Apparently, tomorrow is World Cancer Day…
I’m not sure about this concept of having days for specific topics. I mean: is there a World Ebola Day? A World Political Prisoners Day? A Let’s-get-rid-of-religious-and-other-bigotry Day? There are only 365 days in a year and so many worthy causes…
Still, I was asked to reflect a bit on my experience over the last 10 months, and ended up thinking about how cancer is maybe a bit ‘different’ from other diseases…
First of all, being told you have cancer makes you think in a rather direct way about … dying. (I was told my cancer was ‘not a good one’ and that ‘maybe now would be a good moment to start writing my memoirs’.) Of course, unless we make some rapid and dramatic progress, most of you who read this will die eventually (see video below though). But most of us sort of ignore this most of the time, if not all of the time.
I had wondered before how I would cope if someone would tell me that I only had a small amount of time left. Maybe I would panic, or go mad, or become ultra-religious? Actually, it may sound bigger than it is, but, if anything, the last 10 months taught me that I can cope with dying. Not that I especially want to die. Certainly not any time soon. But I think it is possible to make reasoned decisions about what you want to still say to whom and what you still want to accomplish when you start running out of time. I was OK having that conversation with myself – and with a few others… In that sense, this was actually a Good Experience: it gives me peace of mind thinking that I will be able to cope if, or rather when that time comes.
BTW, thinking more about being mortal also made me very aware of how lucky I’ve been so far: I’m very fond of my family, I have a great job, I have no material worries, etc. I’m very privileged. (Chances are that you are very privileged too!)
Second, what is a bit weird about cancer, is that it is the therapy which makes you feel sick, not the disease. My lymphoma was discovered by accident. Besides some swellings in my neck, there was nothing I had noticed. Nothing that hurt. And then I started treatment, and that is when I started feeling really awful. There’s something that feels wrong about that experience: if you have a head ache and you take an aspirin, you feel better. With cancer, I felt fine, and then I started taking medicine, and then I felt really sick.
In general, the logic of cancer often escapes me: sometimes I would get really sick from chemo, sometimes not. I still can’t see a small bottle of water (like the one in the hospital) or smell soup, without feeling nauseous. Every morning around 10am, I get a bad taste in my mouth. Why 10 am?
Third, cancer apparently isn’t really a disease. It’s a family of diseases. I’m not a medical expert, but some cancers can be treated without too much effort and have a 100% survival rate, others never go away, but can be treated in a chronical way. Some require chemo, some radiation therapy, some surgery, some a combination of two or all three. Some are very common, some are very rare. (Yes, I almost felt a bit proud and ‘special’ that my type is a pretty rare one…)
That is why it was sometimes a bit silly when someone told me they knew someone who had had cancer and survived, so I would be OK too. I would look up the details of their specific kind of cancer and it would be an extremely benign one. “You call that cancer?”, a little voice inside of me would yell.
Fourth (and I will stop here, otherwise I will go on forever), cancer has its nice sides too. Not only is it a great excuse when you need one (“I’m sorry that I didn’t finish this in time, but I really suffered badly from chemo this last week.”), but also, it has made me so much more aware of the value of friendship and support.
Yes, people are sometimes a bit clumsy in how they express themselves. (“Don’t stop fighting!” What do you mean: all I do is sleep and feel miserable. That doesn’t feel like fighting. It feels more like … waiting for bad stuff to go away.) But still, I’ve been so terribly fortunate in receiving unexpected messages of support, sometimes from people that I don’t know all that well. Each of these messages gave me that little extra energy and hope, that “they haven’t completely forgotten about me” feeling that helped me get through the day.
I’ll certainly try to be more supportive to others too. When in doubt, do send that message of support. Don’t think too long about it. A simple “thinking of you” will do wonders. Well … maybe not wonders. I don’t believe in miracles. But it wil still be a Good Thing. Actually, that’s something you could do for World Cancer Day. Stop reading. Send someone that message that you think of them and wish them all the best! Even if that someone doesn’t have cancer. That’s fine too…
Rather good news: my PET scan this week showed no remaining signs of lymphoma. None. No suspicious areas that might or might not be problematic. All clean.
(Well, there were some traces of pneumonia, but who cares about pneumonia when you worry about lymphoma?)
I just learned that my hemoglobin level is low, but apart from that, my blood levels are fine too.
This is the best result we could hope for. After 10 months of treatment, it looks like I will spend a lot less time in hospitals in the coming months. (This is where you should hear triumphant loud music, something from Haendel for instance…)
My next doctor’s appointment is in four months from now. Next PET scan in a year. Seems a bit unreal still…
Of course, there’s a roughly 1/3 chance that this is not over yet, and that I will relapse. But, for now, I’m not worried about that. Bad Things can happen to all of us, all of the time – who cares?
(My family came up with this nice plot for a movie yesterday evening: guy battles cancer for a year, wins but gets run over by a car the very next day. Maybe a Woody Allen movie? Guess I’ll pay extra attention when crossing the streets today…)
In any case, this seems as good a time as any to announce the beta release of Erik2.0. Not version 1 just yet, as fatigue is still a bit of an issue – though getting better. Nausea and sickness are gone now, so definitely an improvement over the earlier alpha release.
In fact, I was told yesterday that I can start jogging again! I doubt that my first run will take much longer than a minute. And I’m sure I will be overtaken by people twice my age. Who are just walking. But still, I’m looking forward to put my running shoes on again.
You’re not rid of me yet!
It’s been a while. The reason is really simple: I’m a bit tired…
Take that in a very literal sense. I’m not tired of blogging, or life or something like that. I’m just tired. Really Tired. I’ve discovered new levels of tiredness. Can you imagine that reading half a page would make you so tired that it actually makes you sleep for 3 hours afterwards to recover? No, until a few weeks ago, I couldn’t have imagined either.
Since almost a month, I was just too tired to blog or tweet or Facebook as well. Some of you actually noticed and sent me sweet and sometimes clearly a bit concerned messages. I’m afraid I may have been too tired to answer. But I did enjoy the support: it’s really nice to see you care. I can’t begin to explain how privileged I feel to be surrounded by people like you…
In software terms, I would say I feel like an early alpha release of Erikv2.0: I’m kind of functional, but one of the nasty bugs is that my battery is exhausted after sometimes just a little bit of activity and then takes forever to recharge. Another bug is the occasional nausea and sickness. But my body is working on the bugs and a more stable beta release is imminent.
Erikv2.0 is here and very much alive and Getting Better.
Music continues to help me a lot in this period, like when I feel a bit helpless… Enjoy!
So sure: cancer sucks. But how many people who go through it have all this? Not many. Some have money problems. Some have work problems. Some are on their own. Some have lousy or nonexistent health insurance. Some get inadequate treatment. I have none of those problems. I am lucky almost beyond belief.
Contrary to Kevin, it hasn’t been weeks, but rather like months in my case. And not myeloma but lymphoma. But the overall feeling is much the same…
Moreover, if all goes well (can you all please touch wood, cross fingers, and do whatever else you think may help?), I may have had the last chemo ever in my life. And my dear stem cells, harvested a few months ago, are back in my body, finding their way to my marrow bone, so they can start raising whatever cells it is they raise that will get me back on my feet now that my resistance against infections is gone…
Could be worse, much worse. So, thanks, cancer, but feel free to move out, disappear and never come back. And many more thanks to all of you who have been and continue to be so supportive. Please do not move out, don’t disappear and stay. I may still need you…
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…