Bill and I sat on a small couch in the oncology exam room. I anxiously refreshed my Mayo Clinic app on my phone while waiting for my oncologist. The Mayo app has an amazing feature where I can see all my medical notes, my radiology reports, and my blood work among other things in real time. I had gotten my blood drawn just minutes before and I was anxious to see my iron levels; my hemoglobin is always low, but my doctor is more concerned with my ferritin levels. I did NOT want to get another IV, another infusion of iron, and another bought with nausea. So, I sat there pushing refresh, refresh, refresh, hoping I could will some positive blood results.
When my blood work finally pulled up, my ferritin level met my doctor’s threshold, so no iron infusion for me today. “Wheww!” I exhaled. However, I noticed my white blood cell count was abnormally low, it had been low before, but not this low. “Weird,” I thought, “I wonder what that means.”
The customary knock my doctor made before entering brought my thoughts back to the exam room. After we exchanged pleasantries my doctor asked how I was doing, he wanted to know if there were any changes, he wanted to know everything. I started by telling him how good I was feeling compared to how I felt before, feeling well is all relative I have discovered. Whatever they did my lung had made a world of difference in my overall feeling of well being. I had an appetite again. I had more energy than before. However, in addition to the positives I also expressed the negatives. I hate this part, I feel like I just whine to him. I tell him of all my aches and pains, weird unrelated symptoms, like random stars thrown into the sky, and he takes them, explains how they fit together forming a cohesive picture, connecting them into my own cancer constellation.
“Well, I feel like I have pain and pressure behind my ears, like an ear infection, but I don’t have a fever. The throbbing is always there.”
“I couldn’t swallow last week because one side of my throat had a large lump in it and I couldn’t eat anything but liquids. It was gone the next morning.”
“The other side of my neck had a big lump, but then it just disappeared.”
“Every morning when I wake up my hands are painful, stiff and swollen. It goes away during the morning, but I have a hard time opening a jug of milk.”
“My bowels are a mess.”
“My cough is mostly gone, but my lungs hurt and sometimes I have a hard time breathing.”
“I am nauseas.”
“Some days I have lots energy, other days I can hardly get out of bed.”
And so the list goes on, with me talking, him asking follow up questions and taking detailed notes. I finished my litany of ailments, he looked up at me and said, “Well, you have wolves as pets. The wolves are attacking the cancer, but they are also attacking you. We can’t give you the Keytruda today.” I was confused. What did he mean they couldn’t give me the Keytruda? I needed the Keytruda. The Keytruda was helping my body fight the cancer.
He went on to explain: there are unacceptable toxicity levels at which point they can’t administer the drug, I was at that point. It didn’t mean I couldn’t go back onto the drug, they just needed my immune system to “cool down.” He explained that we have several different types of white blood cells. My t-cells (the wolves) had turned on me, they were destroying my neutrophils (the infection fighting white blood cell) faster than my body could make them, making my counts extremely low. I wasn’t there yet, but he couldn’t let me get to the point where I would die from the common cold or more probably the bacteria that lived in my own mouth or gut. My own body was also attacking my joints and my glands, which explained the weird painful lumps and bumps on my body.
I think he could see the panic on my face when he told me I couldn’t have Keytruda and he launched into an explanation of chemical half-lives, reminding me of my AP chemistry days. Some of the medicine would stay in my body because of the long half-life of Keytruda. Additionally, I could try again next week. If my white blood cell count would go up, he would administer the drug.
As Bill and I drove home from Mayo, we discussed my pet wolves. I may recover next week, but what about the week after, what is my long term hope of staying on this life-saving and life-destroying drug? How long can I live with wolves as pets?
Exactly seven days later, I nervously showed up to get my blood taken at my local doctor’s office. It seemed silly to drive the four and a half hours just to get my blood taken. I worked out with my oncologist, I would get my blood taken first thing in the morning, if my white cell count was up, I would get in the car and head to Rochester. Unfortunately the wolves still devouring me and my white blood cell count was still low.
Another seven days later, we found a local oncologist to administer the Keytruda in the chance that my blood work recovered. As she drew my blood, I felt like my blood work would be up, the other side effects had lessened, so I thought the wolves might be losing their grip. Indeed, my white blood cells made the threshold by one point. Despite them never having administered Keytruda before making it a bit more tricky, I did get my infusion. It is such a confusing feeling watching a clear seemingly harmless liquid flow into your veins, grateful that it creates the wolves that devour the cancer, but terrified because those same wolves devour you.
