Lately, when people ask me “how are you?” I have to choose between being polite and being accurate. Most people get the polite answer “I’ve been better”. It turns out I may have been too gentle.
One of the effects of my CLL is that my bone marrow now produces almost no neutrophils. There are still some being made, but far too few, and they get “used up” as fast as they are made. After my chemotherapy in 2010, my neutrophils never recovered to pre-CLL levels, and over the last two years there has been a downward trend in the number of neutrophils in my blood, and the trend line crossed zero a few months back.
It is important to understand that, unlike red blood cells and platelets, neutrophils have a cell nucleus capable of manufacturing proteins, and actively go looking for trouble, and to kill (eat) foreign cells and viruses. If your neutrophils and my neutrophils were stirred together in a petri dish, they would immediately try to kill each other, even if our blood types matched. For this reason, it is not possible to have a neutrophil transfusion.
Last week my oncologist had some serious news. A couple of weeks ago, after two chemotherapy cycles, I had my 7th bone marrow biopsy. The results are not so different than the 6th, done just before chemotherapy was commenced. That is, my bone marrow is full of cancerous cells, and has far less than 1% useful cells. This means that the chemotherapy drugs are not working. My oncologist is searching for a suitable drug, and when she finds one, she then has to find a way to get it for free (I have no savings left, after paying for Mabthera in the 2010 chemotherapy out of my own pocket).
In the mean time, my profound neutropenia will persist. I will get one infection after another, and each will land me in hospital. Eventually I will contract a severe (really bad) acute (really fast) infection that progresses so quickly that intravenous antibiotics cannot halt its progress, and I will die. It may be the next infection, it may be the one after, or I could survive for a year, or even two. The seriousness was underscored by my oncologist, who said simply “Get your affairs in order”.
How do I accept this news? Where is the gift in this news? I had worked some of this out for myself, but it is different when your oncologist says it out loud.
At first I was numb. But a few hours later I was weeping. I will never meet my grand-children, and never take them camping.
Eventually I realised this was the wrong way to look at it. A year will give my oncologist time to find a chemotherapy drug that works.
Yesterday the oncologist had a whisker of hope, and may have found a suitable chemotherapy drug. It isn’t yet available in Australia, and my not have finished all of its clinical trials in the USA, either. Then she must work a miracle, and get them to give it to us for free, but I’ve seen her do the impossible before. If not this drug, then the next one. I refuse to be beaten by infections, and intend to survive until a chemotherapy drug is found.
I am confident in my oncologist and I am confident the treatment will work. I accept this gift.