Today was the first day at the hospital, preparing for the first real DHAP chemo tomorrow… “Preparing” in this case mostly means sitting around, waiting, hooked up to an intravenous drip to make sure I take a decent amount of fluid and salt in, so as to clean my kidneys. No nausea, so no complaints!
Funny though how many little things you notice when you spend some time at the hospital.
Why is the water always from a brand that you’ve never seen before? (It does mention that is has been approved by the High Counsel of Health of the Ministry of Health. Sounds healthy…)
Why does the card that has my room number on it look like it’s an announcement for a new baby from the seventies? Why does that person have blocked ears and why does he tell us to be silent. (As his ears are blocked, he supposedly can’t hear us anyway?)
Why do they serve lunch halfway through the morning and dinner when I normally finish lunch? See, they just served dinner – or is it tomorrow’s breakfast already…?
On the bright side: the wifi works. Works well, actually. Well enough for spotify (listening to this playlist at the moment) or netflix or FaceTime with the kids back home… That’s better than what some conferences offer!
And, of course, I actually have access to quite affordable (as in: almost free) high-quality medical care. That’s much better than what 80 or 90 percent of the world population have to settle for… Actually, I am lucky!
Last Thursday, I had my eight and last ‘ordinary’ chemo. Yes, done with ordinary!
This wasn’t an all that great one though. Details on request (if you insist) and much later. You see: thinking about chemo makes me sick… Literally. Which means that I get sick before I even get the actual chemo medicine. When entering the hospital. When thinking about entering the hospital. Actually, writing about thinking about the experience makes my stomach turn. Enough about that. Yikes.
But hey, it’s over! I’m done with it! With the ‘ordinary’ chemo, that is. In two weeks, I will have a PET scan. If that is reasonably OK, then I will spend a few weeks in hospital early October for an extra-heavy dose of chemo to hopefully get rid of the last traces of lymphoma, followed by an autologous stem-cell transplant to get back on my feet. And then, touch wood, well … that may actually be the end of my treatment. We’ll see. Let’s not get carried away…
For now, my major issue is hiccups. Doesn’t sound like a Big Deal. Because I guess it basically isn’t. Unless when you spend halve of the day and half of the night hiccupping (is that a word?)… Bit tiresome. And makes it a bit complicated to have a conversation, or to get a few hours of uninterrupted sleep. I do have medication that’s supposed to help. And, hey, actually, it really isn’t a Big Deal.
Now, if only hiccups would make me look a bit more like a wolf pup…
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!)