I’ll Believe In Anything
Give me your eyes, I need sunshine
Well, this is it.
June 2nd I had my MRI. June 6th I get my results. I need it to show the lesions gone or at least reducing in size. If they are, I’m headed for a stem cell transplant, which should be the end of treatment and maybe even a cure. If not, I’m headed for radiation which, I should stay positive about but I don’t see a lot of people sticking their heads willfully into a microwave hoping to cure cancer, unless Orville Redenbacher is the answer. Either way, we move onward. Experience is what you get when you didn’t get what you wanted. It’s not how hard you hit, it’s how hard you get hit and keep moving forward. Whatever I can do to keep living a good life with my family and friends close by my side, that’s what I’ll do.
I remain optimistic. The nurses at Princess Margaret Hospital (PMH) felt good about me when they said their goodbyes. I am young in this big world of cancer (defined by under age of 39). The nurses at Toronto General Hospital (TGH) have seen a lot of Post Transplant Lymphoma Disorder (PTLD) success stories and wished me luck when I last left them.
I don’t want to live forever. I want to live while I’m alive. I don’t want to be living this hospital life when I’m too old to get to an appointment. In the eighties, forty percent of people died in their homes. Last year, that number dropped to seventeen percent as we continue to send our beloved elderly to hospital to be saved from shutting down. I don’t want to die with a tube in my nose for food, one down my throat to breathe, one on my arm for medication, and a couple output tubes to (in my) boot. I want to walk off this mortal coil peacefully, when I’m done, before I’m a burden and when I’ve accomplished my goals — better get to work, time is precious. Deb and I are living on less money but with more time and if this is an experiment, well, I could pick the winner today.
Of course, it’s not easy to say how you want to go. We often don’t get to pick. Gord Downie, lead singer of “The Tragically Hip” and a Canadian art folk hero, announced he has Glioblastoma. It’s a type of brain cancer. It is not my type of brain cancer. My Uncle Pierre passed away April 2013 from the same diagnosis. It responds to chemo and radiation but never goes away, hence the word terminal being thrown around with it. Here’s a weird question for you but how would you like to go? Would you want a chance to say goodbye or pass in an instant? The hardest part is saying goodbye but may be the most rewarding. It’s gut wrenching losing a loved one — life isn’t supposed to work that way, right? We all die together — everyone close to us, so there’s no pain? Inception needs to be real, we all walk into our own dream states with our favourite people around us. For now, as far as we know, true love is understanding pain and the highs experienced around the lows.
I’ve had some great nurses — Jamie, Lynne, Sharm at PMH and Christine, Brooke & Linda at TGH. Nurses make the world go round — show them their due respect. Doctors create orders but Nurses administer, they chat, they get to understand you and will fight on your behalf. I am so very thankful I’m married to one. Deb and I together are a bit of a power couple, her being pregnant, me being cancer-y and so we get stopped in the hallways by Doctors, Fellows, Residents, Cleaners, Transport, Nurses, etc. all just to say hi, hello, how are ya? It’s always nice albeit odd. “I remember you much hairier.” Everyone, all of them, inside or outside their domain, wishes us luck, offers prayers, thoughts, etc. and they see it a lot.
I’ve learned a lot of life lessons and plan to continue to grow mentally and spiritually. I want to do some woodworking, I want to garden, I want to get fit, stay fit, I want to teach my son about life, and I want to be a better friend, better neighbour, and family member. We’ve been so incredibly supported in this whole process. They say, “It takes a village…” well, it does, and it should, and we should all strive to be an important piece of our loved ones’ villages. Giving, benevolence, charity, they pay the highest salary. Remember when my pregnant wife pushed me in a wheelchair? I finally was able to pay her back when she rolled her ankle so bad she thought it was broken. Her family stepped up and kind words can’t do them justice presently, but I’ll say in terms of life salary, they’re doing quite well for themselves.
If you ever wanted a life lesson, head to the 4th floor at PMH. Welcome to the cancer factory. If you ever wanted to see the diverse range of cultures, ages, stages of cancer, some of the strongest yet weakest people, and even if you just need to remind yourself why you’re lucky — go to the 4th floor, just sit and watch, create the stories of the people you see in your head and know that it’s probably worse. When I come in for chemo, I’m in for a 3–5 day stay. That’s irregular. Normally, you hit the 4th floor. You can receive your chemo dose — normal, maintenance, or palliative. You can receive hydration, blood transfusions, missing electrolytes from bloodwork, medicines hung from IV, etc. The waiting area is out of a bad chain restaurant’s handbook — take a number, sit down, get called, get registered and then, quite literally, they give you a buzzer like at a restaurant and you wait. Once called, they tell you your seat (read: table) number and colour and you proceed to walk past a veritable showroom of la-z-boy chairs and IV pumps filled with patients receiving varying levels of treatments from 20 minutes to 8 hours. There are also rooms with beds for those in need. The nurses scurry putting in IV needles, hanging IV bags, and comforting the sad; be it with warm blankets or an open ear. The young sit back with tablets and phones, the elderly peacefully nap or knit and once finished, the chairs are wiped clean, ready for whoever is next and the process repeats. It’s the most efficient I’ve ever seen a hospital operate. I’ve been a few times. The first time, I found my chair, lay back, nurses read my ID band and made sure it matched the blood bags. They hung the blood and began pumping it into me. I looked at Deb, away from the blood, the entire time. I still had gout and needed to pee. The mind works in weird ways. I honestly thought I would pee blood, pure blood, like I had cut an appendage off and emptied into the toilet. I guess you could say I was nervous. I didn’t pee blood. It was clear. Your pee should always be clear. The blood had gone to my face. Deb said I went from grey to pink and I guess I felt better, warmer, energized and we went home. I’m fortunate, I’m lucky, and I’m happy to bear witness and feel the experience and still have a lot to look forward to.
