Tuesday, January 4, 2011

Happy New Year - 1/4/11

"Your blood counts are too low for treatment today."

I felt like someone had punched me in the stomach. The nurse proceeded to point out numbers highlighted on her papers. None of the numbers meant a thing to me, and I think I must have zoned out while she went through what my numbers should be and what they actually were. She left the treatment room to check with my oncologist and the research nurse to make sure that it was okay for me to leave for today. I was left totally stunned. Even on my worst days of chemotherapy in 2003, I never missed a treatment. My blood counts then were so low that I had to get shots of Aranesp to help my body produce red blood cells. This chemotherapy was considerably easier on me, and yet, it had already started causing problems that I had no control over.

For a brief minute, I went into panic mode. I've only had two chemotherapy treatments. Today would have been my third and then next week is a rest week with no treatment except for the oral chemotherapy pill (Everolimus or a placebo) that I take every day while I'm in the clinical trial. I'm convinced that I'm taking the placebo and not the real thing because I have not had the infamous rash on my face that everyone seems to get while taking Everolimus. However, I'm okay with that. Being a part of the clinical trial still opens up treatment options for me if something doesn't work down the road.

While I waited, I watched as two nurses tended to a patient who was receiving supplemental oxygen. She was so small and fragile. I wondered if she was strong enough to have her treatment today. Here I was looking as strong as an ox, and I wouldn't get my treatment today. I felt like the last kid standing on the playground who didn't get chosen for a team to play kickball with the other kids. I felt like a failure. I felt like I had done something wrong to bring the blood counts down.

The research nurse finally came into the treatment room and sat beside me. The white blood cell counts were her biggest concern. She gave me a prescription for a 7-day antibiotic. She asked how I was feeling. To be honest, I wasn't 100%, but I didn't feel bad enough that I shouldn't have treatment. I told her that I had what I thought was a cold last week, and by Friday, I had lost my voice. Five days later and I still was barely able to make a sound. I had a cough that produced a lot of phlegm. She was really interested in the color of the phlegm and was not happy that it was green/yellow, as that indicated an infection. She asked if there was blood in the phlegm. There wasn't, but blood comes from my nose daily. She asked if I had a fever last week. I'm sure I did when the cold first started, but it had been before I lost my voice that I'd had a fever. My temperature was normal when it was checked this morning. The mouth sores have started, and already, I was unable to taste my food. The mouth sores burned, especially when I ate and drank. But I wasn't nauseous, so I considered myself lucky. I've continued to eat, but unfortunately, my stomach feels full all of the time, so I've been eating smaller meals. The tips of my fingers have started to bother me, too, especially if I accidentally hit them against anything with even slight pressure. The nails are a light purple. Another treatment would more than likely make them a little darker. My hair was shedding, but it was not coming out in clumps. Again, another treatment would probably produce some hair loss. Having chronic anemia for three years now, I was always tired, but I was not at the point of being fatigued from the chemotherapy. There's a big difference. Clearly, the Taxol and Avastin were doing their jobs. I didn't want to interrupt them.

The research nurse said that I should also discontinue the oral chemotherapy pill. When I return in two weeks to see my oncologist, I had to bring in the unused pills. If it was determined that I could continue with the clinical trial, I would be given a new set of pills. I thought that missing this week's treatment was just a break in the action to allow the blood counts to come back up and that, in two weeks, I would be back in the treatment room getting the Taxol and Avastin. It finally hit me that my current treatment protocol was under consideration for termination after only two weeks. I wanted to protest that I felt fine, that I had all of next week to get my blood counts back up, and that, given the chance, I could do this. But the decision to send me away was non-negotiable. It was obvious that my oncologist and the research nurse were not going to let me deteriorate to the point where they couldn't bring me back, even if I was willing and able. They would nip things in the bud as they happened. They were that good. I, on the other hand, was so unhappy. I never wanted my treatment as bad as I wanted it this morning. I needed to stay in the clinical trial as long as I could. I knew they understood that, but I wanted to remind them. I wanted to plead my case. Instead, I promised to call them if my temperature reached 100.5, promised to wash my hands often, and promised to stay away from children and anyone that even looked like they had a cold. I sadly gathered my purse, coat, and new book and magazine that I was looking forward to reading during what would have been my three hour chemotherapy session. The good thing was that I would get to my office earlier today. The bad thing was that all I could think about was that we had just given the cancer cells two free weeks to wreak havoc on my body.

1 comment:

  1. I am so sorry...just remember clinical trials are created and implemented to learn the most effective treatment. Sometimes new/novel is not always the best.

    I know you are strong and that you will be out running super long distances and doing what you love soon.

    I hope that your blood counts improve and that others are respectful enough to stay home/isolated if they are sick. Be safe...