Weary

I was warned that symptoms could continue to get worse for a week or so even after treatment was over.  While the throat isn't too bad, and neither is the skin rash, I'm certainly weary and lacking energy.  It's not as bad as with chemo -- I'm mostly functional, and not just lying around all day.  But tiny little exertions leave me winded and tired.  Like even just walking around the neighborhood.  My work had a white water rafting trip on Friday that I was originally pondering going on, but there was really no way that that was going to happen.  I instead was hoping to ride in the 20th anniversary of Critical Mass that evening, but that I think would have been a bit too much either.  Even getting on my bike for tiny little errands around town seems a bit daunting right now.  It's been a few weeks I think since I rode at all.  I'm also just generally kind of sore, especially in the morning.

Nevertheless, I am trying to have a positive outlook.  Treatment is done, and in all likelihood I'll feel a lot better in a couple of weeks.

And the hot flashes are mostly gone (much diminished in both frequency and severity).  And while I'm not sleeping quite as well as I'd like, most of the times it's not too bad.  I've also had several nights in a row where I remembered dreams.  Which only seems like a big deal because it suddenly made me realize that I'm not sure if I remember even a single dream other than those since beginning treatment.  Which makes me wonder if I went 7 whole months without any REM sleep.

So the bottom line is that I am looking forward to the future, and I do hope to return to work in about a month.  But the past few days have reminded me of why I'm still taking time off.  I do still need some time to recover.

Done!

Today was my last day of treatment.  Hopefully ever.  I'm so happy to be done.  I'm not really sure how I'd react to a relapse.  I think it would be pretty emotionally devastating.  Here's hoping that that day never comes...

They gave me this cute diploma-like certificate upon being done, signed by the staff.  It reminds me of the certificates they've given us at UC Berkeley when we've taken Dylan to participate in studies at the Infant Cognition and Language Lab.  I'm not sure if we've posted the latest ones of those before.  He's up to postdoc now.

Daddy's certificate

Dylan's certificate

Before departing the cancer center this morning, I decided I should play at least something a little symbolic on the piano that's at the bottom of the atrium.  But I was also kind of eager to get out.  So I just played a single verse of the goodbye song from Music Together.  This is the series of music classes I take Dylan to.  Did I mention that the fall session started a couple of weeks back?  Anyway, each weekly class starts with the hello song, and ends with the goodbye song.

I met with both my radiation oncologist and my oncologist this past week.  Various blood counts are somewhat down, but that's to be expected from the radiation.  They ought to bounce back in a few weeks.  I learned that the tumor did some other damage that hadn't been noticed until recently (I think until they were plotting the radiation treatment).  The phrenic nerve on my left side has been somewhat damaged, meaning my left diaphragm doesn't move as much as it ought to.  It might just eventually take care of itself.  But even if it doesn't, it doesn't seem to be currently having any negative effects on my breathing.

Other acute side effects from the radiation have continued mostly as before.  Meaning they've pretty much plateaued, and aren't getting worse.  Which is good.  The main thing is that I'm lacking as much energy as I'd like.  I'm not so fatigued that I can't function, but very tiny bits of exertion, like walking home with groceries, or pushing Dylan's stroller up a small hill, leave me weary.  And my muscles in general (esp. my upper body) feel kind of sore, and very tight.  My throat is also somewhat sore (esp. in the morning), and I still need to be a little bit careful with what I eat, but it's not too bad.  And I'm not losing weight any more; on the contrary, I suddenly put some back and I'm now hovering around 145#, which is only 5 pounds away from what I was when this all started.  (I'd actually be somewhat happier to end up at 145 than 150 in the long run.)  The skin on my chest and back looks a bit discolored, and sometimes it feels a little irritated, but it's only the slightest bit perceptible -- much less than even a mild sunburn.  I'm told it could be a week or two before the various radiation side effects start to wear off.

Regarding side effects from the chemo, my hair continues to grow back.  Even from the front it's now kind of starting to look more like a very close crew cut, and less like total baldness.  I'm not really sure what color it's going to be.  Some of it is very fine and practically colorless, like the fuzzy hair that newborns have.  But some of it is darker.  We'll just have to see.  Other hair is coming back too.  I have eyebrows again!  And I'm having to shave regularly again.  I'm pretty sure I had been on the same razor since starting chemo.  Today seemed like a good idea to start a fresh razor.

