As I lie here in a clinic bed, watching the nurse put on her gown and gloves to prepare my infusion of Kyprolis (carfilzomib), I wonder how this all became “normal.”
I remember the first time I felt like a medical patient on this journey. It was in March 2016 when I went in for the first of what would be three (so far) bone marrow biopsies. I distinctly remember how strange it felt to be shown into a treatment room, given an immodest medical gown, and be poked and prodded in preparation for the main event, a biopsy. At that point, my diagnosis was still up in the air, and I wondered if that was what my future looked like.
Of course, the fact I was undergoing a biopsy raised my anxiety, but just having to undergo an unfamiliar medical procedure was unsettling. Up to this point, I had rarely needed more than routine visits to doctors’ and dentists’ offices.
By my calculations, I’ve had myeloma treatment infusions nearly 103 times before today. I’ve had three bone marrow biopsies. I underwent an autologous stem cell transplant and all the testing and daily check-ins that went with it. With such a high frequency of doing the same activity for over two years, it would be impossible not to feel it had become part of my regular daily living. Repetition has turned the extraordinary into routine.
I have also gradually accepted that I am a cancer patient. While the procedures themselves keep me grounded in this fact, being around and communicating with other patients helps me understand even more what this means.
The first time I was sitting in the lobby of the cancer center lab, waiting for a blood draw, I noticed many people obviously at different stages of their battles with cancer. Many of the patients looked very ill to me. Frankly, at that time my anxiety was very high, and this waiting area was a frightening and uncomfortable place. I even tried to schedule my blood draws at a local clinic, so I could avoid the cancer center’s waiting room. My doctor preferred getting lab results from a known lab, and I kept returning to this same waiting area. Now I’ve been in this room hundreds of times as well.
Over time I became more comfortable sitting with my fellow patients. I stopped paying much attention to their outward signs of illness and appreciated that we were all there for similar reasons. I feel like I owe an apology to the patients whose outward appearance scared me when I first started treatment.
Prior to my diagnosis, my seasonal allergy pills were the only medication I took on a regular basis. Today I take 10 pills a day, not including the five dexamethasone tablets I take three times a month. Now I consider myself a medication veteran, able to quickly provide a list of medications to anyone who asks (i.e., all nurses and medical professionals anywhere). I know what I take and when I’m supposed to take it. It’s routine.
I expect like most myeloma patients I experienced significant anxiety and depression on the news of my diagnosis. At times I found the stress debilitating. Passage of time alone probably would have reduced my anxiety, but I didn’t wait to find out. I immediately sought counseling with a mental health professional.
Taking this step was probably both the hardest and easiest thing for me to do as I entered this new existence. I knew that I needed to talk to a professional, but it was hard to admit I was in this position. I’d spent the last half-century taking care of myself, but now I needed help.
Talking to my counselor helped me understand that none of this new situation I found myself in is normal and it never will be. I’ve heard many other patients describe this stage of the disease as their “new normal.” I’ve used this same language on these very pages. While I understand the sentiment, I know this really isn’t normal. I have incurable cancer that impacts me every day of my life. It changes the way I look at the future, how I work, and how I interact with everyone I know. That is not a normal way to live, but it is my condition as a myeloma patient, and it likely won’t ever change.
I could fight it and suffer the mental pain of resistance, or I can accept it and learn to cope and adapt.
Accepting my life as a multiple myeloma patient doesn’t make it normal, but it does make it bearable. It also doesn’t mean that I agree with the situation, but I know I can’t change it.
I am still upset that I have incurable cancer, and I am frightened that it may take me away from my family and friends well before I had expected and hoped. My frequent treatment infusions, my daily pill intake, the inescapable fatigue, and minor side effects of treatment constantly remind me of my condition. Over time these things have become routine and normal to me.
I don’t control the pain, physical or mental, that being a myeloma patient causes in my life, but I do control the suffering that pain causes me. When I accept the situation as it is, I reduce the suffering and better enjoy the time I have with my family, my grandkids, and my friends.
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Photo credit: (c) 2018 Mark Pouley
The North Cascades Highway closes each winter and opens each spring when the snow has melted sufficiently to allow transit. Early spring crossings are greeted by the sight of marvelously full waterfalls cutting through the forest. While the paths have been cut and are the same year-to-year, each season brings a new and relentless flow of water the forest has no power to resist.
Lens on Myeloma 