Saturday, July 28, 2012

Better than expected

While it's not all peaches and cream (well, I suppose there have been some peaches, although they've been sub-par since we've missed a few farmers' markets; and it's been a little while since I made some ice cream -- maybe later in the cycle), I do have to say that my gloom and doom prediction for cycle 8 may have been a bit too severe.  I hope I'm not jinxing it by saying so, but things haven't been as bad as I expected.  At least not yet.  Well, the first night did kind of suck.  I was utterly exhausted upon leaving chemo (I'm glad I had Lorien pick me up and didn't have to either bike or drive), and went right to bed.  Also, I had my first bit of actual nausea.  Luckily there's a remedy for that.

But the subsequent days so far have been okay.  Not great, and I'm pretty weary, and kind of spacey and foggy, and a bit prone to rambling (even moreso than usual).  But really not nearly as bad as it could be.  Hopefully things won't take a nosedive once I'm off the Prednisone.

I've even been on my bike a couple of times.  And today we rode all the way down to the marina with Dylan (Lorien being the hauler -- that's still beyond me) for the Berkeley Kite Festival.  Dylan got to fly his kite (I left my stunt kite at home).  And see boats.  Both of which he likes.  The ride back uphill was a bit slow going for me and not the easiest thing, but I did okay.  And feel significantly better now (and well enough that I'm blogging) after some yummy Thai food.

Anyway, that's about it.  I guess not nearly as long of a ramble as some of my other posts.  But I am kind of tired.  I think one of the reasons that I'm doing okay is that I'm getting an okay amount of sleep.  Not phenomenal, and sadly not in as continuous chunks as I would like, but as good as can be expected.  I once again feel that taking a little break from sleep meds between cycles really helps.

And I'm still hoping that this is the final cycle of chemo.

Wednesday, July 25, 2012

This may be the last time

I'm sitting here now, getting chemo.  I'm trying to think if I've blogged actually during chemo at all.  Maybe once?  I'm not sure.  And I'm too lazy to look it up.

Although part of the laziness is really just being tired.  Which might be partly from the chemo, but also just not getting enough good sleep is probably some of it.  As before, I tried to give my body a bit of break from sleep meds before the next round.  As before, it wasn't as large of a break as I had hoped.  Only about half a week.  The first night really sucked.  It got better after that, but I still wake up far more often throughout the night than I would like.  I don't know how long it's been since I've actually slept all the way through the night without some help.  Not that sleep meds guarantee I sleep all the way through the night.  I've kind of gotten used to getting up repeatedly during the night (am I reverting to infancy here?), and it's not that bad if I can get back to sleep without too much trouble.  And sometimes I can.  But not last night.  Somehow I feel like not being able to get back to sleep is worse than not being able to get to sleep in the first place.  Like somehow I've wasted the karma of initially getting to sleep easily.  Am I starting to ramble?  Maybe.  I'm tired.  See above.  There's probably a reason I don't usually blog during chemo.

Round 8.  As I've said before (sometimes I think I've been doing this through enough cycles that most things I've said before in some form), this is hopefully the last round.  But I won't know until after another PET scan, sometime at the end of the cycle.  I don't know exactly when; it hasn't been scheduled yet.  I'm really really hoping this is the last round of chemo.  But (again, as I've said before), I'm trying to mentally prepare myself for the possibility that there could be more chemo.  But it would suck.

And there will still probably be radiation even if I'm totally done with chemo.  So even if all goes according to plan, this isn't the end of treatment.  Not quite yet.

I'm kind of resigned to the probability that the next week or two is going to somewhat suck.  That's one of the reasons I wanted to blog now.  I suspect I won't feel like it for a little while after today.  So don't worry if you don't hear from me for a little bit.  And I should put this all in perspective -- the suckiness is a lot less than it could be.  And is mostly at the beginning of the cycle.  It would really suck if those feelings had continued for 6 months straight.  I'm trying not to eavesdrop too much, but it's hard to avoid the conversation the guy next to me is having right now with the nurse, and he's in a lot worse shape than I am.

