11. No bone Marrow Transplant.
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.
Seven weeks ago, I went to St Vincent’s Public Hospital, for a week. They re-ran every relevant test with their own specialists and their own machines. The result was four specialists saying (yes, but be careful). And then 13-Aug, saw the transplant doctor. All those tests several weeks ago added up to 4 * (yes + be careful). Apparently: 4 * be careful == No.
There are too many things wrong, and of most concern are my lungs, that are only running and 48% capacity (a nasty case asymptomatic asthma). A pneumonia on top of that gives no room for error.
- Statistically a pneumonia is contracted by almost-all bone marrow transplantees, and
- this means that patient is very likely need to be on a respirator, and
- In St Vincent’s experience 100% of BMT patients die if they need a respirator.
There is nothing I can work on to improve, this was the one and only shot at a bone marrow transplant. No second attempt, zero, zilch. Because my lungs are too sick and it would take more time than I have left to fix them. There is also an extensive queue, and very few suitable isolation beds.
The second consideration is quality of life. If I really wanted to grasp at straws, it would take 3 weeks for me to die. It is painful for the patient, painful the family to watch, and painful for friends to see. None of them can enter the room, for a final hug, it’s an isolation room.
This is compared to a reasonable quality of life, for 3-6 months. The transplant team are all working in my best interests. In this situation, my best interest is for them to say “no”. It was hard to find the gift in this as I so had invested myself with the BMT. I have an great quality of life, I spcnd sometime in the workshop, making things. And some time writing software. I accept this gift.
Why didn’t they start earlier?
In order to have any kind of transplant in Australia, in the specialist’s opinion, you have to have less than 6 months to live, without it.
When I reached that point some time around in March 2013. Last year in July I was told to “get my affairs” in order and that a BMT was not a possibility, however, 4 rounds of the experimental Bendamustine and I was put on the transplant list. We started the tissue typing for a donor, and it turns out my sister was a perfect match. And this was the cool thing, my blood-type would change to from A+ to O+, because that is what the graft would have made.
This turns into a tricky balancing act, sick enough to honestly say the patient is Terminal, and well enough to survive the BMT. In my case there was never a sweet spot, I became too sick too fast.
It is very confronting, when reading a form and seeing “Terminal” written in the box labeled “Prognosis”. There is no escaping the fact I am dying. I can still stand, and in particular doing some work in the garage workshop. I have put back some of the muscle the CLL and numerous infections had removed.
Even though my brain injury means I need a walking stick lately. (So my answer “I’m still standing” is accurate.) As my karate grand master Dr Les Harnos says of his brass handled walking stick, “now I can legally carry a weapon”.
It is impossible to know how long I will live, that is dictated by what infections happen, and what sort. We are busy making memories. I accept this gift.
You may be interested in reading the earlier Not-So-Gentle episodes: (1) Introduction, (2) CLL, (3) Neutropenia, (4) Platelets, (5) Comensals, (6) Infections, (7) Migraine, (8) I am dying, (9) Living with purpose, (10) Perceptions of strength.