Wednesday, February 17, 2016
Weight: 74.3 kgs/163 pounds (Cycle 9)
Alex is feeling upset about his life — struggling a lot mentally/emotionally –seeing Carmine more regularly which is good. Very tough on him — struggling with not being able to live his life how he wants.
White blood cells:3.2, Neutrophils: 1.3
Continuing on the alternate doses of 50 mg-75 mg.
Going back to school on the 23rd, he decided as I was dropping him that he didn’t want to stay in Hamilton, so I waited and brought him home. Each day that week, drove him back and forth. Very unhappy and not wanting to be in Hamilton. Not enjoying it and feeling very depressed. Better the following week, he stayed at school.
Take a moment and consider exactly what you ate for breakfast yesterday morning. Sure, some of us are creatures of habit and can ring off a response such as this quite quickly. Others, myself included, tend to rotate between a select few options throughout our week to entertain some variety, and it may only take a few moments to count out our breakfast cycle before we can conclude what was served. Everyone else might not have a clue until they’ve had a chance to backtrack through their activities yesterday and a picture forms in their minds.
Let’s extend this exercise to two weeks ago. What did we eat for lunch? Unless you rubbed elbows with the Prime Minister or a famous athlete or musician over sushi, there’s a fat chance we could recall it unless we took a deep dive into our subconscious to locate this fact. As we explore back a few months and years, the ability to recall this information, although not very relevant, is nearly impossible.
Fortunately, solving the problem of what bread was chosen when making our tuna sandwich in June 2018 is not a crucial piece of information worthy of storing. However, as someone currently going through or having concluded cancer treatment, there are certain medical facts and stats that we as individuals like to keep track of.
Moreover, there are rich memories and emotions we experience that would be truly cherished if we had the opportunity to revert back to them days or even years down the line. Resolving this dilemma is not complex; keeping a journal or activity log throughout your cancer diagnosis and treatment — and more comprehensively your entire journey — will save you an endless supply of information and memories.
Blood Sugar counts:
Friday, April 24, 2015: 5.9 at dinner, 9.8 at bedtime
Saturday, April 25, 2015 (Jordan’s mom’s wedding): 11.8 at dinner (gave 5 units of insulin, 11.4 at bedtime)
Sunday, April 26, 2015: 4.2 at dinner, 6.7 at bedtime
Monday, April 27, 2015: 3.9 at dinner, 7.3 at bedtime
Wednesday, April 29
Day Deo passed away, 8:35 a.m.
Alex had a Jalapeno bagel, didn’t feel great after. On way home from hospital threw up in the car and then had to stop in Brampton to throw up again on side of road. Probably a mix of the bagel and the codeine, and possibly the L-asparaginase needle.
Before sharing too much of my experience, I want to stress that I myself did not keep a log or journal of my life for the two-plus years in which I transitioned through phases of my Dana Farber protocol initiated in late 2014. In fact, my mindset at the time of diagnosis — and for several months afterwards — was in utter opposition of ever documenting anything I went through during cancer. Like many, if not all newly diagnosed thrivers, cancer is seen as unwelcome, and we want to deal with its mental, physical and emotional facts as less as possible.
At 20years old, my mental space travelled two-and-a-half years ahead to the date my oncologist justified would be my final day of treatment. I didn’t want a journal documenting what I perceived were going to be the worst years of my life. Luckily, my mom had other plans.
As I write this, I am typing next to a leather-bound, mid-size notebook with a felt bookmark, chock-full of my reactions to treatment, my haemoglobin levels, blood pressure, mental breakdowns, conversations with my visitors in the hospital, and progress through treatment. It’s actually quite overwhelming the amount of information that is in this journal.
Friday, December 5, 2014
Alex woke up feeling okay but as the morning went on the headache is coming back. He said it’s very painful. Sugar at 13 so insulin again.
Doctor came in and said the CT scan only shows an old atrophy area — probably an old hockey injury, but he should avoid rough sports going forward.
His liver enzymes are a little high, most likely the chemo, but they are going to do ultrasound to check.
A lot of this information may seem irrelevant or mundane to the naked eye, or even to another member of our cancer community. That is completely understandable. But to me? To me this is the beginning of an autobiography. It’s all of what makes me who I am today.
I did not start reading this journal until about a year ago when I realized it would be a great way to kill a rainy Saturday afternoon. It was such an overwhelming experience, and not just because I had to relearn how to read cursive writing (come on, Mom!), I was brought to tears more than once navigating the journal for quotes for this article.
Simply opening up the first few pages and reliving the first few nights of diagnosis and remembering the family and friends who spent their time with me in my secluded hospital room brought total body goose bumps. Even something as uninspiring as, say, I don’t know, the omelette and fruit cup I ate for breakfast on December 8, 2014 brought forth a smile! Try and stump me on my food consumption in early 2015, I dare ya!
