Tuesday, May 29, 2012

The second half begins

I think lately (or at least last round) I'm feeling so good by the end of week 3, that I get a bit forgetful of the fact that I'm not always feeling quite that good.

The end of last round's week 3 was indeed a great time.  As was true the one previous time that I was there, cocktails at Bourbon and Branch were truly stellar.  Even if perhaps 3 strong cocktails is pushing the limit of moderate alcohol consumption.  I've got to go back there again sometime, this time not waiting several years in the interim.  And/or find a good cocktail bar in the East Bay, which would be a bit easier to do as a date night with Lorien.  Anyone have any suggestions?

Our early anniversary lunch celebration the next day at Chez Panisse was also quite delightful.  And included a full bottle of wine.

Also on the food/drink front, we won a gift certificate to Rumbo Al Sur, as part of the raffle at the Edible Schoolyard fundraiser (where the adorable Dylan picture was taken).  We'll have to schedule that as part of some future week 3 festivities.

I also spent some time doing some more shopping.  With all the weight I lost, I've been having crazy trouble trying to find a pair of jeans that fit me well.  I stopped by the Levis store in SF before Bourbon and Branch fairly convinced on getting a certain pair there.  But it didn't really fit me that well, and the sales guy was persistent that I should try something else.  What he suggested is way skinnier than what I really had in mind, but I have to admit, it did fit me well.  So I bought a pair.

And I tentatively bought a new pair of bike shoes, although there's still one more shop I want to look at, but with my chemo and then Prednisone induced swelling, I still need to wait a tiny bit before I can return to shoe shopping.

So week 3 was really pretty grand, I don't think I deserve to complain too much.  Nevertheless, week 1 has been quite a contrast.  It's not that it's been really *that* bad, but bad enough that it has mostly felt far from good.  And somewhat surprising, since in the past week 1 hadn't been all that bad, and on average better than week 2.  A lot of it has been an overall lack of energy, and just a general feeling of blah.  I had been planning on going to yoga last Friday, but there was just no way that I was up for it.  We had also planned on hanging out in our backyard picnicking for our anniversary on Monday.  While we spent a tiny amount of time outside, neither the weather (somewhat cool and windy) nor Dylan (somewhat cranky) nor my energy (I needed to take a nap in the afternoon) cooperated all that well.  Which made me all the more thankful that we had gone out to celebrate during the previous week.

Fortunately, I did manage to have a bit of energy on Sunday night, and went into the city and biked out towards the Golden Gate Bridge with some friends for the fireworks celebrating the 75th year of the bridge.  They were pretty good fireworks -- besides launching them from a barge, they had a number of effects actually coordinated with the bridge, launched from both the span itself, and the two towers.

But most of this week I've just been trying to take it easy.  I got the opportunity to sleep in a bit this morning, which I think helped a lot.  Sadly, I didn't put that extra energy towards anything very fun.  I literally spent hours today going through months of health insurance related paperwork plus being on the phone with the old health insurance company.  Not that everything is actually resolved, but at least I've got a handle on the things that I think are wrong (I think maybe there are 5 total) and have made some progress.  Ugh.  Every time I have to deal with Health Net, it feels so soul destroying.  I'm so glad they're not my insurance company any more (so far things are much smoother with Blue Shield), but I've still got to deal with the leftover mess from my previous time with them.

Tomorrow starts week 2 of cycle 5.  Tentative plan is for yoga after my weekly appointment, both if the appointment doesn't run too late, and if I have the energy for it.  I'm keeping my fingers crossed that maybe week 2 will be a little more pleasant than week 1 was.  But even if it's not, it's probable that week 3 will be, so I'll just ride it through.

Sunday, May 20, 2012

Post scan celebrations

The banana ice cream is done.  With plenty of chocolate sauce left, we indeed decided to make strawberry ice cream to go with it.  Yet another David Leibovitz recipe, with sour cream to balance the sweetness of the strawberries.  We've been busy enough that we still haven't gotten around to eating any of it.  Don't worry, I'm still eating plenty, although my weight seems fairly reliably dependent on the time of my cycle rather than going up as I continue to eat and eat and eat.  It's kind of weird; I feel like I've regressed to high school and I have the metabolism of a teenage boy.

