Thursday, December 27, 2012

Wait and see

Not much news from my oncologist appointment today.  The hospital discharge papers summarize what my condition was as simply "atypical pneumonia".  No cultures have come back positive, so there's really nothing specific to point out as being wrong with me currently.  My auto neutrophil count is almost normal, just a little bit low.  It's lower than it was when I was discharged, but that was only a little bit after I stopped taking drugs to boost it, so that's not that worrisome.  We've decided to take a wait and see approach.  I'm going to resume weekly blood work and weekly oncology visits.  If things get worse, or don't continue to slowly get better, we'll decide where to go from there.  (Possibilities include having my next PET/CT scan early -- after 3 months rather than 6; or having another bone marrow biopsy -- the last one was before treatment.)  But for now we're not going to do anything else.

One bit of good news is that apparently neutropenia even months after my particular type of chemo for my particular type of cancer (late-onset neutropenia, or LON), is not uncommon.

I do continue to feel more functional most of the time.  One weird thing is that I seem to be very sensitive to getting enough to eat throughout the day.  If enough time goes by and I haven't eaten enough, I get really really tired.  Not hungry, just fatigued.  So I really need to keep this in mind, and don't necessarily rely on three meals.  I had been like this at some earlier point in treatment (I don't remember when offhand).  I'm not sure why it's returned.

I'm going to try tomorrow with another yoga class.  I have more reason to believe that this one will actually happen.  We did a little mini practice at home last night.  Very gentle, but I am a little sore from it regardless.

Wednesday, December 26, 2012

The Horrible Hospital

[No, it's really not that horrible -- just a Lemony Snicket reference.]

Some more catching up to do.  A bunch has happened since my last post, and not all of it good.

I got the chest CT scan.  I couldn't really interpret the results very well myself.  There was nothing that stood out as being obviously either very bad or very good.  The next step was to schedule an appointment with a pulmonologist.  Easier said than done.  I'll spare you all of the details, but the experience (including all records of my referral mysteriously disappearing, only to eventually reappear) basically only served to further convince me how screwed up the medical system in this country is.  And still didn't result in my actually getting an appointment.

On Saturday night, my friend Chip (that I know from way back at Cornell), who was in town from Seattle for a conference, stopped by to visit, along with his 3+ year old son Matthew.  Matthew is a little quieter than Dylan, but he eventually got comfortable with Dylan.  Even when Dylan decided that running around totally naked was the appropriate attire for the evening.

Soon afterwards, however, I started to feel not very good, and decided to head to bed early.  Or at least try.  After many hours had passed, and I hadn't managed to sleep at all, but I was totally feeling like crap and shivering despite being way bundled up, I took my temperature, and it was up to 101.8F.  I somewhat hesitated to call the urgent care line, because I was worried they were going to tell me to go to the ER.  I did end up calling, and discussed things a bit with the doctor on call, and we agreed that I didn't need to go to the ER, but that I should go to the cancer center as soon as I woke up in the morning.  And that it was okay for me to take some Ambien to try to get some sleep.

I did manage to get some Ambien-induced sleep, and went to the cancer center in the morning.  My temperature had already dropped somewhat, but was still high.  They gave me IV antibiotics, as well as some fluids, and I started to feel somewhat better, and my temperature continued to slowly fall.  I figured this would be the end of it, and they'd send me home with some oral antibiotics and some instructions to get some rest.  The problem was that my bloodwork showed that my auto neutrophil (a type of white blood cell) count was low, and they were concerned about infection, and wanted me admitted to the hospital.  I thought it was probably overreacting a little bit, but given the circumstances, I decided to err on the side of caution and go along with it.

So on Sunday evening, I found myself back in the same hospital in Oakland that I was in back in February/March when I started treatment.  I didn't blog about this at all at the time, because that Monday morning my parents were leaving for a vacation to celebrate their 50th wedding anniversary (12/23/62), and I wanted them to be able to enjoy their vacation and not have to worry about me.

The stay in the hospital was a little annoying, and fairly boring.  Many of my same complaints from before (crappy food; inability to get a good night's sleep; communication problems; an extreme culture of waste -- at one point they used a *disposable* oximeter) were still valid.  And I really didn't think that I needed to be there.  And while I was neutropenic, they had me on this restricted diet (e.g. no fresh fruits or veggies), which didn't help my disposition.  At least Lorien was able to visit me every day.  And bring me some edible food.

The one good thing about being in the hospital was that all of a sudden it was much easier to get access to specialists.  So I met with a couple of pulmonologists, had a broncoscopy done (where they peek inside your lungs, and take a sample), met with an infectious disease guy, and had a whole bunch of blood samples taken and cultures done.

My fever was gone by Monday morning, and my white blood count rebounded fairly quickly as well.  My fever did briefly return on Tuesday night after the broncoscopy, although apparently that's a common side effect (not sure if it's from the procedure, the drugs, or both).  Although it would have been nice if they would have told me that *before* it happened.

Having returned pretty much to where I was the week before, I was released from the hospital on Thursday morning.  Which means (if I believe Lorien's memory), that it was actually 1 night longer than my original stay at the start of treatment.  And I still didn't really have a very good resolution, either with respect to my physical condition, or an understanding of what had been going on.  I was still coughing, and coughing up mucus, and having headaches, and feeling in general pretty weary.  And there was no explanation as to why my white blood count had nosedived, when it had been fine just a week before.

At the time of being released, all of the cultures that were completed had come back negative.  And the broncoscopy didn't really show anything conclusive either.  There were still some cultures outstanding, and I assume that if there's anything noteworthy I'll find that out at followup appointments if not sooner.  I have an appointment tomorrow with my oncologist, and then one next week with one of the pulmonologists.  But I'm guessing at this point that they're probably not going to find anything in particular wrong with me.  I need to discuss with my oncologist what the plan is if that's the case.

