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.