From what I write, and the way I describe the process, I don’t want anyone to think that I’ve received anything less than excellent care. Because I have gotten the best (when I’ve gotten care). The process, for me, is just very difficult.
Today was hard. Got caught by surprise. Didn’t know that they were planning on giving me two additional days of chemotherapy starting today. I was especially surprised because I’ve already received my stem cell transplant. So I asked the medical staff the reason.
They said it was to keep the new stem cells from “mixing” with the dying blood cells.Too early for them to start attaching or attacking anywhere. The chemo is being used to “shock” them into submission. From that I assumed that the dose would be considerably less potent than before. On the contrary, they told me that it would be approximately 25 times more powerful than the previous chemo I’d received before the transplant.
While that should definitely kill off my remaining blood cells, I wondered about the transplanted stem cells? Told me that it doesn’t affect them at all! I asked why and they told me they don’t know. It just works that way!
There are many side effects to this process. Huge amounts of liquid are given to keep my organs from being poisoned. That means going to the bathroom as often as every 15 minutes for hours at a time. No chance to sleep and just generally uncomfortable.
Once again to the back story!
The only reason that I’m alive today and survived leukemia ALL is that I got a blood test for an appointment with my GP for a periodic checkup. If it had not been for that, the leukemia would never have been discovered in time to save my life. Leukemia ALL can kill in as little as four days.
Took the routine blood test on Monday morning. My doctor called me about the lab results and asked how I was feeling? I told him not bad. He said: “You’re not doing well! Your platelets are extremely low. In his second call he indicated that I had leukemia. I protested. I really didn’t feel sick. He told me to check into the local hospital. Even though I have excellent insurance, I didn’t want to go in because I was afraid of being charged for an unnecessary hospital visit.
When Dr. White spoke to me on Monday afternoon, my platelet count was about 40K? Normal is around 150K. The rest of my blood chemistry was falling apart. By Tuesday morning, I was able to convince myself to go into the local hospital in Watertown. When they checked my platelet levels, they were at 20k. I was beginning to feel weak.
I was only in the local hospital for transport, not treatment. I was supposed to be transferred to a Syracuse Hospital but the hospital wouldn’t take me! They had an influx of respiratory patients and were overloaded so they refused to admit me. My platelet levels were steadily dropping.
Still wasn’t admitted by Wednesday morning. Platelet levels were around 8k and dropping. I was beginning to feel physically stressed. They still refused to admit me! At that point I was more than concerned, I was scared!
During all of this, my doctor, Jason White, never stopped actively campaigning to get me into the Syracuse hospital in spite of their bewildering refusal to take me.