We continued our tradition of getting pastries at the cheeseboard before chemo.  But this time Lorien drove me and dropped me off.  One of the reasons I moved my chemo from Oakland to Berkeley was to be able to bike to chemo if I was up for it.  Which I was in the past, but that ship has sailed.  Last time, biking back from chemo was just a bit too much.  It wasn't at all fun.  And while I suppose part of me likes to show off and impress people with the idea of biking to and from chemo, ultimately there's nothing I need to prove, and getting a ride is fine.

In non-chemo news, we have taken advantage of the babysitting offer from Judy, Lorien's mother, who is here until Thursday.  Sunday night we went to a movie at Kim's theatre.  Moonrise Kingdom.  It was good.  Bonus, it was free (b/c of Kim).  I think it's been a while since I've seen a movie knowing nothing about it.  I recommend it -- it's an interesting way to have no preconceived notions about the movie.  Okay, I guess I knew slightly more than nothing -- I did know it was a Wes Anderson movie.  I'm trying to remember when I've seen a movie and really known absolutely nothing.  Perhaps it was Best of Show.  Which was a very interesting case, since I spent a little while in the beginning asking myself, "This isn't real, right?"

Monday night we had some cocktails at Cesar.  This is where I got together recently with the visiting from out of town friends, but couldn't drink at the time.  We got into a bit of conversation about armagnac with the guy next to us at the bar when he ordered some.  I think next time we'll try the one he got.

Tuesday night we had a nice dinner out (it's been a while), at Rumbo al Sur.  We had a $50 gift certificate to here that we won at the raffle at the plant sale at that Edible Schoolyard earlier in the summer.  Latin American food, sort of like tapas, although most of the portions were larger than I would expect for that.  And we had some more cocktails.  My favorite was the Old Cuban (El dorado dark rum, muddled mint, fresh lime, angostura bitters, and sparkling wine), if anyone is local and ends up going and wants a suggestion.  I suppose we could make that without too much trouble, except that I wouldn't want to open an entire bottle of champagne just for a couple of drinks.  Perhaps we'll do it the next time someone brings a bottle to our house for some event.  Or a 6 pack.  Yes, Todd once brought a 6 pack of champagne to a party of ours.  It was in a cardboard 6 pack holder, just like beer.  But bigger.

In Dylan news, Dylan has moved up in the guitar world.  He has a fair number of musical instruments, some of them explicitly toys, some not.  My least favorite of all of them was his "guitar".  It's kind of the crappiest toy guitar I could imagine.  I mean it's nice in the sense that it's got actual wood, but it's more of a toy that is meant to look like a guitar than what I'd actually call a toy guitar.  Like you can't tune the strings, and you can't really control what you play because there's no fret board, and it barely makes a noise when you pluck the strings.  Actually, it's more meant to look like a banjo I suppose, but the term "guitar" has stuck.  Anyway, despite the fact (or in spite of it?) that I don't really like it, Dylan loves it.  When we started the summer session for Music Together, it clearly became his favorite instrument.  Sometimes he takes it to bed, and if you listen carefully and are quiet you can hear him playing with it in his crib.  Until he summarily dismisses it by tossing it on the floor.  At that point, if there's not another token of affection in his bed, he starts whining for that.  "Bop! Bop! Bop!"  (His blanket.)

But I digress.  When we were visiting Neal and Genevieve in SF when they were here, Dylan was totally in love with Teddy's ukulele.  Isn't this picture adorable?  I had been pondering getting him one as a replacement for his current guitar, and that visit sealed the deal.  I ordered one, and it came yesterday.  Dylan had been out and gotten in a very cranky mood on the way home.  I had stayed home, and was sitting on the couch playing the ukulele when he came in.  The look on his face was amazing -- eyes wide open, big grin, whining stopped.  He definitely likes it.  I'll try to post some pics and/or video in the not too distant future.  But probably not until later in my chemo cycle.

Which brings me back to chemo.  Still ongoing, but now I'm getting the final drug, Rituxan.  But this goes on for a while -- about 2.5 hours, unless they're not happy with my vital signs (which they check every half hour), in which case it could be much longer.  Either way, I think it's time for me to stop rambling and just rest a bit.  Maybe put in some earbuds and listen to some chill music.