Is this blog evolving into dual tracks for both cancer and food?  Is that weird?  Will I need some title like Cooking and Cancer?  Tasty Treats and Tumors?  Munchies and Malignancies?  (Okay, those are all kind of bad...)  Do I need to start including things besides desserts for it to be a food blog?  Like describing the lovely dinner we had to celebrate the good news of the scan, which featured a frisee salad topped with a poached egg (my first experimentation with poaching an egg); some warmed chevre with chives on baguette slices; and a crisp white wine.  The salad recipe came from our latest cookbook, The Art of Simple Food, by Alice Waters.  I'm not sure given where we live and what kind of food we're into how we've gone so long without an Alice Waters cookbook.  We're quite fond of it already, and have started to follow Dylan's lead by referring to it with just a single word, "Alice".  As we also are doing for "Julia" (Mastering the Art of French Cooking, by Julia Child); and "Joy" (The Joy of Cooking).  We bought the book at the plant sale at the Edible Schoolyard, rather than through Amazon.  Which meant we spent nearly twice as much (list price), but it was a fundraiser, so at least the money is going to a good cause, and not a somewhat evil company.  And our copy is autographed.  And while we were there we managed to capture this absolutely adorable picture of Dylan.

But I digress.  I was pondering food blogs.  I suppose if I really wanted to write a food blog I'd need to type in recipes.  That sounds hard.

Back to the primary topic, I continue to feel well, and am thoroughly enjoying this week 3.  I've been shopping for some new cycling gear -- right now I'm looking for a helmet and shoes.  Shopping for shoes is always a bit of a pain for me because my feet are so narrow (B width), so most shoes don't come anywhere close to fitting me.  Right now it's especially tricky because I can only try on new shoes during the later part of my cycle.  During week 1 I'm too full of excess water weight, and I can't really trust how new shoes feel.  So if I don't make a decision in a few days, I'll have to wait a little while.

I was complaining about my lingering cold for quite some time.  I supposed I never really announced that I had decided eventually that it was gone.  Or at least gone enough -- there are still some occasionally cold like symptoms, but I think I had those even before I got the cold.

And the hoarseness of my voice has substantially decreased.  But I still need to take it a little bit easy on my throat.

Back to the topic of celebrations and week 3 enjoyments, there's another couple that we periodically do babysitting swaps with.  So last night Lorien and I had a bit of a date night, going out to a few bars for fancy cocktails.  By bike.  It was fun.  It had been a long time since I had gone biking at night.  Time to recharge a lot of the batteries for my lights.

Today featured not one, but two barbeques.  Both birthday parties.  Although there was a substantial age difference (42 years) between the celebrants of both parties.  The second party featured eclipse viewing.  Some pictures are below.

The eclipse around peak, projected via telescope.  We were a few hours drive from the region of totality; had I realized the relative closeness a few days earlier than I did, perhaps I would have made plans to be there.  But this was still pretty good. 

Reflections of the crescent sun near the peak of the eclipse

Tomorrow night features more cocktails -- I'm meeting my friend Heather at Bourbon and Branch in SF.  And Tuesday Lorien and I are celebrating our anniversary a bit early with a lunch at Chez Panisse.  We decided it was better to celebrate during week 3 than on our actual anniversary date (May 28), which falls during week 1.  The actual day wouldn't have been very practical for a restaurant outing anyway, as it's on Memorial Day this year.  Maybe we'll have a picnic that day.

Then on Wednesday my clock starts over again, with chemo round 5.

Friday, May 18, 2012

Looking good

I know there are people waiting on the PET scan results, so I wanted to get a quick blog posting out and not wait until tonite.

Overall things are looking good, pretty much as expected and hoped for.  The maximal dimensions of the tumor have shrunk from the previous scan (almost 3 months ago), from 17.1 x 10.4 x 14.4 cm to 7.3 x 4.2 x 6.2 cm.  That's a greater than 50% reduction in each dimension.  If the tumor was an ellipsoid with those dimensions, that would be a huge reduction in volume -- 93%.  But keep in mind that the tumor is NOT an ellipsoid -- these are maximum measurements, so the actual volume is likely significantly lower, as is the actual volume reduction.  If I had the skills to analyze the raw data sufficiently so that I could make a 3D printout of the tumor (which I had hoped for, although I've since abandoned that plan), I could give a better number.  But I can't, and it's not really that important anyway.

