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’m still standing”. It turns out I may have been too gentle.
I am dying. This isn’t hyperbole. This isn’t exaggeration. Back in episode two, I recounted The Death Talk with the oncologist: even with chemotherapy, I may still die; even with a bone marrow transplant, I may still die. Back in episode six, I recounted the oncologist’s advice: “Get your affairs in order”.
I am faced with two competing mental processes. On the one hand, I have to consider the implications of my death on my family, and on the other hand I have to use internal discipline to always think in terms of “after I survive this”.
Curiously, the oncologist talking about my possible death gives us as a family “permission” to talk about it, too. This is a gift. It allows us to discuss some important details:
- Our wills, which are pretty simple with just the one wife, and just the one child.
- Medical and financial powers of attorney. Considering that if an infection gets me, I will not be coherent or competent towards the end, and in a coma at the very end, we have discussed where the line is drawn, the point at which there is to be no further attempts at treatment or revival.
- I refuse to sell the house out from beneath my widow to buy anti-cancer drugs. This is probably the hardest piece of “simple” arithmetic I have ever done.
- What do you want your funeral service to look like? This one was interesting, since it isn’t actually for me, it is for the survivors. In any case, I’m not revealing what was discussed, you will have to wait and see. Preferably waiting for decades.
- Where do you want your ashes scattered? It seems I’m very predictable, and folks had worked this out well in advance: St Helena Crater.
- Deliberately make nice memories. So many people, scared and angry about dying, lash out at everyone around them, making everyone miserable, including themselves. This is not the path I wish to follow. Instead I’m deliberately looking for and making opportunities to do things together with my wife, my child, my family, my friends. And after I survive this, they will be just as nice.
The flip side of the double think is to always use a forward looking mind set, one that takes my survival as a given. To always think of the drugs and the treatment and the symptoms as things that have come to pass, and not come to stay. That after I survive this, I have new things to learn and new places to see.
This positive attitude, though, masks the reality of my situation. And occasionally shocks people I am talking to, when I make what sounds like a casual or flippant reference to the seriousness of the situation, or to my own death.
On the good days, when the drugs are working well, and I can get out-and-about, I look pretty good, and people think I’m doing better than I am. On the bad days, only family sees me.
MT and I have always been a pretty tight unit, “us against the world” sometimes. We added Rowan to the unit when he came along. But this independent mind set can get in the way. Lately, we have had to learn to ask for help. And delighted to discover that there is plenty to be had.
Treatment, or rather, Lack of Treatment
The issue now is that I’m in a holding pattern, slowly recovering from the most recent infection. We aren’t actually treating the CLL at present. I’m taking lots of prophylactic drugs: antibiotics to prevent bacterial infections, antivirals to prevent viral infections, antifungals to prevent fungus infections, and more besides.
The underlying CLL is still messing with my system. My bone marrow is not making any useful blood cells. I get blood products twice a week to give me the blood cells I’m not manufacturing; without these transfusions I would be dead inside a month. However the process is accelerating, and it may be that soon it will be more than twice a week. The lack of platelets, and the less-than-expected benefits of platelet transfusions, means that I’m getting more spontaneous bleeds: by which I mean starting to bleed without an injury to cause it.
However the bone marrow is still producing cancer cells, and, being cancer, that process is accelerating exponentially, leaving me once again in the situation where my heart is pushing around an increasing proportion of useless cancerous blood cells that do nothing, displacing useful blood cells like my transfused red blood cells and platelets.
Until we start to treat the cancer again (and that should be soon, the abcess is well on its way to being healed) we are on a knife edge. If the CLL is not treated, I will die. If the CLL is treated with Bendamustine, but I have no neutrophils, I may die from a massive infection as a side effect of the Bendamustine itself.
In preparation for the Bendamustine, I am currently taking high doses of dextamethesone, a steroid that promotes neutrophil production… if you have any neutrophil progenitor cells left to stimulate. Recent blood tests show 0.0 neutrophils for the last few weeks, so it isn’t looking good.
Whatever the outcome of the dextamethesone, we will move on to the Bendamustine, it is our best alternative, at the moment. The purpose of the Bendamustine is to prepare me for a bone marrow transplant. At present, because I have bone marrow full of cancer, I am not a transplant candidate. The Bendamustine is to attack my bone marrow, killing the cancer cells. In real-estate terms, a bone marrow transplant needs “vacant possession“, empty bone marrow waiting to be colonised by the transplanted bone marrow stem cells.
I was talking to the woman in the chair next to me in the hospital yesterday while getting platelets and IVIg. She said that, on first impressions alone, I will survive all this because I am obviously strong enough to win through. I accept this gift.