Saturday, July 21, 2012

Lucky for me, unlucky for me

I remember that some time back in elementary school, my older brother Larry (the middle of 3 boys) had this assignment that involved pairing examples of "Lucky for me foo, unlucky for me bar".  (See here if you're not sufficiently geeky to know what I mean by foo and bar.)  While not entirely faithful to the format, here's a small window into my life, expressed as such a rendition.

Lucky for me, Lodge said they'd be willing to send us a free replacement cast iron skillet for the one that I broke.

Unlucky for me, we still don't have it.  And I forgot to ask how long it would take to receive the new one.

Lucky for me, prior to breaking the french press glass, I remembered seeing replacement glass pieces at Berkeley Bowl.

Unlucky for me, I have foggy chemo brain, and when I went to the Bowl to buy one, it turns out that they don't actually sell them.

Lucky for me, on my third try, I actually found the store that does sell them.  (Andronico's, if anyone else out there is local and ever finds themselves with a similar need.)

Lucky for me, I found a replacement tea kettle on ebay, identical to the one that I broke.

Lucky for me, I received the package within days.

Unlucky for me, the ebay description was a lie.  And the inside of the tea kettle was rusted.  With a hole in the bottom.  Making it somewhat useless as a tea kettle.

Lucky for me, all I really needed was the handle.  Which I was able to transfer to our old kettle.

Lucky for me, when I contacted the ebay seller, he promptly refunded my money.  So I actually fixed our old kettle for free.

Lucky for me, my white blood count is back up.  So I'm off antibiotics.

Unlucky for me, my oncologist thinks the same thing is likely to happen again next cycle.  And that there's nothing I can do about it.

Lucky for me, I had my [hopefully] last Lupron shot this past week.  I hate the side effects.

No unlucky for me yet on that one.  Unless it turns out I need more than 8 rounds of chemo.  Which I'm trying to keep myself mentally prepared for as a possibility.  But it would still suck.

Lucky for me, Lorien's mother is visiting for the week.  Free babysitting!  Okay, there's much more to it than that.  And we haven't actually even taken her up on that offer yet.  But the bits that she helps out looking after Dylan on a day to day basis are very much appreciated.

Unlucky for me, she brought a bona fide physical representation of my latest nemesis, Big Bird.

Okay, I'm (kind of) just kidding.  Lucky for me, Dylan is quite enamored of the Big Bird doll, so I'm happy he's happy.  He even wants to sleep with it sometimes.  And it's adorable when he dances and plays his guitar to Big Bird's rendition of the ABC song.  And the physical Big Bird seems to satisfy his Big Bird cravings, without having to resort to videos.

Unlucky for me, Big Bird doesn't have an off switch.  Seriously.  The only way to guarantee that it won't make any noise is to pull the battery.  What kind of sadist designs a toy that you can't get to shut up?

Lucky for me, even though Dylan is sleeping with Big Bird right now and I didn't pull the battery this time, Dylan hasn't rolled over on it and caused it to make a noise and wake him up.  Yet.

Lucky for me, we took Dylan to the Discovery Museum in Sausalito, and he had a great time.

Lucky for me, we (mostly) got in for free, as the Berkeley Public Library now has a program where you can check out all sorts of museum passes with your library card.  (Our previous taking advantage of this was for the Oakland Zoo.)

Unlucky for me, we (Lorien too) somehow forgot to bring our jackets, despite this being "summer" in the Bay Area, and the museum being right by the north end of the Golden Gate bridge, and it being somewhat cold and windy.

Lucky for me, there was stuff inside too.

Lucky for me, we have an abundance of amazing produce available to us, and it's the peak of stone fruit season, and you can taste just about all of it to decide which of the huge selection is best to get at the various farmers' markets.

Lucky for me, Dylan was really into the live music we saw last night while having dinner at the cheeseboard, even though he was up past what ought to be his bed time.

Unlucky for me, I got us on such a late schedule that I didn't start baking a ginger peach pie (with the above mentioned amazing peaches) until way later than I had planned.  And it took a lot longer to make than I had planned.  Which all caused me to get to bed later than I had planned.

