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…
Today was a Good Day. I had my blood checked at the hospital, as my current chemo is a bit more demanding on my body. Turns out I have Good Blood. Which means no need for transfusions, and a full week clear of medical stuff until I go back in for my next and final round of this type of chemo. Yey!
One thing you obsess a bit over during treatment is how your chances evolve. At the start, I had a 70% chance that my type of cancer (T-cell, Not Otherwise Specified) would react to chemo. If it did, I had a 70% chance of becoming fully healthy again. That made a 70*70=49% chance overall. Elementary statistics. (Well, not really, because I guess that, occasionally, some people with non-chemo-responsive T-cell actually do get cured. But that’s a detail. Not for them, I’m sure. But for what I’m trying to explain here…)
So, of course, as my treatment evolves, I try to re-assess probabilities all the time. My lymphomas did react to chemo. Good, chances go up. I wasn’t in complete remission after 4, 6 or 8 sessions of CHOP. Oops, my chances go down. I now do two sessions of DHAP and will have another PET scan in about three weeks from now. If that PET scan is clear, i.e. I’m in remission, my chances go up again. But how much exactly? If there is less activity visible than before, have my chances gone up because of the DHAP? If so, how much?
Trying to work out these probabilities, I sometimes had the feeling that doctors weren’t always ready to give clear answers. Maybe they worried I wouldn’t understand. Hey, I’m a professor of computer science. I can do basic math! Or that I couldn’t cope with it. Hey, I’m an adult. I know we probably all will die. I’d like to know a bit more if a bit more can be known. It’s my life, it’s data about me. I want to live in truth, not in ignorance.
But today, I think I realise what the real issue may be: it’s like my Great Friend Wayne and I used to say… We’re all snowflakes, we’re all different, we’re all of us unique. Turns out that very few people have my type of lymphoma, and my type of treatment. Like really very few. Like so few that statistics doesn’t really apply. As one of my doctors said, it becomes more a matter of “feeling and experience” than hard science.
I always valued being unique. I still do. But unique and statistics don’t go well together. Oh, well.
Let’s just say that I’m confident (most of the time) that I will make it. Confident. Not certain. But I can definitely work with confident.
Thinking about the title for this post, I remembered a movie that really impressed me when it came out: “Mauvais Sang“. It impressed me for all the reasons that mostly French movies seem to be able to impress me: it was “difficult”, a bit depressing, very poetic, and I couldn’t get it out of my head for weeks. Maybe you should put it on your “to see” list… Or you can watch the clip below…
But I am making progress: I can do short walks outside. Maybe not a giant leap for mankind, but more than a small step for this man… The sun and the wind on the skin of my face – I so missed that.
And for reasons I can’t quite understand, yesterday turned into Canadian Music Day. There was Leonard Cohen on the radio during breakfast. Nice. His voice made me think of Robbie Robertson’s Somewhere Down The Crazy River.
Wait, did you hear that Oh this is sure stirring up some ghosts for me She said "There's one thing you've got to learn Is not to be afraid of it." I said "No, I like it, I like it, it's good." She said "You like it now But you'll learn to love it later."
Somehow when I go on this kind of music trip, I often end up at Joni Mitchell’s.
There’s much worse places to end up…
I have a Great Sister. (And a Great Brother. And a Great Family and Great Friends, but that’s a different topic…)
One of the nice things she regularly does is to send me cards that should make me feel goed, like “Bald is the new sexy”. Not sure the messages are always true, but most of the time, the cards work well.
When I entered the hospital last Thursday, she sent me one saying
Kicking cancer’s ass, one day at a time.
Maybe that was a mistake.
The thing is: cancer decided to kick back. So, I’ve been on temesta, valium, licitan and a few other wonders of modern medicine since the weekend, and, until yesterday, I felt like this towel:
Over the past days, I lost some kilos (there’s a huge commercial opportunity for weight loss through chemo!), but I’m back home now and getting stronger. Hey, I can even do the stairs all by myself! I’m beginning to feel more like a clean nicely folded towel:
I guess that, by tomorrow, I can start kicking cancer’s ass again…