The Not-So-Gentle Answer

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”. But if I give more information to those who persist, I’m still cushioning my listener: “well, I’m very tired today” or “my platelets are low and I’ve got fresh dots all over” or “when I stand up I get dizzy, my red cells are low today”. It turns out I may have been too gentle.

Stop reading here if you have a queasy feeling already, your intuition is correct.  What follows is the censored subtext to my vague replies…

Blood cells are made in the bone marrow of the pelvis, ribs and sternum. These cells include red blood cells, platelets, and white blood cells. Red blood cells carry oxygen to your organs and muscles, without them you eventually wind down and die; packed cell transfusions are used as a “top up” for this. Platelets help make clots and plug holes in your blood system (it’s supposed to leak a little bit, this is how organs and muscles get the nutrients they need to function); without platelets you risk bleeding to death, possibly internally; platelet transfusions are used as a “top up” for this. White blood cells help fight infection (as opposed to my useless cancerous leukaemia white cells, that do nothing) without good white blood cells you are susceptible to any virus or bacteria or fungus that happens by; IVIg infusions (basically, concentrated other-people’s immune system) are used to ameliorate this problem. I am critically short of all three.

My bone marrow is making much less than 1% useful blood cells, mostly it is making useless cancerous leukaemia cells. Right now, and probably for the next 6 months, I get weekly blood transfusions, of various sorts. If I do not get those transfusions, I will be dead in 4 to 6 weeks. It is personally and intimately challenging to the core of my being to know that my very life depends on the generosity of anonymous strangers. I accept this awe-inspiring gift.

In 3 or 4 months, the chemotherapy may reveal whether or not my bone marrow will ever recover. I very much want it to recover, because the next branch of the decision tree is horrible. If my bone marrow will never recover, I will need a bone marrow transplant.

To be eligible for a transplant in Australia, you must have less than 6 months to live. My oncologist is already doing tissue matching in preparation for that eventuality. There is more than a 50% chance it will be necessary, and it may occur before the end of the year. If my sister isn’t a match, then we will have to go via the international bone marrow register, assuming that I qualify, and once again I am aware that my very life depends on the generosity of strangers. I am humbled by the thought of such a gift.

Only 30% of bone marrow recipients have a curative outcome. Then there are 40% of recipients for whom it doesn’t help, and they require regular blood transfusions for the rest of their (short) lives. The last 30% do not survive the procedure (don’t look up why, just don’t). It has taken me a great deal of introspection, and a heavy dose of the inner strength engendered by martial arts, to arrive at a place in my self where, in the case that I do not survive the transplant procedure, I can accept even this eventuality as a gift.

So there you have it, this is why I simply say “I’ve been better”. This is why I always try to find the humorous side of things, or the absurd side of my treatment. This is why I read so much. This is why bury myself writing software (such as I can, the low oxygen plays havoc with my complexity levels).

I am happy. Tired, but happy. I have wonderful friends.  I am confident in my oncologist, and confident the treatment will work.  I look forward to learning new things, and going to new places, after this is all over.

I accept this gift.


You may be interested in reading the rest of the Not-So-Gentle episodes: (1) this post, (2) CLL, (3) Neutropenia, (4) Platelets, (5) Comensals, (6) Infections, (7) Migraine.