Lucky for me, it was amazing.  Lorien thinks it's one of my best pies ever.  While I think it's pretty awesome, I'm ultimately still partial to raspberry/olallieberry pie.

Unlucky for me, there still aren't any organic olallieberries available in the market.  #berkeleyproblem

Lucky for me, we took Dylan to the Berkeley Marina today to fly kites.  And look at boats (another one of Dylan's recent obsessions).

Unlucky for me, soon after we started flying kites, there was a serious lull in the wind.

Lucky for me, it picked back up adequately.  And you really don't need that much wind to fly a good kite.

Lucky for me, Dylan got kind of into it.  And was even willing to hold the string for his kite a bit.  Last time he was a little afraid.

Unlucky for me, despite all of the amazing kites around, at one point he decided to obsess over a ball that other kids were playing with.

Lucky for me, we had a ball back in the car.  So I went back and got it.  And he eventually got back to paying attention to the kites as well.

Lucky for me, I'm feeling less tired and somewhat more energetic lately.

Lucky for me, I rode my bike today for the first time since last cycle.

Unlucky for me, I know this energy won't last, as it's already about halfway through week 3.

Lucky for me, my next cycle coming up (cycle 8) is planned to be my last.

Okay, I know I said above that I'm not getting my hopes up too much, in case things don't go according to plan and I end up with more cycles.  But you know what, I'm feeling lucky.

Sunday, July 15, 2012

Slow, foggy, and out of control

It's been a tough week.

Friday night I broke our tea kettle.  I knocked it off the stove, and when it landed on the floor the handle snapped in two.  Big deal, you might think.  It's just a tea kettle.  But I really like our tea kettle.  Dare I even say that I love our tea kettle.  Short of our knives, it may be the single most used item in the kitchen.  And it took us a while to find one we were satisfied with.  Perhaps you can't imagine how many poorly designed tea kettles there are.  Or maybe you just can't imagine how opinionated I am about product design.  And while I somewhat make fun of people who obsess over how kitchen items look, I have to say that it was a very nice shade of red -- that goes very well with our Kitchen Aid stand mixer.  And somehow I just knew that it wouldn't be made any more (I was right).

It wasn't just the tea kettle.  Earlier the same day I broke the glass pitcher of our french press (which also we primarily use for making tea).  Just a few days prior I broke our large cast iron skillet (I didn't even know that was possible).  And a drinking glass.

I suppose the tea kettle was the final straw.  I leaned over, buried my head down on the counter in my arms, and I was literally sobbing.  Pathetic, I know.  And entirely irrational.  It's just a thing.  Not even a very expensive thing.  I could tell at the time that I was being irrational.  But that didn't really help.

And it's not just that I've been fragile emotionally.  The trend of each cycle being progressively more difficult physically is sadly continuing.  My most manifest problem is fatigue.  Even when I manage to get a decent night's sleep, and even though I'm generally napping or at least laying down resting for some time each day, I'm very lacking in energy.  I was so happy to be biking again and practicing yoga again, but right now those are once again on hold.  Perhaps by week 3.

Also, I finally had a weekly checkup that wasn't uneventful.  Which isn't a good thing.  My total white blood count, and specifically my absolute neutrophil, are very low.  Which means that I have a significantly increased risk of infection.  So I'm back on antibiotics.

Despite all of this, I did manage to get myself into an okay enough state to take advantage of the coincidence that multiple friends that have since moved away from the Bay area were all in town visiting at the same time this past week -- Neal (who I went to grad school with, was a housemate with at the legendary Avocado Lounge, and worked with at FastForward); Noky (who I originally know from way back when I worked at DEC, and was also a housemate at the Avocado); and Sarah Reznikoff (also from grad school, although she was in Math, not CS).

