A little bit about you:
City: Toronto, ON
What was/is your diagnosis?
Biologically, the diagnosis was large diffuse B cell lymphoma (Non-Hodgkin’s Lymphoma). However, the cancer presented itself much more like Burkitt’s Lymphoma — Stage IV — with two large tumors. One tumor was 11 x 10 cm and growing in my mediastinum (chest cavity) and through my rib cage, and the other was on my left ovary.
What year was it? What was your age at the time?
I was diagnosed November 28, 2017 and I was 25.
What is something you’ve done that you’re really proud of?
I am very proud of my education. I earned a Master’s degree from the London School of Economics and Political Science in International History. Studying history is my passion and to do so at such a well-regarded educational institution and in the city of London, England was a dream come true. The degree helped me to get to where I am today in my career as the program coordinator for the Heritage Minutes at Historica Canada.
What is a top item on your life to do list?
I have a long list of travel destinations that I’d like to cross off, continue to learn new things, and continue to study history in whatever capacity I can.
What are your hobbies?
I am an athletic person — I love swimming and playing soccer. I am on a Masters Swim Team in Toronto and play soccer in a City of Toronto rec league.
I enjoy spending time with friends and family.
I love the movies! I love puzzles.
I love history so much. It is my passion. I enjoy reading historical novels — fiction and non.
I am a big sports fan. I love the Blue Jays and Maple Leafs (and I admit to being a fair weather Raptor and TFC fan).
I love a good glass of wine.
I enjoy writing. Creative writing and also just writing about my life. It helps to write out thoughts and emotions so you can see them more clearly.
What was your life like before your diagnosis?
I felt like my life was pretty close to excellent — because we can’t strive for perfection — when I was diagnosed. I had a great job, and wonderful friends and family. I had an active lifestyle and enjoyed the city I was living in. I had just started seeing a new guy. I felt like so much was coming together. It all changed in about 10 seconds.
How did you find out you were sick? What led to your diagnosis?
I had had back pain intermittently for a few months. The first few times it happened, I was travelling with friends and we had done tons of walking and sightseeing so I wasn’t shocked my back hurt. It started happening with increasing frequency in the summer of 2017, so I went to see my doctor. I assumed it was a nagging swimming injury because of its placement right under my right shoulder blade (common injury site for swimmers). My doctor ordered x-rays to be safe, and then wrote me notes to get chiropractic and massage therapy. I did the x-rays in early August 2017 and they showed NOTHING. I went to the chiropractor and thought I was sort of getting better but massage often hurt more than it helped.
The pain came and went for a few months. I stopped swimming to see if that would help it heal. By the end of October 2017, I noticed a lump in my right breast. I went to see the doctor again who ordered an ultrasound.
I had this ultrasound on November 24, 2017. At this point I was in pain. Sleeping was hard because no matter which way I placed my body, it was painful. The chest pain started getting increasingly worse. By the weekend of November 25-26, I knew there was a problem. The pain was terrible. I booked another appointment on November 27 and then my GP told me that there were two masses on the ultrasound. At this point, we still thought it could be a cyst, a torn tendon or ligament, build up of cartilage, etc. No one thought cancer. In fact, I remember feeling relieved that there was actually something there that we could deal with and get rid of. I felt validated that the pain was real. I went down to the hospital for x-rays later that day and my life changed forever.
What were your first thoughts when diagnosed?
My mom and I were waiting in the 3rd floor hallway of St. Michael’s Hospital in Toronto when someone came over to me and asked if I was Joanne. Turns out this was Dr. Pearce and she was the x-ray radiology doctor. She told us then and there that she was very concerned with my x-ray and that she thought it was lymphoma. I remember thinking, “This isn’t possible.” Two seconds before we were thinking it was a cyst or a swollen ligament. Now cancer? The shock of it all was indescribable. I’ll never forget her saying that she has a 23-year-old daughter so this one hits close to home.