The good news is that, in the almost a week since being released, I think that I am starting to very gradually get better.  I'm still coughing somewhat, but not nearly as often as I was before.  And I'm still sometimes congested and coughing up mucus, but again it's way less than it was before.  I'm no longer going through boxes of tissues at such a crazy rate.  I have a sore throat in the morning, but it's mostly gone a little after getting up.  And the headaches are relatively infrequent, and not particularly severe.  Mostly at this point they might be correlating with me just not drinking enough fluids.  And I'm trying to mostly stay off the acetaminophen.

Perhaps my ENT was right after all.  Her theory was that I don't really have anything in particular, just inflammation and related side effects from the radiation, and this will all gradually resolve itself over a period of months.  Although I suspect that the fever was the result of some infection, and that the antibiotics did take care of that.

Even my overall activity level is improving somewhat.  I still feel far from normal (and am not yet up for getting back on my bike; and thoughts of snowboarding this season are somewhat on hold), but I have at least decided that I want to resume yoga again, at least restorative yoga for now.  I even picked a class this afternoon that I decided to go to -- only to show up and find nobody there.  Canceled for the holidays, perhaps?  I was kind of annoyed, since the web page only explicitly noted that *next* week was canceled, leading me to assume that this week was on.

So that's where I am now.  I've decided to take this week off from work as well, trying to rest up a bit more.  My tentative plan is to return to work half time after the New Year, but as always, everything is subject to change.  Things are far from great, but I'm holding out hope that I'm starting to turn a corner towards recovery.  And that 2013 will ultimately be far better than 2012 was.

Tuesday, December 11, 2012

Maybe getting a little better?

Yet again another instance of a comment egging me on to follow up...

My oncologist said that if I didn't think the antibiotics had made a significant difference within a week, to get back to her.  I didn't, so I did.  My oncologist wasn't in on Friday, but I went in and was seen by one of her associates.  She took a chest x-ray to make sure that nothing had gotten noticeably worse in the couple of weeks since the scan.  It hadn't.  She also had me put on a pulse oximeter and walk up a few flights of stairs.  I'd been complaining about feeling pretty worn out after even mild exertion, and she wanted to make sure that my SpO2 level wasn't dropping dangerously.  It didn't -- it actually went up.  My pulse continues to be way higher than before I got sick (my resting pulse rate used to be often in the 60s, and sometimes even down in the 50s), but that's nothing new -- and hopefully something that will improve over time as I get better and have the opportunity to get back in shape.

I'm scheduled tomorrow morning for another scan.  This is a CT around the lungs, at higher resolution than the CT part of the full-body PET/CT.

After that, the next step is going to a pulmonologist.  I'm waiting to hear back from the doctor about scheduling an appointment; hopefully that will happen tomorrow.

As the additional days have been progressing, however, I'm starting to question whether this is actually worth it.  I made the decision last Thursday that I wasn't getting any better.  And it's hard to say precisely, because things can fluctuate from day to day, and hour to hour, but I do now feel that maybe I am gradually starting to feel a little better.  I'm still a little worn out, but I'm reasonably functional.  And I still have headaches often, but they're pretty mild.  And I've still got mucus and am coughing, but it's not nearly as bad as it was in early November.  Maybe this is something that will just gradually get better over time, or maybe the antibiotics really did resolve some infection.

Nevertheless, I've decided to follow through on this.  One of the problems with last fall, before I was diagnosed, was that I wasn't as alarmed about my health as perhaps I should have been, partly because I kept having ups and downs.  Things would be really bad, but then I'd start to feel a bit better, and I'd get hopeful and stop worrying so much.  If all I lose is a little bit of time and money to go see a specialist and have him tell me that nothing serious is wrong, at least I'll have that knowledge.

In the meantime, I'm continuing to try to get rest when I can, and I'm continuing to work approximately half time.  My brother Steve briefly passed through on Sunday, on his way to a business meeting the next day in LA.  And between lighting candles, eating chocolate gelt, and getting presents, Dylan is enjoying Chanukah.
Lighting candles on the second night of Chanukah
(Photo courtesy of Steve Fromm)

Dylan enjoying being in the toddler cage (aka a Hoberman sphere), a gift from Rich's parents.
The airplane (Dylan's latest obsession is planes, instead of boats) in the foreground is a gift from Lorien's parents.

Friday, November 30, 2012

Two steps forward, one step back

[Or have I already used that title before... ?]

I guess I never followed up on the ENT visit.  Sorry.

She didn't think that there was much going on that was a big deal.  Her theory is that the radiation has irritated and inflamed my trachea, and that that's a reasonable side effect to expect.  Also, sometime during the chemo treatment (maybe in late Spring or early Summer?  I forget now) I was having an issue with my vocal chords.  That has apparently improved somewhat, but it's not totally better, and that's exacerbating the situation with the trachea.  And since the whole ear/nose/throat area is connected, the bottom line is that that's kind of messed up and irritated and dried out and that's what's causing my coughing and congestion and sinus pressure and headaches, etc.  She told me to start taking an expectorant, to get off the Afrin, and to keep using saline spray and drink plenty of fluids.

At least that's her theory.  But I'm starting to wonder if this is another example of a specialist not seeing things outside of what she considers her scope.  Namely, that something is going on in my lungs.

Earlier this week I had my first scan since radiation.  (The previous scan, in August, was in between chemo and radiation.)  The good news is that there's no sign of the cancer returning.  But other parts of the scan confirm the fact that I haven't been feeling all that well.