I was at the Berkeley Hat Company the other day, getting a little repair work done on my straw fedora that's probably been my most worn hat this summer.  I was checking out their selection of hats, and pondering one or two more hats, that might be more suitable for the fall.  Lorien reminded me that in the not too distant future, I will have a normal head of hair again.  And maybe I don't need to be expanding my hat collection any further.  I'm not sure.  I might anyway, just to treat myself.  While I probably won't wear a hat just about every single day like I do now, I have grown somewhat fond of wearing hats, and I suspect that I'll continue that a bit even once my hair returns for real.

Unlike at the end of chemo, now it really does feel sort of like this is the first day of the rest of my life.  That now all I need to do is concentrate on recovering.  So that's my job for the near term.  I hope to very soon again try yoga.  And getting back on my bike.  I'm eager for things to return to normal.

Speaking of my job, it's my tentative plan to return to actual work on or around November 1.  I'll probably start working a full 5 days a week, but not quite full days.  Although I'd like to ramp up to full time reasonably quickly, as long as my body can handle it.

Also speaking of my job, it occurs to me that I have a bit of an anniversary coming up.  I started work at WaveMarket (now known as Location Labs) on September 30, 2002.  So this Sunday will mark 10 years.  Wow.  I never thought I'd be at this (or any) job that long.  Especially a job that I just kind of fell into, at a time when I wasn't even really actively seeking work, or when I hadn't even really decided when I wanted to start looking for work.

Back during chemo, we had started to get in the habit of getting a different set of fresh flowers on each chemo day.  But the habit kind of faltered.  To celebrate the end of treatment, Lorien surprised me today with this beautiful bouquet of a dozen lavender roses.  I didn't even know they existed in that color.  (Of course, they're probably going to look like a different color on everyone's screen...)

I just wanted to take this moment to thank everyone for all of the support that I've gotten over the past many months.  I can't imagine going through this ordeal alone.  Maybe I'm being a bit premature here, since it's not all over (will it truly ever be?), and I still have a ways to go before I feel normal, much less "cured".  But it really does feel like I'm closing a chapter now and starting a new one.

One week and counting

I hope that I didn't give the impression in my last post that things are going horribly.  They're really not that bad.  Not as bad as the worst from chemo, and even that wasn't as bad as I had feared.  And I've discovered a few things that are helping.  Black tea with honey, as long as I let it cool down a bit before drinking.  Ibuprofen.  And yes I did make a batch of vanilla ice cream and OMG I had forgotten just how amazing it is.

I think the thing that's gotten me somewhat disappointed is that on the macro scale, all of this is a bit of a step back.  I had gotten used to feeling pretty good, and it kind of sucks to have to go through some more of feeling not so good.  I want to be looking forward.

That having been said, I've got just one more week of radiation treatment left.  5 more doses.  I'm very much looking forward to it being over.  Even if I will need to recuperate a bit before celebrating too hard.

Shanah Tova!

Dylan gives Rosh Hashanah breakfast of round challah (baked by Mommy) and apples dipped in honey two thumbs up.

May your new year be sweet.

Radiation side effects

Perhaps I was getting a bit complacent that I hadn't really felt much in the way of side effects from radiation.  There was a bit of an indication of things being different on Wednesday, and I definitely was feeling effects by Thursday, right on target, 2 weeks after I started treatment.

It's not as bad as some later parts of chemo, where sometimes I basically laid around all day and did nothing, but I am starting to feel more fatigued.  I managed to once again practice yoga twice last week (Tuesday and Wednesday), but that might be the end of that for a little bit.  And I'm riding my bike noticeably less (I can't remember biking at all since returning from our getaway last weekend).  And picking up (and just taking car of) Dylan is getting more tiring.  Admittedly he is probably getting continually heavier.

