I’ve always been fascinated by space. Like so many boys (I think it’s a Boys Thing?), I collected articles about space missions from the newspaper and took television based courses on astronomy. Today, I’m amazed that we can receive twitter messages from space. If I ever meet an astronaut, my heart will probably stop beating. Space people are people from the future. Compared with them, I feel like a person from prehistory.
So, today it struck me that my current situation, locked in an isolation room for three or four weeks, is probably the closest I will ever get to the experience of traveling in space in a capsule. Every time a nurse enters my room, through a lock, I now imagine that I’m in my space station, receiving a visit from newly arrived astronauts. As I work away in my room (I do), I fantasise that I am doing Important Scientific Space Work. I do silly very-old-people-physiotherapy exercises, but imagine that I have to stay in shape as I’m floating around in zero gravity. When I feel a bit nauseous, I remember that astronauts often feel that way. And when I go to sleep, I imagine that I am circling the planet in my little capsule. “This is major Tom to Ground Control…”
Hey, it helps me turn my hospital stay into something more fun and it doesn’t hurt anyone, right? BTW, you know what also makes my stay more fun? Cards like the one below (thx, Ilke!):
No, this is not an announcement of my auto-biography. (I bet you saw that coming – sorry…)
On the picture, you see the small hospital library that I took with me for my heavy-dose-chemotherapy-followed-by-autlogous-cell-transplant that will keep me in an isolation room for the next 3 weeks. (Maybe more about that in some future post…)
Actually, I read Coupland’s latest a few days ago. It’s the kind of book that’s difficult to put aside. I kept thinking “I’l just read a few lines from the next chapter. Actually, let me read a few pages. Well, that was a short chapter. Let me just read a few lines from the next chapter.” Etc.
Hey, if you can write sentences like
What is a bus but failure crystallised into the form of two storeys of metal, painted red, hurled out into the world to hoover up losers from the streets of London.
then I’ll read your book too and chances are high I will find it hard to put aside too. Someone who can write like that can write my biography and call it “Worst. Person. Ever.” Anytime!
As an aside, what is it about Canadians? I have only a handful of friends, but half of them are Canadian. Joni Mitchel is Canadian, Neil Young is Canadian, Robbie Robertson is Canadian, Leonard Cohen is Canadian, … My kids are teenagers now, but if we still had to get started raising a family, I would consider moving to Canada to give them a head start in life.
After more than half a year of working from home (or the hospital), I finally went back to Leuven yesterday. Going back made me realise how privileged I am on the work front. It also made me very proud.
Let’s start with the proud part: one of the reasons I chose to go back yesterday was the public PhD. defence of Gonzalo. His PhD on “Awareness support tools. From team to community, from small personal to large public displays” includes some of the finest work we’ve done, for instance on TinyARM (read it) or engagement with public displays (read it). As a promotor, I was very proud to notice that Gonzalo has become such a mature researcher. I take no credit for that whatsoever, but witnessing how students grow is really one of the most rewarding parts of my job…
BTW, dr. Parra will be moving to Lima, Peru. If you know of a nice job opportunity there, please do let him know! (I can transmit the message if you want me to…)
And then the privileged part: over the years, I’ve often told people that I would stop working the moment I no longer like what I am doing. Typically, I add that I can say that only because I belong to the privileged 1 out of 7 on this planet who don’t really need to work in order to have something to eat, a home, clothes, etc. BTW, most of you who read this, belong to the same group of privileged people…
So, when I got ill more than 6 months ago, I decided that I would continue to work. That turned out to be a smart decision: I typically get more energy out of my work than I invest in it. Don’t tell my employer, but I think I would continue my work if they stopped paying me…
What is more: yesterday, I noticed that I have reached a goal with my group that I had set myself many years ago: I am not necessary for them to do Really Good Work. OK, I do communicate with them from home or the hospital, but I hadn’t seen them “in real life” for more than six months. Still, they do just fine (or actually much better than that) without me. That again made me really proud about my team.
Which reminds me: we’re still looking for people ;-) If you know someone – or if you are someone – who is strong on the technical, computer science side and who has an affinity for people and how they interact with technology, then please contact me. It would be a privilege for me to work with such people and I am sure that they would make me proud too in a few years from now…
Sometimes, Echternach (a few steps forward, a few steps backward) can work to your advantage. Last Monday, I had a PET scan to assess progress with my chemo treatment. I felt awful. Splitting headache, nauseous, … I’ll spare you the details.
