Wednesday, April 03, 2013

M steps forward, N steps back

(I'm not quite sure of the numeric ordering of M and N)

It's been more than a month, it's probably about time I gave a little update.

First, the good news.  Life has been going along mostly okay, and I've been working full time, but still from home.

We went to Tahoe.  Dylan hung out with his doppelganger Cooper:

and went skiing:
[After 3 attempts, I give up.  Blogger sucks wrt (non-YouTube) videos.
Just go to the source at]

Lorien's parents came to visit:
Grandma(ma) reads Dylan a seemingly infinite string of bedtime stories.

and we went to Yosemite:

Lorien and Rich on a trail down from Inspiration Point to Bridalveil Falls, with Yosemite Valley in the background.
The trail actually used to be a road before the Wawona Tunnel was completed in 1933.

Mirror Lake, in Yosemite Valley. The figure in the purple hat on the left is Dylan.

Dylan on the path leading to Yosemite Falls

and had a small seder on the first night of Passover:

חַג שָׂמֵחַ

In last month's blog posting, I mentioned that I was worried I was picking up a cold.  Yes, I did get a cold.  And it's been lingering for a while (I still haven't reached a level of wellness since then that I had before it).  Nevertheless, it hadn't been too bad, and I was able to be reasonably active in Yosemite.  On one day Lorien and I went for a hike (sans Dylan) that was about 4 miles, with some significant elevation gain.  The next day we did a smaller hike (about 2 miles) that was mostly flat, although I was carrying Dylan in a pack most of the time (so probably at least 30 pounds for pack plus Dylan).  Both days I did pretty well, and wasn't bothered by the activity.

But I've still been having some GI issues.  I gave up on a gastroenterologist for now, after both of the GI docs that I got referrals for were in the same practice as the guy I'm pissed off at from pre-diagnosis.  Instead I went to a dietician that's part of the practice of Dr. Garrett Smith, an oncologist in SF who's somewhat affiliated with UCSF but has his own oncology practice.  More on that later.

I had decided to pause on yoga a bit after my bad experience right before last month's blog post.  I finally gave it one last try last week.  Class itself wasn't too bad, although things didn't feel quite right.  But after class, once again, I got pretty significant abdominal cramping.  No more yoga for me for now.  While that annoys me somewhat, more what I'm worried about is what lingering and unknown issue is this might be a sign of.

Nevertheless, until late last week, things had been mostly stable.  Still some lingering cold-like issues -- a mild sore throat mostly in the morning, and the congestion/runny-nose that's been going on for about half a year now.  Not great, but good enough that I had been pondering going back to the office soon, and the plan had been to cut back on how often I had blood work done.

Then last Thursday, at what was going to be the last of my weekly blood draws, my white blood cell count had nosedived.  We don't know why.

This weekend, my sore throat started to get worse.  It's not nearly as bad as around New Year's, when I had a fungal infection that had gotten so bad I was having trouble eating and drinking and I ended up in the hospital.  Nevertheless, it has started to affect what I'm eating, and I'm a bit worried about it.

I went back to my oncologist for more blood work on Monday.  My white counts are somewhat improved, but still not good.  Dr. Wexler for now just wants to wait and see what happens.

She briefly glanced at my sore throat and doesn't think she sees anything wrong.  But she wasn't particularly helpful about investigating further, other than concurring that maybe going to an ENT would be worthwhile.  Unfortunately, the earliest I could get an appointment with Dr. Schweitzer (who I've seen repeatedly, including several times during treatment, and I'd prefer to go back to) is a week from Wednesday.

I'm starting to question how satisfied I am with Dr. Wexler.  I'm not sure she's being proactive enough dealing with the various issues that I'm having, and only reacting to certain things, and even then not considering everything.  I'd been waiting for some test results that had been ordered by the dietician at Dr. Smith's office, and I got those on Friday, and one of the things they point to is a possible staph infection in my gut.  Which could be related to the GI issues I've been having.  But Dr. Wexler doesn't want to do anything to treat that right now, and just wants to deal with one thing at a time, which for her is my WBC.  Even though we're not actually doing anything about that right now other than waiting and seeing.  I'm not sure if I agree with this.  And she doesn't really have a very good theory about why my WBC may have dropped, nor do I get the feeling that she's that interested in coming up with one.  And I don't really feel like I ever got any kind of satisfactory explanation for why things deteriorated so much back in December.  My tentative plan is to go and see Dr. Smith for a second opinion, although he's out of town this week, so the earliest this might happen is next week.

So that's where I am right now.  How much my throat bothers me varies from moment to moment.  I was nervous that today was going to be way worse than yesterday, and if that was the case, I was going to try to find someone who could see me sooner than next week, but it's roughly similar to what it was like yesterday.  I've been trying to take it easy a little bit, and to start going for daily walks again (I had been doing this for a while, but it kind of fell by the wayside as I started working more), and I've notified work that any plans to return to the office are on hold for a while.

1 comment:

Judy said...

Possibly the coolish damp weather of Berkeley's winter and early spring might be a cause for your frequent colds. I found the only time I didn't have post-nasal drip was in Yosemite where the air was dryer.