The most annoying side effect is soreness in my throat, and trouble swallowing.  Which is a bit of a saddening setback -- prior to getting treatment, eating had become quite the chore, and almost always painful, which had led to a very serious drop in my weight (about 25 pounds).  It was awesome to have eating be a pleasure again, and with a few exceptions I was able to eat whatever I wanted.  I had even recently passed a threshold that I had longed for for some time, where drinking good beer was enjoyable again.  (I reveled in a Tripel Karmeliet, and savored an Allagash White.)  But now, once again I have to be a bit careful eating.  I'm trying to find foods and/or drinks that help, but I'm not having that much luck.  Tea seems to be mixed -- at first it was soothing, but sometimes the heat, or the ingredients (like the ginger in a lemon/ginger herbal) are a bit irritating.  Kefir is somewhat helpful.  So far the main strategy that's helping is to eat very small bites, very slowly, chew a ridiculous amount, and swallow carefully.  Which I believe is causing me to start to lose weight again -- this morning I dipped slightly below 140#.  Perhaps ice cream would be soothing (and full of plenty calories).  I'm pondering making some vanilla ice cream tonight and tomorrow (the custard sits in the fridge overnight) -- although Lorien has dutifully pointed out that I could actually go out and *buy* ice cream instead.

Thankfully, this all ought to be over in a reasonable amount of time, in the big picture.  I'm already more than halfway through radiation, with only 7 more treatments to go.  Nevertheless, I have appreciated having a break from treatment this weekend.  But my recent history of doing fun stuff on the weekend is on hiatus for a little while.  We had been hoping to make it to Tahoe sometime while the weather was still warm, but I'm not sure whether or not that will end up happening.

One side effect that thankfully hasn't (yet?) been severe is a skin reaction.  I was expecting something similar to a sunburn on my chest and upper back.  I think the skin might be a little affected, but it's very hard to tell.  Certainly nothing very serious.

Also, my hair continues to come back.  Especially in the back, it's starting to look more like a close cropped crew cut and less like a bald head.

Haircut

Dylan got a haircut yesterday.  I'm a little sad that the long hair is gone, but he really needed a haircut.

Before:

and after:

See, not all posts need to be about cancer.

UPDATE: Wow does the quality of the video really suck here.  Note to self, don't use Blogger as a video sharing platform in the future.

UPDATE #2: Better quality video at https://vimeo.com/dingdingwikki/9.  Although I see Blogger only integrates seamlessly with YouTube.  (Which I suppose makes sense, since they're all owned by google.)

X-ray vision

Imagine yourself laying down.  Get comfortable.  Relax.  Not too bad, huh?

Well, your hands are gripping two posts up by your head, and your head and neck are squished between these posts so that they don't move around.  Not quite as comfortable.

And the table you're on is hard.  Very hard.

And even if you initially got yourself into a reasonable position, the techs may move you around a few mm here or there to get the lasers to line up with your tattoos.  So now you might be bent in subtle, yet odd and uncomfortable, ways.

And you have to remain still.  Completely, absolutely, perfectly still.

If this goes on for about 15 minutes, it's not particularly pleasant, but it's not really all that bad.

At 30 minutes, it's getting to be significantly more unpleasant.  Anything that was mildly uncomfortable at the beginning is starting to get to be actually painful.

After about an hour it's ... well ... I was going to say almost unbearable, but I don't want to risk derision from any female readers who might chide me for not knowing what the hell I'm talking about and that I should get back to them after I've gone through childbirth.  Nevertheless, it's pretty damn unpleasant at that point, and something that I hope I don't have to repeat.

That kind of sums up how I feel about radiation.  The good news is that if everything goes like it's supposed to go, the entire treatment only lasts about 15 minutes.  But not all days are like that.  I've had a couple that were probably closer to 30 minutes.  But the one that got me really complaining (and probably without that I wouldn't have even thought it of enough significance to devote this much blog space to) was the first day.  Or what was supposed to be the first day.  This was almost 2 weeks ago now.  The first day is supposed to be longer than the rest, because there's a simulation and verification step before the actual treatment where they make sure that everything is exactly the way they want it to be, and do a dry run of what the treatment will be, before doing the actual treatment.  But in my case, for reasons that I still don't completely understand but have gotten to the point that I don't really care that much as long as it doesn't happen again, after more than an hour they still hadn't managed to get through that first pre-treatment part, and they concluded that it just wasn't going to work out that day.  So not only did I have to go through all of that, but it was totally for nothing, and we had to try again the next day.  Luckily the next day only took about 30 minutes.  And most (but not all) days since have indeed been much quicker.