The other good quantitative news for any statistics geeks out there relates to the SUV.  No, not the ginormous gas guzzling vehicles that are prone to rollover, this is an indirect measure of tumor activity, with a lower number being better.  Follow the Wikipedia link if you want a starting point for more details.  Anyway, the max SUV has dropped from 15.6 to 3.9, and quoting from the report, "associated activity has significantly improved ... now with only a minority of the mass demonstrating activity."

So basically this is all good news.  There's still a tumor, but to have expected otherwise would have been unrealistic.  It is smaller and less active, so the chemotherapy is working and doing what it's supposed to do.  The plan is still therefore the same.  Four more rounds of chemo (round 5 starts on Wednesday of next week), then another scan to check on things, and then likely (but still not definitely) some radiation.

I rewarded myself by buying yet another hat on the way home from my weekly checkup, a real classy black and white fedora that I spotted the other day at the hat shop (Goorin) that I previously hadn't heard of that Skippy (Fox, not Sherred) suggested.  I'll post a pic of that, as well as one showing off my new glasses (which I absolutely love) when I get a chance.  But I don't want lack of a picture to hold up this posting.

I suppose I should conclude with an update on the sweets report.  Even though I halved the recipe for the hot fudge sauce, we are nearing the end of the banana ice cream, and still have plenty of the sauce left.  Which means that now I need to make another ice cream to go with the sauce.  But then will I be forced to make more sauce to go with any remaining ice cream, and so on, in a vicious circle?  I suppose there are worse predicaments one can find oneself in.  The current leading contender for the next flavour attempt is strawberry ice cream.  I suppose we could even compare strawberry ice cream with chocolate sauce to chocolate ice cream with strawberry sauce.  Yum.

Wednesday, May 16, 2012

OMG Hot Fudge Sauce

Okay, I have to follow up the previous post with one quick thing before bed.

Just like the chocolate ice cream was okay on its own, but amazing with freshly made strawberry sauce, the same holds true for the banana-granola ice cream and freshly made hot fudge sauce.  Wow.  And it was so easy to make.

Is it a sign that my local readership has dropped off that we're not getting any help eating ice cream?  Seriously, if you're nearby and reading this, stop by some night for dessert.

PET scan tomorrow

I'll try to keep this somewhat brief because it's getting late, I have to get up early tomorrow morning, and I still want to make some chocolate sauce to go with our latest round of ice cream for a late night snack before bed.

The early rise is for a PET scan.  I had one of these before starting chemo, as part of the initial diagnosis.  This is evaluating things at the sort of halfway point.  Sort of for a few reasons -- first because it's after 4 of 8 planned rounds of chemo, but the plan could change (more or less rounds); second because chemo might not be all there is, there might be radiation following.

At first I was kind of excited and looking forward to this.  Then I was a bit scared about what the results might be.  But now I'm kind of thinking that it probably won't be a big deal either way.  There are two extreme results -- that either I have made no progress, or the tumor is completely gone -- but I am extremely doubtful that either of those will be the case.  Almost certainly not the first, given how much better I feel.  So likely the tumor will be smaller, although the expected reduction is probably in some range, and maybe the reduction is as expected, or maybe less so, or maybe more.  But I bet even if it's less or more that at this point it probably won't change the plan that drastically, and that I'll be told not to read too much into things either good or bad.  So we'll just have to see.  Regardless, it is kind of nice to be reaching this milestone, and I am curious to see how it goes.

Overall things continue to go very well, about as good as can be expected.  The side effects from this round of chemo have been very minimal, even during week 2.  And today I felt strong enough to go to a real yoga class.  My workplace has free yoga once a week at a studio across the street.  I had been getting a few personal lessons at my house with the same instructor that were fairly on the mellow side.  Today I just went to the normal class.  It was a little intense at times, but nothing that I couldn't handle, and I felt great afterwards.  Having cleared this milestone, I think I'd like to start doing it a bit more regularly.  And maybe start going to classes at the yoga center that I had been going to pretty regularly for quite some time a few years back.  I initially stopped a bit before Dylan was born -- first because I felt too busy for it, and then I didn't return to it because I was sick.

