnosis. Now I wasn't in the best shape, my physical fitness definitely peaked in my senior year of high school I'm sure but I could still get myself up and down the ice. My 220 was pretty evenly spread throughout me although I'm sure it would have taken dropping a good five-10 pounds before there would be any sight of seeing a "washboard" stomach.

Today I am tipping the scales at about 170-175, or barely measuring, depending on how you look at it. That's 50 pounds down from my "fighting weight," i.e. 50 pounds away from what I felt was a really comfortable weight.

Now don't get me wrong I don't need or want all of those 50 back, but I can tell you that 15-20 would be nice. And they have to come in the right package, I'm not going to sit down and eat ice-cream for a month to get there.

My first round of chemo involved a combination of seven days (24 hours a day) of "Ara-C" with three days of "idarubicin" for an hour each day. Then I was in hospital for 38 days waiting for my blood counts to recover. In that time I lost about 25 pounds...gone, vanished.

I left hospital after having a month of next to no activity, despite the fact that I had a collection of day passes towards the end, I was really beaten down, or so I thought. Later in my challenge I would learn what getting "beaten down" really meant, but to this point that was a major adjustment.

The biggest things I found were my energy. I didn't have the physical stamina I used to and while my body recovered pretty quickly, I just had so much less muscle to work with that I really had to make major adjustments to my daily approach. I was only out of hospital for a couple of weeks before starting another round of chemo so I wasn't too focused on rebuilding muscle, more on doing the things I loved and enjoying Christmas as it was that time of year.

The other major thing I found about loosing weight was my body temperature. Man I was freezing so much of the time, I had to wear more clothes wherever I was and this was enhanced by the fact that I also had no hair. I had this great set-up at my dad's house where I had my own room and a TV room adjacent to my bedroom and I would keep those rooms so warm others would be peeling the clothes off when they visited.

I don't know how that winter of 1998-99 ranked as far as low temps for Newfoundland but it was the coldest ever for me!

Losing lots of weight, which I had never done before, also comes with another interesting adjustment:your clothes don't fit. All of a sudden I was back buying jeans with a 34" waist and while most of my shirts and sweaters still fit you could obviously tell that I was swimming in them a lot of the time. For a long time I refused to get my clothes adjusted but I finally gave in with my dress pants and had the waist taken in as I realized I wasn't going to put this missing weight back on instantly.

I have been out of treatment for almost three years and I'm still struggling to put some pounds on. I know the situation is my own creation as I have chosen to do other things with my energy than work-out and rebuild my body (i.e. I work too much).

Growing up I never really had to work at it to stay in shape because I was always so active that I was in good shape. I had my summers when I would get to the gym but it was more a social thing than a necessity or something I did with a specific goal in mind.

Things have changed today as I'm at a place where I need to the muscle building that you get at a gym (or in other ways) to get myself to a baseline level of strength that will allow me to get back doing so of the things I love like playing hockey and soccer.

It's going to take another major effort to push myself to the next level of physical fitness that will get me back on the ice. And I'm slowly putting it as more of a priority for me.

Talking to a shrink

By Geoff Eaton

To clarify, by “shrink” I mean a Psychologist, Social Worker, Guidance Counselor, or any trained professional who deals with the emotional and social sides of dealing with cancer.

Have I ever seen a trained psycho-social professional? Yes, lots of times.

There were/are two ladies who played significant roles in the emotional side of my approach to dealing with cancer. One was in the purely professional capacity the other is a professional but more a friend to me. Both were helpful.

I was diagnosed in November of 1998 with AML (Leukemia) and after chemo and a bone marrow transplant, which I had in Toronto; I got an infection that resulted in me spending a month in the Intensive Care Unit (ICU). I was in a coma for three and a half weeks and when I woke up I basically had no idea where I was, how I got there, or why I couldn’t move my body. I had been beaten to a snot by the infections and while my docs gave me really really crappy odds of ever leaving the ICU, I did just that three days after being brought out of my drug-induced coma.

From ICU I went to 4 North A in the Health Sciences Centre in St. John’s. I still had no idea where I was, what had happened or why my muscles had dissolved to nothing. After arriving on 4NA I saw a Psychologist because everyone seemed to know that there was something “not right” about me. I talked really slow, like Forrest Gump actually, and I asked the same questions about what had happened to me over and over again. This “mind doc” came to see me and ultimately diagnosed me with “ICU Psychosis,” which as I understand is a state of mind that results from being in Intensive Care for a long period of time.

If you think about it, I was in the ICU for a month, three and a half weeks of which I was asleep. I never went outside, never saw the sun, nothing for a month. Without all the infections, mountains of drugs and medical stuff going on you’d probably be confused at the best of times. So this doc would come to see me and the strangest thing would happen: I’d shut up. She’d come in just as I was talking with my mom or someone, still in my Forrest Gump like state, and as soon as I’d see her I’d shut up. I wouldn’t talk to her, never did in fact, until months later when I went back to see her long after I had gotten out of the hospital.

She would lean on the side of my bed and ask me questions about my stay in ICU, if was I afraid, how did I sleep, and all the time I remember thinking in my head… “lady, I know the answer to these questions but I’m not telling you!”

That was a pretty extreme time in my life and the choice to see a psycho-social health professional was made for me.

But the more meaningful experience I had with “shrinks” (or those trained in similar fields) was with a friend of mine who is a guidance counselor. I can’t imagine how I would have gotten through my cancer challenges without her. Her ability to listen and understand what I was trying to explain and what I was feeling inside made such a huge difference in my life. Her ability to guide me to a place that felt better and show me some tools to help me help me, those are special gifts to give to someone who is struggling as I was.

Some people may feel uncomfortable with sharing so openly, especially if it is someone they don’t know. And while I’ve also had experiences with professionals who aren’t as “tuned in,” I have found that when you find someone with which you can connect, it makes a major difference in your life.

If you are facing a tough time right now and feel as though some emotional and social support would help I have say it made a big-time difference for me.

I still suck at talking about my feelings a lot of the time. But I’m hopefully getting better and I know that I’m way more aware of who I am as a person and what I like and what I don’t like. Simply, I’m much better for having had a counselor to help guide me through the tough spots and to share the smoother spots.

Learning to walk

By Geoff Eaton

Imagine hanging with your buddies on a summer Saturday night and then rushing to the emergency room at 3 am with a fever three months after a bone marrow transplant.

Imagine you woke up one day and had no idea where you were.

Imagine you woke up and had no use of your body, no muscular control.

Imagine waking up in hospital, having no idea how you arrived there and no idea why you can't move your body.

Imagine not being able to give your brother a high five, shake your dad's hand or give your mom a hug.

Imagine you are 23 and learning to walk again.

It was one of the toughest physical challenges I have ever faced. At the age of 23 I did learn to walk again. And let me clarify, it wasn't that I didn't know how but more that my body had no strength to carry out the commands from my mind.

As I recovered from a bone marrow transplant three months earlier I was blind-sided with an infection in my Hickman Catheter and ended up in Intensive Care, on life-support, in a drug-induced coma and paralyzed for three and a half weeks. I was in the ICU for a month, most of which was spent in a coma, and when I woke up it was to a whole new world and a whole new batch of challenges.

I could hardly move. Lying in bed I remember running my arm up my body from my waist to my chest. My challenges were huge, both physical and mental.

I had no idea where I was and more specifically absolutely no memory of what had happened. Thanks to the massive amount and number of drugs I had received I was seriously mentally delayed and had very little capacity to grasp where I was yet let alone what I had been through.

I started with the basics: Where am I? What happened? I asked those questions consecutively for days until they were firmly planted in my head. I was later diagnosed with "ICU psychosis" which was caused by my lengthy stay in the Intensive Care Unit.

I left the ICU three days after waking and went to 4 North A, the Oncology floor of the Health Sciences Centre in St. John's, NL. But after a few days there my mind wouldn't allow me to stay. I was mentally and emotionally unable to stay in hospital. I was afraid and wouldn't sleep. My new temporary twisted logic lead me to believing that if I went to sleep there was no good reason why I wouldn't be asleep for another month. As in my mind the last time I went to sleep it was for a month and I woke up in really bad shape.

No explanations or reassurance from anyone could convince me otherwise.

Just a few days after moving to 4 North A I looked at my mom and said "I need to go home." And with those words I opened up a can of "whoop ass" on the healthcare bureaucracy of the Healthcare Corporation of St. John's. Three days later I would leave the hospital in a wheelchair, 100 per cent dependent on my family.

I left the hospital on a Friday and the day before we had a test-run to see if I was able to physically get in a wheelchair and then out of the hospital and into my dad's van, or would I need an ambulance to get home. We got me in my dad's van and the first place we went was to Signal Hill on what was an awesome beautiful sunny August afternoon. I have a fond vague memory of the trip. The next day I went home to my mom's to continue my long road of recovery.

My rented hospital bed at home was the site of my first major rebuilding accomplishments. My rebuilding didn't involve going to the gym, lifting weights or playing hockey as I had done my whole life. The first stages of my strength training used my electric back on the hospital bad and the rails on either side of me. I would raise myself half way up and then use my rails to pull myself upright. I did these pull-ups every day and eventually was able to lower my bed further and further down, pulling myself further and further up. Finally I was strong enough to hold myself in the up-right position.

I had this walker to help me get my stride. The damn thing was too small and I never liked it but it did help me get around the house a few times. But my focus was clear in those first weeks home from hospital: "Get back on your feet."

And on September 20, 1999, just two and a half weeks after leaving the hospital, I pulled myself up and off my bed and then made a big five-step journey from my hospital bed to my couch. It was a moment of incredible triumph for me tempered with a harsh reality, as I ended by trip by sitting down on the couch and then found myself literally swallowed by its softness. I was trapped in the couch and had no strength to keep myself upright nor get back on my feet and make my way back to bed.

While I knew I had a long way to go to get back to basic physical functions on September 20, 1999 I made the first small but very significant steps towards restoring some of physical presence I had lost through my chemo, transplant and ICU experiences.

In 2000, the year RealTime Cancer was born, I decided to mark the anniversary of those first steps by climbing Signal Hill in St. John's. I invited my friends and family and some email buddies to join me and on September 20, 2000 I along with 170 supporters climbed Signal Hill in the first RealTime Cancer Climb. It was one of those experiences you never forget. Since 2000, we have held the RealTime Cancer Climb with a growing group of supporters. The Climb has grown to other places as well through organized Climbs in places like Halifax, Nova Scotia and St. Anthony, Newfoundland. And perhaps the most unique part of this event is that individuals and smaller groups climb stairs, hills, and even mountains all around the world from Mt. Logan in Alberta Canada to Japan.

The Climb started as a way for me to mark the significance of getting back on my feet after the major challenges faced while in ICU. As we head into the fifth RealTime Cancer Climb it is important to note that this event is about so much more than the anniversary of me taking my first steps after leaving ICU. The Climb has always had at its core that "never give up spirit" and the true belief that "miracles happen every day" as when I was in ICU my Docs gave me less than a two per cent chance of ever leaving. But I left!

The Climb is about so much more than one guy's cancer challenge, it is about tackling a challenge, either on your own or with a massive group of supporters. It is about representing loved ones who aren't able to make the Climb right now due to effects of treatment. It is about remembering those who have faced a cancer challenge and are no longer physically with us. It is about connecting to this huge pool of positive energy that surrounds RealTime Cancer and helping us go forward to keep reminding people that love and support make a difference and all our challenges have opportunities contained within.

Dependency

By Geoff Eaton

For some the dependency vs. independency thing isn't that big an issue but I've always loved independence and responsibility.

Getting diagnosed with Cancer at the age of 22 (a week before turning 23) totally changed my life as it relates to independence and responsibility. Being presented with cancer at a young age comes with major obstacles and I can only imagine how tough it is to also have a young family depending on you. I wasn't at that stage thankfully but instead I had an awesome family there to support me.

I had just graduated from university and moved out of my parents' house six months before my diagnosis. Man did I love living on my own. But moving home was definitely the best step for me. I was in hospital for 38 days during round one chemotherapy and it kicked the shit out of me, or so I thought at the time (I later learned just how a shit kickin' felt). The physical pain and infections weren't too bad but I lost about 20-25 pounds and my energy tanked. So when I left hospital I really needed the support of my family and was blessed to have had it.

This was an ideal set-up in the short-term but my desire for independence would kick in every now and then. And when my mind would wander I tried to focus on what was most important and that is where I tried to put my energy. Sometimes this was a great theory that sucked when applied, but generally that's how I approached things.

My treatment and recovery lasted a long time. I had three rounds of chemo, a bone marrow transplant, was away for three months from home for that, and then upon returning home got an infection that put me in Intensive Care for a month in a coma. By the time I had mildly recovered from that run of experiences it was 18 months after my diagnosis. I was over 50 pounds lighter, a whole lot weaker and had a few massive complications from my treatment and related experiences. This combined to make independence that much more of a challenge. Around 21 months after diagnosis I made what turned out to be my second of three "moves out" from my parents' house.

Getting back that part of my independence was a major step. It is satisfying to take care of yourself and through most of my cancer experience that was tough for me to do. I always tried to be appreciative of the huge efforts my parents and some buddies made to help me out but it was one of those situations that you were grateful for but didn't want at the same time. Help doing the smallest things made the biggest difference for me. I'm what I like to call a "proactive patient," which basically means I'm a big pain in the ass for docs and nurses sometimes, but I always qualified that with "hopefully I'll be equally rewarding!"

I felt that it was important for me to be an active participant in my treatment, so when it came to any significant decision it was all me. I found mostly the independence that I had to let go of was physical and financial, which are tough to accept when you are a young adult.

I think another big factor that helped me get through it was picturing things on the other side of treatment, or how I'd be in the future. I had my tough times and moments when I was afraid and sad but generally for the most part I never doubted if I would get through to the other side.

This Chinese proverb wraps up my mind set relating to dependency in tough times: "Be like a blade of grass, rooted, yet wiling to lean."

Why I shared my story

By Geoff Eaton

Why would you want to open up and share an incredibly personal, intimate and challenging life experience with complete strangers? Why share your experiences, lessons learned and perspective as you work through any of life's challenges?

In a few words, to help yourself and others.

