The idea behind my treatment is of course that I will live longer…
After my experience this morning, I’m beginning to wonder whether I’m not going to spend most of the time I gain waiting at the hospital.
The initial blood taking and conversation with the specialist proceed swiftly after checking in. But then the wait seems to take forever. Ok, it’s only 4 hours now, and I do understand that processing and checking my blood and preparing the medicine take time. Still.
The situation frankly made me feel a bit neglected. That is: until I realised that even Lou Reed Himself had to wait for his drugs…
First thing you learn is that you always gotta wait
I guess that, if Lou could wait then so can I. I ‘m good…
Most of us (I think) feel more comfortable when things are clear and certain. In science, of course we know that very few things are really certain: we use statistics to reason with uncertainty and visualisations to try and understand uncertainty (box plots!). Certainly in science, reducing uncertainty is a Good Thing.
So, it is somewhat ironic that, in an interview I did recently about my Round 1 experience, I said
Als ik herval, zal ik weten dat ik niet genezen ben. Dat is het enige moment waarop ik zeker zal zijn.
If I relapse, I will know for certain that I am not cured. That is the only moment that I will be certain.
Stephen Fry meets interesting people (Damien Hirst, Oasis, Prince Charles, …), goes to interesting places (I wouldn’t mind spending a few weeks at the London Savoy) and leads a generally interesting life. The problem is that it’s just not as interesting as he seems to think it is himself.
That’s more or less what I was going to write, because I thought it sounded funny. Until I realised that it isn’t actually true. (And maybe not that funny.) From this autobiography, he doesn’t come across as a person who takes himself very seriously. He actually seems rather amicable. Wouldn’t mind to have him among my friends. And he certainly does know how to write.
So, why did I not really like this book? I think it’s because it has too many anecdotes, too little introspection and analysis… It’s a bit like a talk show can be at its best: interesting, funny, a great way to spend some time, good company all around… But, at the end, it doesn’t go very deep. It doesn’t really touch me.
Maybe I’m just a bit too serious myself.
There’s little I can think of that beats fresh eggs and bacon with the family on a sunny early Summer morning… I’ve had worse Thursday mornings.
My first treatment last Tuesday went very well: no side effects whatsoever. The advantage of ‘smart medicines’, I guess ;-) Bit tired, but I think that’s more a Mind Thing than a Body Thing.
In the mean time, people keep sending me Good Stuff to lift my spirits. Like this one (thanks, Martin!):
After two CT scans, an echo-cardio, a biopsy, countless blood analyses and some discussions, I am now a Man with a Plan. (No, not that kind of plan. Read on!)
For relapsed T-cell lymphoma, the basic plan boils down to get me into complete remission and then do an allogeneic stem cell transplant.
(I’ve had an autologous stem cell transplant in November. That was necessary to get my systems back up and running after a high dose of chemo. This time, the mechanism is different: I will get someone else’s stem cells and those are supposed to go chase my cancer cells.)
OK, so that clearly leaves us with two simple questions:
- how to get me into complete remission?
- where to get a stem cell donor?
For both of these questions, the plan is clear now. I will participate in a study with an experimental medicine to get into remission. This one is part of the ‘smart medicines’ that target specifically the cancer cells and should leave the rest of my body alone. (Nice side effect: less side effects, as the rest of my body is more or less left alone. So, hopefully not the nausea of last time…) It’s pretty interesting stuff actually: a class of so-called “PI3K inhibitors” interrupt the communication line within the tumor cells. That means that the message to replicate doesn’t go through. So the cell doesn’t replicate. So the tumor doesn’t grow. Which means that it eventually dies. And leaves my body. Good riddance.
For the stem cell donor, we’ll first try my sister and brother, who each have a 1/4 chance to match with me. (You may want to take care of your family bonds if you’re not so close with your siblings…) If neither works, we’ll try to find a donor in an international donor bank. Probability to match with an arbitrary individual: 1/50.000. But, as a privileged (in so many ways) White Western Man, my chances are apparently quite good.) Still, it’s really nice if you want to donate – do go ahead and register (in Belgium or elsewhere) – but you can’t be tested for me specifically. (Nice of you if you considered that though!)
That’s the plan. There are some risks. Hey, it’s an experimental medicine. And allogeneic stem cell transplants are not without risk. But it’s good to have a plan.
And what does a man with a plan do? He executes. So, I’m writing this from my hospital room, waiting for my first dose of copanlisib… And guess what they just brought? Here we go! Start of Round 2…
I wish I was sometimes half as optimistic as most of you seem to be… I didn’t actually win the first round – let’s call it a draw. And though I do intent to win the second round, regrettably that’s far from certain. Still, your encouragement and the fact that you care is nice… And it is hard to find the right words.
People often say that the public personae we project on blogs and social media are too positive. I’m not sure that this is true. But just to be clear: of course, I am scared from time to time. Scared that I will die for instance. Or scared that this cancer thing causes hurt for my Beloved Ones. (Dreaming about my own funeral two nights ago didn’t help.) Or scared that… Mmm, well, actually, that’s it. I think that those are the only two things I’m scared about.
Still, a bit contrary to what some of you seem to think, I’m no superman. Or, if I am (and then I’m sure that you are superman too – or superwoman), I am a Sometimes Scared Superman. Hope that’s fine.
Speaking of superman: