Last week I saw Dr. Schweitzer, the ENT. I'm pretty sure it was a fungal infection, and that the guess of fluconozole was right, b/c it was pretty much gone by the time I saw her. Nevertheless, we had a productive talk about some of my other ENT issues. Her theory is that it's allergies. While not quite as dramatic as with a bone marrow transplant, my immune system has been pretty wiped out and is largely rebuilding itself, and even if I didn't have any allergies before, I could have them now. As far as why have they been going on for so long (more than half a year), even with changing seasons, there are tons of things one can be allergic to, and they're not all seasonally dependent. As far as why they've still been bothering me even when going away to different places with different climates for the weekend, she feels that's not long enough to get any kind of recovery. She's got me trying a nasal antihistimine, on the theory that if it helps, it's probably allergies, and then we can decide what to do next, possibly go to an allergist. I'm also taking this coctail of various medicines (the "magic mouthwash") that I had when I was in the hospital last time and was having so much trouble swallowing. Now I'm just taking it before bed, to try to coat my throat and help with the sore throat I've been having in the morning. It's been almost a week now, and while I won't say that I feel completely normal, I think I am definitely improved.
On Thursday I went in for my weekly blood work, and I'm now back to essentially normal, in the same way that I was before, before things went bad the most recent time. The only thing I have out of range is a slightly elevated RDW (same as before), which is the distribution in size of red blood cells. Which basically on its own means nothing.
And I'm feeling much better overall. I don't think I realized it at the time, but when my white blood count was down I was significantly worn down. It's only in retrospect, after the fact, now that I'm feeling better, that I can appreciate how un-normal I had been feeling.
I'm still a little afraid of trying yoga again, but I have been biking some more again. (The beautiful weather we've been having has helped.) On Saturday I biked Dylan down to the marina (and back, of course), for the Berkeley Bay Festival. It took some effort pulling him along (he's about 30 pounds now, so with the trailer that's pulling about 55 pounds), but I did okay.
I've also started going into the office again. I'm not sure exactly what my schedule will be, still probably some working from home. I am craving some level of returning to normalcy, though, my white counts are back up, and I think we're pretty much past flu season. (Google flu trends certainly shows a big change, for whatever that's worth.) I even biked to work today, which felt great. I do notice that if I take the stairs up to the office (we're on the 6th floor), it's a lot more effort for me than it used to be. Something to work on, I guess.
On Monday Lorien and I went into SF to meet with Garrett Smith, an oncologist I've been considering switching to. It was a fairly productive meeting. At the very least, I appreciate the fact that he was willing to sit down with us for an extended period of time, talk to us, listen to us, and answer our questions in a manner that felt relaxing and not rushed. I don't think I've ever had such an uninterrupted conversation with either Dr. Wexler (my current oncologist), or Dr. Cecchi (my original oncologist). I'll list a few key points that I took away from our meeting. What I'm going through isn't all that surprising and is not unexpected based on the treatment that I've had. If we do nothing, he thinks I'll probably get better on my own, but there are things we can do to help the recovery. We're first trying a new medication to indirectly address some of the GI issues by helping my body recover faster. He also seconded Dr. Wexler's theory (that I had been skeptical of) that the supplement that I was taking, as an anti-inflammatory, could have been the cause of my WBC drop, and he doesn't think I should return to taking it. Finally, I now have a third opinion that based on my diagnosis, that my course of treatment was the proper one, and it's exactly what he would have recommended.
So that's where I am now. I'm in general in a good mood and trying to be optimistic about the future, and Lorien and I are starting to discuss possible travel plans for a much needed vacation. Although I'm still a little apprehensive, since I've had periods of optimism and feeling good before, only to have things get bad again. So I'm trying to be realistic, but I am hopeful. For now I'm going to continue with frequent blood work, probably up until my next scan towards the end of May. But I'm hopeful that if things continue to look good up until then, and that if the scan looks good, that I can then cut back to much less frequent interactions with the medical establishment.
Wednesday, April 17, 2013
Thursday, April 04, 2013
A little update is in order...
[My previous post was really written on Tuesday evening, despite the Wednesday timestamp. The posting delay was due to Blogger sucking at video.]
By Wednesday my throat was a little worse. And my morning weight had dipped to 137#, which was the lowest since it recovered a while ago (I forget how long) and mostly stabilized in the 140-145 range. So I think I reached the point where the throat was causing me to not eat and drink enough. Which was starting to sap my energy. I called Dr. Schweitzer's office hoping that if I explained the situation I could get taken somewhat earlier than next Wednesday, on a somewhat urgent basis, and the answer was no. So I decided to try to see someone else. I called the primary care office where Lorien just started going (on Matt and Alice's recommendation), and was able to get a same day appointment with a nurse.
I was hoping that maybe she could look down with a scope, but she said no, I needed to go to an ENT for that. She did a strep test, which was negative (as she thought it would be). Just looking in visually, she didn't see anything that she thought was a sign of a fungal infection. But I think the pain is somewhat localized, and further down than would be visible. So we decided to just try taking an anti-fungal anyway (she felt there wasn't much of a downside even if it was useless), and by the time of my ENT appointment next Wednesday, I ought to have some idea of whether or not it worked. So far I've taken it twice -- anecdotally, I do think I feel a bit better today than yesterday, but there's enough variation that I think it's way too early to conclude anything.