I'm now about halfway done cycle 7, and things are noticeably improving.  But it's highly variable.  Early Friday evening I took Dylan out with his bike (I bought him a balance bike recently) while Lorien went to the market and cooked dinner.  Unlike earlier expeditions with the bike, in which we confined ourselves to the block right in front of our house, and in which he actually was on the bike the majority of the time, somehow we ended up walking about 3.5 blocks from home, downhill, and he had mostly lost interest in being on the bike.  And I started to feel pretty crappy, and really just wanted to go home.  So I've got me, a somewhat not entirely cooperative Dylan, his bike, his sippy cup, and my water bottle.  And I want to get us all home.  It really shouldn't have been that much of a problem.  At the very least, I could just pick Dylan's bike up in one hand (it's ridiculously light), Dylan in the other (he's admittedly getting a little less light), and hold the bottles with my fingers.  But I just didn't have the energy.  I ended up kind of just giving up and sitting down on the sidewalk, and we made our way home at toddler pace.  Very slowly.  With many distractions.  In retrospect, perhaps I should have had Lorien come rescue us.  Because I was feeling pretty bad by the time we finally made it home.  But that just kind of seemed too lame to ask for at the time.

Despite Friday night's disasters (the same eve as the tea kettle incident), I woke up on Saturday morning with a somewhat surprising amount of energy.  I had assumed I wouldn't be up for it, but I ended up changing my mind and heading into San Fransisco to catch a showing at the San Francisco Silent Film Festival.  If you've never seen a silent film on the big screen with live accompaniment, I highly recommend it if you ever get the chance.  The SF festival is at the beautiful Castro Theatre, and Lorien and I typically see one selection each year.  But we concluded this year that the logistics would be too difficult with Dylan, and it wasn't really worth paying for babysitting for.  What I went to was a collection of silent Felix the Cat cartoons.  When I was very young, I was somewhat obsessed with Felix the Cat.  To the point of throwing a tantrum and insisting on leaving the swimming pool early so that I wouldn't miss the TV show.  (Which I should probably keep in mind when I complain about Dylan's recent obsession with Big Bird.)  Following the cartoons, I went to a birthday brunch at Heather's apartment, which was fairly near by in the city.

And today I felt well enough to do a little bit of yard work, and to again resume going through the backlog of pictures that I have yet to process.  (Isn't this picture adorable?)  So it's not all doom and gloom, and I'm sorry if this posting has been a bit of a downer.  But I do think I'm getting a bit more of a feel of what typical chemo side effects are like.  I'm really glad it hasn't been 6 straight months of this.

I should also note that the tea kettle incident had a somewhat happy ending.  I was able to find one of the exact same models on ebay.  It's even red.

Monday, July 02, 2012

Yay to week 3

My friend Heather sent me this link from a blog post a few days ago at the Huffington Post, The Things I Wish I Were Told When I Was Diagnosed With Cancer.  It was an interesting read.  Not everything completely matches what I'm going through, but there's a lot of commonality.  Thinking back over the past few weeks, the point of "You will be determined to have more energy than you do." especially resonates.

But right now it's well into week 3, and I'm feeling sort of close to normal.  I don't quite have the energy level I've had at some points in the past, but I've definitely moved beyond the feeling like crap stage.  And some of those past energy peaks were bordering on pseudo-manic behavior anyway, so maybe it's okay not to repeat that.

I went for another bike ride up into the hills today.  I think it's the third time I've done that.  It would be nice if I could keep it up and do it at least once during week 3 of each cycle.  Although it was a bit harder this time than the last time I did it (during cycle 4 I think?), it still felt pretty amazing.  And I'm not trying to brag, but I did feel just a tad bit cocky as I'm zipping along on Wildcat Canyon Road and flew past several other bikers.  Who likely didn't have cancer.  (Unless perhaps they did, for all I know.)

