Sunday December 9: You Look Great (vs. The Slog)
So getting real for a moment, chemo is not super fun, nor is having pulmonary embolism, not to mention, say, cancer. They all add up to cumulative worry, random pains, tiredness, wacky schedule full of doctor’s appointment and worse, medications, reminders to exercise, eat at certain times, needing to inject myself (did I mention it was twice daily?), and other random strange things happening in the body that you chalk up to one of the above, TBD, or not ever determined because something else comes along to think about. There you have it, the slog I’m (we’re) in now, halfway through at least the first round of chemo. The pattern, the weekly rhythm, is established and there’s a bad week and a better week (one hopes). Seven more weeks or so of this. It feels like walking on a snowy, un-shoveled and hard to navigate sidewalk, for a long time.
There is also, of course, or maybe not of course but still, the Zen bright side and genuine happiness from all angles: visits with family and friends, endless offers of support from, say, 50 people, and of course my beautiful, excellent and immensely supportive wife, who lives with me and knows so well how to take care of me. Plus it’s still an experience (horrific at times but at least interesting), it’s still life, and I can enjoy a bagel brunch, a sunny day, reading, laughing, a nice hot shower, being able to walk and drive and be a sort of normal human, with the best of ‘em. So even in the slog there are bright moments and in general my positivity (which you can bet I’m recording daily and charting) is at 4 out of 5.
One thing I’ve noticed (that I appreciate) is that many people who haven’t seen me in a while, or not since the diagnosis, mention that I look great. (Gratifyingly, these are almost always women.) I think this is because they’re not sure what to expect and they see someone who looks normal. Though family visits right after my ICU stay might not have fallen into that category. It surprises me sometimes because I feel normal (at least in the weeks when I’m seeing visitors), though I understand it’s a compliment and a positive thing.
Tomorrow is chemo round 4 of 6 (early, they want us there well before 9 if you can imagine the rudeness) and the slog will continue with a likely sinking into the low-energy, glazed eyes territory for a few days next week. Hoping to come back as usual during the weekend.
Thursday November 29: Long Time No See, Part 2
I think you all know this, but for the record…
Not the best week last week. That “not feeling so good” in the last post was probably a symptom I didn’t yet understand. Spent 2 days in the ICU following an episode of blood clots Monday that culminated in pulmonary embolism. Fortunately the 3 clots weren’t large enough to do what the ICU doc called a “crazy” procedure to “bust the clots”.
I couldn’t do the usual Thanksgiving, instead resting at home on doctors orders. On the plus side, had a surprise visit from the boy and nice visits from lovely family.
I’m now on blood thinners (twice a day self-injections, not super fun, probably will need to be on them for at least 6 months) and feeling better than last week for sure.
Though the chemo round I had Monday (see post-infusion shot walking to the parking garage) is making me very tired now — this is the typical bottom out day — and I’m sure the embolism doesn’t help anything. Slept almost 13 hours today.
I’ll update more later.
Wednesday November 14: Long Time No See
Hey there. I’m doing fine. Sorry I haven’t updated this in a while.
I decided to maintain this “private” blog for a smaller audience since I feel due to us handing out this link to many people that there are now too many people reading the other (original) blog to want to spill more embarrassingly transparent thoughts on cancer. ( I am a boy, after all, and a Crowell to boot.) So please don’t share this link with anyone; I want it to be only family and truly close friends. I’ll put everything I post on the other blog on this one too, so you can just use this link instead from now on.
Chemo round 2 was indeed rougher than round 1, and I can foresee that trend continuing, but oh well, the feeling that chemo’s not so bad after all couldn’t really have lasted. By “rougher” I mostly mean that I got more tired, the rebound took longer, and I’m pretty sure I’m not going to rebound as high this time, since I haven’t yet and it’s day 10. The good news is that I still have 12 days left before the next round to see what I can do.
Having said all that, I’m pretty good. We’re still learning and adapting (another key characteristic needed for this little journey). For example I now have an excellent (actually super dorky) pair of ski goggles that I bought because the wind was getting behind my sunglasses and was unpleasant at best to feel on a cold day. Funny (“funny”) when your eyes immediately hurt from being outside. I’ve been learning to wear a glove to touch anything cold: anything in or recently in the fridge, metal doorknobs, shampoo that was too close to the glass brick window. Well, I don’t wear a glove for that last one but I’ve moved them away from the glass brick.
No real peripheral neuropathy, so I’ve been playing more piano. Also I started back to work this week, which has been interesting and (probably no surprise to anyone else) more challenging that I thought. I get tired a lot more easily and can’t do anything sustained for more than an hour at best. So learning how to do that as well. Fortunately my boss is very understanding and supportive, and I can basically make up what I want to do.
In a shocking development, we are now owners of a small microwave. All these years without one, but prior to getting the microwave, if I wanted, say, milk on cereal, I had to let the milk warm up before using it, tedious at best. Now: zap! And I have some nice lukewarm milk. Entering the 21st (really 20th) century for real.
Had a great dinner on 11/11 (a favorite day of mine, as you might have guessed) of polenta and ratatouille cooked by JGC, and enjoyed JJG’s company.
That’s kind of it. Always love hearing from anyone on this list.