I started an email group during my first week in hospital after being diagnosed with leukemia. Initially I had two things on my mind. One was that I didn't physically have the energy to stay in contact with my friends and family who wanted updates on my condition and the road ahead. An email group allowed me to write them all in one message. It was also something I could do when I had the energy and desire, both the sending and receiving of email. It made so much sense and allowed me to stay in touch with those who cared.

The second reason was that I had this feeling in my gut that I was going to experience some amazing things, both those that were "good" and "not so good." And I felt I wanted to share those experiences and the lessons I learned as a result. This was one of the most significant decisions I have ever made.

As I look back and now recognize that while keeping people updated with as little energy as possible and sharing my experiences were my two conscious reasons for sharing my experiences, there was another below the surface. My email group also served, and still serves, as a major support system for me. There was no place for me to connect with others experiencing the same things I was so I relied on those closest to me, even though they weren't young cancer patients. Their perspective and support made a huge difference in my life.

So I opened up, sharing the ins and outs of hospital, chemo, bone marrow transplant, nurses and docs, medications, side-affects, my thoughts, fears, feelings, it was all out there and still is really. You can read all of my emails from the start in my blog titled My Journey

Anytime you open yourself up and share your perspective on something you are bound to have those who agree and disagree with you. And that's ok, it's natural. I think it was Bill Cosby who said, "I don't know what the key to success is, but the key to failure is trying to please everyone."

I felt a really important part of sharing was to tell my truth, the honest perspective that was mine and I still do that. And I have learned and experienced first hand just what happens when you open up and be honest with people. Most often they respond with openness and honesty themselves.

In addition to my email group, I've chosen to share my story in the media and with thousands of students. People respond to honesty. There's no real magic to sharing your experience other than doing it, that is the magic. I often wish that everyone could experience what I do when writing an email, doing an interview, giving a speech and then receiving feedback from the audience. I used to call it "completing the transaction." Having said that, from my perspective the sharing is the reward, putting your perspective out there for others in an open, honest manner, that is one of the best experiences I've had. It is really nice when people respond to that honesty.

I know that being open about what can often be very private experiences is not for everyone but I do believe strongly that sharing our challenges and triumphs is an important part of learning and growing from our experiences. Complementing our own learning is the learning that others may gain from your experiences. Some lessons in life we have to learn through experience but many are taught to us by others who have the benefit of experience.

I realized a long time ago that often times there's nothing special about my sharing other than the fact that I'm still here to share. Sometimes that is the most inspiring thing I do is just be here. Especially to someone who is struggling through a challenge that appears insurmountable. Many times the most inspiring thing for a person dealing with a tough situation is to connect with someone who has been where they are and came through it. That alone is reason for us young people who have dealt with cancer to share our story, so those who come after us know that you can make it through.

That doesn't mean you have to go to the newspaper and tell your story to the world, but I would encourage everyone to share their story, you can make a difference in the lives of others, and isn't that one of the main reasons we're here?

 

Prednisone

By Heather King

Prednisone is prescribed to patients who undergo stem cell transplants to prevent the body from rejecting the "new" stem cells. The following are some of my experiences with this drug:

Prednisone is part of a class of drugs known as corticosteroids, and is similar to cortisol, a steroid the body produces naturally in the adrenal gland. That is why my doctor has taken care to lessen the dosage of my Prednisone gradually. The body stops or decreases its own production of cortisol, and slowly tapering the amount of Prednisone taken daily allows the body to begin producing it again on its own.

I had a stem cell transplant to combat Non-Hodgkin's Lymphoma in November of 2004. My father's stem cells were used for the procedure. My original dose of Prednisone was 60mg, which started after I had my stem cell transplant.

Although I am listing below a number of side effects which I personally experienced, everyone is different. None of the side affects which I experienced caused me a ton of grief. All were very bearable in the scheme of things.

Blurry Vision: this was occasional and not severe, almost felt like I needed eyeglasses (I actually have 20/20 vision). I only encountered blurry vision off and on for about the first two weeks while on the drug.

Rounded, fuller face: My face became more plump looking.

Peeling Fingernails: This does not hurt, my nails simply peel from the bottom cuticle upward. To combat this, I used hand moisturizer after each time I wash my hands (which is often) and keep them cut short.

Difficulty Sleeping: I did experience some difficulty falling asleep at night for the first few nights while on higher doses. This was rectified by sleeping pills. I did not need sleeping pills for more than a few days.

Extraneous Hair Growth: This is one side affect I could do without, especially since I am a female! Unwanted facial hair! I have had some unwanted facial hair grow by my eyes, in the "side-burn area," and above my lip. I am told that this may fall out once I am off the medication, but we'll see if that actually happens. Otherwise, I guess it's off to the spa for some laser hair removal later on!

Mood Swings: Like crying. For the first month or so, I cried a lot (daily at one point). This was partially due to the emotional roller coaster of going through a transplant, and partially because of Prednisone. The best part about being on Prednisone was the feeling of wellbeing that I experienced later on. I had lots of energy in the beginning. I did experience mood swings from time to time, but that is kind of normal for me so not sure if that was actually the drug or not!

Hunger: I have never enjoyed food so much in my life! They say that when you are on Prednisone, "if you eat when you are hungry, you'll be eating all of the time!" I ate lots of healthy snacks and have managed to maintain my normal weight so far. I found that as the Prednisone was reduced, I had a decrease in my appetite (this is normal). I had to force myself to eat the same healthy foods I was eating while on higher doses, since I did not want to lose weight or strength. I was not nauseated, so I was able to make myself eat by choosing foods I really liked and giving myself lots of time to eat.

Once my Prednisone was reduced to 5mg, I experienced mild muscle pains in my arms and a little fatigue. Even if I got 11 hours sleep at night, I still found that I became sleepy throughout the day.

A word on walking: A radiation nurse once told me a long time ago that even though fatigue is a common symptom for many patients undergoing cancer treatment, many people find that walking really helps them feel better. I have learned that the same is true when you are on Prednisone. Although Prednisone is known to give you a euphoric feeling, or a "boost of energy" in the beginning, it may, as it's reduced, cause fatigue. I experienced fatigue once my Prednisone was reduced to 10mg and less. I continued to walk six days a week for only 20-30 minutes per day. There were many days when I had to "force" myself to go for a walk, since I was feeling tired or "not in the mood," but I ALWAYS felt like I had more energy after the walk. Walking even lifted my mood! I also believe walking prevented me from experiencing some of the crippling side affects which some other patients experience when coming off of Prednisone. I've been told that some patients can barely walk due to muscle and joint pain as they come off this drug, but thankfully I did not have that experience. I like to think this is due to my diligence in walking. I like to walk outdoors, even when it's really cold and the middle of winter, I dress accordingly and hit the sidewalks!

Security of the hospital

By Geoff Eaton

 Some people get sick when they are in hospitals, and by sick I mean a bad feeling, a pit in their stomach that is generally associated with things unwanted. It's almost like a taste aversion where you associate bad things with a given environment (or taste). And many hospitals have such a bad smell that you feel as though you can taste them.

The other side of that coin is that some come to love the hospital, or at least they can love being in it for in the hospital lies a level of security. It is a safe place from many perspectives and at critical times of treatment you often wouldn't want to be anywhere else.

As it happens I have experience with both the aversion, to a specific part of the hospital, and also that feeling of comfort.

I was extremely lucky as for most of my treatment I was home, in St. John's, and I live about a seven-minute drive from the hospital. If my temp spiked or anything went wrong, which happened more than once, I was a few good snowball throws away. For my transplants which I had away, the first in Toronto and the second in Ottawa, it was a similar situation. Though the trips to the hospital were certainly more involved in the bigger cities.

The most significant times when my security was tested involved weddings, one for a good friend of mine and the other for my brother. Each of them happened in the two year period after my second transplant. That was a time when I was very focused on having my second remission outlast my first, something most of my docs did not expect to happen. Given those predictions I was extremely cautious and also put a lot of energy into pushing away my fears in hopes of getting to the "new territory."

My friend's wedding was in August of 2002 in North Carolina and I was booked to go and spend some time down south with friends celebrating. The morning I was supposed to leave I felt this bad feeling in my gut. I wasn't in pain; it was my intuition, or my fear, telling me that maybe I shouldn't go. I played with it for a while and after an hour or so I decided that it was better to err on the side of caution.

What would I do if I got sick down there without any medical insurance? And getting sick could range from really sick and Intensive Care like I had experienced in 1999 after my first transplant or just mildly sick but still requiring hospitalization as had happened many times before. Those possibilities all came with huge financial implications that weren't good.

I let my fear control me. I don't know that it was a bad move, but the short story is that I wasn't comfortable taking the risk. I don't know if it was the right decision in hindsight, but at the time it certainly was and I guess that is what really matters.

I was faced with this same kind of situation for my brother's wedding in Cuba. This time I was further away from my second transplant but still not near enough to that magic mark of two plus years, when my second remission would become longer than my first. Given that it was my brother's wedding I wanted to be there really badly but the stakes got higher as I wouldn't be going to the US and a similar healthcare system. Cuba, as I understand, is a very different world.

Another thing playing with my decision at the time were stories from people who had been there that getting medical attention took days often times as opposed to hours. Doctors were rare and nurses did most of the care. That weighed on me heavily as I played through scenarios in my mind that would see me get sick and then try to get a flight home. If that happened, who would come with me, would that totally mess up the wedding week, how long would I be there before I could get home?

Again the summer of '99 and my very quick deterioration after getting an infection was top of mind. I played with the possibility of that worst-case situation and how we would deal with it.

I didn't go and again I look back and wonder if it was the right decision. All I can say is that at the time with the information I had and the feelings I was feeling it was right for me.

Having medical attention down the road from your house is a luxury and I have friends who had to travel and even live far away from home for the vast majority of their treatment. I'm talking about years not months away from home. The security I felt from being close to the hospital was really most noticeable when I was faced with the decision to move away from it. I took it for granted because it was always there.

The further away from treatment I am the more comfortable I am. I remain in second remission and have just celebrated the third anniversary of my second transplant on October 10, 2004: An anniversary that many never thought would happen.

The more I open myself to the therapies and treatments available that I feel can help me prevent another relapse that more comfortable I feel that the hospital isn't my only option for better health but also that my plans of not relying on it too significantly is a possibility.

My plan is to have my visits to the hospital be 99 per cent social visits, one per cent check up to make sure my blood remains healthy.

As my time in hospital drops both in frequency and quantity I am more comfortable being away and don't need its security. And that is a great place to be.

Smooth, shiny, and feminine

By Soleil Labelle

Losing your hair is not something most young women think about. When I was diagnosed, I shaved my head the night before I started chemo. I used it as an excuse: I needed to be in control of something and that seemed the only thing I could do.

I don't regret it, although I did shave it the same summer that GI Jane came out (with Demi Moore) so I did get quiet a few nicknames that summer (so instead of taking it to heart, I bought myself a tight army dress!)

I had fuzzy bald patches on my head after getting chemo, so I would shave it (crew cut with clippers) every two weeks or so (thanks to my male friends with the clippers!). I did get a wig (which I used to take off and put back on in public to shock people--my way of dealing: not to be done around people with weak hearts!).

I then stopped shaving it when my chemo stopped (six months later) and my hair started to grow back curly and very soft. I loved having that "wet hair feeling" which was something I never thought about until it was gone.

Another eight months went by and I had hair! Well short, soft, and curly hair. I was then diagnosed a second time. I really didn't want to shave my head again, and the biggest reason was that my best friend was getting married and I was her bridesmaid. I had vowed to have hair for this wedding!

After one week of intense chemo every 12 hours, my hair really started to fall out. It hurt so much. The only feeling I can describe to you is when your hair is in a pony tail and when you take it out after a really long time, times that by a hundred.

I did get a couple hours leave from the hospital to attend the wedding, which was lovely. I got ready in the hospital bathroom with my purple dress and my silver shoes and felt like a captured princess leaving the hospital waving "goodbye-see-you-in-three-hours" to the nurses!

My hair was falling out in lumps in the shower and there was hair all over my pillow when I would get up. It was a terrible feeling. After the wedding I asked my dad to take me to a hairdresser to borrow the clippers and got rid of all that thin hair. I felt liberated afterwards, and it is funny how the pain disappears!

Since I had never really had such a smooth head (as the year before I had a mini crew cut (picture stubble on your head!), I decided to take advantage.

Ok so the hair doesn't just disappear on your head, at least I didn't have to shave my legs or pluck my eyebrows for a while!

To take advantage, I had transfer tattoos of flowers around my ears, and just before my transplant I paid a guy in Halifax to paint a huge henna tattoo of a sun on the crown of my head. It was a bit of a joke, but it was very cool (so I thought!).

I guess my point to this story is that it is really hard to lose your hair, especially for us young women, but with every case, we must take advantage of the situation. I am conveying this story as I know someone out there is pissed off about having to lose their hair (take my friend Elaine who had lovely long, thick blond hair. It isn't easy at all). Have a head shaving party and get your friends to shave their heads too. My good friend had very long hair, and she shaved it with me.

The more you smile about it, the more others will smile with you. I had a high school friend that worked as a nurse at the IWK in Halifax, and she told me a story about a young 15-year-old with cancer who was depressed about having to lose her hair. My friend told her about the fun I had with transfer tattoos and how I used my baldness into something fun. This young girl actually smiled and thought it was cool to do that. That is what makes me smile: I made someone I didn't even know smile.

Should you research your cancer?

By Geoff Eaton

For the purposes of this article I want to note that I consider research as looking for any information that may be relevant to your cancer challenge. I mean looking for more than just medical stuff.

Having said that I will deal with the medical stuff first.

In a word, yes. I think it is important to research your cancer diagnosis. The level at which to conduct that research is an individual thing. Personally I didn't do much research on my own but thanks to my dad's efforts, he consistently found information that provided us with another perspective on my situation and what I was going through.

I am a very proactive patient but when it came to the medical details I wasn't as interested in knowing the official medical terminology or getting the names of the drugs I would receive correct as much as I wanted to know what their side-effects were and specifically when and how long I would take the drugs. I was that way for most of my tests as well. I wanted to know what I would experience from the drug or test more than anything.