After a bit of a lull when I was feeling crappy, my appetite has returned with full force, and I'm taking advantage of that and its intersection with summer fruit season.  More strawberry sauce to finish up the chocolate ice cream.  The raspberry/blackberry pie that I brought to work ("Friday is Pie Day" was the slogan) -- which was cool, I ended up staying and hanging out for a few hours, chatting with a bunch of people that I haven't seen too much in the past few months.  A strawberry sorbet -- which is sadly a bit sweeter than I would have liked.  The recipe probably doesn't anticipate strawberries as sweet and amazing as what we can get right now.  Likely either no added sugar, or just a tiny little bit, would have been a better idea.  Somewhat sad, and mildly ironic given the opposite result from my previous raspberry/lime sorbet attempt a while back that was way too sour.  A peach/nectarine crisp (because I need to get more shortening before making another pie crust, and I didn't really have the time to deal with another pie right now anyway) -- which is very tasty, although a bit runnier than I would have liked (I probably should've drained the juice from slicing the peaches, but I didn't want to toss such a sweet and yummy part).  We've decided to just shift the target and think of it as a peach/nectarine pudding instead.  Plenty of stone fruit and berries just for eating.  As well as berries for scones.  And on top of homemade granola.  Did I mention I've started making my own granola?  OMG it's so much better than store bought.  Thanks to Jeff Loiter for the recipe.  And as topping for waffles, although I think I like good old maple syrup (Grade B, that is) better.  Oh yeah, waffles -- after a few tries, I think we've perfected (or Lorien has, at least), the recipe (yeasted waffles) and technique with our new waffle maker, an anniversary present from Lorien's parents.  We've also beeen putting the anniversary present from my parents to good use -- it was a new food processor to replace our old one that died, and I think we've already used it perhaps 4 times in the first week.  It's good to be caring about food again, and cooking and baking.

Neal and Genevieve are in SF for a few weeks, and they stopped by to visit on Sunday with their son Teddy, who's 9 months older than Dylan.  We went to the Steam Trains in Tilden.  Which Dylan loved -- he was way more interested than he was the other time we went, which was about 5 months ago.  I guess that's a long time developmentally for him.  It's interesting to see how much older Teddy seems (like talking in sentences!), even though it's less than a year difference.  Teddy was somewhat less excited by the trains -- the noise from the steam whistle was a bit much for him.  The two of them were quite a racket together once we got back to our house.

I've also had the time/energy to finally start working somewhat through my backlog of processing of pictures.  I'm still not entirely up to date (and haven't yet done anything from our trip to Monterey; and I still need sometime to go through and process pics of our hike on Mt. Tam from before I even got diagnosed), but there are finally a bunch of new pictures up on flickr.  Sorry, I need to get to bed soon, no time for inline pics here right now, but see if you want to see some pics.  Which is in general where you'll find most of my pics anyway -- add me as a contact!

After 2 weeks, the rash has faded significantly, and is mostly no longer bothering me.  It's still not completely gone, and still sometimes feels a tiny bit itchy, but it's well on it's way to going away.  I suppose it might take a while to completely go away, just like it took a lot longer than usual for my cold to fully dissipate.

Oh yeah, another bit of news about my crazy body -- I'm starting to get hair again!  Well, first, an observation about what's gone.  A while back I expressed surprise that most of my hair other than what was on my head still seemed intact, whereas I had expected it to all kind of fall away with some kind of exponential decay.  I was kind of right in my initial prediction, but it just all happened at a slower rate than I had expected.  And slow enough that it was harder to notice.  A lot of my hair is gone.  That includes a lot of what had lingered on the top of my head.  And a lot of all sorts of random body hair, like eyebrows, eyelashes, nose hairs, etc.  But I'm definitely starting to get new growth on the top of my head.  It's extremely light and fine and peach fuzzy, but there's something there.  And my beard hair is still kind of peach fuzzy, but I'm pretty sure it's coming in faster than before, and more densely too.  I'm not really keeping close track of it, but my gut feel is that I'm having to shave more often than the recent past, although still not as often as before chemo.

That's about it for now.  Chemo #7 is delayed by a day due to July 4.  So I get a bonus day of week 3 this time.  Which is kind of nice, although the flip side of that is that the weekend of week 2 comes one day earlier in the cycle than normal.  Which perhaps won't make that much of a difference.  Unless it does.  I'm trying to make plans and try to squeeze in fun things when I'm feeling well, but it's getting a bit harder to plan things in advance, esp. given the way the first half of the cycles have been progressing.  We just found out that Lorien's mother is going to be in town during the entire week 3 of my next cycle, so maybe we'll be able to take advantage of free babysitting and do something nice together.  Lorien vetoed my initial thought of skipping town for a week and heading down to Baja to go scuba diving.  ;)