Ok, time for some dessert.  I can't eat for 8 hours before the scan, so I want to load up a bit on calories in advance.

Friday, May 11, 2012

Voice, bikes, ice cream, et. al.

I didn't realize it had been a whole week since posting.  While I will in general try to blog a little more frequently than once a week, please don't assume that no news is bad news.

The rest of week 1 was kind of all over the place with respect to energy.  Like on Saturday I was way, way lethargic, and then on Sunday I had a ton of energy, and then on Monday I was somewhere in between.

On Tuesday I had another private yoga session, which we kept pretty mellow.  I really should make the time to do more yoga, I think my body really needs it.  Although I'm not quite sure if I'm yet up for a normal yoga class, even a fairly beginning one.

Wednesday was my ENT appointment.  The summary is that there's nothing to worry about currently, but also nothing to do.  The somewhat longer answer is that my left vocal chord is being sluggish, and my right one is compensating so when they close together, it's not in the middle like it normally is.  It's all more likely a consequence of the tumor than a side effect of chemo.  It might even be present now but now before because of how it's reacting to the tumor shrinking.  She told me to come back when I was done treatment and she'd have another look, or if it got significantly worse.  The good news is that I think my voice, although not perfect, has actually improved somewhat.  But it's hard to say, because like so many other things, it's not really just a question of on a trajectory of getting worse or better.  It varies substantially from day to day, and within a day.

Thursday was Bike To Work Day.  It was also a day that Lorien flew to Orange County for a meeting.  Since I viewed my main job for the day as taking care of Dylan, and since I was up way early anyway for that, I biked him around in the morning to a number of the Energizer Stations.  It was the first time I've pulled him in the trailer in a significant amount of time.  With his growing weight, and the weight of the trailer, it's probably coming close to towing 50 pounds.  It wasn't that hard in the flats, but we did go up slightly into the foothills in search of a station that was actually giving out the promised local coupon books as part of the free schwag.  We never did actually find a physical book -- the best we did was a canvas bag with a code for the smartphone app version.  Dylan did get plenty of admirers -- he does look pretty damn cute in his bike helmet (sorry, I didn't actually get any pics on BTWD).

I also met up with a number of folks from work who I convinced to bike to lunch in Berkeley.  It was good to see some people from the office.  It had been a while.

My Wednesday appointment caused my weekly checkup that's normally on Wednesday to get pushed to today (Friday).  To a first order, it was fairly uneventful, in that my blood work continues to go well.  The annoying part of the day was that what was essentially mostly an approximately 5 minute doctor appointment turned into about 2.5 hours, for various reasons.  Oh well, I guess I just need to accept that that kind of crap is going to happen sometimes.

Next week I have a PET scan scheduled.  Organizing various logistics of this is part of the reason today's appointment took so long.  I had one of these before treatment, and I'll have one after chemo as well.  This is the midway scan, to see how I'm doing.  I'm kind of excited and nervous and scared all at the same time.

So far week 2 has been going smoother than expected.  Last round I felt kind of crappy from late Wednesday through Saturday.  It's Friday night now, and while I haven't felt completely well for week 2 so far, the chemo side effects have been fairly minimal, and I've been eating relatively normally.

My weight continues to follow it's up and down trajectory, in a way that I'm starting to be able to predict fairly well.  It shoots way up right after chemo, b/c of all of the fluids they pump into me.  Then it stays up through most of week 1, likely a side effect of the Prednisone.  Then it drops a significant amount over the next few days.  So it gets comfortably into the low 140s at its peak, but once I'm solidly into week 2, my morning weight is closer to 135#.  Which is still a nice solid 10 pound gain over where I bottomed out, and a level that has me looking reasonably thin, but not emaciated.  Still way below where I started before I got sick, which was close to 150#.  I guess the bottom line is that I can continue to enjoy my homemade ice cream without worry.  :)

