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.