I spent five days in the hospital in December. But that’s another story…
It began a few months prior. September. I normally love the Fall. There is a crispness in the air that wakes you up the moment you step outside and take your first breath. Young families walk to school again with brand new back packs, some as big as the kindergartners wearing them, new coats and new sneakers. Mist hugs the ground early mornings in the valley close to us which can be both serene and eerie at the same time. Leaves begin their gorgeous transition of color before falling to the ground, leaving us forever. Not this year, none of that for me this year.
When the leaves started to change colors in the fall I started to feel a change in my body. I wasn’t “coming back” from the weekly, low dose chemotherapy like I used to. Perhaps we, the leaves and I, were on the same trajectory.
Tired and unwell, I would spend all day everyday, sitting on the couch in our family room. My blood counts were dropping to the point that blood transfusions became necessary. I would feel better for a week or so and then a round of chemotherapy would floor me again. My body was filling up with fluids to the point that I could no longer sleep lying down because it felt like the fluid would settle in my lungs. The place I sat on the couch everyday also became the place I slept at night, sitting up. The edema added 25 pounds to my body and the extra weight to my stomach put pressure on my diaphragm making breathing difficult. And, it wasn’t just the added weight. It felt like the fluid I was holding onto was toxic, as if, the chemotherapy didn’t quite have a way out of my body. “The chemo is killing me,” I found myself saying one day. I wanted to stop but I still had four more weeks before this round of chemo was done. “I can do four more weeks,” I told myself, "but no more." Dr. Chue's protocol consists of twelve weeks of a particular chemotherapy drug and then it switches to a new one. Ideally, this is done until one's scans and cancer marker are normal. I had been through three of these rounds.
My last week of chemotherapy was the beginning of November and I told Dr. Chue I needed a break (maybe forever). The latest CT scan showed good news in that my body showed no signs of cancer. However, my cancer marker was still high which implied there was still cancer in my body. Some patients have cancer marker numbers that never get within the normal range yet they continue to thrive. Was I one of them or was I one who still had cancer? Who knows? The art of Dr. Chue’s protocol is when do you stop chemotherapy? He prefers to stop if and when the normal range is reached. Regardless, I knew if I continued with the chemotherapy it was going to kill me first. To give me the break I wanted, he recommended a recently approved FDA drug in combination with anti-estrogen and I found myself relieved.
I was excited at having at least three months off and I was looking forward to getting my body back, my vitality back! The thing is…it didn’t happen. All the symptoms I experienced during chemotherapy were still present even though I was done. My blood work showed that, not only was I not getting better, it appeared I was getting worse. The diuretics were not working, my blood pressure was getting to a serious stage, and I continued to retain fluid. There was also a quality to my state of unwellness I had never experienced. I would get these waves pass through me I can only describe as “decay” or “toxic”. Something was wrong.
It became apparent that my kidneys weren’t working properly. The question was, what was the problem? I was referred to a nephrologist, aka a kidney doctor. An appointment with her, more blood work, an ultrasound on my abdomen, and a phone call from her resulted in my five day stay in the hospital. We needed to find out if it was damage to my heart, or damage to my kidneys that was causing all the edema. She was confident the chemotherapy was the cause, having injured my kidneys, but wanted to rule out heart issues. There was also a remote possibility that the chemotherapy had triggered a very rare disease within me. It would have been something I carried from birth only to be activated by something like chemotherapy. The symptoms were the same, the treatment different; the later being a far more serious issue with which to deal. I was going to need a kidney biopsy among other tests and December 12th I entered the hospital.
Here are the three things I take away from my experience the Fall of 2017 aka "The Season From Hell".
1. Follow your intuition, always. I didn’t. I knew something was wrong at least a month before I stopped chemotherapy. My body was trying to tell me something. Instead, the part of me that knows how to do “strong” and “I can endure” won out. I thought I was done with that persona. When I listen within the quietness of my being the answers always come to me. Unfortunately, I had no energy to go to that quiet place and I just did what I was told.
2. Pay attention and ask as many questions as you need to feel comfortable. Rule of thumb - if not asking the question keeps you in fear, then ask it! Fear does not help us heal! I had gotten lazy. Because I had decided that whatever a doctor proposed I was going to do, I quit asking questions. Maybe I didn’t want to know? “I signed up for this so what choice do I have.” is what I told myself. In the medical field EVERY drug we take has side effects which, in my opinion, are down played. The chemotherapy I was on can have a deleterious effect on the kidneys. The new, FDA approved drug I had started can have deleterious effects on the kidneys. The contrast dye in a CT scan can have deleterious effects on the kidneys. Diuretics can have deleterious effects on the kidneys. Each by itself might be manageable by the body. All combined might just destroy it. The question still remains as to how much my kidneys were hurt. At the height of the problem my nephrologist said they were working at less than 30% capacity.
3. Make a fuss. We have to be our own advocate. I know my body and I know when something feels different. I got insistent when things weren’t improving. Doctors see the same symptoms within many patients and can write those symptoms off as the usual side effects of the treatment they are employing which is logical. Yet, sometimes what appears to be the “usual” might just be something needing a bit more attention and it is up to us to see if that is the case. I certainly experienced this first hand.
The leaves are long gone; the trees are bare, dormant, gathering themselves to produce new blossoms, new leaves, new life this Spring. I smile as I write this because, I’m still here, and I find myself doing the same; going within, gathering all the energy the Universe provides, blossoming into a new version of me, again.
As for the hospital stay…it might be the most challenging thing I have ever been through emotionally, but also, the most life changing. But that’s another story…