On that note, I mentioned a few blog posts back that I made a basic chocolate.  It was pretty good, but a bit too rich I think by itself.  However, we discovered that it paired absolutely amazingly with strawberry sauce, esp. given how good the strawberries have been lately.  There's still a tiny bit left.  The next batch (mixed up tonite, in the fridge now, will freeze it tomorrow morning) is banana ice cream with granola.  (Thank you Jeff Loiter for your granola recipe -- I finally made it and it's both quite tasty as well as surprisingly easy to make.)  I'm getting enough into this whole homemade ice cream thing that we're pondering buying another of the rectangular pyrex containers that we use for storing the ice cream so that the lack of a suitable vessel is never the thing holding me back from making a second batch.

So once again, I'll put out a request that if anyone is reading this and local and hungry for sweets, please stop by and help us eat ice cream.  Seriously.  The faster it gets eaten, the sooner I can experiment with new flavors.

Friday, May 04, 2012

Foggy, rather groggy

Apologies if I've already used that as a title.  I'm not sure, and too lazy right now to double check.

Just a quick update, to let everyone know I'm doing okay.

Chemo day for round 4 went okay.  The wait was shorter than last time, and it was also scheduled earlier (which is now my regular time), so I was easily home in time for dinner.  And I didn't actually mind the wait at all.  I read for a bit (still digging the Kindle), then went downstairs to play on the newly discovered piano.  I brought plenty of food with me this time (it helped that there wasn't an unplanned meal inserted into the chemo time), including enough freshly baked banana bread and gingersnaps that I was able to share some with the nurses there.  And the weather was nice, so I biked this time.  My second "roommate" (most of the treatment room is divided into little room like sections that can accommodate two people at a time) -- the one who was still there when I was departing -- was pretty damn impressed that I had biked to chemo.  Not that I'm doing this to try to impress other people, but it kind of felt nice anyway; maybe deep inside I do like to show off a bit.

The hoarseness of my voice continues.  It was recommended that I go see an ENT to check it out further.  Next week.

Week 1 is going okay.  I'm kind of groggy and don't have a lot of energy.  Which is kind of how the last round went.  I'd rather not be this way, but it's not that big of a deal.  After all, this is part of why I'm taking time off.  So that if I want to have days where I just sit around and do nothing, I can.  I'm not really feeling the pseudo-manic feelings from the Prednisone any more.  So I decided last night to see if that, and given my grogginess, if maybe I could do without sleep meds.  Nope.  Grogginess isn't really the same as sleepiness, apparently.  I was tired this afternoon and lay down a while to try to take a nap.  It was somewhat refreshing to just be in bed for a while lying down, but ultimately there was no way that I was going to get to sleep.  So it's possible that part of my grogginess is just after affects from the Ambien.  I'm not too worried, though.  I was able to successfully wean myself off of any sleep meds by the end of the cycle last time.  So if I'm just dependent on them for the beginning of the cycle, I'm okay with that.

So not a lot going on right now that's too exciting.  We've got some tentative plans for the weekend, but I guess my general feeling is that I shouldn't definitively commit to too much, unless maybe it's in week 3.

Tuesday, May 01, 2012

I wish all weeks could be week 3

I feel great.

No, I don't feel perfect, and I continue to have relatively minor physical issues.  The biggest current annoyance continues to be the hoarseness of my voice.  I'm not sure if it's a consequence of chemo attacking my mucous membranes, or perhaps a side effect of having been coughing for about 8 months straight before I got treatment.  And it's not just my voice -- I find that I'm overly sensitive to a number of things.  Smoke from seasoning the cast iron skillet too much bothers me; I can't hover too close to the dishwasher when it's on because of the fumes from the bleach in the detergent; and I'm constantly pondering what the source is of all sorts of cooking smells that I detect as I'm biking around town.

But those relatively minor concerns aside, I feel better physically than I have in a long time.  In many ways better than at any time since before I started to get sick last summer.  I know by now not to get too optimistic -- there will certainly be more down periods coming up.  But right now I'm at the tail end of week 3 of round 3, and I've had a really good week.