My oncologist thinks I probably have some kind of infection.  The current plan is to take a round of antibiotics, and if things don't start to improve within a week, then go to a specialist to investigate things further.

It's kind of frustrating.  I was feeling so good for such a short amount of time, and it's now been 7 weeks that I've been feeling kind of sick in one way or another.  I suspect that there may actual be several things going on, and maybe catching a cold from Dylan (and/or another one from someone else on the plane flight home) may have been part of it.  And Dylan caught another cold yesterday -- I'm really hoping that I don't catch that from him.  And/or that this winter is just one bout of illness after another.

So I have been working somewhat, and it felt good to get something productive done.  But I'm not really sure where that stands in the near term.  I didn't go into the office today, and I might not go back at all until I'm feeling noticeably better.  I think it's really important right now for me to try to get a decent amount of rest and not push things too hard too fast.

In a somewhat brighter note, my brother Larry came out from Indiana for Thanksgiving with his wife Galit and their 7 month old son Ruben.  Although I was coughing way more than I would have liked during their visit, I was as a whole not feeling all that bad.  We had a nice holiday dinner, Ruben and Dylan enjoyed being with each other, and we had a couple of expeditions out -- both to one of Dylan's favorite destinations (Little Farm in Tilden Park), and what seems like the must see destination for everyone that visits us from out of town (Muir Woods).

That's about it.  I'm impatient for a return to normalcy, and things could be better, but from the long term perspective, things aren't too bad.  And I had a chocolate cake baking in the oven while I typed most of this, and things can only get so bad when there's chocolate cake around.

Dylan (and Nemo) with the butternut squash that gave its life for our Thanksgiving soup
Lorien reads to Ruben and Dylan
Ruben on a swing for the first time!
Dylan happily mimicking Ruben
Galit, Ruben, and Larry at Muir Woods
Lorien and Dylan gazing up at the redwoods at Muir Woods

Monday, November 12, 2012

Back at work

I did both.  I went back to work today, and I decided to make a doctor appointment as well with an ENT (for Thursday).

Work was kind of weird.  I wonder how long it will take me to ramp back up to actually getting anything productive done.  Today was mostly chatting with people, and spending time on inane things like finding my desk chair, trying to get my desktop in a decent shape again (things that used to work no longer do), and rearranging furniture.  And then somehow right as I was thinking of taking off a bit early (I didn't really feel that great most of the day) I ended up finding myself in a meeting (ugh) that ended up going on for an hour and a half (double ugh).

Sunday, November 11, 2012

Sniff sniff, cough cough

I'm sitting here enjoying our warm and cozy fire as I type this, on what might be my last night before returning to work after an 8 to 9 month hiatus.  Or it might not.

Since my last update, I did return home from the east coast following Hurricane Sandy.  We lost power at my parents' house, and my original flight was canceled, but power came back about 36 hours later, and Dylan and I flew home a few days later, on Halloween.  Friends in southern Manhattan weren't quite as lucky -- I don't think they got power back until the weekend.  My brother Steve and his family in New Jersey were far worse off -- they didn't finally get power back until I believe a day or two ago.

I was feeling mildly under the weather the entire time I was out east, but it wasn't all that bad, and mostly I felt functional.  Things sadly took a bit of a turn for the worse upon returning home.  Perhaps besides just fighting a cold, I picked up another one on the flight home.  It was bad enough that I decided not to return to work on the first of November, as I had originally planned.  I used a regularly scheduled appointment with my radiation oncologist as an avenue for discussing my current situation.  He thinks that I've just picked up some virus, and because my immune system is weakened, it will take a while to recover from it.  And I can expect that I may get more of this throughout the winter, as my immune system will be weakened somewhat for about 6 months to a year following treatment.  Oh boy, what fun.

It's frustrating.  I don't feel nearly as bad as I did with the worst of the side effects from treatment, but at least with treatment, how I was feeling was somewhat expected and understood, and even though it got worse as the cycles went on, I could at least generally anticipate what was going to happen and when I was going to feel better.  Here there's just this kind of wide open unknown.

I know, I'm probably complaining a little too much.  After all, it's just a damn cold.  (Lorien has given me some crap about my man cold.)  But I really want it to be gone.  It was so awesome to feel good and energetic for a few days once the radiation side effects were gone.  I was so elated.  I even had this anecdote that I was going to blog about comparing it something that happened my first time at Burning Man.  (I'll save that for when I feel better again.)  But it lasted less than a week, and I'm longing for that feeling again.

So I'm trying to decide what exactly my criteria ought to be for returning to work.  I'm kind of anxious for life to return somewhat to normal.  But I worry that if my criteria is to wait until I fully feel 100% better, that could be a very long time.  Lorien thinks maybe I should wait until I don't feel I need ibuprofen any more, although as long as I'm popping pills in sufficient quantity right now, I'm feeling not too bad.  (That, along with Afrin twice a day, plus lots of saline nasal spray, and lots and lots of tissues, is what's keeping me going.)  I think I bottomed out in terms of how I feel a few days back (I think it was Wednesday), and now I do feel reasonably functional again.  (Functional enough that I baked an apple pie yesterday.)  My tentative decision had been to make tomorrow a decision point -- either I go back to work, or I make another doctor appointment.  Although I'm considering the possibility of doing both.

I suppose the fire may not be the best idea given my congestion, but it is so warm and cozy on a cold night, and it had been about a year and a half since we had last had a fire.  (On account of me being sick all last winter.)

I don't have too much to report other than griping about my cold.  I haven't done all that much recreationally since returning, other than hanging out with Dylan, on account of how I'm feeling.  It'll be sad to have less time with Dylan once I do return to work.

