My only therapeutic option to mitigate the growing cancer in my left lung is chemotherapy, and it's strictly palliative. I would receive the same treatment that I first had back in May of 2010. Veteran of a dozen chemo sessions, I knew it would be hard but had the confidence that I would manage as I always did. That confidence would soon be broken, my emotional armour completely destroyed. I would question my decision to choose this treatment path, and, bitterly wonder if any of this was worth it.
That first day of September I had woken up early. I ate my usual breakfast of cereal, banana and blueberries. But something was not right Within an hour, before I had even left the house I was throwing up. This was the harbinger of my day to come.
I arrive at the Cancer Centre by 8:30am, shaky but feeling braver than I should have. The chemo room is as I remembered it. My nurse brings me to my chair -Number 7, must be a lucky chair I think. Preliminaries consist of going over the procedure, asking me questions from the ESAS survey. My scores for anxiety were concerning my nurse. But the process continued, and soon I found my shirt open, my chest being swabbed, and the moment of truth: with the nurse telling me to breathe out, the needle was pushed into my port. My thirteenth chemotherapy had formally started.
I was feeling OK, figuring the rest was just like before: get my computer out, sit back, wait for the pump, go home and rest. Every assumption I made from then on for the rest of the week would be wrong. It began with the anti-nausea meds.
I was given a pill to take that would help settle my stomach and thwart nausea. At the advice of my nurse, a preventative shot was also administered. Then another. As the hours grew I found I was cold, and asked for a blanket. My nurse put a cold cloth on my forehead. I was chilled and sniffling. That I was going to get sick was now inevitable. I told my nurse what was going to happen, and rather than scaring the patients by using the styrofoam cup at my lap, he helped me to the washroom. There I threw up for the second time that day. It took a while before I finally emerged, weak and shaky. Instead of going back to the chair however I was guided to a bed. For the first time ever, I was now in a room and given a bed to lie upon. Clearly my chemo was going badly.
But my ordeal was only beginning. Several nurses would check on me, discussing my nausea concerns. I still felt sick. Once more my shaky legs -I'm wearing a knee brace for a torn lateral meniscus - help me guide my attached IV pole to go back to the washroom, where I expunge the yellow bile that the chemo has put into my stomach. I return to my bed, but seeing the concern on the faces of the nurses tells me I'm in bad shape. Drastic measures -I'm put on a Gravol IV drip, and finally my nausea passes. Drowsiness causes my eyes to close. I rest, and I feel better. Ironically that would be the best rest I would have for the remainder of the week.
Because this was the first of a new round of chemotherapy, I was prescribed Avastin, to inhibit the growth of new blood vessels. Basically this cuts the supply routes for tumours. It's given in declining doses per session. As this is my first round, I had a 90 minute infusion of this drug. The last part of my treatment would be the attachment of the 5FU pump. I had brought my carrier with me -I had kept it all these years. Putting it on for the first time was somewhat bemusing, as the waist size was still set from my last session five years ago. I needed to let it out somewhat for today. With the pump on me, and three more bottles of medication to bring home, I was ready to leave. I had arrived at 8:30am, and by the time I left the Cancer Center is was nearly 3:15pm. It was a long day. And it would only get longer.
I would wear the 5FU pump for 46 hours. In theory it gets installed Tuesday, and Thursday afternoon it's removed. All I have to do is endure. For the first day, I was tired and listless, but couldn't really sleep. Only later that night would I find out how elusive sleep, and more importantly, rest, really was. I couldn't get comfortable, a side effect of the chemo was that every two hours I needed to use the bathroom. But due to my bad knees it was painful to hobble to the bathroom, using a cane. At time's I'd resort to crutches. Despite air conditioning it was hot. The entire region was under a heat alert for days, the humidity and heat cruelly confining me indoors for nearly the entire week. But the lack of sleep was more than fatiguing - I couldn't tell if I was sleeping or having waking dreams. The dreams were always agitated, disturbing and exceedingly exhausting. The only other time I've experienced this was when I was under major anaesthetic for my past surgeries. I was getting scared that I couldn't cope.
I was exhausted. And it got worse. I was restless, in pain from my knees. There was no position of comfort -on the bed, couch, chair. Desperate for any kind of comfort I tried sleeping on the floor with quilts and blankets to relieve the pressure on my knee. Nothing worked for long. I would get up through the night, trying to rest on one of the two couches, before eventually returning to bed. It wouldn't be until Labour day the following Monday before I felt I was getting actual rest. My eating was driven by random cravings -a necatarine here, maybe some cereal. Some soups were appetizing, others simply turned my stomach. For a small period I would lie in bed, craving a simple ham sandwich.