There is one story from the journal that I’ll never forget. On Friday, December 12th, 2014, I was barred from eating or drinking any foods or liquids, as there was a brief scare of a possible hole in my oesophagus. I was fed nutrients via IV for 5 days. On December 16th, I was allowed to pick my food regiment for the next day and following week. The next afternoon, I sprung up as the knock on the door signalling lunch came. Mac & cheese here I come! After 5 days of not ingesting a single morsel of food, I was enthralled!
But before I could indulge, my dad, who accepted the tray of food and inspected it let out an “oh no”. “Dad, what is it” I whispered. He turned around with the exposed tray, revealing a single tangerine and an apple juice. Somehow, my order was overlooked. Needless to say, the expletives soared across the hospital wing that afternoon, and my poor father made his way to the Swiss Chalet across the street to mitigate the damage. This is one of the funniest stories I have the pleasure of reminiscing about, all because we had the memory noted in our log.
Saturday, December 13, 2014
Alex woke up after a restful sleep — took sleeping pills the night before. He was a little groggy, but much better mood. Tried talking, and feeling less pain. His entire mood is different. Not able to eat or drink today, but he seems OK not to. Said he could eat, but not starving. Had platelets and blood transfusion. Texting his friends back — hasn’t for days. I think he realizes it’s gonna get better from here and not getting as stressed. Rob spent the afternoon. Jordan Good spent all afternoon with him and he walked around the hospital a bit with him.
Of course, I chose to comb through this journal a few years into survivorship. This was simply because when I was journeying through the midst of chemotherapy and managing my emotions and the relationships built and frayed as a result, I was trying to live in the moment. A lot of my emotions were raw, and although there were more moments of downtime where I wasn’t doing much besides sitting in physical pain or sickness, I didn’t want a constant reminder of how bad I felt during the onset of cancer.
I consider myself beyond lucky to have had my parents by my side for my journey as they truthfully kept tabs on the finite medical numbers that were slowly improving as I progressed through treatment. Things like my platelet count, white blood cell count, haemoglobin, heart rate, and liver enzymes. During the month in the hospital following diagnosis, the morning tests to determine my counts were without a doubt the favourite part of my day. I’d get up at 7 a.m. and crank my head left to the massive white board canvassing the far side of my hospital room displaying the chart of my most recent blood counts. I rejoiced with the ups, and was sullen for the downs, but it provided tangible results towards the ultimate goal.
I lost that rigour as my treatment progressed, and my focus turned more to going back to school and trying to set some type of plan up for what I wanted to do with my future. My parents, and the journal that my mom kept to document each of these appointments and the important information, helped me to keep on track of anything that I could not recall months after these hospital visits.
Wednesday, June 3, 2015 – Was supposed to start cycle 7
Weight: 64.6 kgs
After meeting with Dr. Schimmer and being told he’s ready to move onto the next cycle, we went to the fourth floor. Twenty minutes after getting the beeper, it went off and we were told Alex’s neutrophil was too low to proceed (-0.77). So this week sent home with nothing. No chemo, no 6-MP, no blood thinners, yes septra and bone pill. Alex very upset by this as it pushes his cycles back a week and cuts into school. Felt good all week, and ate well.
With all of this said, having a journal or notebook with you to document your details throughout your experience with cancer can be a helpful tool for so many reasons. I, as well as the close support system around me, could keep track of my emotions, actions, health improvements, and special moments as my treatment inched closer and closer to completion. I could compare my first few cycles of treatment to the very last cycle, and bring up any contentious points with my oncologist or social worker should I need to.
In survivorship, I could instil feelings of nostalgia, confirm dates and milestones, and create awareness of my inner emotions that may still leave a mark on who I am today. We all know what a factor chemo brain can play in our lives in trying to recall crucial information at the right time, not to mention the overwhelming sense of grief or despair we feel that could hinder our ability to focus on anything but our cancer at any given moment. This is a part of the journey, and it affects our ability to remain aware. Jotting down a few notes every day will go a long way both throughout your journey, and well into survivorship.
So grab a pen and pad today and start journaling! The next time someone asks you how the cod nuggets in the hospital taste, your pros and cons list will be locked and loaded.
January 4, 2017 – **Cycle 24** LAST ONE
Weight 72.4: 159 pounds
Alex’s last cycle — his last in hospital treatment. He saw Dr. Murphy as Dr. Schimmer is on vacation. She said all looked good to do the last cycle. Basically they will see him in three months for follow up, then six months and so on for several years. No major travel for at least six months. Continue bone pull and septra for six months.
Alex got to ring the bell, and a few of the nurses came and cheered as well once I told them it was his last chemo in hospital. He rang it and seemed happy — asked if it was loud enough for us LOL. Back to school to stay for the week on Monday the ninth, but feeling crappy and exhausted from steroids. But he’s managing and went to the gym on Monday after class. Strong and determined and brave my kid.