I mentioned that we flew back on Halloween, which meant that Dylan did indeed miss Halloween.  We gave him his Nemo costume a few days later for the heck of it, and he absolutely loves it.  It's becoming a cross between a costume, a stuffed animal, and a pillow (he's sleeping on it right now).  He has worn it a few times out of the house (going down to the market, to a friend's birthday party, and to music class) -- hopefully that won't become too much of an obsession, and it can mostly stay as an indoor thing.  But he sure is adorable when he wears it.
Nemo in his room
Nemo on his way to the market


That's about it.  I'll keep y'all posted on whether or not I go back to work.

Monday, October 29, 2012

Waiting out the wet weather

3 weeks since the last blog post.  I suppose it's inevitable that as things return to normal, my cancer related blogging will tail off.  Anyway, let me try to do a little catch up and let y'all know what I've been up to and how I'm doing.

I did finish up house chores.  The deck, at least.  Ultimately it was quite a bit more work than I had anticipated.  And I did get back on my bike, 2 days in a row.  Both times trailing Dylan.  The first trip was short and felt good.  The second trip was a bit longer, and by the end of it I was feeling pretty beat.  Between the deck and biking, I think that I perhaps overdid things a bit over the course of a half week or so.  Even though the acute side effects of the radiation have passed, it will probably be a slow process of getting back my normal level of energy.

Right around that time, Dylan got a cold.  I think I've been somewhat fighting it for more than 2 weeks now.  I've got a persistent cough, and on again off again congestion.  It's kind of annoying.  I'm hoping that it's just me fighting a cold, which is probably exacerbated by having a weakened immune system from treatment.  If it's still persisting by the time that I get home, I think I'm going to go to the doctor to get it checked out.

Which brings me to my whereabouts for the past few weeks.  After enough time had passed post treatment that the side effects had dwindled, Lorien and Dylan and I embarked on a bit of a Northeast tour to visit my family.  Any such trip had been on hold for quite some time.  We did a bit of a loop from Philadelphia (where my parents live), up to New York City (where my Aunt Elaine lives), down to New Jersey (where my brother Steve and his family are), and back to Philly.  It was good to see both family and friends -- Dylan got to see his friend Teddy (Neal and Genevieve's son) in New York, and I caught up with a friend from high school and earlier (Andrew Mathis) who I hadn't seen in 25 years.  I also got a chance to see the fall colors.  While they're not quite as impressive down here as they are up in New England (we did a fall trip up there a few years back), it's still pretty beautiful, and unlike anything we get in Berkeley.

Oh yeah, I almost forgot, another thing that happened on this trip was that Dylan turned 2!  He got to spend his birthday with his grandparents.  Lorien's friend Kathryn (who recently moved to Princeton) came to our little party along with her daughter.  Dylan did an awesome job blowing out the candle on his birthday cake, which came from the same local bakery that probably almost all of my birthday cakes growing up came from.  (I had a tiny bit of guilt not baking him a cake myself, but it would have been a lot of effort for the day after we flew cross country.)  Somewhat surprisingly, after talking up the chocolate cake for days leading up to the event, he didn't even end up finishing his slice, over several sittings.  I suspect that the problem was that one of his 2 year molars was coming in, and he at the time was starting a bit of a downward spiral both in terms of crankiness and appetite.  Some of our trip (esp. the beginning part of being in New York) was kind of difficult from all of this.  But the tooth is finally in, and he's much more cheery, and once again eating well.
Dylan blowing out his candle on his second birthday

Lorien went back home a week ago, and Dylan and I stayed with my parents for another week.  This was a bit of an experiment -- Dylan had never before been away from Mommy for more than about 36 hours.  It was a little shaky in the very beginning, but he's doing surprisingly well.  We'll see what happens when he gets home.  I suspect that this minor period of weaning might not be permanent.

We'll also have to see when we do get home.  We were supposed to be returning today, and I had tentatively been planning on returning to work on 1 November.  But we have the misfortune of being spatially and temporally located in the path of an approaching hurricane.  Our original Monday flight was canceled on Saturday night.  We switched to a different Monday flight, then that got canceled.  Right now we're scheduled to return home on Wednesday, but I suppose that also could end up getting canceled.  It's somewhat sad that Dylan will end up missing Halloween.  I'm not a huge fan of pre-fab costumes, but he is obsessed with the movie Finding Nemo and a few weeks back I happened to see someone selling a Nemo costume in his size really cheap, so I got it.  I guess we could dress him up in it a little past Halloween, just for the heck of it.  (He does have a few birthday parties coming up.)

So far out here (in Broomall, which is in Delaware County, west of the city) it's just like a normal rainstorm.  But things are expected to pick up in intensity overnight.  The Jersey shore is already getting hammered quite a bit.  I'm not too worried -- we're probably almost 100 miles from the actual coast, and we're not in a flood prone area.  The biggest likeliest potential annoyance would be a long term power outage.  Thankfully my parents have a gas stove, although the oven is electric.  I went out this morning (the markets were pleasantly empty) to get some ingredients for baking chocolate chip cookies -- I should probably stop tying and start baking soon, in case we lose power.

So that brings me up to the present.  I'd love to report that I'm home and back to work and totally feeling healthy and normal, but sadly none of those is true right now.  Hopefully they will all be true in the not too distant future.

Monday, October 08, 2012

Feeling better

It's been a little while, and I'm sure some of you are wondering if I'm still feeling like I was in my previous post.