Asking questions of your health professionals is a great way to get information and I think it is really healthy to supplement that info with other reliable resources. The Internet makes this both easier and tougher than ever. It's easy because we can access so much info instantly, but it's difficult because we need to weed out so much of it to find the relevant, reliable stuff.

My suggestions are to find a couple of resources that you rely on and trust, and use them consistently. This may take a while but the alternative perspectives may be extremely helpful and they may provide you with some options you never knew you had. As a cancer patient I always wanted options. I don't like to be boxed in a corner so doing some proactive research and questioning with your Docs may provide you with ways of getting things done you never imagined initially.

When it comes to researching your cancer on the non-medical side I think much the same way but feel even more strongly that it is important. Now as I say that I recognize that I am more than a little hypocritical as one of the first peer support interactions I had was with a patient who talked about the bad side of experiences that I hadn't gone through yet. And after that interaction I made a swift and harsh judgment, as I'm prone to doing, and I decided I wouldn't see any patients if they were going to talk to me about all the shitty things that lay ahead.

To clarify, that doesn't mean I didn't want to talk about the shitty things or understand the reality of what I faced not at all. I have always wanted the unedited version of what's happening, straight up, no bullshit. But I try not to look at that from the perspective of wait until this happens it's the worst pain you'll ever feel but more from the view that here's some of the things you might experience, it's tough and will hurt like the devil, but you can get through it.

Back to this peer support thing as I said I went without it for a long time but as I look back I know having some cancer buddies around while I was in the thick of my challenges would have been a major advantage. I was extremely fortunate to have some very supportive friends and family and that is so important. But if I was aware of resources where I could go and connect with other young people facing things similar to me then I would have tapped in. I attended the occasional support group but it wasn't for me, too many older people and generally not enough positive energy there, which is something I feel we all need.

The medical scientific knowledge can be a real benefit to a patient and I think it's something we all should consider and from there make our own call on how much info we want to know. And the same thing goes with the peer support and learning about other people's experiences that have been where you are now it's like most things in life, they are probably both best when done in moderation.

Think about what your moderation is and go with it.

My experience with cancer

By Heather King

In April of 1999, at age 27, I was diagnosed with low-grade follicular Non-Hodgkin's Lymphoma after discovering a small, painless lump in my right groin area. Before getting the results of the biopsy I was hoping it was just a hernia from lifting heavy baggage into an overhead bin for passengers on an aircraft. At the time, I was a flight attendant. In the back of my mind I knew cancer was a possibility, but I was still shocked to learn that I had lymphoma. I didn't know much about lymphoma, but I had a feeling it was going to be a lot worse than some other forms of cancer and I was scared to death.

I quickly lost confidence in my first oncologist. After having further tests to show the stage the cancer was in, he determined I would have chemotherapy AND radiation. After a bone marrow test (which was not half as painful or scary as I thought it would be) he decided to give me radiation only (20 times at Princess Margaret Hospital Toronto), and after that we would "watch and wait," reacting upon the cancer's return.

This was unacceptable! I had NEVER heard of watching and waiting for cancer to return, all of the people I've known with cancer underwent aggressive treatment as soon as possible, the theory being the earlier you "zap" it the better your chances of survival. My doctor explained that my cancer was non-aggressive or indolent. It's not aggressive, that has to be a plus, right? This means it grows slowly. It is possible to treat the cancer with chemo so that CT scans show zero signs of the cancer, but it tends to "hide" in little pockets around the body and grow back again. Boy, that sounded like a death sentence I tell you! Besides, did my doctor even know what he was talking about? He first said I would be treated with chemo AND radiation and now he's changing his mind all of a sudden, was he even competent in this matter? I switched oncologists, for a second opinion.

By the way, a second opinion is a very smart thing to do when you're dealing with a life threatening disease. Don't ever feel bad about getting another doctor's opinion--it's your life you're talking about! Cesides, oncologists are used to people getting second opinions for reassurance!

I really trust my new oncologist--he was of the same opinion about my case as my previous doctor, but that was ok, I could now accept the diagnoses. This doctor gives me the facts but avoids the scary statistics, unless I ask him. He lays out the possibilities in a clear, down-to-earth manner and uses examples of other patient's experiences to put me at ease (without revealing their names of course). I have been asked to think of my lymphoma as a chronic disease. It's been difficult to get my head around this!

After taking a couple of months off work for radiation and mental health relief, my husband Paul and I had our dream wedding, thanks to my mom's careful planning! I decided to quit my job as a flight attendant, this was one of the positives which came from my having cancer as I went on to work as a customer service rep in a call center, a dream I always had but did not have the nerve to pursue. This is significant because prior to my new fate I did not know if I would be good enough to work in an administrative role since I had not touched a computer in years, and my computer knowledge was minimal. I had not completed university, and my work experience was with the airlines. My confidence and self-esteem were not the greatest at the time, and I was really pushing myself to get up the nerve to make this change.

Another positive to come out of this was taking better care of myself: getting more sleep, eating more and better, and knowing my limits. Knowing my limits means I monitor the day-to-day stress in my life, and I know when it's time to recharge my battery. I am not perfect, I still pig out on junk food from time to time but I am much better than I used to be!

Important realization along the way: Doctors consult with other doctors, and this is a good thing. Even when they talk like they know a lot, and they do know lots, one doctor cannot possibly know EVERYTHING about all types of cancer. Technology in the medical world changes at a rapid rate and doctors are constantly learning.

About a year later I started to develop a lump on the left hand side of my groin. Similar to my first lump, it was painless and small. I was not too shocked and I continued follow up appointments with my doc every six months. He assured me that unless it was causing me any pain or cosmetic grief, we would be ok just watching and waiting. I continued to work full time. I decided I was not going to tell anyone I worked with about my cancer unless I absolutely had to. That way there was no risk of people treating me any different, and I could pretend all was well.

After two years you'd think I had come to terms with my situation, and I had for the most part. I had excelled in my customer service job to a Team Leader position, was happily married with the love and support of amazing family and friends. But surprisingly the fears and doubts returned as my husband, Paul and I were contemplating purchasing our second home, an upgrade from the first. What if the cancer comes back and my salary is reduced due to long term illness? This house would be located 20 minutes further away from Toronto, did we want to face longer treks to the hospital for repeated treatments in the future? The normal stress of buying and selling a home was bad enough! My mom settled my mind by telling me that no one knows how long he or she are going to be alive on this earth, and you just cannot think like that or you could miss out on so many wonderful moments.

Any time a life altering decision such as buying a house comes up I will undoubtedly have a little return to my fears. Whether or not to have a child is another example. Fortunately, Paul and I are "on the same page" with that decision and are ok to put that dream on hold, permanently if need be. It's hard, you know, the "what ifs" always linger near. Paul and I decided to buy the home and we are so happy it's beyond belief!

Well five years later I have been promoted to manager of 15 people in that same customer service department. Needless to say, I have a bit of a "carpe diem" theory going on, and I don't let inhibitions stop me much these days. Usually, if something comes up that I would like to do but am afraid, a little voice in my head says, "what have you got to lose" and the next thing I know I am doing it! This is yet another positive that has come from having cancer. I feel good, too. Luckily, the only systemic symptom I sometimes have is night sweats.

The painless lump in my groin continued to grow, as did two others behind my ear: one on the side of my neck, one under my arm and a small on under my chin. All were small enough that they were not noticeable by those around me. The one in my groin had grown to five inches by seven inches (on the outside, I could measure it with a fabric measuring tape). It was becoming more difficult to hide this with my clothing and I talked to my doc about my concern. The doc said it was time to have chemotherapy. My mother flew from Newfoundland to join me for six rounds of chemotherapy (a mild version in which I did not lose my hair). My sister would attend meetings with the doctor, taking notes for me on everything he said (doctors tend to talk real fast). He set up an appointment for me to talk to a doctor who specializes in allogenic stem cell transplants.

After carrying around the knowledge that I had cancer for five years (since it's an indolent or "slow growing" lymphoma), I finally had to tell the folks at work about my situation. This was by far the hardest thing I've had to do. Not only was I shocking people with the news, but I was admitting to being ill in the only place that still seemed "normal" and unscathed by the cancer news. My co-workers and boss were very supportive, and we have decided to hire a "team leader" to help me manage the department until I go for the transplant. It's amazing how good people are, you know? And it's amazing what good things can come out of something as crappy as cancer: newfound confidence to be the best I can at what I do, enjoying every moment, and changing all aspects of life that do not make me completely happy. It has a profound affect on other's lives too, it helps them put things into perspective and to love and respect each other a little more.

I found out the most amazing news, my father is a five out of six HLA match for a peripheral allogenic stem cell transplant. My disease is "chemotherapy sensitive" which means it is responding to the chemo. I had one more round just to decrease the disease a little more before going for a transplant. I have been scheduled to have high does of chemotherapy followed by the transplant on November 11, 2004 at Princess Margaret Hospital Toronto. I am looking forward to getting this done and getting well again, but I am a little overwhelmed and fearing the unknown right now. I will keep you posted how things go later on!

Words to live by

By Erin Stapleton

As a cancer survivor, I feel that I--and others like me--have the responsibility to share the story of my cancer experience.

Diagnosed with osteosarcoma (bone caner) at 17, I dealt with "all things typical": shock of diagnosis, chemotherapy, surgeries, good times, bad times, feelings of hope, feelings of despair. In my future articles (and there will be more!) I will share various aspects of my two years as a cancer patient, as well as my current "survivorship." However, I thought it only appropriate that my first article be about an object that holds every emotion, thought, dream and fear I had during this time (and sometimes even now).

It's been there since the beginning: my diagnosis in August of 2000, three major and two minor surgeries, remission in August 2001, relapse in November 2001, my remission in 2002. Even after two and a half years of post-chemo remission, I still find myself turning to it every once and awhile.

A simple journal filled not with a day-by-day account of my cancer journey, but nonetheless, a collection of words that accurately, realistically and truthfully reflect my feelings about my experience. The pages are filled with quotes and poems that I have read in books, heard on television, seen on cards from well wishers. They contain messages of hope, triumph, courage, love, inspiration, and faith. My plan is, for each article, to take a quote from this book and relate it to a particular aspect of my journey. Though I applied these to cancer, I now realize as a survivor, everyone can gain something from these messages. They are indeed words to live by.

The passing of Krista Hong reminded me of my responsibility to share my story, to reach all those dealing with cancer, patients, and supporters. Her death resulted in a long overdue discussion with Geoff, where we spoke of this responsibility and my articles will be just a part of my contribution. I leave you with a poem that is one of the first in my collection. Reading it, an image of Krista is created, her great impact in her short time, and inspires me to share my story.

No Road to Steep
By: Maggie Bedrosian

There is no path so dark,
nor road to steep, nor hill too slippery
that other people have not been there before me and survived.
May my dark times teach me to help the people I love on similar journeys.

You choose: Victim or Survivor?

By Erin Stapleton

When diagnosed with cancer, I had an immediate, intense feeling that I had just lost control of my life. I know now it's a feeling many cancer patients and patient supporters experience.

I had always been a "planner," from scheduling music lessons to deciding what year I would earn a particular university degree. These were itineraries and goals I had set for myself in accordance with what I wanted. As a cancer patient, however, my days and weeks were planned for me: chemotherapy schedules, medication to take, physiotherapy sessions, surgeries, and so on. I felt completely helpless, as if cancer was running me. I didn't like the power it seemed to have over my life. In a word, I felt VICTIMIZED. Then, I came upon this:

Victim or Survivor?
Paula Koskey

Being a victim is a state of body; being a survivor is a state of mind
A victim fears hair falling out; a survivor knows bald is beautiful
A victim knows about feeling down; a survivor knows that feeling down is OK
A victim goes to see a doctor; a survivor consults with a doctor
A victim gets caught in despair; a survivor prays
A victim feels helpless; a survivor says "thanks" with dignity and grace

It was only a few weeks after diagnosis when I first read these words and they helped me acquire the right mindset that would get me through my challenge. I realized that even though I had cancer; and even though I had to deal with all the appointments, tests, treatments and surgeries; cancer could not completely control me if I didn't let it! I could still make choices, and the most important one was if I was going to continue to let feelings of despair overwhelm me, or if I was going to face this challenge with as much attitude and hope as I could muster!

Mind versus body
I concluded that a cancer survivor is not a person who had cancer and is now cancer-free, but is instead, anyone who takes the disease head on without backing down. It's not being cancer-free; it's more the mind-set one has throughout the entire "cancer to post-cancer" experience. The cancer may be in the body, but thinking about overcoming it can help fight it.

Shiny-smooth!
The minute I knew that chemotherapy was going to make my hair fall out, I decided to shave my head. One of the nurses on staff got the clippers, and with my mom and boyfriend watching, my head was shaved without a moment of hesitation--we even took pictures! I didn't have to go through the process of watching it fall out bit by bit. It allowed me to focus on treatment rather than pondering how to pull off a comb-over! It is a personal matter, and it is especially difficult for females, but being bald wasn't bad for me. You really do get used to it!

Consulting
My first move was to research my cancer (osteosarcoma) and with the wealth of information available from hospitals, research institutions, and cancer organizations, I became "well-educated" in the area of OS. As I read, I compiled a list of questions-- spawned by the material I was gathering--for my oncologist. As I consulted with him, he not only gladly answered my inquiries, but also was impressed by my investigation and encouraged that I do more! He informed me that patients all too often don't ask the questions they are sure to have and are entitled to ask. It is not an insult to the physician; you are asking questions about YOUR disease! The question and answer sessions I had with my doctor eased my concerns and I was better prepared for what lay ahead.

The good, the bad, the ugly--and all the days in between
Depression. I think I was on the verge of being diagnosed with it (or probably was without knowing) just after I had my leg surgery. I was 18-years-old and could not even go to the bathroom without a family member or nurse right beside me! I was confined to my bed or wheelchair, in a constant morphine-induced haze to manage the pain, and all the while dealing with the usual sore mouth, low hemoglobin, stomach sickness and neither platelet nor neutrophil to call my own! I'm sorry, but even the most positive people are entitled to feelings of sadness and doubt.

I resented people who spoke as if I needed to be "fixed" with medication, as if there was something wrong with the way I was feeling. Yes, it was the "low point" of my two-year cancer experience. I slept A LOT, cried, and was just plain angry at my loss of independence. It's still a source of painful memories. But the important thing is that I eventually came out of it about a month later as the pain subsided and I got used to being immobile.

I still was not content with my situation, but I turned my previous source of sadness into fuel for my recovery. Having cancer, and dealing with everything that comes with it, is sure to make anyone have days where it feels as if all hope and will to fight is gone. This is completely normal. No one should be expected to be courageous and pleasant every day. What matters is that you acknowledge the feelings you have are real, work through them and eventually get back on track with optimism.

Thanks!
Losing my independence was hard to accept at first. But I quickly got over myself and realized that accepting the help of those around me would be the only way to get through it all. I was going to have to "suck it up." Before long, my bitterness towards being "tended on" subsided, allowing me to see and truly appreciate all that my family and friends were doing for me. They made great efforts to see that I was comfortable, content, entertained and well fed! These actions were not out of obligation or pity, but out of genuine concern and love. How could I refuse that?

I didn't choose to have cancer, none of us do. But, we can make the choice between victim and survivor. I'll take survivor.

Steroids: Not performance enhancing

By Geoff Eaton

I remember in high school I did a research paper on performance enhancing steroids. It was a while after Ben Johnson, the Canadian sprinter, had been caught for steroid use in the Olympics. I remember reading about Lyle Alzado, a great NFL linebacker who used steroids. Alzado was featured on the cover of a Sports Illustrated article, reading his story got me interested in learning more about steroids.

I never thought about the day that I would take steroids. Of course my steroid use was definitely not performance enhancing, at least not in relation to sports!

Prednisone is one of those drugs that seems to be used for a variety of conditions. It is an immune-suppressant, and in my case was used to help control the effects of Graft versus Host Disease (GVHD). GVHD is the disease that often results after a person has had a transplant from another person, an allogenic transplant technically speaking.

After my first bone marrow transplant I developed a skin rash, which is considered stage 1 GVHD and I was then prescribed prednisone. My doc wrote the script and I went downstairs to the pharmacy at Princess Margaret Hospital. When I handed over my prescription the pharmacist looked at it and said, "this can't be right." She called my doc to check and then filled the order. That was foreshadowing.

I started taking 110 mg of prednisone twice a day, that's 220 mg/day!

Prednisone has a variety of side-effects, some immediate, others with longer-term implications. One of the more immediate changes I noticed was that I could eat about five full meals a day and only needed about three to four hours of sleep a night.

My mind would race non-stop, I had lots of energy, considering what I was used to after transplant, and I'd wake up at 4 a.m. regularly for the day.

I put on about 15 pounds within a few weeks as I was eating anything I could get my hands on, literally! If you love food, this side-effect is not too tough to handle. I was amazed at my appetite. I was recovering from my transplant during the 1999 NHL hockey playoffs and I remember barely being able to make it through the first period after having supper before the game. I'd have a "snack" and that would hold me over until waking for breakfast at 4 a.m.

Complementing my new found energy and appetite I also had some perception issues, which is a major understatement! I called it "Alice in Wonderland Head" as my perception, often sporadically and out of the blue, would go wacky. I'd be in the living room watching tv and all of a sudden the tv would appear to be about 50 feet away, then I'd reach out for my drink on the coffee table and my arm appeared like an Inspector Gadget arm stretching way out away from my body. I'd be walking down the hall of our apartment and the walls would start moving and my balance would go way off.

I think this was also largely related to the drug dilantin, which I was required to take due to the high dose of prednisone I was on. The two combined to really play with my head, balance and vision. There was no pain at all, and the only real discomfort came from the foreign feelings and perceptions I experienced.

Over time, Prednisone can also lead to a reduction in bone density, I've been tested and fortunately it wasn't an issue for me, though I was on the drug for a long time. Another side-effect of long-term use is dependency.

Our bodies produce steroids naturally, however once we take a given amount of prednisone for an extended period of time our body stops producing steroids. When we reduce our dose eventually the body needs to learn to pick up the slack, so to speak. This can take different lengths of time for different people. I also found that the length of time I was on prednisone had an impact.

When I reached the 25mg/day stage I tried a, what I now call radical, drop from 25mg/day to 10mg/day in a 10 day period. A drop of 15 mg/day isn't necessarily that significant, except when you consider that it was 60 per cent of my daily dose.

At the end of those 10 days my body stopped. I cramped up, everywhere. I was constipated (and I mean damn constipated), my muscles ceased, I went to the ER and we discovered that I had dropped Prednisone too quickly. I resumed my dose and was also given an "oral fleet" to relieve the constipation, I had three doses and I was emptied from almost every possible route! Once I resumed my Prednisone level I started to feel better within a week or two.

I then proceeded to drop my dose much slower and it took me a long time to get rid of the last few mgs. You see Prednisone only comes in 5 mg tablets, thus a drop from 10mg/day to 5mg/day is a 50 per cent drop. I had to learn to play with my doses, and also cut the pills in half to take advantage of the 7.5mg and 2.5mg doses. Last going off I was taking 2.5mg of Prednisone every second, then third, then fourth day until eventually I would forget to take it and still feel fine. I don't remember exactly, but it seems that I was about a year getting off Prednisone all together after my first transplant.

It was one of those drugs that brought some enjoyable side-effects, as opposed to just making me sick, but it fits in the category as all drugs do as something to take only when absolutely needed.

I've been drug free for a long time, many years, and one of my main goals is to keep it that way!

Wash your hands and control that infection

By Heather King

Bacteria and viruses that make people sick can be passed on our hands. Hand washing is the single best way to reduce the spread of infection (particularly important when your a cancer patient or in direct contact with a patient!). Many "super bugs" can live on surfaces such as toilets, countertops, doors, and walls for many hours so it is important to wash your hands often.

Although it may sound nit-picky, bacteria can live on your hands through washing, pay particular attention to make sure you're washing your hands correctly.

Here's How!

• Wet your hands under warm running water.
• Put soap on your wet hands.
• Rub soap all over the front and back of your hands and between your fingers for about 30 seconds. This is about the length of time it takes to sing a verse of "Old MacDonald Had A Farm"
• Rinse your hands well under warm running water.
• Dry your hands with a clean towel.
• Turn off taps with the paper towel.
• Use hand lotion to prevent redness and chapping.
• If necessary, clean under nails.

I visit the hospital every two weeks for checkups after having my stem cell transplant. I have learned that it is a great idea to keep your hands sanitized as much as possible: before you enter the hospital, while you are there, and after you leave. This is true for anyone who is visiting the hospital for any reason, whether it be for a short checkup, a long stay, or to visit a friend.

When I am in a hospital for any reason, I use hand sanitizer to clean my hands when I first arrive to kill any germs that I may be bringing in.

I also keep my hands as clean as possible while I am there. It's hard not to touch any surfaces when you are waiting in a hospital! Armrests, magazines, and counter tops may all contain germs. While I am there, I make a conscious effort not to touch my face at all--especially my nose, eyes, or mouth area--unless I have just washed and disinfected my hands using hand sanitizer (I keep a tiny bottle in my purse at all times!). If I need to eat while I am there, I wash my hands immediately before eating. If I use the washroom while I am there, I wash my hands after I use the washroom, and use a paper towel to turn off the tap. I also use clean paper towel to open the washroom door and let myself out. Once outside the washroom, I use hand sanitizer as an extra insurance that I am germ-free!

This may sound excessive to some, but with the "super bugs" and germs that lurk in hospitals these days these practices may prevent an unwanted sickness. This is true for healthy people, but especially for those of us with compromised immune systems. This information also applies when you visit grocery stores, shopping malls, or any other public place.

Stem cell transplant experience

By Heather King

It's June 14, 2005, and I am currently seven months post transplant. I am at home, taking time off work to recover. I am feeling very well, except for occasional lack of appetite. My energy is not what it used to be but they say it can take a year or more before you are back to normal energy. I get out for a 30-40 minute walk almost every day, and last week I even rode my bike for the first time this year. I am currently still taking Cyclosporin (150mg), Coumadin (because I still have my Hickman Catheter and this keeps the blood from clogging it), Altace (for high blood pressure), 650mg of Calcium three times per day, 835mg of Magnesium three times per day, Septra (an antibiotic) three times per week.

My transplant schedule was as follows (2004):

October 31: Start taking Dilantin to prevent possible seizures from Busulfan Chemotherapy.

November 1-7: Take Dilantin 10 p.m. I was told to shower often when taking this drug as it causes some patients to itch. I did shower often, and had no itching at all.

November 1: Start taking a 24-hour urine sample

November 2: Went to Toronto General Hospital to have my Hickman Catheter inserted in my chest. Catheter is used to receive medications and to take blood samples.

November 3: Hickman dressing change at hospital, begin Busulfan Chemo as an outpatient.

November 3-5: Busulfan Chemo. I did not find this chemo made me sick at all.

November 6: Admitted to Princess Margaret Hospital, received final dose of Busulfan. I had a private room, with a bed, two chairs, and an exercise bike. It had an ensuite washroom with a stand-up shower and a bidet. I was emotional and scared the first day in hospital, with the fear of the unknown, however I found my room comfortable, bright and clean. A loud fan noise could continuously be heard, as they have a dust filtration system.

November 8-9: Cyclophospamide Chemo. I did have occasional nausea and vomiting from this drug. I experienced a sore throat at one point. I also had days of extreme fatigue. Great thing is, with the push of a button, a nurse would come in and give medicine to ease the side affects.

November 11: Day of stem cell transplant. I was nervous, but ready. They gave me some pre-medications which made me feel nauseated. I was saying some silly things at times, due to medication. One of the songs which kept playing in my head was "I Wanna Be Sedated."

I had the transplant at 3:30 p.m. when the doctor injected my father's stem cells through my catheter. It was not a bad experience: However I do recall my throat feeling extremely sore during the procedure, almost like swallowing needles.

Not long afterward I was feeling like my old self. I was chatting with my mom, sis, husband, and sisters-in-law who were all waiting outside my room. I even emailed the folks at work to let them know everything went well.

I remained in the hospital until December 6. During this time, I experienced side affects such as insomnia (for which I was given medication) and an extremely sore throat. I was not even able to swallow my own saliva for a few days. The nurses set up a machine allowing me to suck the saliva out of my mouth since I could not swallow it. Gross, but effective. They also set up a morphine drip to ease the discomfort of my sore throat. I also had some sores in my mouth, and my gums were swollen. When my gums bled the team gave me a transfusion of platelets, donated by some wonderful blood donor out there.

I spent my days in hospital chatting with my mom and my husband, Paul; watching TV; listening to music; emailing friends on the laptop; and reading. I also used the exercise bike from time to time to keep myself active. I could not peddle fast or hard, but a little was better than nothing. Also, since I was in isolation for a few weeks the bike helped me to keep moving. I did experience a bit of cabin fever and anxiety from time to time.

At one point while in hospital I developed a very itchy rash on my back. The doctor took a skin biopsy and determined it was Graft vs. Host Disease of the skin. I was a little relieved, since I was told that a little GVHD is good, in that it means the body's new stem cells are in place. It also means the body is in fighting mode and may also fight off any cancer.

On November 19 I asked a nurse shave my head as my hair was starting to fall out from the chemo. My mom said I reminded her of when I was just a little baby! I didn't mind losing my hair and wore cotton caps because I found it quite cold with no hair.

The actual act of having my head shaved was more uncomfortable than I would have imagined, it almost felt like my hair was being pulled out! I didn't mind having a bald head; I was pretty mentally prepared for it. I couldn't get the Sinead O'Connor song "Nothing Compares to You" out of my head for a while. She's a well-known bald female singer.

Every day, several times a day, my vital signs were checked which was a routine procedure. Blood pressure, temperature, and weight were checked routinely. At one point my temperature was higher than 38 degrees, so I was sent for a CT scan to rule out pneumonia. Fortunately, I did not have pneumonia and the fever subsided.

I was very fortunate to have the support of my mother, who put her life on hold in Newfoundland for three months to come to Ontario and stay at my side throughout my whole experience. My husband, Paul, was also with me every day. As for my dad, he gave me the gift of life--twice--and I can't thank him enough! My sister and my husband's family were also angels by my side.

June 2005: I had my six-month post transplant CT scan, and it showed no signs of cancer! I did have one residual lump in my groin which was biopsied, and found to be scar tissue only from an old tumor.

It's now August 4, 2005, and I am still off work and at home. I am down to just 100mg of Cyclosporin, twice daily. The only minor complaints I have are a rash on my arms, legs, and back; and a dry cough. I see the doctor at Princess Margaret Hospital every two weeks for follow-up. They constantly check my blood to ensure everything looks good. I still have my Hickman Catheter (it's been 10 months now!) and will keep it until I am off Cyclosporin completely.

Later in August: the doctor put my Cyclosporin back up to 175mg due to a rash on my back and legs. Also in August, I got my first "post transplant cold," which took me one month to shake off. I had a terrible cough and even cracked a rib from coughing so much! It was nothing that time and antibiotics couldn't lick! It's nice to have had a cold, and to now know that my body could fight it off. With a new immune system, I find I'm always "testing it out."

October 12, 2005: I am at 50mg of Cyclosporin twice daily, with no sign of a rash or any other side affect. This is the lowest I've been on an immune-suppressing drug, and I am looking forward to the possibility of being off of it completely! I am hoping to return to work in early November. I had my Hickman Catheter removed, almost one year to the date it was inserted. This procedure involved local anesthetic in the form of three needles. It wasn't too bad at all. I had three stitches which were removed one week later.

This past weekend was Thanksgiving and I was lucky enough to be feeling well, and to have my mom, husband, and sister at home with me in Cambridge. We had a traditional turkey dinner at my sis-in-law's. Life is GOOOOOOOOD!

I am feeling so great, and so fortunate! My doctor reminded me that my dad was only a 5/6 (imperfect) HLA match, which means my chances of having more Graft Vs. Host is pretty good, especially as I reduce and end my Cyclosporin. I plan to continue exceeding his expectations and am enjoying life to the fullest!

Support groups taught me I AM invincible

By Kyla Copp

I always assumed I was invincible. I imagine most other young people do too. Two years ago when I lifted my arms up to hug my fiance before bed, my arm rubbed up against a large lump that wasn't there before. Of course I was petrified, and about three weeks later I learned that it was a perfect reaction; I had stage three breast cancer. I was only 28-years-old.