We did indeed go on the family bike ride as planned.  It stayed reasonably warm and there was a bunch of wind.  I flew my stunt kite (a birthday gift from Lorien's parents from a couple of years back), and we bought Dylan a smaller toddler-friendly kite.  He was content to sit on Mommy or Daddy's lap while one of us flew it.  I think he might have been a little scared to try to hold on to line hby himself.

The next day (yesterday), at the peak of the warm weather, we went on a hike in Tilden in search of wildflowers.  Rather than taking Dylan in the Kelty (a backpack carrier), we tried out the Chariot (our bike trailer but in a jogging stroller configuration).  I was able to handle the hike, including taking turns pushing Dylan over some pretty rough and hilly terrain.  I think next time we'll stick with the Kelty, though.

And today I got on my road bike for the first time since getting sick.  The difference between it and my commuting bike is pretty amazing.  I love how riding a well tuned road bike with clipless pedals almost feels like an extension of your own body sometimes.  I wasn't sure if I was going to feel up for it completely when heading out, but I did one of our standard loops all the way up into the hills.  I didn't want to push myself too hard, so I did allow myself use of the granny gear a couple of times, which I ordinarily don't do.  (For those of you who aren't cyclists, that's the smallest of the three gears on the front chain ring, giving you the lowest range of gears.)  We'll see how I feel tomorrow, but for now I don't feel any particularly ill effects from the ride.  On the contrary, it was kind of exhilarating -- certainly the opportunity to ride fast down the hill on Centennial Drive was.

I'm also continuing to eat and drink well.  Lorien and I had a wonderful dinner last night -- she made a fish soup with some halibut that our friend Morley had brought back from Alaska a while ago, but I wasn't up for doing anything with at the time because of eating issues (so we froze it).  We also polished off a full bottle of a lovely white wine -- I don't think we've been able to accomplish that since I got sick either.  And tonite I had a couple of beers -- I think that's also a first since getting sick.  And earlier in the week I even had a cocktail, again my first in quite some time (a Sloe Gin Fizz).

And the parade of sweets continues.  We just had the first sample of the latest batch of homemade ice cream -- this time just a basic chocolate.  And cooling in the kitchen right now is another loaf of banana bread.  I'm going to bring some of that, as well as the rest of the ginger snaps, to chemo tomorrow.

Which brings me back to the impending round 4.  Which will surely have some low points, probably during week 2.  But for right now I'm just content to sit back and enjoy week 3.

Wildflowers in Tilden Park

Wildflowers in Tilden Park

Wildflowers in Tilden Park

The view from the Lawrence Hall of Science. Sorry for the crappy picture --
it's from a phone, on a hazy day, looking into the late afternoon sun.

Dylan's 18-month stats

We now take a break from our regularly scheduled cancer blogging to issue our post-doctor's appointment Dylan update.  This will mostly be of interest to those of you whose name is Grandm(om/ama).

As of yesterday, our little guy is now 33 1/4 inches tall (72nd %ile) and 23lbs 3oz (32nd %ile), and is therefore officially a little tall and thin.  He is the first one on my side of the family to be above median height, ever (thanks for those genes, Grandmom Dorothy).  His head remains in the 91st %ile, but that makes it easier for him to wear a biking helmet for his rides in the Chariot trailer, which we've been doing more often now that Rich is back on his bike.

He continues to be really active, but more recently he's also become quite the little chatterbox.  According to our doctor's info sheet, he should have between 15 and 25 words.  Rich and I thought this sounded a little low, so this morning, we counted all the words he says, and it's upwards of 80! Of course, not everyone would be able to understand all these words.  For example, cado = avocado, and mumbo = cucumber. He was also able to show the doctor all sorts of body parts when she asked.

We've recently been taking Dylan on all sorts of outdoor activities now that the weather is improved, and Rich is at the end of his treatment cycle, but I'll let Rich blog about that.  For now, I'll just leave you with these pictures taken since his 18-month birthday, which was on April 13.

Dylan repurposes Dirk's cat food cans
On Mommy's cell phone

Hiking up on the Skyline Trail in Tilden Regional Park, yesterday

Peeking out from behind the bench at the trail summit