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.

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.

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.

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.

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.)

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.

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.