She recommended we go straight to emergency to get into CT scans and MRIs faster. We took her advice and I spent two nights in the hospital. When we left the hospital on November 29, I had pretty much been diagnosed (preliminary results from the biopsy) and had multiple follow ups scheduled for the remainder of the week.
In which hospital are you treated?
St. Michael’s Hospital in Toronto by Dr. Martina Trinkaus, who is the greatest. She is compassionate and kind, brilliant and logical, and really gets to know her patients. I am thankful that I am her patient as she is just the best.
What did your treatment consist of?
Initially the plan was to do R-CHOP chemotherapy due to the biopsy results showing diffuse large B cell lymphoma. This changed after the CT and PET scans which showed large burdens of disease throughout my body. It was also impacted by lymphoma involvement of the cerebral spinal fluid (CSF).
The plan therefore changed to do McGrath Protocol chemotherapy. This protocol follows an ABAB drug format and requires a total of six hospitalizations over a period of 12 weeks. It is intense.
- A drugs include:
- High Dose Methotrexate
- B drugs include:
I spent over 30 nights hospitalized over the 12 weeks I underwent McGrath Protocol. The first three weeks deal with the A drugs and have two hospitalizations, then the next three weeks deal with the B drugs and have one hospitalization. You then repeat this formula.
I had eight lumbar punctures done as per McGrath – with intrathecal chemotherapy given. The first two were done by internal radiology. Afterwards I suffered from the most horrendous awful headaches that would only go away after I had another surgical procedure done — a blood patch — to fix the hole in my spinal column and stop the CSF from leaking.
If you have to have lumbar punctures, PLEASE ask your hematologist/oncologist to organize them with the anesthesiology department. I had the remaining six done by anesthetists and had ZERO headache problems. They use much smaller needles (quite drastically, actually) and this makes a huge difference.
Hair loss: This was tough, but with a wig and some fun headscarves, it really wasn’t too big a deal. Hair grows back. I have been truly touched by the number of friends and family who have donated their hair as a result of my undergoing this treatment. I am so lucky to have them.
Vincristine (finger numbness): Just a little bit.
Nausea and vomiting caused by the B drugs the first time around. The second time around, I was prescribed Emend, AND IT IS AMAZING. It really helped to keep nausea at bay and allowed me to continue eating like a regular human.
Exhaustion, fatigue, weakness: These were my biggest side effects. It is hard to feel exhausted all the time. But these DO go away. Let your body heal and listen to what it needs and what it wants to do. Don’t do things because you think you SHOULD be doing them. Just get yourself through the chemotherapy however you can. If you need to do nothing all day, so be it.
Undergoing such intensive chemotherapy is extremely hard. I believe I got through the first two rounds purely on adrenaline, and once that wore off I really struggled mentally. I spoke to my hematologist about this and she prescribed Clonazepam which is an anti-anxiety drug. It has allowed me to keep going and takes the edge of the anxiety quite a bit. Now that I am done treatment, I am slowly taking myself off of it.
You go through so much as a cancer patient, and I was hesitant at first to take the drugs, but the anxiety was really causing intense negativity and it just wasn’t worth the toll it took on my body. I remember counting minutes each day, feeling like I was hanging on the edge of my fingernails trying to hold on to my sanity. It was brutal. So difficult. With the Clonazepam, my anxiety really balanced out. Not to say that I didn’t have anxiety attacks, but that they were fewer and far between.
What is your current medical status?
Life after cancer:
How is life different for you now post diagnosis?
I am still in the thick of waiting for results, so I haven’t fully “rebounded” yet. Physically I am still extremely weak, but looking forward to slowly regaining strength. I’m working on my emotional health as well as making sure I get out and do social activities with friends, but at a pace that I can manage. Spiritually, I am working to repairing my relationship with God as going through cancer can put a pretty large strain on it.
What is the toughest part about having cancer as a young adult?
Feeling like you are putting your life on hold. It is so tough to have your life and the control of it taken away by cancer. I felt like I was missing out on Christmas parties, winter outdoor activities, living normal life.