I indeed was, for a while.  Having not been able to handle "real" yoga very well on my previous attempt, Thursday I went back to the somewhat lame yoga at the cancer center.  And even that was kind of a challenge for me.  As recently as Thursday night I was complaining about how sore and tired I was most of the time.  We had been tentatively planning on going to Tahoe this past weekend, and on Thursday night I made an executive decision that we weren't going to go, and I was going to spend the weekend resting and recovering instead.

What a difference a couple of days makes.  Friday I started to feel noticeably better, and by Saturday I was close to normal.  Not exactly normal -- I still have a bit of a sore throat in the morning, but with a little soothing liquid (either kefir; or my latest discovery, aloe juice, which is kind of weird) it goes away.  The biggest change is that my energy level is back.

While a million people may have headed into San Francisco this weekend for a temporal convergence of assorted events, I instead put my sudden burst of energy to productive use.  Last week we had some repairs done on our backyard deck (mostly replacing wood that had rotted).  I spent Saturday prepping the deck somewhat (sanding down the top surface), and building a little elevated platform for the plants that sit on the deck, so that they don't trap water on the deck.  Just a small project, but I have to say it felt really good to be sawing wood and pounding nails and actually making something useful.  Sunday and Monday I stained the deck.

I'm almost almost almost done.  All that's left is a few surfaces that aren't very visible, and a set of moveable steps (for the hot tub) that don't necessarily have to be re-stained.  Which leaves me with a bit of a quandary.  Do I just declare victory and not do anything more, or do I open up a third gallon of stain for the few remaining surfaces.  And do I let the fact that this stain is $50/gallon sway my decision.

So now I again am feeling sore, but in a good way, after a few days of good, honest work.

I suppose in retrospect we could have gone to Tahoe after all.  Oh well, it's good to get the deck done before the rains start.

Also on the recovery front, my hair continues to grow back.  I'm starting to look very much not bald.  And I just noticed that body hair on my front and back is starting to return.  My eyebrows also continue to fill in -- they had pretty much totally disappeard.

Hopefully I can be done with the house chores soon -- I'm eager to try getting back on my bike.

Sunday, September 30, 2012

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.

Tuesday, September 25, 2012

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.

Tuesday, September 18, 2012

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.

Monday, September 17, 2012

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.

Sunday, September 16, 2012

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.

Saturday, September 15, 2012

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.)

Tuesday, September 11, 2012

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."

Thursday, August 23, 2012

Set break

Yesterday I met with a radiation oncologist, and today I met with an oncologist, and I now have a better understanding of my progress, and what lies ahead.

I have had three PET/CT scans.  The CT part measures the size of the tumor, and the PET part indirectly measures the activity of the tumor (via SUV).  My tumor started out pretty big (big enough that it apparently had fractured a rib), and pretty active.  At the time of second scan, it had shrunk considerably, and was considerably less active.  In the third scan, it is no bigger than the normal region of the mediastinum (an area in the middle of the chest).  There may or may not still be a tumor there, but it's below the threshold of what the CT part can tell.  The PET part still shows a somewhat elevated SUV level.  But there's not a strict definition of what a normal SUV level is for healthy tissue, so this may or may not be from residual lymphoma, and there's no way to tell from a scan.  The only way to tell for sure would be with surgery, which in the middle of so many major organs would be very risky.

If there is something still there, radiation is the way to take care of it.  And while radiation does have risks, even if the radiation wasn't necessary, the risks of doing nothing if it would have been necessary are much higher.  As one bit of evidence, the radiation oncologist gave me a copy of a paper published last year that studied patients with primary mediastinal B-cell lymphoma (exactly what I have), and the outcomes were vastly different from R-CHOP plus radiation vs. just R-CHOP alone.

So I'm going ahead with radiation.  Yesterday they took measurements and did other preliminary work to prepare me for it.  This included using lasers to align spots on my body, then giving me 5 tiny little tattoos on my chest.  I've been poked a bunch with needles in the past half year or so, and I guess it wasn't nearly as unpleasant as the bone marrow biopsy, but damn that kind of hurt.  How many hundreds or thousands of times do you need to do that for any reasoanble sized tattoo?  Perhaps you get a bit desensitized, but I can't see myself doing that recreationally.  Although now that I do have some tattoos, maybe I should go ahead and get a piercing...

Anyway, the plan is for 18 doses of radiation.  Every weekday, no weekends or holidays, starting next week on Wednesday (8/29).  So even though it's supposed to be just 3 1/2 weeks, the Labor Day holiday pushes the final treatment into the fifth calendar week, on Monday 9/24.  My hope is to travel back east to visit family a little bit after that (although it's somewhat advisable for me to wait a couple of weeks), and then to resume working sometime in October.

There will be another scan 8 to 12 weeks after radiation is done.  Then scans every 6 months for 2 years.

The oncologist I met with is now my new oncologist.  I like her a lot better.  And I just sent email to my old oncologist thanking him for all that he's done, and telling him that I'm switching.  It was very brief (2 sentences).  I figure he can relate to that.  This is all still at the Alta Bates Cancer Center in Berkeley, so there's really no hassle in switching.

I'm a little apprehensive about radiation, but really everything is going according to plan, as good as can be expected.  In theory, the second scan could have shown progress to the point that the third scan did, and in that case radiation wouldn't have been such a straightforward decision, but that was an extremely unlikely outcome given the initial size of my tumor.  There are an array of possible side effects, but in general it's supposed to be less bad than with chemo.  And although I'm not particularly happy with the various chemo side effects (which aren't entirely gone, and might not be for months), I do believe that I had a fairly easy experience compared to some other people.