The actual radiation only takes up a tiny amount of time.  I get three zaps, one coming from the left front, one coming from the right front, and one coming from the back.  The entire time of active radiation is well under a minute.  It might even be a bit under 15 seconds -- I haven't tried to count it very precisely.

For some reason the tattoos alone aren't quite enough.  The first day they drew the fields on me for the front two beams.  See the picture below.  This gives you a bit of an idea of how large of a tumor I had.  One of the reasons for radiation isn't just to deal with any remaining tumor that might be present, but to clean up any possible stray bits left behind as the tumor shrunk that might be below the threshold of detecting.  So the region of treatment is based on the original bounds of the tumor.

2 of the 3 areas (the third is on the back) where I get radiation.

There are 18 treatments total.  I've had 8 so far.  I guess I'm once again back to counting time by treatments.  I've had 8 so far.  So after tomorrow I'll be halfway done.  My final scheduled day, assuming nothing else goes wrong, is September 25.  That got pushed back a day due to the initial day mishap.

So far I haven't felt any side effects.  I think.  It's hard to say -- I went to yoga today and it didn't go all that well, but maybe that was just how I was feeling today.  There's supposed to be about a 2 week latency before any side effects kick in, and for me that will be in 2 days.  So maybe anything I was feeling today is the beginning of that transition.  Or maybe not.

Possible expected side effects include skin irritation (kind of like a sunburn), throat irritation, and fatigue.  But it's supposed to be in general much less than chemo side effects, so I'm not too worried.  But the latency (both for any side effects starting, as well as stopping after treatment stops), gives me a little anxiety, mostly because I still don't really know exactly what to expect, and that makes planning any other things in life a little difficult.

Nevertheless, while I'm still feeling relatively well (modulo the continuing side effects from all the drugs I had previously, which at this point is mostly some mild insomnia, inability to sleep through the night, continuing hot flashes, still somewhat reduced energy level, and still some mild chemo-brain fuzziness), I'm trying my best to be active and have some fun.  My brother Steve and his family (Laura, Matt, and David) came out from New Jersey a few weeks back.  I made the requisite trip to Muir Woods with the out of towners.  And we all (sans Dylan) had a very good dinner at Chez Panisse downstairs (the fancier, prix fixe, set menu; the more casual, a la carte cafe is upstairs).

Dylan is kind of obsessed with boats right now.  So over Labor Day weekend we took the ferry from Oakland to San Francisco (and back).  He liked it.  While in the city we went to the aquarium at Fisherman's Wharf.  Obviously nowhere near the magnitude of the aquarium in Monterey, but not bad.  And something that until very recently I wasn't even aware of its existence.

This past weekend we took a mini-break out of town, which I think was the first time we've done that since going to Monterey in June.  (Right before chemo side effects got more severe.)  We spent a couple of nights in the Russian River Valley, in Guerneville.  And on Sunday on the way back we spent some time in the Dry Creek Valley.  Both of these are areas of Sonoma County, up in wine country.  The original plan was just going to be a day trip doing some wine touring via bicycle.  But we ended up packing quite a bit into a relatively short amount of time, including canoeing, "swimming" (or at least wading in to the river; and in Dylan's case, also into a public fountain), biking through redwoods, and wine tasting.  Oh yeah, there was also some unexpected strawberry picking, at Preston Vineyards.

Dylan hugs a tree at Armstrong Redwoods State Natural Reserve.

Cheers! Dylan shows off his toasting skills.

With our unplanned bounty of strawberries, I felt compelled to make another pie.  Strawberry/rhubarb.  And while Lorien is fond of the saying that pies are meant to be eaten, and not looked at (I forget where this comes from), I have to say that this one looked pretty good.  As far as the taste, I'm proud to say that while I was at yoga today, Dylan used dessert as an opportunity to speak his first ever three word phrase.  Admittedly it wasn't actually an original thought, and was simply paraphrasing a longer sentence that Lorien had just said to him.  But that's okay, I don't care.  "Best pie world."