Turns out that was a step backwards, to make room for some steps forward. (“Reculer pour mieux sauter”…) Yesterday and today, we had not one, not two, but three opinions about the results of the PET scan. (Hey, my health is kind of important to me!)
It can be a bit disorienting to get conflicting advice… Then again, that’s the other side of “patient empowerment”, I guess… But the take-aways seems rather good: I might be in total remission (which is VERY good) or, if not, I am in deep partial remission (which is still good).
The consequence? ‘Ordinary’ chemo is over (yeah!) and, in order to celebrate that (and get the final remainders of cancer out of my body), I will get a super-heavy-dose of chemo, which would kill me, if it wasn’t followed by a transplant of my own stem cells (which were “harvested” from my body months ago) and a few weeks in hospital to recover.
Bottom line: I will probably start that 3-4 week intensive chemo-and-transplant period on November 20 and can build up strength again until then. Bit of a relief. So far, so good. Touch wood and all of that, but still. Rather good…
Last Thursday and Friday were Good Days: got some good work done, felt great. Saturday was a Bad Day: head, shoulder and neck pain, nausea, dripping nose and eye, felt awful. Yesterday was a Good Day again.
Life as a cancer patient can be a bit of a Procession of Echternach: a few steps forward and then a few backward. As long as the first kind outnumbers the last, I guess we’re making progress.
Today, I had my blood tested. I’m a bit wary of the Good News Curse, so let me just say that I’m back home.
When I’m at the hospital, I have to wear an identification wristband. One of the many ways that cancer makes you feel like a helpless child sometimes. I always like the moment when I arrive back home and I can cut the wristband. Like breaking the chains.
Today looks like a step forward…
My Great Sister chemo buddy was so nice to break the news:
I will state it for my brother: his white blood cells were good so he is in for another battle together with his ” chemo-buddies”.
So, I guess that breaks the Good News Curse and I can safely tell you that my next DHAP round has started. I’ve been in hospital since last Monday. First two days typically go fine – actually got some Good Work done, including a proposal for a workshop on Visual Approaches to Learning Analytics for LAK15 – which could be one of my come-back events if things go well…
Since yesterday evening, I’m on Valium and Temesta: both work against feelings of anxiety, which is not why I get them (I think). They make you sleepy, which is a nice side effect in this case. And they work against nausea, which is why I take them. I’m also on Ement, which should also help with nausea. And will soon get something else for hiccups. And allopurinol and Zantac. I’ve had more medication in the last six months than in the previous 48,5 years of my life ;-) Just mentioning, because many of you send me advice on what to take to get rid of nausea.
For now, I’m feeling fine, though a bit drowsy (no wonder, with the Valium and Temesta). And a bit curious about what the next days will bring. Made me think of “Pills, Thrills And Bellyaches” – a record I used to like a lot at the time. It’s about somewhat different pills and thrills, but rather similar bellyaches ;-) Enjoy!
Maybe there is a certain curse in public writing about your health: I’ve read somewhere before (sorry, my chemo brain can’t find the exact post, but whatever you read on David’s blog is worth your time) that whenever you post a positive story, something bad will happen next.
I guess my previous post was a bit too optimistic ;-)
Yesterday, I went to the hospital to start my last round of ‘regular’ DHAP chemo. My expectation was to feel Really Sick from Saturday until mid of the week. The good news: I am back from the hospital, at home, feeling fine. The bad news: the reason is that the level of white blood cells in my blood is too low. (I shouldn’t have called that post ‘Good Blood Snowflake’. Maybe ‘Reasonably OK Blood’ would have been fine…) If I get chemo now, it will take too long to get back on my feet. That’s a bit of a disappointment, as I really want to keep making progress with my treatment…
Anyway, the current plan is that I go back into hospital next Monday. If my blood is OK then, I will have my last round of ‘regular’ chemo next week and we will just have a few days delay. Three weeks after, I will have another PET scan and then I will probably start my autologous stem cell transplant.
For now, I’m enjoying doing a bit of work and look forward to a nice Family Weekend.
I hope that doesn’t sound too optimistic, so that I do not invoke the Good News Curse again…