Three thoughts swam through my mind when my GP told me the news: "Oh my God, I'm going to lose my hair," "Oh my God, I won't be able to breast feed my future children," and lastly I thought "Oh my God, I could die." I'm not sure how long the shock lasted, but I think it probably lasted throughout the year of treatment.

Immediately after hearing my diagnosis, I automatically stepped into the role of the strong, brave, young woman with the positive attitude that I was going to beat this "thing." I suppose by putting on this fake, brave face, I denied myself the reality of the situation so I didn't fully realize that death was lurking around the corner, slowly squirming towards me like the slime that "it" is. And maybe this denial, or attitude as others put it, is what helped me fight this awful illness, so in a way I am grateful.

I say I had a fake brave face because I don't think I was all that brave; I was scared and mad and depressed. I just did my best not to let on that I was feeling those sentiments. I did what I had to do to survive all of the different anxieties that surrounded me.

Mainly, this bravado was for other people around me, and not only my family and friends, but even strangers who asked me what my story was (while I was standing in line at the supermarket concentrating on not throwing up or passing out, no less!). I felt I had to be strong for my loved ones because I knew they too were petrified, and they were often on the phone passing along the message to out of town, worried relatives of how brave I was and how strong I was and how my attitude alone could beat cancer. I surely couldn't start crying now; couldn't show how angry and depressed I felt because I might disappoint them, or scare them into thinking I might die if my attitude wasn't positive.

I spent some time in the shower or bathtub crying, so that no one would hear me. I think I only cried on my mom's shoulder once or maybe twice, and my fiance hardly saw me cry. He's a man's man, and I didn't think he'd really understand that sad, depressed emotions are sometimes uncontrollable. He understands better now, thankfully, but to this day, I still don't feel completely understood by him like I do by other cancer patients and survivors. He has been an angel in disguise, and I am blessed to have him in my life, as I am with my mother, family, and friends. But no matter how much they love me, and no matter how much they want to understand how I feel, I don't think they can.

Going to a support group during my treatment didn't interest me at all because I would have seemed weak, perhaps. If I needed to talk to anyone, why couldn't I just talk to my mother or fiance? Mainly, because I didn't want to burden them further. Besides, I had gone to the "Look Good Feel Good" program at the hospital, hoping to have my spirits cheered by learning how to apply make-up to hide the awful greenish colour of my skin. But I left feeling worse because firstly, I was the only one without hair, and secondly, the ladies there had silver, white, or grey hair.

I felt angry again, listening to these women go on about their problems (no winter trip to Florida this year) while I was thinking I'd never be able to have the only dream I've ever had: to have children. I was so angry that they had had their chance at life already, but mine was still at the beginning! I wasn't even married yet!

Because of the chemo-induced menopause, I only had a 25 per cent chance of ever having a menstrual period again, and I must admit that news really depressed me. Even though my fiance and I had talked about adopting children before the diagnosis, I still felt really depressed because I thought it was totally irresponsible of me to consider having children if I had such a high percentage of recurrence. That thought still crosses my mind every day.

It wasn't before the end of my treatments, when I started radiation treatments about 11 months into this whole ordeal, that I really started to accept my feelings. Or rather, it was a time when I couldn't hold them in any longer. I was crying, lying on the table under the machine, and a very sympathetic young, technician asked me if I could spare a few minutes afterwards to speak to a social worker. I did, and she told me there was a new support group at the hospital called Connextions 18-35, and it might be the perfect outlet for me.

So I contacted the social worker who ran the group, and she invited me to the next meeting. Connextions 18-35 is a "small but mighty group" of young patients and survivors who meet once a month at the hospital. Some of us have become friends outside of the hospital group which is fabulous. Some members of our group have passed away. When Heather died last year, we were so obviously saddened by her passing, not only because she was such a lovely, brilliant and wonderfully spirited young lady, but also I think, because she was "one of us." She was only 34-years-old. There goes that invincible theory again.

We still think of Heather often, and we talk about her to our newest members. And it's really hard to look around the room every month, and think that maybe some day, someone else could succumb to this awful disease.

But we continue on. Some of us are still in treatment, and some of us are in remission. We are all at different stages of our lives but we all have cancer and our age group in common. It is so important for us to have this connection because grey-haired ladies like the ones in the LGFG program probably can't understand what it's like to be in your teens or twenties, single, with little or no insurance, no long term spouse, no established career, and no mortgage paid for. We have to rely on our parents again for financial, emotional and physical help. That's a tough one for an independent young person. And it's even worse for those whose families live far away.

I was so blessed to have my fiance who could work part time in order to be with me through it all. My sweet mother, who was retired, was able to stay with us during chemo weeks. I was also blessed to have the group and our social worker to talk to in the late part of my treatment. If I could give advice to any young person with cancer, it would be to join a group sooner than later.

If one isn't organized in your hometown, talk to a social worker or nurse, and see if one could be started. It only takes two to start! Otherwise, there are many options online for us to voice our opinions or ask questions on various forums. I wish I would have gotten connected with other young people sooner. Late is better than never, and I feel much, much better now.

Support group realization

By Kyla Copp

The support group I belong to is one with sensitive and sympathetic ears, but none of the group members are in my shoes (as I am not in theirs), and the time we have together every month is to be shared amongst all of us. I feel like I should be quiet most of the time because I am post-treatment, and some of them are still in the middle of it all. They have more pressing issues than I do, I figure.

It's almost like we should have two groups. One for those in treatment, and one for those in remission. I sometimes feel guilty talking about the problems I face because they would have seemed trivial to me when I was in chemo, fighting for my life. But at this point in my life, these problems are certainly not trivial to me, and I know I shouldn't feel guilty. But I do.

I wake up every day glad to be alive, certainly, but I'm not excited about life like the way I thought I would be, having had Death just around the corner, whispering my name two years ago. I swore up and down that I would never admit a "bad hair day" after having had so many "no hair" days, yet there I stand, in front of the mirror in the morning, complaining to myself that my hair "sucks" and it won't "do anything!" What's wrong with me? At least I HAVE hair! At least I'M ALIVE!

I swore I would never waste time with trivial matters, nor worry about the weather. I promised myself I wouldn't work at a job unless I loved it. I promised I would never have road rage. Why am I not following through with the promises I made myself a mere 18 months ago? How can I be taking life for granted again?

Just like I felt I had to put on a brave face at the time of my diagnosis and during my treatment, I felt like I had to be this strong person who can over-come anything when it was over. I went back to work at a date both my doctor and I agreed (three months after the end of my treatment), but in retrospect it was too early. My short term memory was still barely viable, and my emotions never got a chance to be stable. But I wanted to be part of "normal" society again, pay my taxes, and get a much needed paycheque. And I wanted to belong to a different group of people again: the cancer free group.

So here I am, in the cancer-free group of working nine-to-fivers, wondering to myself, there must be more than this? I'm not as motivated as I should be, so, where do I go from here? How does one enter the "Survivor Life"smoothly? Well, I suppose we need to do our best to stop worrying about recurrence (yeah, right). I don't know how to do this, and I wish someone would tell me how.

For instance, I used to want to have a bunch of children, enough for a volleyball team, but now I worry that if I have a relapse and can't beat it a second time, I'd have a bunch of kids being raised without a mother. It's strange, but I think of having two as safe, because I know my husband could handle raising them alone if he had to. But five kids is a different story altogether.

Even admitting that I'm scared of recurrence is a problem for me because people will give me one of two responses, guaranteed, and neither one is interesting to me whatsoever. I get the "yeah, well, you could get hit by a bus tomorrow, so stop worrying about the future" from friends. My response is usually this: "Yes, I could get hit by a bus tomorrow. But before I cross the street, I'm going to look both ways. So, if I'm careful, I won't get hit." But there's NOTHING I can do about breast cancer.

The other response I sometimes get is that I should have a positive attitude; no negative thoughts whatsoever. I strongly believe my positive attitude and the thought that I WOULD survive had a big part with my remission. But I think forgetting the statistics about my future is silly, as my decisions will affect other people, namely my unborn children.

I'm trying to "get on with my life," and I think I'm doing a pretty good job of it. I consider the stats of recurrence, but I don't dwell on them. I feel like I'm in limbo somewhat, and I imagine once I've passed the eight year high risk period I'll forget about it as much as possible. But what do I do until then?

Keep living, taking the time to smell the roses, spending fun times with family and friends, remembering to appreciate every bite of food that tastes as it should, unlike the way it tasted after chemo. I guess I need to speak my mind more, without being afraid of other's opinions, or accepting that maybe they're right and my attitude should change.

Speaking to the members of my group feels good, but I don't know if those who are still fighting for their lives can truly be of supportive of those in remission. I already forget what it was like to be in their shoes, and they don't really know what it's like to be in mine. Yet.

But at the very least, I can talk and get a hug, and make some good friends.

Get to the gym

By Geoff Eaton

I'm a new man. I can't believe the difference. Part of me really is kicking myself in the pants for not having done this much sooner. You know sometimes you know something but it takes you a long time to act on it--this is a perfect example of that for me. I'm talking about the gym.

Cancer brings challenges on many levels, and depending on who you are the biggest challenge you face will vary. For me I had a fairly significant combination of emotional and physical. Fortunately my spiritual side guided me through each, but not without huge effort.

I was always an active person, from the time I was a little guy I was either chasing a puck or ball, riding my bike, or playing in my sandbox (which seemed like a beach, but was apparently only 6 feet x 6 feet). As I grew up I was always active in sports, hockey, soccer, and basketball my favourites (hockey was my first sporting love). I've played it almost my whole life. I was never a star at any sport, but I loved them all and held my own.

It all started with my trip to the hospital for "observation" happened as a result of passing out at a business reception on a Friday night in November 1998. Two nights previously, I was at the rink playing my usual Wednesday night game of rec hockey. I played like crap, had no energy, couldn't skate or even work enough to get a sweat going, but all of that was passed off as being out of shape. That trip to the hospital explained things clearly.

I can only speak of my experience, but I know when you're diagnosed with acute leukemia, most everything in your life changes quickly. The ability to stay working, gone. Hanging out with friends at a party, gone. While having treatment, the chemo really kicks your ass, so your activity drops off significantly.

From what I can tell, chemo given for acute leukemia is more invasive than most, so not only are you facing huge emotional challenges, but physically your body takes some pretty good hits. Thus, my weekly games of hockey stopped. As turned out, they stopped for six years.

The chemo, and subsequent bone marrow transplant from my dad, were challenging on many levels. Definitely not insurmountable for me, but tough for sure. If my challenges had stopped there I know it still would have taken me a while to rebuild physically, but the curve ball of my one month stay in ICU in a coma on life-support really knocked me back.

As a result of my ICU stay I was forced to rebuild my body from the basement, at 23 I had to learn to walk again and did so without any formal support from the medical system, which is still a source of frustration for me. I rebuilt, a little, and got back to much of my normal life as much as possible, whatever that is.

I relapsed in 2001, just over two years after my first transplant. More challenges on all levels, but fortunately after my second transplant I avoided ICU, recovered much quicker than expected, which allowed me to work sooner then planned. That I loved, but this time, I also slowed down more, took time off, paced myself. I still am challenged with the balance thing, sometimes I'm good at it, other times I'm desperate. I'm a work-in-progress, as we all are for different things.

In October of 2004 I celebrated the third anniversary of my second transplant. I'd never had a third anniversary of a transplant before. It was a milestone beyond many doc's expectations. That month I also resumed one of my true loves.

In the fall of 2004 I finally got back on the ice, with my gear on, for a real game of hockey. True, I was far below the average age on the ice, but I was back playing hockey. I quickly realized that as good as I was feeling, my body still had some major rebuilding required before I could consider playing with guys my own age and at a pace that I was once accustomed to playing.

Hockey ended and just as it did I made a decision that I probably should have made the week I left the hospital after ICU in 1999, I joined a gym. Once upon a time I was a regular at the gym, though I have never had a love-affair with it. I've always preferred my childhood approach of chasing a puck or ball. But since joining a gym, and making the effort (and lots of days it's a huge effort) to get there consistently I have noticed some things.

My shoulders aren't as tight, I've got more energy, and--holy shit--I've got 15 pounds on (not all muscle but it's a damn good start!). And most importantly I feel the best that I've felt in seven years!

I've got some minor physical issues as a result of my treatment and experiences, slightly reduced lung capacity, a "dropped" left foot as a result of ICU, which basically means my left foot doesn't work quite as well as my right foot, but nothing too bad save the pain when it gets tired. And I've been missing 50 pounds for about the past six years.

Now I don't need all that weight back, but another 10 pounds would be sweet, especially when I put it on the right way. I've done a lot of things, physically, to improve my health and continue recovering. Yoga every morning one of my favourites, but nothing has had an impact on my daily life like getting my ass back in the gym and pushing myself just a little out of my comfort zone.

Whether you're athletic or not, it doesn't matter, I think the point that I've learned is that our body craves activity, it thrives when pushed, and we need to push it--a little anyways. I challenge you to get off the couch, so to speak, and put your physical conditioning on a priority list, because I know as it improves so will everything else in your life.

Nike has something with that slogan that's been around for a couple of decades.

Always...
Live life. Love life.

Geoff

A matter of faith

By Erin Stapleton

From my diagnosis back in 2000 to my present day status (three years of post-chemo remission), I have been asked from time to time about my  faith. Do I have faith? How do I keep faith? Did my faith ever waiver? Has my faith changed? At first, I found the questions to be quite thought provoking. Faith is not a subject a typical teenager thinks about, or at least, I didn't. Pondering these seemingly simple questions lead me to answers that helped me through my cancer experience:

1. Have faith in yourself!
I've said it before; when I was diagnosed, I never thought, "Why me?" Given my extensive family history of cancer and having had a friend and several acquaintances with cancer, I had long been exposed to the "truths" of cancer before my own diagnosis. I knew some who did not survive, but I also knew many survivors. I had no reason to assume that I would not be a survivor, so I focused on destroying those cancer cells and recovering.