Today I went back for more blood work. It's not completely normal, but close. Way better than Monday. The question is why.
Dr. Wexler's only explanation is that I started taking some supplements, my WBC nosedived, I stopped taking them, it went back up. I think it's just a coincidence. I brought in the bottles and showed her exactly what I was taking, and while she couldn't pinpoint anything in particular that she thought was responsible, there was plenty in them that she didn't understand in detail.
We agreed that I'd start taking things again one at a time, separated by a week.
She still doesn't want to do anything about the staph.
We discussed possibly moving up my scan earlier than when it's currently scheduled (end of May), but decided to first see how things go in the next few weeks.
Nevertheless, I think it's time I get of fresh set of eyes at the big picture of what's going on with me, so I am going to go see Dr. Smith in SF. I spent a long time this afternoon scanning all sorts of paperwork that I have. It may be faster than getting copies from the various medical institutions, but wow was it a pain. Our all-in-one doesn't have the most reliable paper feeder for documents that aren't perfect. And the scanning software doesn't do a very good job recovering from errors. Eventually I was able to piece everything that I wanted together, but it really made it clear (not that this surprised me that much) that I don't have hardware capable of efficiently scanning a large amount of paperwork, should I for example decide to get rid of the contents of all of our physical file drawers. I wonder if once Sutter switches to electronic records (in progress and I think is supposed to be complete in a few weeks) if I'll be able to easily access everything in electronic form.
So I'm doing okay. Sorry if my last post was a little overly negative or alarming. I'm not really doing all that bad, but I am getting a bit impatient already and just want to get better.
In other news, my new passport came in the mail a few days ago. It was amazingly fast -- just over 3 weeks total round trip door to door from application mailing to receiving the new passport -- regular non-rushed application, and no kind of express mail or anything. I was pretty impressed. Now I just need to get well enough that we feel comfortable buying tickets and committing to travel somewhere.
By Wednesday my throat was a little worse. And my morning weight had dipped to 137#, which was the lowest since it recovered a while ago (I forget how long) and mostly stabilized in the 140-145 range. So I think I reached the point where the throat was causing me to not eat and drink enough. Which was starting to sap my energy. I called Dr. Schweitzer's office hoping that if I explained the situation I could get taken somewhat earlier than next Wednesday, on a somewhat urgent basis, and the answer was no. So I decided to try to see someone else. I called the primary care office where Lorien just started going (on Matt and Alice's recommendation), and was able to get a same day appointment with a nurse.
I was hoping that maybe she could look down with a scope, but she said no, I needed to go to an ENT for that. She did a strep test, which was negative (as she thought it would be). Just looking in visually, she didn't see anything that she thought was a sign of a fungal infection. But I think the pain is somewhat localized, and further down than would be visible. So we decided to just try taking an anti-fungal anyway (she felt there wasn't much of a downside even if it was useless), and by the time of my ENT appointment next Wednesday, I ought to have some idea of whether or not it worked. So far I've taken it twice -- anecdotally, I do think I feel a bit better today than yesterday, but there's enough variation that I think it's way too early to conclude anything.
Today I went back for more blood work. It's not completely normal, but close. Way better than Monday. The question is why.
Dr. Wexler's only explanation is that I started taking some supplements, my WBC nosedived, I stopped taking them, it went back up. I think it's just a coincidence. I brought in the bottles and showed her exactly what I was taking, and while she couldn't pinpoint anything in particular that she thought was responsible, there was plenty in them that she didn't understand in detail.
We agreed that I'd start taking things again one at a time, separated by a week.
She still doesn't want to do anything about the staph.
We discussed possibly moving up my scan earlier than when it's currently scheduled (end of May), but decided to first see how things go in the next few weeks.
Nevertheless, I think it's time I get of fresh set of eyes at the big picture of what's going on with me, so I am going to go see Dr. Smith in SF. I spent a long time this afternoon scanning all sorts of paperwork that I have. It may be faster than getting copies from the various medical institutions, but wow was it a pain. Our all-in-one doesn't have the most reliable paper feeder for documents that aren't perfect. And the scanning software doesn't do a very good job recovering from errors. Eventually I was able to piece everything that I wanted together, but it really made it clear (not that this surprised me that much) that I don't have hardware capable of efficiently scanning a large amount of paperwork, should I for example decide to get rid of the contents of all of our physical file drawers. I wonder if once Sutter switches to electronic records (in progress and I think is supposed to be complete in a few weeks) if I'll be able to easily access everything in electronic form.
So I'm doing okay. Sorry if my last post was a little overly negative or alarming. I'm not really doing all that bad, but I am getting a bit impatient already and just want to get better.
In other news, my new passport came in the mail a few days ago. It was amazingly fast -- just over 3 weeks total round trip door to door from application mailing to receiving the new passport -- regular non-rushed application, and no kind of express mail or anything. I was pretty impressed. Now I just need to get well enough that we feel comfortable buying tickets and committing to travel somewhere.
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:
Lorien's parents came to visit:
and we went to Yosemite:
and had a small seder on the first night of Passover:
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.
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:
 |
[After 3 attempts, I give up. Blogger sucks wrt (non-YouTube) videos.
Just go to the source at http://vimeo.com/dingdingwikki/13]
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.
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