I wanted to take some time, over the next few posts, to write about my experience with chemotherapy.
By: Alyssa Burkus Rolf
I wanted to take some time, over the next few posts, to write about my experience with chemotherapy. As many cancer patients and their loved ones know, undergoing chemo is one of the most difficult times in the life of a cancer patient. Your body is physically and emotionally depleted, often leaving you wondering if the toxic chemicals pouring into your body are working, yet you go back, treatment after treatment, for more of the same. Hopefully some of what I write will be helpful to those undergoing similar treatment, or who want to understand the experience in a more personal way.
I wrote recently about coming to terms with watchful waiting, a period of time with no active treatment but ongoing monitoring. We knew that I would eventually need treatment, and it was obvious that I was becoming increasingly tired, but hearing in early January that it was time to start treatment still came as a shock. It was like being diagnosed with cancer all over again.
We were presented with three different treatment options, each with its own risks and side effects, including different implications for future treatments or even access to clinical trials. We had done some research, but working through this decision was difficult. Without a medical degree, we had to decide between three types of drug cocktails.
After making a choice we hoped we wouldn’t later regret, I was scheduled for the first round of treatment a few days later. It was a week before our fifth wedding anniversary. After seven months of waiting, we had only a few days before our lives were turned inside out.
I will never, ever forget the first day of chemo. What the room smelled like, how terrified I was, how much trouble the nurses had finding a vein, the circle of recliners with everyone watching everyone else. I still can’t believe I didn’t cry in the chair. Everywhere you looked, there were patients with IVs, and they could clearly spot the newbie in the room. I was sad for those who didn’t have someone with them – no one to sit beside them, hold their hand or bring a blanket. My husband would often offer to do a Tim Horton’s run downstairs, much to the delight of those in need. Ah, the comfort of a “double double” and a Dutchie when you need it.
I went through eight rounds of chemotherapy (CVP, for those interested in the specifics), which started about seven months after my initial diagnosis. Keep in mind that this was over nine years ago; other treatment options are also available today. I was initially told I would likely only need six rounds of treatment, but after scans halfway through indicated that the tumours were only partially responding to the drugs, the number was increased to eight. The mental shift from six to eight rounds was tough; instead of finishing in the late spring, it extended into the summer. For my overachieving self, hearing too that I was only receiving a partial response was difficult news. No extra effort on my part could improve this outcome, and yet again, I felt my body was letting me down.
I was shocked at how quickly my body changed. My hair fell out like clockwork after 21 days, just as the nurses had said it would. I was pulling it out in clumps and didn’t realize I was developing a fairly large bald spot until a friend, gently, suggested that maybe it was time to shave my head. I was incredibly tired, I couldn’t eat what I wanted to eat, and my body ached. One of the drugs caused nerve pain in my hands and feet that made it difficult to walk or grip. The term “chemo brain” is no joke, and I often felt overwhelmed at making simple decisions or following conversations.
In many respects, being in cancer treatment is like being in another country, or on another planet. Your schedule, how you feel, what you eat, how you look, how others look at you – everything that is normal about your regular life is gone. I often felt like time was suspended. There were very few planned activities that we could count on attending, very little that resembled our normal life. We never knew one week to the next how I would feel, and the moment we thought we were in a routine, new symptoms would appear or become much worse.
Chemotherapy can be a lonely time in a marriage for both parties, and weighs heavily on a couple. Studies have shown that couples are more likely to divorce if the wife has a serious illness, and I was determined not to be a similar statistic. I am lucky to have an incredibly supportive husband, who took most of the emotional ups and downs during treatment in stride, but I was also conscious of trying to tough it out at times, or not have every single moment in the span of six months be about me and my treatment.
I often look back on this time as one of incredible personal endurance. You are running a six month marathon (longer for others) with little preparation, or knowledge of how the route will look. You are running blindly ahead, hoping that the outcome of the race is a good one, but knowing that the race itself is taking a toll, on you and on those around you.
Getting through it certainly not something I say I’m proud of, because doing what you must do is not the same as achieving goals you set for yourself, and there was certainly no other choice but to persevere. It does remind me though that I am much stronger than I ever realized I was.
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Please send your thoughts and own stories – I’d love to hear from you. You can reach me via email at alyssa(at)lymphoma(dot)ca, or follow me on Twitter here:@alyssaburkus