Which leads me to how I'm feeling.  I'm still having sleep issues, but by now they're mostly of the level of being frustrated by waking up repeatedly and not being able to sleep through the night.  There hasn't been as much outright insomnia where I'm lying awake for hours in the middle of the night.  (Although I did have that happen on one night, and heard a brief actual rainstorm at 3 AM.  In general I've always said that it just doesn't rain during the dry season here.  Now I'm wondering if it really does sometimes, but I'm sleeping when it happens.)  And I'm still kind of up and down in my energy level, although it's hard to say how much that is or is not correlated with sleep issues.  And I still get hot flashes, which kind of suck.  (Although that's from the Lupron shots; not the chemo.)  And yesterday just putting off lunch a bit too long led to a series of nasty feelings -- which had been somewhat par for the course earlier, but surprised me now, and reminded me that I've still got a while to go before I'm really normal again.

Thankfully I had the energy (and the perfect timing between chemo and radiation) to go to 2 of the 3 Phish shows in San Francisco.  Lorien went with me on Friday -- I think this is probably the first concert the two of us have gone to together since one of the Phish shows at the Greek two years prior, when Dylan was in utero:
Rich and Lorien with in-utero Dylan at Phish at The Greek Theatre in Berkeley - August 5th, 2010.
Photo courtesy of jg.
Dylan didn't go to this one.  I think we need to work up to it with some low key daytime outdoor shows first, before a large nighttime indoor show.  (We had been planning on taking him to a small, private music festival in the South Bay over Labor Day weekend, but sadly that was canceled.)  My friend jg (who took the picture above) did take his 4 year old son.  Riding BART back to the East Bay after the show, we're standing on this crowded train, and his comment was that with 2 cancer patients and a 4 year old, we were probably more deserving than most of the other people of seats.  (And we did eventually all get seats.)  I took Saturday off and went again (with other friends, but sans Lorien) on Sunday.  The shows took a lot out of me; it's probably a good idea that I didn't try to do all three.  I heard Saturday's show was good, but I still haven't listened to it -- hopefully this Saturday night I will.

Finally, it occurred to me that a while back I promised a picture showing off my new hat and new glasses, but never delivered.  Well here's another picture from Jon and Lisa's wedding that shows them off a bit:
Rich and Lorien and Dylan at Jon and Lisa's wedding.
Photo courtesy of Jerry Jaspar.

Wednesday, August 15, 2012

The end of an era

Yesterday was day 7 of week 3 of cycle 8.

Today was ... not.  It was just today.  Wednesday, August 15.

After 168 days of counting time by chemo cycles, it's nice to have a little return to normalcy.

But I'm not sure if I'm ready to quite declare this anything as momentous as the first day of the rest of my life.  There's still likely radiation.  And I think it will probably be a while before my body fully rids itself of the toxins from chemo.  And I'm still dealing with various lingering effects from medications even though I am now completely prescription drug free.

One of those is sleep.  I slept fairly well on Monday night, but Tuesday night was once again pretty sucky.  So I've been pretty exhausted all day today.  We had planned some celebrating -- opening another nice bottle of wine for dinner; and continuing the tradition from chemo days of breakfast pastries at the Cheeseboard, but without me having to go to chemo afterwards -- but decided to put it all off instead.  That's okay, I'll eventually get over this, and there will be plenty of time for celebrating later.  I hope I'm reasonably well rested by the weekend, as I'm planning on seeing Phish on Friday and Sunday nights in San Francisco.

Given my exhaustion, I ought to get to bed at a reasonable hour, so that's it for this post.

Tuesday, August 14, 2012

Got a feeling 43 is gonna be a good year

I said I'd give more details about the scan results.  I can't actually give as many details as I might like, because I admittedly don't have as adequate of an understanding as I'd like of the results.  For example, "The treated disease is confined to the normal boundaries of the mediastinum; therefore, measurement assessment is not possible."  Is that just a limitation of the PET/CT scan -- anything that's left doesn't take up any excess space, so they can't tell how much space it takes up?  The actual doctor's visit was very frustrating.  The first part was that they told me that they had the results, but wouldn't actually give me a copy of the report while I was waiting to see the doctor.  They check my vitals at each weekly visit, and my blood pressure was very high.  High enough that the tech questioned the accuracy of the machine (esp. since I don't really have a history of high blood pressure, even during chemo) and took a measurement by hand.  To which my response was that if you want to see my blood pressure come down, you'll give me a copy of the damn report now.  I had gotten up and was about to start searching through the paperwork that he left behind when he left the room to find it myself, when he came back and that wasn't necessary.  I suppose their logic is that they think that you need a doctor to adequately interpret the results for you.  Which to a certain extent I can agree with, but I have a few issues with that.  First, I'd still like the opportunity to see the report myself as soon as possible.  Second, my oncologist did a thoroughly inadequate job of actually explaining anything to me.  While I have no reason to question his medical qualifications, it's an understatement to say that his bedside manner leaves a bit to be desired.  I've been somewhat frustrated with aspects of his personality for a little while.  Those frustrations had increased in the time leading up to this scan, and last week's visit was the final straw.  I don't recall exactly what he did (or did not) say -- Lorien's paraphrasing is something to the effect of "I see these reports all the time; I know what matters here".  Maybe the details don't matter to him, but they do to me.

I was pretty upset, and somewhat furious, when we left the appointment.  Lorien did a good job of calming me down and putting things in perspective.  The important thing is that the chemo worked.  It did what it was supposed to do.  I think the gist is that while there still might be some residual tissue left from the tumor, it's not active.  And that radiation might be the answer to deal with what's left.  I expect to have a clearer picture when I meet with the radiation oncologist.  I have an appointment next week, on Wednesday.  I've already met with him once before, and I can attest to the fact that he has better communication skills than my oncologist.

