A Doozie

Posted on December 7th, 2009 by Cam.
Categories: Let's talk.

In either my teaching or running camp stuff, I used to love posing questions to kids and adults that were quite challenging on ethical, personal or social fronts. An example would be, if you had to choose between being blind, deaf, or unable to speak, what would you do?

I would usually explain to the group first that I wanted an answer in the first 10 seconds – their initial response. I would then give them a time to think about it more deeply (once I had comforted and assured the younger students I wasn’t going to put them through any body altering procedure). The processing of such questions I found fascinating. Now, I am not such a fan. This one is a doozie.

The last few months, as I have mentioned, have been incredibly uncertain. The prognosis has been probably the poorest in the time I have been sick as the cancer went out of control exceptionally fast. The good news I got a month or so ago just did so much to turn my thinking around – I can’t explain what a difference it made to my mood. I can’t remember getting such good news the entire time of being sick, apart from when they told me I would be unconscious before they put my urinary catheter in. In that instant, I didn’t want to know the details, who did it, or what comments were made. I just silently rejoiced.

The wonder drug that I am on now is brilliant – few side effects and very effective. Unfortunately it is also very expensive, and the government thankfully foots the bill, but only for about a year. We can possibly stretch this out to 18 months with something off the top shelf or by halving doses, but that is how we are looking at the moment. This is the good news.

The complicated decision is what treatment to do next. My biggest hope at this stage is what is called and allogeneic stem-cell transplant. This is where someone else gives stem cells, as opposed to the last one I had where I took my own. We have done the tissue typing, and my sisters are not a match.  In fact, Carms might be adopted (Sorry Carms, can’t remember if I mentioned this today when I popped around). But there are 6 excellent matches in Australia, and more worldwide, so I have the option.

The thing is, I only just scraped through my last transplant. Kidney failure, chest infection and hospital meatloaf all took their toll. Dr Brad has told me a number of times that the risk of me not making it through this allogeneic transplant is high. The Haematologist who conducts these transplants in Perth said the same. Both Doctors at the time (about 9 months ago) supported me in my decision when I told them I had chosen to not go ahead with this transplant.

If the transplant is a success, I still risk acquiring Graft Versus Host Disease (GVHD) where my immunity is compromised for the rest of my life, and my quality of life would be largely unknown. My body still hasn’t fully recovered from the last one. Quality of life means a great deal more to me now in terms of making these decisions, even though I realise I have still been far better off than so many others.

The bottom line of the up-side, is that this kind of stem cell transplant is my best shot at a longer remission. If it works, I will have a shot at a few years – five maybe, who knows. The thing is it could be five great years, or five really difficult years.

Then there is the issue of what I would be risking on the Roulette Wheel, or maybe ‘Craps’ would be a more appropriate association. In order to do the stem cell transplant at all, I would need to be in the best condition I can be. I would need to be well, fit and mentally strong. That time is coming up soon. My window period is not far off, so I am going to be considering this around about March next year.

As it stands at this point, I will be risking possibly a year of good quality of living whilst on Velcade (that is if it remains effective for me) to take on this procedure where the mortality risk for me is very high, to possibly get some more years that might or might not be worth getting out of bed for, if even that is an option.

I have decided to not think about it for this month, except to write this entry down, except to explain it to family and friends, except to consider it in the privacy of my own thoughts, except in the waking moments and the ones where I get to shut my eyes.

I am honestly not as worried as I should be, and that is the Peace that cannot be understood. I know that I may get worried in the future, and I am not pretending to be on top of this at all. It is just that I still feel upheld. In no way, does this make it easy.