To see this thing through, I knew that first and foremost I had to have a positive attitude and have faith in my own ability to tackle the many challenges that lay ahead. I started every day by telling myself that I had made it this far, to keep going, to trust my feeling that I was going to achieve remission. Sure, there were days (mostly for the month following my limb-salvaging procedure to remove the bone tumors [editors note: Erin talks more about this in her article Victim or Survivor?]) when I questioned my strength (mental, emotional and physical) to carry on and wanted to just lay back and take it all without a fight.

Thankfully, I worked through those quite typical feelings and those low points were far, far outnumbered by days when I felt that I could emerge a survivor. Having faith in your ability to face whatever challenges come your way (cancer or otherwise), gives you the courage to press on and the will succeed.

2. Have faith in the medical team!
Though I've been cancer-free since June 2002, I still make a visit to J4A (the medicine unit at the Janeway where oncology patients are treated) every six months when I have my tests and clinic. I spent the better part of the two years of treatment on J4A, so the staff there became my "second family." 

At first, it was overwhelming to meet this large number of people (nurses, oncologists, social worker, oncology nurse and physiotherapist), all of whom would be involved in my treatment and eventual recovery. It was a strange feeling, initially, to put all my faith in people who were complete strangers to me. But, what choice did I have? Here were trained medical professionals, and more importantly, compassionate individuals, who have dedicated their lives to helping people like me. I had to be confident in their knowledge and expertise, so I put all my trust into them and never regretted it. I never once doubted that I was getting the best of care and I was truly blessed to have all these wonderful people at my side throughout those years...they know who they are!

Believing that your doctors, nurses, therapists, and any other professional involved in your treatment, are giving their all to see that you get well is important to the overall outcome. Realizing these people are committed to your health will make you see that there are many people, outside of family and friends, who genuinely care for you.

3. Have Faith in your treatment!
It's one thing to trust the doctor who decides what protocol you should follow, it's a whole other issue to trust the drugs that are part of this protocol that will be entering your body! Again, it's initially intimidating to hear all these chemical names, and even scary to read the pages of side effects and possible long-term effects of these chemical agents. I knew about hair loss and nausea; but hearing loss, liver damage and increase risk for later cancers troubled me! It was either take these drugs that, despite many pitfalls, have proven effectiveness against cancer, or wait around for the cancer to travel, unchecked, throughout my body.

Before my first chemo, I took my protocol description and researched the agents that I would be receiving. What I found was encouraging overall. I read about the same side effects and long-term consequences that my oncologist had already mentioned, but I also read papers pertaining to the extensive experimental trials that outrightly proved the effectiveness of these drugs. I put my fears aside and put faith in the chemical liquid that entered my bloodstream almost every day for the next two years.

I had nausea, barely ever was I without a sore mouth, and now have minor hearing loss, but I'm grateful for those drugs! Most of us put faith into medical science, take the chemo and believe that it will do for us what it has done for many others - kill that cancer!

4. Have your own spiritual faith.
Many people address faith in the religious sense, whether in be in one God, many gods, prayer, angels, and so on. I do believe in a higher power, there is definitely someone or something at work here--I can't define it.

Being from a Catholic family, I was brought up on "prayers before bed." I had long forgotten this bedtime ritual by the time I had reached my teens, but from the day I was diagnosed, I started to say a prayer before going to sleep. Not the standard, memorized prayers I was familiar with from church services; just words that asked for strength to get through another day, to help a fellow patient get through the night, or to help grieving parents find solace. I was, and continue to be, comforted by the thought of my grandparents and dear friend "watching over" me from wherever they are. I do believe in guardian angels.

One moment when my spiritual faith was affirmed was the day when I received the results from my second lobectomy. I had already relapsed in my lungs and though receiving chemo for it, CT scans revealed more tumors. The doctors were even more convinced this time than the last: these "lung spots" looked more like tumors than the ones a few months previous that had led to the first lung surgery. So I had the second, more extensive lobectomy, and while we waited those two weeks in ICU, everyone was preparing for the worst.

I cried, I worried, bargained ("Let me live to be 65, just 65!"), but finally decided let things be. I knew that whatever came was part of my life plan, whether it be good news or bad, whether I liked it or not. But, the results came back: negative.

Everyone was astounded and joyous! That this happened, a negative result when physicians were so convinced otherwise, was a sign to me that a higher power was at work. To me, the important point here is to have a spiritual faith of some sort, not necessarily one that conforms to a single religion, but one that works for you and brings you some comfort. That's what having spiritual faith did for me. It didn't empower me, didn't energize me, but it did bring me great comfort when I needed it most.

I have found that four faiths are crucial to recovery from a serious illness: faith in oneself, one's doctor, one's treatment and one's spiritual faith.

Chemobrain

By Geoff Eaton

So maybe I'm a little forgetful, absentminded, and disorganized but I've always been like that, haven't I?

The first time I heard about "chemo brain" I wasn't too sure. At the time I was very tuned into the fact that survivors sometimes use their diagnosis and subsequent treatment and recovery as an excuse for some or all that is wrong with their life. When this does happen I'm sure there are a variety of reasons, some I'd agree with some I wouldn't. Suffice it to say that I was doubtful about this chemobrain thing initially.

Then I realized how many times I left my keys at the office when leaving for the day, or forget to take my cell phone in the morning. This used to be a huge source of frustration for me, and sometimes it still gets me going but eventually I learned to be more relaxed about it, even laugh at myself.

I have been out of active treatment for over three years, so my current phase of chemobrain is not the one associated with active treatment. I'm post-treatment but am still unsure of my brain function. While I still feel as alert and sharp much of the time, there are a lot of times, and I mean a ton, when I don't. I know my energy is hampered, not near as robust as it used to be, and I know that has a direct impact on my memory and cognitive function. But even when I'm rested, I seem to be missing something.

Now I'm not going to suggest for a minute that I never forgot my keys or cell phone before I had cancer. But I do feel as though my ability to remember those things at least half the time is challenged.

During treatment that is another thing entirely, but also something I don't have as much experience with fortunately.

You see I've become a big believer in focus, as in focusing our attention on one thing at a time, as much as we can. For when our focus is segmented, we end up doing a bunch of things half-assed. Many people say they can multitask easily and I'm sure some can, but what I'm saying is that no matter who you are, if you are focusing on one thing then you can do that one thing better than if you are doing five things.

For me, I think the biggest influence on chemobrain is the fatigue. When I become tired, as I do much easier than before my diagnosis, then all my mental functions drop. My memory goes to crap, not for long term stuff, but it definitely keeps me from remembering the groceries I had to pick up on the way home from work. It also makes concentrating a big challenge, it takes that much more energy to do the same task compared to when I'm fresh and rested.

I learned many times, both during and after treatment, that when I let my battery run down too low bad things happen. From minor things like being an empty-head to more serious issues like getting the flu or an infection, I know that being rested is more important than ever.

At this point, over three years away from my second (stem cell) transplant I have learned that I actually need nine hours sleep a night just to recharge and maintain my mental capacity. When I get run down, I need more like 10 or more hours to recharge.

I'm sure there are studies out there that have further investigated chemo brain and cognitive function during and after chemotherapy and radiation, but I haven't read them. What I know is from my own experience, and as with most everything that I've learned, if I feel it has value I try to incorporate it into my life.

So I'll be getting to bed early tonight!

Don’t let youth blind you to a cancer diagnosis

By Lorna Larsen

Team Shan, a community based organization in southwestern Ontario, recently completed a breast cancer awareness campaign for young women ages 15-29 years-old. Public health colleagues, education/media professionals and young adults designed, implemented and evaluated an awareness strategy with the theme "breast cancer...not just a disease of older women." The project was funded by the Canadian Breast Cancer Foundation-Ontario Chapter. Resources from the project have informed young women and assisted family physicians in their practice.

Highlights from the first Canadian (Cancer in Young Adults in Canada) and North American (Cancer in 15-29 Year Olds) reports on cancer and adolescents/young adults were shared with physicians during the campaign, including these points:

• Approximately 10,000 cancers are diagnosed in young adults (20-44 years) every year in Canada;
• Cancer is the main cause of early death in young adult women in Canada;
• Almost two-thirds of young adult cancers in Canada occur in young women. Breast cancer is the most common;
• Melanoma is the second most common cancer among young adults in Canada;
• Increases in incidence in Canada are most striking for thyroid cancer in young men and women, lymphoma in young women and testicular cancer in young men;
• Ultimately, a larger proportion of cases may be attributable to specific factors or genetic predisposition, but at present, most cancer in this age group (15-29 years) appears to be sporadic and random.

 

Early detection of cancer is crucial for adolescents and young adults to both increase treatment options and improve outcomes. In a qualitative study published in the November, 2006 issue ofthe Canadian Family Physician, Dr. Baukje (Bo) Miedema (PhD) and colleagues from Dalhousie attributed delays in detection to "either patients' or physicians' inaction." An editorial articulated the role for family physicians: "Family physicians sometimes failed to consider a diagnosis of cancer because patients were so young. Family physicians should remember that youth is not always a protective factor against cancer."

A January 4, 2007, McMaster Daily News interview with Dr. Ronald Barr, key editor for the North American report, further emphasized the need for family physicians to respond to symptoms in adolescents and young adults. "Often family physicians aren't suspicious enough of teenager's symptoms, interpreting a lump in the neck as an infection or leg pain as an athletic injury or growing pains, which delays an accurate diagnosis." Family physicians play a critical role in early detection for this population.

Dr. Barr also said that young people's feelings of invincibility, coupled with a lack of awareness about their cancer risk, are often factors in why the outlook is so poor for this age group.  Adolescents and young adults need to be informed in order to self detect symptoms and obtain an assessment. 

The Team Shan Community Project is one example of a health promotion awareness strategy for young adults.  Doctors need to consider the question, "Could this be cancer?"  For more information visit www.teamshan.ca or contact teamshan@gmail.com.

Lorna Larsen

Team Shan Project Lead

Originally published:  Medical Post (September 9, 2008)

A mother and daughter’s journey through cancer care

By Lorna Larsen

A diagnosis of cancer in your child is devastating. You become caught up in a world of cancer treatment that is both foreign and frightening. You put your faith in the health care system and trust in the medical professionals that hold your child's life in balance. Some young adults will survive the journey, others will not.

Our daughter, Shanna (Shan), was diagnosed with breast cancer that had spread to her bones in 2005. Shanna spent two months hospitalized in a regional health care center. An initial prognosis of optimism was never realized. Shan died less than four months after her diagnosis. She was only 24.

Many of the hospital guidelines used for young adults facing cancer are the same as those for older patients. Unfortunately, young adults do not often have the luxury of time. The aggressiveness of the disease requires earlier decision making and judgment calls. Early detection and treatment is indeed critical.

I write this story to assist other parents and young adults who will travel our journey. Practical tips are provided to improve early detection, the hospital experience and perhaps outcomes for those following in Shanna's footsteps.

1.  ASK THE QUESTION:  "COULD THIS  BE CANCER?"

Shanna, like many others, had no known risk factors: no family history, physically active, good nutritional intake, healthy weight, non-smoker, no known environmental exposure, physically and emotionally healthy.       

Shan spent twelve weeks searching for the answer to pain in her ribs and back and ongoing symptoms of illness. She was repeatedly misdiagnosed by the medical professionals we visited with her symptoms and our concerns.

If your child's symptoms do not resolve, or if you are concerned, ask the question:  "Could this be cancer?"

2.  BE INFORMED

If your child requests that you be kept informed, have the consent in writing. Verbal consents may get lost in the hospital bureaucracy. You should also seek professional advice and investigate the need for power of attorney. 

Ask the doctors and nurses to keep you informed about the disease, tests, and treatments. You need the information in order to know the questions to ask. 

We were not informed that Shanna's breast cancer could spread while she was receiving effective chemotherapy. We therefore did not have the knowledge to ask about tests to detect metastases prior to later symptoms. Early identification may have improved her outcome. Question the need for tests and their risks and benefits and ask about the potential side effects to medication, chemotherapy, or radiation.  Investigate pain management options that may or may not be available. Narcotics are only one strategy and may leave your child too heavily sedated to visit with family and friends. Shan wanted the pain tolerable, but also wanted to be alert and responsive to visitors. 

If you are given literature, review the written material and ask for clarification in areas you don't understand. Your own internet searches may also assist you with questions to ask. The Canadian Cancer Society website is a place to start. Be prepared to problem-solve. After receiving a new chemotherapy, we asked medical staff about a symptom Shanna was experiencing. We did not get an answer. I read later that it was a side effect to new drug she was receiving.

3.  SEEK OUT A PATIENT REPRESENTATIVE OR ADVOCATE

Most treatment centers have a professional patient advocate to assist patients and their families in understanding the treatment being received, and to provide clarity around any concerns. We were not made aware of this service nor did written information identify that an advocate was available to us. Seek help when needed and ask for their assistance. If an advocate is not available call on nursing or other hospital staff for assistance. Friends or extended family members may also be helpful in assisting you to access the information you require.

4.  BE PREPARED TO "HURRY UP AND WAIT"

It is the expectation of the larger treatment centers that patients are ready when called on for tests, but the patient is often left waiting for hours for transport back and forth or waiting because of a backlog in testing. The system is set up to accommodate the healthy worker, technician and physician, not the seriously ill patient. At one point it took Shanna four hours for a twenty minute procedure.  Meals and necessary medication may be missed during these long waits. 

5.  BE PREPARED TO BE CHALLENGED AND FRUSTRATED

Despite the fact that patients are told that they are in control of their cancer care the hospital system rarely allows for this flexibility. Shanna was given three options for a procedure and then denied her choice because there was no operating room time made available. 

Try to hang in there. There will be some successes and some failures. Call on your supports and your child's supports; they may be able to help. Bring in your child's favorite food--homemade or take out--and other personal items that will assist your child during his or her hospitalization period. Their own comfortable clothing and pillow or blanket can make a world of difference. Laptop computers, through dial up option, will allow your child to access the internet and his/her e-mail if desired.

6.  ASK FOR A CONSULT FROM OTHER SPECIALISTS OR OTHER CENTRES

Because the cancers in young people are relatively rare, each regional treatment centre may not have all the answers. Others may have learned from previous experience.  If things aren't going well, if the doctors appear to have run out of options, there may be lessons learned at other centres. This may require persistence and support from your advocate. Your child's oncologist may not have all the answers. An outside opinion may be critical. 

