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.