You will likely be the first of your friend group to go through something like this, so sometimes friends don’t always know what to say. Reach out and ask for help when you need it; your friends will be there for you.
What really helped you to keep going while you were sick?
My friends and family. I could not have done this without them. Reach out to people to say you’d like to chat on the phone or FaceTime. Talking about your cancer helps get you through it, as it normalizes it and allows you to be more confident in yourself that you will prevail.
What kept you you busy during treatment?
Distract yourself with whatever works. I used TV (the Olympics were on which was a huge plus), movies, Netflix, colouring books, friends coming over to visit, listening to music or podcasts, etc. Do whatever you can to keep your brain thinking about something else.
How are you connected with Young Adult Cancer Canada? How did it happen?
My cousin recommended I check out the profiles online as that is how she connected with a young woman when she was diagnosed with thyroid cancer. She found it helpful to speak to someone her own age about her diagnosis and thought I’d find it helpful as well.
Do you feel isolated from your peers since your diagnosis?
Not at all. Everyone is fighting some kind of battle. Mine just happens to be cancer.
Did anyone talk to you about fertility options before treatment? How did that affect your decisions?
Yes — I knew I wanted to freeze my eggs as soon as the words cancer and chemotherapy were mentioned. I had a friend whose sister had undergone the process and I reached out to her to ask about it. My hematologist set me up with Dr. Karen Glass at Create IVF in Toronto and I was able to have 13 eggs retrieved on December 13, 2017 — 16 days after my initial hospital visit. Thankfully I was at a good point in my cycle to begin the drugs right away. I was also thankful that my health coverage from my employer covered 80 per cent of the cost of fertility drugs, which made the cost manageable. Although, even if the cost has been more, I would have completed the procedure anyway as being a mother is important to me.
Fertility treatment drugs are no small order. The entire egg retrieval process was so intense, but I had amazing support from Dr. Glass and the nurses at Create IVF that made the process manageable.
Has your cancer diagnosis affected any of the relationships in your life?
I am closer to my family than before.
If you have children, how has your diagnosis affected the way you parent?
No children yet!
How has your cancer experience affected your body image, and your relationship to your body?
I lost weight on the B round drugs of the McGrath Protocol due to nausea and being unable to stomach food. Now that I am back up to a healthy weight, I have no body image issues.
I am so grateful that my body is strong and able to heal itself from this cancer diagnosis.
What are some lifestyle changes you’ve made since your diagnosis?
I’m not out of the woods enough to make any changes!
Resources and recommendations:
What would you add to a treatment-day playlist?
Which books/movies/podcasts/TV shows/etc. would you recommend?
I read and loved The Alice Network and The Nightengale — both WWII dramas.
The TV show M.A.S.H. is the greatest, Friends, Relic Hunter — anything that makes you laugh!
The Canadian-made movie Maudie really helped me to feel better on a day that I was feeling particularly down. It is the story of a Nova Scotian folk artist who lived a life she loved despite enormous physical and emotional difficulties. She, for me, was the physical proof that you can find joy in everything. I’d really recommend it to anyone who needs a boost. There is joy in life, you just have to listen to yourself and find what makes you happy.
What are your favourite blogs and websites for passing the time?
People.com for mindless scrolling — keep up with the celeb news!
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
See if there is a Wellspring in your area. It is a cancer charity that provides support services to those undergoing treatment and their caregivers. I used them for a few Reiki massages and intend to do a 20-week physical fitness course through them starting in the next few weeks to help me regain physical strength and cardiovascular fitness
Are there any other resources you’d like to recommend?
If you’re undergoing treatment at St. Michael’s in Toronto, I’d recommend contacting spiritual care. They were always there when I needed someone to talk to and very helpful with advice.
I also spoke with the psychiatry team at St. Michael’s who were also extremely helpful.
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
Keep going! One day at a time is a truly necessary cancer mantra. Distract yourself, get through treatment however you can, and then keep putting one foot in front of the other.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Yes, please email me!
(Email [email protected] if you’re interested in getting in touch with Joanne and we will forward your message to her!)