Or perhaps I should say my soon to be former oncologist.  I pondered the idea of sticking with him, since it's the path of least resistance, and assuming that there's no relapse, my visits to him should be asymptotically tapering off.  But I've come to the decision that I really don't want to talk to him again, and I need to have a doctor that I can effectively communicate with.  I've already done some asking around getting recommendations for alternatives, and I'm in the process of trying to schedule an appointment with one.  Hopefully I'll be able to do that, and discuss the results of the scan in more detail, before my appointment with the radiation oncologist.  If not, I expect that the radiation oncologist can answer any remaining questions.

I've been spending the time since then trying to get some stuff done, continue recovering from my last chemo cycle (this blog post was delayed a day because Sunday night was my first night forgoing sleep meds, meaning that Monday was a day of being exhausted), and relaxing and having some fun.  On Friday I rode with some friends in the East Bay Bike Party, which is sort of a kinder/gentler version of Critical Mass, which imho has become a bit too dominated over the years by an overly vocal and confrontational minority.  Although I see from following that link that the 20th Anniversary ride is coming up in September.  I suppose that will be worth riding in.

Sunday was Lorien and my birthdays.  Yes, for those of you that may not know, we share the same birthday, August 12 (not the same year).  As Lorien likes to say, when you meet someone and discover that you have the same birthday, it right away gives you something to talk about.  In our honor, Matt and Alice came over on Saturday night and made us dinner.  Extra special kudos to Alice for baking us a chocolate cake!

On our actual birthday, our main plan was to head into San Francisco and have a picnic at Dolores Park.  Things didn't end up going exactly according to plan, but that's fine (and kind of par for the course), and it was still a very enjoyable day.  First we sampled some teas at Samovar, a kind of uber high end tea shop.  We picked the location by Yerba Buena Gardens, so Dylan could run around outside.  Sadly they were out of the loose leaf Russian tea that we wanted to take home.  I guess we'll have to find some time to head back.  We did however pick up some Ocean of Wisdom, which I highly recommend.  And am drinking right now as I write this.

Next we headed to the Lower Haight and visited Eve at the Penthouse, the apartment where I used to live when I was in the city.  (Was that 10 years ago?  My how time flies...)  It was a convenient stop that let us put Dylan down for a nap while we relaxed and had a cocktail.  Equal parts of peach vodka, orange liqueur, and elderflower liqueur; plus a dash of bitters; shaken over ice.  Made up on the fly based on the ingredients at hand, I was impressed with the results.

Things were happening later and taking longer than we had planned, so by the time Dylan woke up it was quite late in the afternoon.  And lunch was already in the past (Lorien fetched some takeout while Dylan was napping).  We still wanted to make a quick visit to Dolores Park if we could, because there's a great playground there that we've been hoping to check out for a while.  And it hadn't worked out previously when we had taken Dylan to the city to visit Neal and Genevieve and Teddy.  So our plan was that we'd stop there only if we could easily find parking.  Which thankfully we did.  Actually we had really good parking luck the whole day, including rock star parking directly in front of the Penthouse.  Somewhat regretfully, driving ended up being far less hassle, faster, and cheaper than BART would have been.

For the evening we actually paid for a babysitter -- I'm not positive, but this might be the first time we did this since our birthday last year.  We had dinner at Five, in downtown Berkeley.  Both Lorien and I felt it was good, but not great.  Following dinner, we continued feeding our armagnac habit at Cesar, where we happily discovered that they will pour flights, allowing us to sample a greater variety.  Oh yeah, I don't think I ever got around to posting previously about our armagnac discovery.  Armagnac is sort of like cognac.  But from a different region of France.  And, imho, better.  We had never even heard of it before our trip to France a few years back, but once we discovered it we fell in love with it.  It's poured in very small quantities and is outrageously expensive.  I'm willing to pay a lot of money for a bottle that I know I'll enjoy, and it will last a long time.  But I'm not going to pay over $100 for a bottle of liquor that I haven't had the opportunity to try first.

Sadly, our experiences with armagnac in the States had until recently been largely disappointing.  Most bars and restaurants don't even have it; and if they do they just have one or maybe two to choose from.  And everything we had tried here hadn't quite lived up to the caliber of what we had had in France.  A few cycles back, during a time when I was able to drink and feeling up to it, Kim had a night off and volunteered for some last minute babysitting.  Lorien and I went out for dessert at Cioccolata Di Vino.  We still wanted a little something more afterwards, but felt we had exhausted all the possibilities that were of interest to us there, so we stopped at Cesar on the bike ride home.  I figured we'd get cocktails, but Lorien decided to ask to look at the spirits menu.  What do you know, they have more than a dozen armagnac's!  We're determined to work our way through the menu, and buy a bottle of something that both we like and can find at a retail establishment.

Our latest trip there also convinced us that our preference of armagnac to cognac isn't just based on having previously sampled only cheap cognac.  As part of our flight, the bartender gave us a taste of what he thought was their best cognac.  And we still liked the armagnac better.

We finished off the birthday experience with leftover chocolate cake.  All in all, a wonderful day, and a great way to start our new year.

I cleared space on the mantel yesterday to put up our birthday cards, taking down a bunch of old cards.  I guess I hadn't done it in a while, since these included last year's birthday cards.  Last year I turned 42, and Lorien started her note with the (somewhat obvious) allusion to Life, the Universe, and Everything.  This past year most certainly has been the year of that for me, in ways that neither of us could have realized at the time.  (In retrospect I did have cancer then, but we didn't know it.)  Her note on the card ended with "I have a feeling 42 is going to be a good year", which I must say turned out not to be the case.  Yes, there have been advantages to not working for the second half of the year, and getting to spend more time with my family, but overall I'd say that 42 has been a kind of sucky year -- I don't really recommend cancer and chemo as ways to get out of work.  I'm very happy that I was able to get the scan done before our birthday (I had assumed that it would be the week after, and the topic would be hanging like a cloud over any celebrations), and that the results were positive.  And I'm very much looking forward to 43 being a better year than 42.