Tired, jittery, exhausted and in pain it was thus no surprise that my emotions were raw and brittle. I would find myself crying during those long nights of pain and sleeplessness, frustrated by the inability to do simple things -walk, sleep, eat. The pain in my knees exacerbated my emotional pain. My despair grew worse. And then when I thought I was bad, it managed to get even worse. My most despised chemo side effect manifested itself: constipation.
It might seem amusing, but this chemo is diabolical. First it siphons away your appetite, then causes intense pain while attempting to relieve your bowels. Because I was getting up to go the washroom every two hours, it was natural to try to find some relief. Only relief never came, just exhaustion and pain. The effects intensify even after my 5FU pump was removed Thursday. I don't remember details, just the gradual resignation that everything was hopeless. My despair grew, and my stock of hope evaporated. I seriously questioned my choice to take on this treatment. I just wanted to be done with chemo, done with cancer, done with life.
In my past chemo, the turning point was usually when the 5FU pump was removed Thursday afternoon sitting in the exam room, waiting for the nurse to remove the pump, I prayed I would soon feel better. My CCAC nurse evaluated my state and was concerned at how I was faring. For the only time I can recall, I was nearly sick again as the pump was disconnected. The profound feeling of helplessness was now pervading my every thought. That Thursday I thought I would be better in 24 hours, after all that's what I remembered. But that was five years ago, and my body simply wasn't up to the task.
Thursday night started the two worst days of my ordeal. Post chemo, post 5FU pump, I should be recovering. Instead I'm shaky, jittery. My sleep has left me exhausted, I cry at the smallest things My knee pain causes me so much discomfort that simply rolling over in bed is agony. I am depressed and despair that I'll ever feel comfortable. And through the next two days the discomfort from constipation grows. Fibre is key, water is key, patience is key. I can bring the first two into play, but I have no patience, no energy. It's a struggle to drag myself out of bed multiple times through the night to try to find relief. I'm just so tired, so damn emotional. I am bitterly angry at cancer for doing this to me. Not for the last time I seriously doubted my decision to engage in chemo.
For the first time in my life I'm saddened by the fact that I don't want to go on: With treatment. With suffering. With life. Why do I have to endure this? Where is the so-called quality of life? I am unable to think rationally anymore. I badly need rest and I am scared. I can't sleep. I just want this journey to be over. I want to give up.
Saturday, and a small glimmers of hope appear. My constipation battle is passing, so to speak, with help from stool softeners. My knee pain and sleep issues are still with me, and my appetite is returning I force myself get some exercise. I can't walk, but we have a small utilitarian exercise bike in our basement. I ride it for five minutes. Later I ride for 20 minutes. I have no stamina. My knee isn't adversely affected. Then an amazing resource comes to my assistance: one of my brothers has driven four hours to visit me this afternoon.
I rarely see my siblings, and given my current emotional state it was absolutely what I needed right then. We discussed in detail my emotional tribulations, and the core of my fears. When he left several hours later I was, if not calm, at least had a plan for the coming week. That plan would include meeting with my Oncologist to discuss my treatment and determine if it could be moderated to lessen the effects. Plus I figured out why my knees were bugging me: I had stopped taking my pain killers the day of chemo and never resumed them. Saturday night I would take one pill and was rewarded with, if not deep sleep, then a less pain-filled sleep.
I struggle to find my way back from those despair-filled depths of the previous week. By Tuesday -a week after chemo- I would feel somewhat rested but still not sleeping regularly. I ride my mountain bike, short distances, simply to be outside and get real exercise. I would relearn that I only have to enjoy my time now, when I feel good. I schedule an appointment with my Oncologist before my next treatment to discuss options and alternatives. I had drifted through my first treatment without conviction that there would be any benefit. I need a plan that it will make a difference, else I'm just wasting time.
By September 10th I've managed my day-to-day life better. It's only taken nine days, twice as long as it once did. Pain medication seems to help my sleeping. And I eat a lot of fibre. For the first time in months I worked on one of my small electronics projects. Am I getting better? Only time will tell. I have completed one chemo session, there are five more to go before an assessment will be done on how effective this treatment is. I hope I have the strength to see this through.
So my plan is simply this: continue with my treatment. Try to eat healthier. Find a way to manage my knee pain. Bike ride when I can. Prepare for the inevitable chemo side effects. Finally, learn to ask for help before I'm so overwhelmed that I feel there aren't any options left. There are always options, perhaps not ones we want to make, but ones that we can control.
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