7.  LEARN BASIC DAILY CARE AND COMFORT MEASURES

Hospital rooms are extremely dry. If permitted, a small humidifier may be helpful.  With serious illness and after receiving chemotherapy or radiation, your child may require extensive mouth and skin care. It may be beyond the ability of the nursing staff's time. Simple comfort measures such as back and foot massage and application of heat (heated blankets) may assist with pain control and comfort.  Nursing staff can assist you in learning these basic skills. Friends may also wish to help.

8.  USE YOUR SUPPORT NETWORK

Call on your friends, your child's friends, your extended family, neighbours, and co-workers to assist if you are with you child 24 hours a day, seven days a week.  Meals, assistance with basic care and moral support can help you and your child throughout the hospitalization. 

Support is also available from broader cancer organizations for young adults including Young Adult Cancer Canada and for specific types of cancer such as Willow Breast Cancer Support Canada and Rethink Breast Cancer.

Shanna was an artist, a skilled swimming instructor, and talented figure skating coach with a passion for life and love of young children. She graduated with a Bachleor of Arts degree, Honours Visual Arts, and planned to teach at the primary level of education. She had a kind heart, a gentle spirit, and a smile that would radiate across the room. We miss Shan every minute of every day. Awareness can help make a difference for other young adults and their families.

Lorna Larsen (Shanna's Mom)

www.teamshan.ca

Originally published: Canadian Breast Cancer Network News (Fall 2007)

Shock of diagnosis: a supporter’s perspective

By Rebecca Flood

So, in one day, your whole life gets flipped upside-down. Not even one day, like two seconds. You hear the word "cancer" and you're never the same. As a supporter, the word is like a kick in the stomach, so I can't even begin to imagine how a patient feels.

On April 29, 2003, my father came to pick me up from work. My mother had been sick, nothing huge but I knew there was something wrong, so I was a little edgy the whole day as she went for blood work and what was worse was that I still hadn't heard from my parents.

When Dad showed up to pick me up from work, I figured everything was fine (I have a tendency to overreact). So I got in the car and dad looked at me, looking like he had indeed been kicked in the stomach, and started to cry. My father is not the type to cry. I had seen it happen once when I was young and his grandfather died, so all of a sudden I was eerily aware of the seriousness of what he was about to say. "Mom's sick...it's cancer."

I think I sort of blacked out for a second but shortly realized I was screaming my lungs out. It was all I could do. I don't know why, I just screamed. In my car on a packed street down town I literally threw a tantrum, shaking, crying, and screaming. There were people everywhere but I didn't care (this is not typical for me, I'm usually very concerned of what others think).

The drive to the hospital took years. I relived every moment I ever spent with my mom, it was like when people say your life flashes before your eyes. I have heard patients say that they knew it was something serious, and they knew on some level, but I don't think the family and friends ever really think or expect the worst. My mother had all the telltale signs of leukemia, so of course I was scared, but nothing could have actually prepared me for cancer.

We walked into the hospital and all of a sudden I was a three-year-old in a 21-year-old's body. I had flashbacks of visiting Mom in the hospital when she had my little sister. I was three and my parents were so happy and I got all the Jelly Tot's I could eat from the gift shop. What was I going to say to my mom? What was she going to say to me? How were we going to tell my younger brother and sister?

There were a million other thoughts; these were just the prominent ones.

We got to my mother's room and there she was sitting up on the bed having a conversation with one of the nurses and laughing. She saw me and smiled, and said, "I'm going to be fine, it's treatable... and hey, I could have been hit by a bus today, at least I have a chance to fight." I'll never forget it. All of a sudden it didn't hurt so much, the kick in the stomach was now a dull ache. Knowing she wasn't scared I knew that I couldn't be. All of a sudden I was an adult again (not that I wanted to be), and boy did I ever grow up fast after that day.

I suppose I felt that if I let her know I was scared to death that it would shake her belief that she would get better. It's really amazing what effect a positive attitude can have. Of course I got upset sometimes, and of course Mom did too, but being in the presence of someone so strong made it so much easier to deal. I guess we can learn a lot from our parents!

Breast cancer: It’s not just for girls!

By Meghan Drover

That's right boys, just when you thought that there was one kind of cancer you couldn't get, you're wrong.

Less than one per cent of all breast cancer cases are male related, but that doesn't mean it can't happen to you. It happened to my dad. You go through life knowing about cancer, hearing the word all the time and being affected through people you know that had a battle and probably brush the idea of it aside. But, when someone close to you in your family has it, or you get it yourself, it takes on a whole new meaning and your life is changed. This is where my story begins.

It was 1999 and what a year it was! So much was happening in the life of an 18-year-old fresh out of high school and about to begin a new life in university. I had started the summer with a bang making tons of new friends, staying out late, going swimming late at night with all my friends at Rotary Sunshine Park then thawing ourselves out with a coffee, and singing Backstreet Boys songs in random parking lots throughout the city.

Then there were the weddings! One of my brothers married in June, and the other married at the beginning of September. Needless to say it was chaos, but it was so much fun! After my second brother's wedding, I was about to head into a new life at Memorial where I made even more friends and the parties continued.

Life was SWEET! Now that my brother's were married I had my own bathroom, my own phone line and I was happily adjusting to the glorious life that I was leading. Ah, the simple pleasures of life. Just when you think life couldn't change anymore, you come home from work one night, and it changes again.

I arrived home from work late one night in September. My parents had two of their friends over. I thought it was kind of strange seeing as it was 11 p.m. and they usually wouldn't visit so late. Ignoring that, I said hello and walked into the den to check my email. Once they left, Dad went upstairs and Mom came in to say good night and I could tell she had something on her mind. She took a deep breath and said, "Dad has cancer."

I remember feeling empty. Everything around me went silent. My heart felt so heavy, and it was just a numbing feeling. I was in complete shock I didn't know what to say or do because it wasn't something I expected to hear. Dad went to the doctor all the time for his cholesterol or blood tests. I hardly ever paid attention to these appointments because I always thought, "My dad isn't going anywhere." Despite being 18 at the time, and being an intelligent person, it's funny how you revert to being a child again and thinking that your parents are going to live forever.

My mom then proceeded to tell me what kind of cancer it was. Breast cancer? How is that possible? At this point we didn't know how bad it was, how far it had spread, if it did at all, and what was going to happen next. All we knew is that it was in his left breast and the lymph nodes under his left armpit. Mom just left me in the den to process this completely shocking information and I just cried. It was funny, I didn't have to say it, but I wanted to be alone and she knew. It seems like one's perceptions and intuitions become extremely heightened at a time like this. You just know what the right thing to do is.

All I could think of was my future and Dad not being there, and it hurt so badly. I'm the only girl in my family and naturally I'm daddy's little girl. Would he see me walk across the stage at my convocation? Will he ever walk me down the aisle when I get married someday? I pictured Christmases with him not being there and it was just so bare.

The days following his diagnosis were pretty much blurry. The most important thing was to get information which led to me asking a lot of questions or just waiting to hear something from my parents as to what the doctors were saying and what we had to do to get Dad better. There was to be no more crying about whether Dad was going to be around or not. There was no other choice. He had to fight, and he did.

I remember his words so well: "This cancer is not going to get the best of me." And he wasn't kidding either! This is a point in your life where being stubborn is a good thing! His attitude and strength were amazing. Throughout everything he kept up his spirit and amazing sense of humour. Medicine and science have a lot to do with curing my dad. However, there is a lot to be said for believing in yourself and having faith in yourself and the support that is given to you by others.

Dad also had the love and support of our amazing mother who was truly his rock throughout the entire process and of course, myself and my two brothers. We also had a huge network of family and friends that were always there for us when we needed them. It was great to know that so many people cared about us.

Well, it's almost five years since his diagnosis and he is living life and loving it more as each day passes. Not to mention, he looks younger and better then he ever has! Our family is more of a team, working together. We rely on each other more then we used to because we all had a hand in getting each other, as well as Dad, through his entire experience.

That year, as trying as it was, taught me to not take anything for granted. Life is truly a gift and you must be thankful for it each and everyday, not only your own life, but the lives of others as well.

Accepting help when you need it the most

By Rebecca Flood

When Mom was first diagnosed with cancer (well after the initial shock/breakdown), I was like a robot. I did everything for everyone, took on all the household responsibilities, and faked happy in public and even when I was around my family. To the world I looked like I had everything under control. I had mixed emotions when people were impressed with how I was dealing with it. I'll admit, I loved the praise for being such a good daughter, but it always pissed me off because no one really knew how hard it all was.

There's one Sunday afternoon I'll never forget. I left the hospital to go home and make supper, and the dog had peed on the carpet (not a strange occurrence as he got overly emotional because mom wasn't around and did this on a daily basis). No one was home because it was summer and my brother was off swimming, my sister was out with her friends and my dad was at the hospital. I never felt so alone in my life. So I snapped--like really snapped. I was screeching and crying on my hands and knees next to a freaking puddle of pee when my aunt showed up! I find the reaction funny now, but at the time I thought I should be placed in a rubber room.

So, someone finally caught me, my emotions were out in the open, which actually was a total relief. That is when I think I really started to deal. My mothers work had a program where they refer you to psychologists that they work with and I went to see one.

To be honest, I hated it at first. I mean I am a half-way intelligent person and I know that I bottle my emotions so that others won't see how upset I am because it makes them upset, then I feel worse for making them sad. It was a "vicious cycle" but I knew that I did it and had no intentions of changing. So he just kept telling me to let out my emotions, which I honestly was not going to do. He gave me silly breathing exercises to do too, but I didn't feel like that's what I needed. I guess I gave him little credit at the time. I went a couple of times just because it was the "healthy" thing to do, but really never got a lot from it. So I assumed that's what all psychologists did.

Then when I was away with my mother for her transplant I saw a couple of councilors that were AMAZING! Now I don't know if they were really that great, or if I was at a place where anyone would do, but I found it so excellent to talk to someone that wasn't going to cry when I got upset, someone that knew what I was going through and knew how to deal with it. They were fully aware of Mom's situation. They knew how sick she was, unlike my friends and other councilors outside of the hospital. I had never dealt with a situation like the one I was in, but they have. I had never developed a way of coping with illness on my own so any way they could show me was better that what I had, if that makes any sense.

One of the councilors was a minister. Now I am not against religion, but I don't always respond well to the "turn to god" way of dealing with a physical problem. So, I was not totally receptive to him when he introduced himself as a minister. After talking to him for only 10 minutes, I felt so much better. He just let me go, and talk about anything to the point where I was saying things I would have NEVER said to anyone.

For example, the hardest things for me to deal with at the time were the visions I was having of her funeral, and this was when she was doing well. So here I am supposed to be all hopeful and supportive but I can't stop imagining what I will wear to her funeral, and wondering who would come! I thought it was totally sick for thinking like this and it still sounds weird. Apparently it was just my subconscious dealing with all of the options because my conscious mind was refusing to look at the situation critically. It makes total sense. I wasn't letting myself not be positive, so my mind was doing it on its own. What a psychology lesson! If I didn't actually open up I would have just continued on thinking I was nuts and feeling extremely guilty for it. Thankfully I didn't.

There were also a bunch of people (nurses, social workers, the mother of another transplant patient, and so on) that were awesome to talk to. It was a little harder with them as it was all too close to home and they would get sad when I was sad. I felt like they were dealing with her own problems didn't need mine. So the psychologists were the best for me.

When I got home I found another councilor that was awesome too. By this time I had been through so much that I think I just needed to talk about life, even if it was school or my family or whatever. I found that talking about life after cancer helped to move past all the pain.

If you're dealing with a cancer challenge, I would definitely recommend seeing someone just to see how you react to it. It may not help, but it pays to have an open mind. I would also recommend canceling the appointment if you're having a good day. Just my opinion.

There were a couple of times when I was having a totally great day, went to a session and ended up totally depressed from talking about it. Then I'd go buy a leather jacket to cheer myself up and end up feeling guilty about wasting money! I inherited an extremely guilty conscience from my mother.

I know that technically when I would avoid the therapist I was just bottling my emotions and that I needed to let them out, but when I needed to talk, I talked and when I didn't, I didn't! And that's precisely my advice. Talk when you want to and don't when you don't.

Psychologists have this stigma sometimes that they just sit there and take notes about how crazy you are, but that's totally not true. Even if you're like me and think there's nothing they can tell you about yourself that you don't already know, keep an open mind. You never know, sometimes it takes another person to point out those things that we overlook ourselves.

Helpless

By Rebecca Flood

Have you ever felt totally helpless? Like this scary, uneasy feeling that you're in a situation that you'd do anything in your power to stop but you just can't? That's what cancer was to me, a helpless situation.

After Mom was diagnosed and the reality set in, so did this feeling. I would go to the hospital all the time and just sit there looking for something to do. If she wanted cream rubbed on her "chemo rash" (as we lovingly referred to it) or if she even mentioned toast I would be running for the little kitchen area before she even had the words out of her mouth. It got to a point where I was getting more ice for her water every 15 minutes just to feel like I was doing something. In hindsight, I was doing something: I was being there, I was supporting her, but what happens when supporting someone just doesn't feel like enough.

I would have given anything to be in her place, to take her pain and do some of the suffering for her, and that's funny for me to say because I am the world's biggest sook! But I will never forget this empty feeling of being vulnerable to the situation. A feeling that I was not used to. I think I am more the type to fix things instead of just waiting for them to get better on their own. This cancer wasn't going to get better on its own, but I was in no position to do anything to make it better. This is when I thought, "Ok, I'll become a doctor," then I would look at the blood or platelets or box of needles on the wall, feel faint and realize I could NEVER be a doctor! So then I'm back to sitting and waiting...and the occasional ice run.

I eventually got to a place, after several months of her hospital stay, where I started to accept that maybe there was nothing physical that I could do for her, but things that I could take care of outside the hospital like the house, my brother and sister, and even my dad. So I did that. That still was hardly gratifying enough. I wanted to be able to make my mom better, and that wasn't going to happen.