Friday, August 10, 2012

Translation

For those of you who would like to know what "looking good" means, Rich's tumor is inactive and small enough that it cannot be measured.  Or at least that's what I got from the PET scan report. Rich's oncologist is lacking in communication skills and basically said, "Your tumor's gone.  Now get out of my office."  Rich may or may not go in for radiation - we'll know in a couple of weeks.  And no more chemo!

He'll be back to add some more details when he's done celebrating.

Wednesday, August 08, 2012

Looking good

The scan results were good.  I'll write more later.

For now, I'm relaxing with a lovely glass of wine that's been in the basement long enough that the bottle was covered in post-fire construction dust (a 2003 Cabernet Franc), and Lorien is out fetching some dinner from Gregoire's (takeout French).

Gotta go, Dylan is signing for more leftover mac 'n cheese.  (Which in retrospect would have gone fine with the wine, but surely so will Gregoire's.)

Tuesday, August 07, 2012

The wait

I had the PET/CT scan today.  As before, I got all of the raw data on a CD.  And I'm even sitting here right now looking at in this cool viewer (OsiriX).  But that doesn't mean that I can adequately interpret the data.

It's a pretty complicated program, and I only understand a tiny bit of it.  I can geometrically correlate at least the default view with what is being scanned, as it displays slices moving from head to toe.  And I think I can actually see the difference between my initial scan and the cycle 4 scan.  Lighter colors are higher density, and in general white means bone.  And on the initial scan, there's this big white lump in the middle of my chest.  And that whiteness isn't there on the cycle 4 scan.  So I think I can actually see the improvement from the first half of chemo.  But presumably the differences are expected to be more subtle between the cycle 4 scan and the current scan, since the tumor already was much smaller and less active.  And nothing obvious jumps out at me.

So all I can do is wait.  It's even a little worse than I would like -- my weekly Wednesday appointments are usually early in the afternoon, but for various reasons this week is an exception and it's not until late in the afternoon.  I wish they would at least directly send me a copy of the report, rather than only sending it to my oncologist.  Oh well, it's not that long of wait, and ultimately nothing is any different now than it was before the scan (unless perhaps I have Schrödinger's tumor), but somehow having had the scan but not knowing the results makes me far more anxious than before I had the scan.

Monday, August 06, 2012

Cycle 8 scan coming up

The first half of my cycle continued mostly better than expected.  My friend Jon got married in the South Bay on Wednesday (Jerry's 70th birthday), and I was in the wedding party.  I had been somewhat trepidatious about this, because it was on day 1 of week 2, historically a point where I haven't done too well.  But everything went fine, and other than being a bit overwhelmed by the intense heat when we first arrived, which thankfully cooled down as evening approached, I felt well and had a good time.  Maybe a tad bit too good of a time, because Thursday was a totally different story.  It started out okay, but by the end of the day I was feeling really bad, and was pretty non-functional.  Friday was a little better, but still not that great.  Perhaps I got extremely lucky on the timing, and it would have happened anyway, although I suspect that the combination of too little rest, plus perhaps a little too much alcohol, and sugar, and caffeine, didn't help things.
Jon and Lisa's wedding.  I'm the one sporting the fancy hat.  Photo courtesy of Michael Villa.

Fortunately, things started to turn around by the weekend, and I'm feeling okay now that I'm in the second half of the cycle.  Saturday I even felt good enough to get back on the bike and we made it to the farmer's market for the first time in a while.  I got an even better deal from the same farm that brought us the bounty that became the previously mentioned peach/ginger pie.  Last time I bought the somewhat discounted, "Peaches to be eaten by candlelight", which are generally those that are a bit bruised.  This time I bought what they call a "pie box", which is 10 pounds of kind of beat up or otherwise defective peaches for only $10.  Even after cutting away bad parts, that's way more than I could use, but I found someone there to split it with.  I turned them into both peach ice cream (using the same flavors from the pie), and a peach galette.

Another bit of good news for cycle 8 is that, unlike cycle 7, my white blood count stayed normal.  So no antibiotics were needed.

I've been trying to get my cycle 8 PET scan scheduled for a little while.  It's more complicated than it ought to be, largely because the damn insurance company feels the need to get involved.  I'll spare my complete rant here, but the bottom line is that although the approval was supposed to have been submitted more than a week and a half ago, it turns out that it wasn't until today.  I'm kind of pissed off at my oncologist's office.  But then all of a sudden they moved it along crazy fast, and I get a call telling me that I have a scan scheduled for tomorrow.  Sort of like the opposite of hurry up and wait.  It's actually a bit earlier than I was counting on, but the timing is kind of good because I have my weekly checkup the day after that anyway, which means that I can use that opportunity to discuss the results.  The only downside is that the scan is scheduled for 1 PM, and I have to fast for 6 hours beforehand.  Normally I'd like to schedule it early in the morning, which just means having a delayed breakfast.  I thought about postponing it, but I'm kind of eager, if not impatient, so I'll take what I can get.  And it's not that big of a deal to just get up a bit before 7 AM and scarf down a quick breakfast and then get some more rest before the scan.

My oncologist is hopeful that the results of the scan will be good, and that this is the end of chemo for me.  I'm hopeful too.  And while we haven't discussed all of the details of various "what if" scenarios, that bottom line is that if that's not the case, it's really kind of bad news.  So I'm just trying not to spend too much energy worrying about that.

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.