I was out in record time from Round Four of chemo. It took exactly 3 days. I know the game, a seasoned pro. I was discharged Wednesday at 7pm, Deb picked me up. I was walking again. A kidney doc had told us of a miracle drug Rasburicase (or as I lovingly called it Raspberry Beret), we pleaded for it and shockingly, both for us and the Oncologists, they granted it (maybe it was the 6 weeks of gout). It’s very expensive but arguably cheaper than a long hospital stay. We drove home in the calming twilight of the Toronto sky. We were headed north on Friday with Ben and Deb’s parents. Deb’s sister Janice, her boyfriend/Ben’s Uncle Mike, and Deb’s brother Doug were coming up on Saturday. I was ready for a good weekend and was finally feeling healthy heading into it. No gout was a major boost.
I slept, as I do post chemo, until noon, more relaxed because I knew Deb had help with Ben. I walked, without cane, down the stairs, greeted to a wonderfully plated breakfast made by Angie, my mother in law. It tasted as good as it looked. I took my plate outside to sit in a Muskoka chair, under a large maple, overlooking the lake and Ben rushed towards me. He then rushed inside saying, “I have to make Daddy a coffee.” Hello Life, yes, you’re still beautiful.
We came home on the holiday Monday. We went to the market and the park with my mom, Gairey (My step father), and my niece Elodie. Ben and Elodie laughed for days on the swings. I walked Ben home on the Railpath by myself and felt great doing it, physically, and for everything Ben taught me about trains. The next day was routine bloodwork but I was headed into that danger zone (7–10 days) of post chemo results. Deb and I waited for the results; hemoglobin was good, white cells were good, see ya later! I had another appointment later on at Mount Sinai for Rheumatology (gout). I walked over to try and move the timing up and they said they’d let me know. If you’re wondering, yes, I might just know every hospital in the city now. Sadly, I have passes everywhere. While waiting, I got a call from PMH. My kidney level came back sky high and I needed to head back for fluids asap. Everything went downhill from there. They wanted to admit me but I battled, told them I was fine. I was told to go to TGH emergency who found me a bed in a hallway. Our hospitals are over crowded — population density or just a poor solution to whatever ails people that don’t know any better. I met with a transplant doctor and now that I know the lingo, he found me a bed in an isolated unit/private room (I could go febrile neutropenic, right?) I stayed the night and the next morning was brought upstairs to the transplant floor because all my blood levels fell off. I could feel it going bad when I needed Deb to get me a fifth blanket to keep warm. It was disheartening. I received blood transfusions, platelets, antibiotics, and fluids. Then I got C.Difficile and needed more antibiotics. It took a whole week of recovery this time after only 3 days of chemo before I got out. When I did, I never felt better and even had 3 different people tell me it’s the best I’ve looked since I started treatment.
I have to tell you what a stem cell transplant is all about. I hope to get it despite the 2–4 week hospital stay it requires.
I start by sitting in a chair for 1–2 days while a machine literally separates by immature white blood cells (neutrophils) because they have yet to be affected by cancer. I need another port on my body — one in, one out and the blood they take out, they put back in but without those Neutrophils, they are in a freezer. I donate to myself.
Then, as my Oncologist said to me after I asked if they doubled or tripled the dose of chemo, “We beat the shit out of you with it.” I get sick. Apparently, it’s like the worst flu you’ve ever experienced. I’ll get all the side effects but worsened. I’m in an isolated room, you’d have to glove and gown to see me and worst of all, for me anyway, no kids under the age of ten are allowed. I’ll miss Ben more than ever. Then, I don’t get discharged. They don’t wait and see. Two days I suffer and then they begin to rebuild me and my blood. The harvested Neutrophils are put back into me, they will transfuse blood so I can regain strength, they will give me platelets so I’m not bleeding out, they will give me potassium for energy, magnesium for my heart and to calm me, they will give me saline or fluids to keep my kidney functioning and flushing, they will (hopefully) give me Rasburicase so I don’t suffer again from gout. This kind of stuff blows my mind what medical technology can do and what we (well, not me but people that have studied the field) know and the progress we’re making in the field.
This is from a good friend of mine on who is a Radiation Technologist: Radiation depends on location and dosage. During treatment I could have headaches, blurred vision, dizziness, hair loss, and feel pretty fatigued. Long term effects could be a slight loss of memory and concentration but it again, just like chemo, depends on the person and the dosage.
I have cancer due to a medication or being over medicated. One drug in particular, MMF, is said to be the cause according to an Australian study released last October. The reason I have to take drugs is my kidney is not mine, it’s my dads and my immune system is constantly (20 years later) trying to fight it off like a virus. The newest tech my nephrologist told me about was Stem cell transplants for organ transplants. Think about it, if the donor gives the recipient some stem cells prior to the organ, the recipient has a mixed immune system. Therefore, the new organ is recognized by the recipients body as its own and thus, no drugs? No cancer? I’ll believe in anything.