One of the nicest perks of being a lymphoma patient over the past few months is that I received a few really nice and touching messages from very unexpected corners, typically from people that I didn’t know all that well before, who have been quite directly touched themselves by lymphoma. (You know who you are…)
The most recent such message came from one of my first year students, who went through lymphoma treatment a few years ago. He’s about 30 years my junior, but I recognise a lot of his experience. And I was rather touched by the fact that he reached out to me.
As these messages from people with direct experience have been so important to me, I have made a solemn promise to myself that I will reach out to whomever I hear from who goes through the same ordeal. Actually, my student mentioned that he wrote me a message because he had received a similar message when he was a patient, from a teacher that he barely knew, who had gone through the same experience himself.
I was reflecting a bit on this notion of personal connections, and it developed in my mind to a cunning plan for us, lymphomians, to take over the world: I will start a Secret Society that will include only people very directly affected by lymphoma.
Membership of the society will be by invitation only. Members of the society will always support other members. We will develop secret codes, so that I can for instance favour a paper written by another member, even in blind peer review. And, of course, students from the society will get excellent grades from professors who are members of the society. We will have members among the police, who will cancel fines from other members. In restaurants run by members, we will always get the best table. In politics, members will make sure other members get the more important positions. Etc. Etc. It will only take a bit of time and then our society will basically run the world!
Actually, come to think of it, maybe such a secret society already exists? That would explain a lot of things. All I have to do is get through this treatment period and then I’ll get my invitation…
In the mean time, in completely unrelated news, we’re enjoying a week off with the family in Heidelberg and Dresden…
It’s been a good week.
At the start, it didn’t sound all that great: as I tweeted then, “four hospitals in four days”…
Monday was PET scan day. That went rather well. Is becoming a bit of a habit. Though I did had somewhat of an epiphany during the actual scan – from my Facebook:
Somehow, my catholic upbringing played tricks with my mind: lying down on the table for the PET scan, with my arms tied above my head, I had a vision of Saint Sebastian, the one tied to a tree, pierced by arrows. I’m glad to report that a PET scan is more comfortable and doesn’t involve arrows!
Tuesday and Wednesday were “let’s discuss your treatment” days, first in Antwerp (where I live, and have my main treatment) and then in Leuven (where I work, for a second opinion). Basically, the news is good: the tumors continue to respond to my CHOP chemo. The PET scan showed fewer and less intense tumors. So, we will continue with CHOP for a bit more.
In fact, Thursday was my sixth chemo session. It wasn’t all that great at the hospital itself – I’ll spare you the details, also because thinking about it makes me nauseous. But I drove home myself, slept through most of the day and night, and was able to enjoy breakfast on Friday morning. And lunch and dinner. Yes, meals become a bit of a yardstick…
The current plan is to do two more CHOP chemo sessions. In a bit more than a week, we will harvest (apparently, that’s the terminology) my own stem cells and store them. Because a month after my CHOP sessions end, I will get an extra strong dose of chemo (they call it “the bomb”) that will hopefully clean up the by then last remaining traces of cancer. That bomb will also destroy most of my resistance against infections, so I will spend a bit of time in hospital in a clean room. At that time, I will get my stem cells back in order to recover. That will be around end of September.
And that could be the end of it. Apparently, there’s a 75% chance that it will be the end of it indeed and I don’t relapse. (And there are plenty of options left if I end up in the other 25%.) 75% is a lot better than my prognosis 3 or 4 months ago. Actually, if my prognosis continues to go up this way, then it will be better than yours before Christmas!
So, all in all, a Good Week. Plenty of time with the family. Some Good Reading too: finished “TheVisit of the Royal Physician” (thx, Daan!) and started “Der Zauberberg“. Family breakfasts. Family lunches. Family dinners. Lunch outdoors at Charlie’s with Django Reinhard music. Walks with the dogs. Short trips on my Brand New Bicycle. Sunny weather.
A Good Week…
I so like this way of putting things:
“Impostor Syndrome is that voice inside you saying that not everything is as it seems, and it could all be lost in a moment. The people with the problem are the people who can’t hear that voice.”
It reminds me of the Betrand Russell quote:
“The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts.”
“The people with the problem are the people who can’t hear that voice.”
(Thanks to John Gruber for putting this in my news feed.)
So, I had my fifth chemo session last Thursday. As I recovered quickly after my previous session, I was of course silly enough to expect the same thing this time. Silly, indeed, because I started feeling nauseous as soon as I entered the hospital, even before I got any chemo into my veins! And I still get waves of nausea today… (I’ll spare you the details.)