Just as this realization set in, there was discussion of testing me and my siblings to see if we were bone marrow matches for our mother. AWESOME! I was going to give Mom the chance to live! I knew the likelihood of child-parent bone marrow matches is very low, but I was sure that I wanted it bad enough and I would be a match. My sister was convinced it would be her because she absolutely hated needles and hospitals and everything involved, so fate would make her a match. Unfortunately none of us were matches. It was heartbreaking. The one chance I had to really help and I couldn't. That was exactly how I felt at the time: helpless.

I know that this was not my fault, but I felt like I had looked so hard for something I could do to help that this was my chance, then it was taken away from me.

So I started volunteering anywhere I heard the word cancer (this is how I got here!) and that helped a little. Most people I have met in the volunteer capacity have a story and a reason for getting involved in the first place, so I wasn't alone in the quest for a way to help. This made me feel a little better.

I know that I am certainly not alone and I am now at a place where I know that sometimes literally just being there is enough. The doctors know what they are doing and will undoubtedly do all they can, but the support, getting ice, rubbing her back, cleaning up the house, sitting up all night to make sure she doesn't accidentally knock off her oxygen mask: these are things that I could do, and did without question cause she was my mom, she took care of me all my life! Although these tasks are not quite as glamorous as those of the doctors and nurses, I know that they were appreciated and I feel good for having done them.

Maybe I wasn't so helpless after all!

Coping with the change: Life after cancer

By Carter Hong

It's been almost two months since my cousin, Krista, passed away. For those of you who do not know her, her name was Krista Hong, and she was 19 when she passed. Krista battled Lymphoblastic Lymphoma, cancer in her lymph nodes, for almost a year. She passed away January 22, 2005 while undergoing a research treatment in Virginia, USA.

Things are not the same anymore. Many people still ask about her, and at times I still get upset. It's almost like losing half of a breath each time I breathe when I think or speak of her, it still stings. But then other times I could be perfectly fine and carry on the conversation. It really depends on the day, sometimes you will have emotional days where you just want to burst and others you're stronger than ever.

Each day is different in its own way, while being a little easier at the same time. I often find myself looking through old pictures from Christmas and birthdays when we were younger, as well as recent pictures. Reading the articles she wrote herself is something I find myself doing. I read them over and over again trying to imagine the things that she was thinking. Sometime it's almost like reading them makes her come back, others it seems like this was all made up and that it never happened. Having little reminders around such as pictures of her or little things she owned makes it feel like she's here with me.

I speak with her every night before I go to sleep, letting her know the day's events, how I'm feeling, or all of the changes that are going on, there are a lot of them. I like to let her know about the positive things that are going on in my life right now too, she loved to hear those. I really believe in life after death, spirits and angels, so I know that she is definitely one.

Sometimes it's as if her illness never happened. Even though she was sick for quite some time, it all happened very fast, and it's almost like it was a dream. It feels like I could go to her house now and she would be there on the couch watching TV as always, haha, and not sick. It still really doesn't seem real.

On a positive note, Krista left us all with many lessons and messages. Things to value such as family, friends, and life. To live life to its fullest and enjoy everything you do. Never give up when things are down, and most importantly think and be positive and optimistic you never know the way things can go.

"You're in the arms of an Angel; may you find some comfort here." - Sarah McLachlan

Giving in and finally dealing

By Kara Rideout

I've wanted to write a article for quite some time now, and no matter how much I wanted to, I always found myself backing away and never really considered why. I mean it's only a journal entry, a story, or a letter you know, how much could it hurt? And now after a very rough month spent facing reality, I realized it was much deeper than writing a journal about my challenge, it was actually dealing with the fact that I have one.

My mom, Jacinta Rideout, died of lung cancer two years, two months, and 16 days ago. I could probably figure out the hours and minutes, too. Funny how time has become so important, every minute brings me one more moment away from when my mom was alive, and one more moment closer to my last days and finally seeing her again (Don't worry I'm not in a rush to leave anytime soon).

My immediate thoughts after she died were "It's Okay, I accept this, she's in a better place now, I'll be fine." But I now realize that accepting it and dealing with it are two totally different things. I never realized how hard dealing with it actually was and how important it is. You never actually get over it and no one should expect you to; it will affect the rest of your life, its just dealing with living with it, because it never leaves your mind.

I watched a movie a couple weeks ago, and in it one of the girls mothers had died, not of cancer, but she said, "I just feel like if I'm always happy and I never stop then it'll be like it never happened and everything will stay the same." When I heard that line I realized that's what I've been doing. I thought if I just keep on smiling and laughing and if I just keep taking care of everyone then no one will notice that I don't have a mother anymore, and then maybe I wont have to notice that she's gone, and then I wont have to deal with how hard it was when she was sick, and even worse how hard it is now that she's gone.

Everyone always commented on how strong I was, and how I got that from Mom. So then my mind told me, well if your like her and your strong like her everyday, maybe it wont feel like she's gone. But in the end, she is, and I had to deal with that.

I spent two weeks in bed, besides going to work. I didn't enjoy going out. I didn't even feel like I fit in with my friends when I did hang out because for once I sat there sad as hell and angry at the world while they all sat there having fun and worrying about whether or not they would find something interesting to do that night. I sat there wishing that's what I could worry about to because I couldn't fake being happy anymore. After a while, my best friends starting getting frustrated and didn't understanding why I was sleeping so much and doing very little interaction. When they finally asked I think I blew them away. No one ever thought I would break down and no one really understood that it was bound to happen.

I'm doing good this week, feeling truly happy that I got my emotions out. I moved away a while ago, and when I came back I tried to convince everyone else--but mainly myself--that I had finally dealt with it because I think I knew all along I wasn't dealing at all and never did.

After reading a book called Motherless Daughters by Hope Edelmon, I now realize you never get over it. She expressed its like a cycle, like the grief cycle, just never ending. Shock-Denial-Anger-Mourning-Recovery. You go through them, and then you may go a week or two, and then something happens that makes you think about it, and then it starts all over again.

I didn't realize how much my mother's death affected everything I do. I don't even think the same anymore. One part of the book expresses how you think of death more, you always think something bad will happen. I can't even drive through and intersection without thinking, "Wow a car could come hit me and I could die." It's sad, but it's the effect this challenge has had on me. I feel I have to take care of everyone, when I need to learn how to take care of myself. I'm not my mother, being her won't bring her back, and it won't make life easier. I'm just a great reminder of what once was.

I never, ever, EVER, told anyone how I felt. Except for maybe desperate plea emails to Geoff, who I want to thank, because he pushed me to open up and talk about it. I know this was a long piece, but I want to express how important it is to open up, and talk to others, or read about others who have gone what you went through so you know what's normal and express what your feeling. Acting happy all the time, and acting like it didn't happen, doesn't make it go away.

I'm proud of myself today. I finally let everyone know what I am feeling, and how I'm only taking it day by day now after two years, and only realizing now that it's all I can do. I just hope my leap of faith into everyone's hands will help others take a leap of faith as well. We don't have to be alone and that's the beauty of RealTime Cancer.

So here it is for everyone to read: Sometimes I'm not okay, and sometimes I don't want to be.

Cancer anniversaries

By Rebecca Flood

April 29, 2005

Two years ago today we got the news. Mom had cancer and our lives were never to be the same again.

Ever since cancer entered my life I'll find a way to make an anniversary out of anything. "Oh a year ago today was the last time Mom had hair," or "Today's the anniversary of Mom's first blood transfusion." It's not that bad really, but there are an awful lot of significant events in the life of a cancer patient that you take note of.

For the first few months, every Tuesday was an anniversary. "Two weeks ago today, Mom was diagnosed." Then it turned to the 29th of every month, and then something else would happen: Remission (July 17), a bone marrow transplant (October 2), a first trip to ICU (October 14), a seizure (November 4), and so on.

At the time Mom's health was the only thing worth noting in my life, so I guess I made a point of keeping on top of the dates and times of all the "events," even the little ones.

Unfortunately, this seemed to be haunting me. I would spend a week leading up to an "anniversary" worrying about how it's going to upset me, and then worrying about how it would upset my family, then getting upset because it was the "right" way to deal. I would get myself worked up and then nothing catastrophic would happen, the date would come and go and often, I would only cry a little.

Then yesterday it happened. Dad had to remind me that it was the anniversary of all anniversaries, that two years ago was the end of life as we knew it. I was shocked, I hadn't thought about it at all. I knew the date but never connected it. Dad, mind you, had gotten the date wrong; he thought it was the 28th! So there my family was in the kitchen laughing because we all forgot, and more importantly laughing at Dad who has become senile over night! So an anniversary (almost) came and went with no tears, no immense all consuming sadness, it's a very different feeling.

When you lose a loved one to cancer, people always tell you it will get easier, that the pain will go away and happy memories will surface. As much as I fought this, it's so true. I never wanted to feel any different, I thought if it hurt all the time then it showed how much I loved and missed my mom. You don't miss them any less, you miss them differently. You're sad less often and you can actually begin to remember them before cancer, which seems like an easy thing, but as many of you know, life before cancer is far less memorable!

Depending on your experience, anniversaries can be more or less intense, but if there is one thing I've learned, they get easier!

How supporters can find out what’s going on

By Carter Hong

Thinking about it now, I was always curious about what was going on with my cousin, Krista, during her illness, and being so young compared to the rest of my family didn't help. I always felt like I would never hear the actual situations, just the brighter side of what was going on. I'd always get the short end of the stick. I know now that it was just my family trying to protect me from being hurt, but I always wanted to know just like everyone else. I would think to myself "I am related too, doesn't that count?" And it does.

Trying to get the low-down on everything that was going on through my parents wasn't exactly the same as talking to Krista about it; you really need to hear it directly from the person. At first I was kind of skeptical about asking her things, I though it would make her feel uncomfortable, but it didn't. I thought she might have gotten upset, and at first she did a little, but it only made her stronger by talking about it. When a person does get upset about their cancer, it means that they trust you, and that they want it to be over just as badly as you do. Once you get your first question over with, it isn't so bad afterwards.

The questions just come pouring out of you, and the answers from the person come the same way. I'm also not the shyest person around, so I don't mind speaking what I think if it's appropriate. You're probably wondering, "What is appropriate and what isn't?" You pretty much have to make your own judgment of that, ask yourself what you would like to be asked, and what you wouldn't. If you're actually close with this person, then you know the boundaries. And if not, just keep the questions as brief as you can for the first little while.

Like I said in one of my previous articles, if I didn't feel comfortable asking Krista, I would ask my parents, or my aunt and uncle. People are generally open once you ask; if you don't, then they assume that you don't really want to know, or are just not interested. Be assertive about your opinions. That tells everyone that you're not just a kid, and that you want to be involved just as much as everyone else if not more.

Other ways to find out answers is looking on the Internet. There is so much information about everything relating to cancer, we might as well put it to good use. Here is a good website, for many different types of cancer. http://www.nci.nih.gov/ I think it has just about everything on it. There's even a dictionary for those who do not understand the cancer terms, just like me.

Other than that, there's one other thing I could suggest. RealTime Cancer. If the person is younger (and by younger I mean below 35), let them know about the site. It wouldn't only benefit you, but them, too. It gives them the chance to express how they feel to everyone. And instead of explaining everything a thousand times, people can just read it online here.

As you can tell, RealTime Cancer helps everyone. If you are dealing with cancer, but not personally, like myself, the website gives you the opportunity to help others who are feeling the same way you are. RealTime Cancer is something that has helped me through everything.

Perspective changes: Organ, blood, and tissue donation

By Rebecca Flood

Just when you think you’ve got it all figured out, something like cancer happens and throws your entire life off course. Just when you think you’re in touch with all your thoughts and opinions, you are presented with this amazing, life-altering challenge that throws all these out the window.

I vaguely remember as a little kid, learning about organ donation. I was disgusted that they actually take your body parts and give them to someone else; I was always convinced I would need them. I guess this kind of stayed with me, as even two years ago I had considered the idea of donating some organs but being selective (thinking I’d like to keep my eyes and maybe my heart). Either way I had never really committed.

I also always wanted to donate blood, knowing it was a good thing to do, but I was too afraid of the needles. I would always make excuses to myself and just never bothered.

Then came cancer.

When Mom was diagnosed, it turned my world upside down. Every aspect of my life was different. You can’t complain about a bad haircut to a mother that has none at all! So all of a sudden a hair dye job that went terribly wrong was nothing to worry about, my perspective had changed.

I tried to find ways I could help that involved more than just sitting in the hospital room. So I decided to donate blood, even though I was scared to death. The way I figured it was if mom can deal with the ridiculous number of needles she receives on a daily basis and a Hickman Catheter, then I can certainly give blood. So that was that!

Then we found out mom needed a bone marrow donor, and I would have given ANYTHING to have been a match (although unlikely). So when I found out I wasn’t I automatically signed up to be a bone marrow donor. I mean if I was expecting someone to give my mom the chance to live, I certainly had to do the same. I also learned a lot about what’s required of a donor, it was nothing like what I had thought. It only takes a couple of hours start to finish, and sometimes all they need to do is extract stem cells from your blood and put the rest back in! It’s definitely one of those instances where the benefits outweigh the drawbacks.

When I recently had my drivers’ license renewed, I didn’t even think twice about ticking the organ donor section, as if it was totally normal. Once I realized what I had done I froze: What if I got hit by a car on my way out of the motor vehicle building and they took my organs, what would that mean? Then, out of the corner of my eye I saw a little kid with no hair. Now he may have just liked the look, but it snapped me back into reality. How could I be so selfish? I still have all the same fears, but it was no longer a choice, I wouldn’t be happy with myself if I didn’t.

Some stranger, somewhere in the world gave my mom hope, gave us all hope, and we haven’t even been able to say thank you. Maybe they did it because they had some connection to cancer; maybe they were touched by cancer and joined the registry for the same reason as I did, I’d like to find out some day.

You hear all those radio commercials and you see the posters about becoming a blood donor, but I can speak from experience that a lot of people never truly think about it until you are in a position like I was, until someone you love needs blood products but they have to wait for two days to have them sent from somewhere else because there are none locally for them.

I’m not exactly the best person to be promoting donation, I was and still am scared of even blood tests, but it’s a very small thing to go through when you look at what patients go through every day.

It’s pretty amazing that such a relatively small effort can save another’s life, provide a bridge to get to a safer, healthier place, and most importantly, provide hope. It takes us more time to get ready in the morning than it does to save a person's life! That’s definitely something to think about.