You see, it’s all in the mind: apparently, some patients get sick as soon as they enter the hospital. I’m trying to come up with strategies to make my mind work for me in that sense. Thinking about nature (polar bears, river valleys, our dogs, …) certainly helps to feel better. Discussing my health (or writing about it, as I discover now) doesn’t help at all. Doing Work Stuff helps. Watching an exciting game of soccer helps too. As does watching Monty Python’s Holy Grail, after so many years, for the first time with my kids… (Any excuse is fine to include a Monty Python clip in my blog posts!)
There’s a Bigger Theme here: in the FIFA soccer world cup, it seems to me that the mind plays a big role too… The Netherlands played awfully against Spain in the first half and then superbly (well, somewhat…) in the second half. Same players. Different mindset? The Belgians didn’t play that well in their first three games. Really hope their mindset will be different this evening.
And I often see this with my students too. As a teacher, my main role seems to be to make them believe that they can solve the problem they’re working on, and maybe motivate them a bit to do so. And then they can actually do it. If I put them in a negative context, they can hardly remember their own name.
Hey, I’m like that too: sometimes, I’m in the flow, it all comes naturally, I (have the feeling that I) get loads of things done, etc. And, sometimes, I put a lot of effort into achieving … very little if anything at all.
Hmm, something to keep my mind wondering about. Maybe that’ll help with the nausea too. If not, nice cards like this one will. (Thx, Els!)
Suppose someone told you earlier today that your latest work was ‘a significant improvement’… How would that sound? Kind of good, no? Not just an improvement, but a significant improvement! Still, you would also hear a certain hesitation, a hint that things need to get (should I say significantly?) better still. There’s a bit of a negative-wrapped-in-a-positive in that ‘significant improvement’. Kind of like ‘better, but not good enough yet’…
So, that’s what I was told about my PET scan last Thursday: it’s a significant improvement over the original one. Many of my lymph nodes are back to normal, but I still have some smaller tumors in my neck and armpits. So, we will do at least two more sessions of CHOP chemo and then I will have another PET scan in about six weeks from now. I sure hope for more significant improvement by then!
Now, it may sound like I’m not over-enthusiastic, and I sure would have preferred to have been declared tumor-free, but ‘significant improvement’ sounds a lot better than ‘no improvement at all’, or ‘things have gotten much worse’ ;-) !
Also nice: I was up and about on Friday, the day after chemo, and fit enough to go for a walk on Saturday! The longer this takes, the smoother it goes, so it seems, which is kind of different from what you often read about other people’s experiences… Good for me!
Even nicer: I keep getting nice gifts, like this one, from my students:
What can I say. I’ve had my third chemo session last Thursday. And I’m fine.
One can get used to a lot of things. And, a bit in contradiction with what I read and thus expected, I actually seem to recover better as we move along this chemo thing. That’s good. I do get more unexpected waves of nausea with no apparent trigger, which is a bit less good.
Anyway, this may have been the boring chemo session. Right before the next one, I will have a PET scan that will tell us whether the chemo is working. That will be a bit more exciting. The then next one, my bone marrow will be tested: it should be clear enough of cancer cells to be able to take my own stem cells for an autologous transplant a bit later. That will be a bit more exciting too. And the then next chemo session, if all goes well (fingers rather strenuously crossed), will be my last ‘normal’ one. Thereafter, I will have a Real Big One, the one that requires the autologous transplant of my own stem cells in order to recover. That should all be quite exciting too…
But, for now, a little bit less excitement is fine and I’m happy to have passed my most boring session. I think I will go enjoy my cancer card a bit… (Thank you, Ilke!)
Cancer saves money. Really. In the past, I drove about 35.000 km per year, traveling, commuting, etc. This year, I will do less than 10% of that. Money saved on fuel, maintenance, … That also makes cancer environmentally friendly, I guess. I will also save on shampoo, haircuts, travel, etc.!
Cancer saves time. Really. No more traffic jams during my commute – I just climb the stairs to my home office (which also has a way better view than my university office). Although I do a fair amount of video conferencing, I have way less meetings than I used to. I can’t go to busy places like shopping malls or movie theatres – more time saved!
Cancer is an excellent excuse for not doing whatever you don’t want to do. Few people will argue with you if you decline a request, citing cancer as the reason. I’d really love to come speak at your event, or I’d really like to review those papers for your conference, or I’d really love to participate in that midnight conference call with you, but – I hope you understand and I do apologise – I have to focus on my health now… Always works!
You see – everything has a bright side. Not only Johan Cruyff knew that, Monty Python knew it too (and they also played football, but I prefer Johan’s version of The Game, which indeed is a form of art)
So, here’s to the bright side of … hmm … like everything!
BTW, another nice thing about cancer: it provides a nice sense of perspective. I doubted a bit whether I should post this. Maybe some readers won’t appreciate my attempt at humour. Maybe some folks will be offended. They may have relatives with cancer. But hey, why worry about those things? If I really want to worry, I’ve got better things to worry about!