Now back to your regularly scheduled Dylan update - 2.5 years

Before Rich got cancer, we were mainly using this blog to update on all the brilliant things Dylan was doing.  Rich will continue to update on his progress, but here's the somewhat late Dylan report, after his 30 month checkup, which really didn't happen until 31.5 months.

Mr. D is 30 lbs (49th %ile) and 37 inches (72 %ile), so this Jewish mother can officially stop worrying about him being tiny and undernourished.  He's loving going to his music class and gym class this spring, and will be starting preschool in September at a place 2 blocks from our house.  I've really appreciated having a nanny during the difficult times we've had over the past 1-2 years, but I think it's time that Dylan start spending his days with other kids (and hopefully learning to share better). He's got a handful of good friends he sees semi-regularly, but he should really enjoy seeing the same group of kids on a daily basis.

Here's a video from last week at Rich's office, where Dylan and I visited right after gym class. Also, some recent pics.  They're from my camera phone and therefore not up to our usual high standards ;)

Daddy handing Dylan a baby chick at the Farmer's Market last weekend

Going for a lighter 'do for the summer time

Looking good

I got the scan results yesterday.  Things are looking good.  Really, there's nothing bad that the scan had to say.

I talked a number of things over with Dr. Smith.  He still thinks that the GI issues are minor enough that the best course of action for now is to do nothing and see if they resolve.  With respect to the ENT issues, he gave me a referral to a doctor in the city, and I have an appointment next week.

I have a much more positive outlook than I did at the time of the last scan, 6 months ago.  Even though the news was good then from the perspective of the cancer, I was in fairly bad shape at the time.  I feel so much better now.

We're confident enough now, based on the scan results, that we've decided to take our first real vacation in 4 years.  We're going to Costa Rica for 2 weeks this summer, we just bought tickets yesterday.  I'm open to any suggestions and recommendations from anyone that has been there, if you have something you want to share.

Still doing okay

I think maybe I keep not posting b/c I don't have the energy for a long post by the time night rolls around, but I'm not sure when that's going to change, so I probably should give some kind of update, in case anyone is worrying.

I'm still working full time, and that's going fine.  Mostly in the office.  I typically stay home one day a week -- usually Thursday, which lets me take Dylan to Music Together late in the afternoon.

When I do go to the office, I'm generally biking.  My return to biking to work has meshed nicely with Bike To Work Month.  (Not that I'm going to stop just because May is over.)

Healthwise, I'm continuing to be mostly normal, but not 100% so.  I still have some minor GI issues.  My ENT issues are considerably improved, but also not completely normal.  Although it's been so long since I've really felt completely normal, that maybe I'm having a hard time remembering exactly what normal is supposed to be.

I'm feeling well enough that we've decided it's time to finally take a vacation.  It's been about 4 years since we've really had one.  (France and Belgium, before Dylan was born.)  The plan is to fly to Toronto, drop Dylan off with Lorien's parents, then head somewhere else.  For 2 weeks.  Most likely Costa Rica.  (So for any of you that have been to Costa Rica, feel free to offer any advice that you care to share.)  It would probably have been a little better to make this decision a few months back when airfares were cheaper, but we weren't really prepared to commit to anything then.  We have tickets to Toronto now, but not yet tickets for the next hop.

My next scan is Tuesday.  I have them every 6 months for a while -- which for me is basically lining up with Thanksgiving and Memorial Day, which at least makes it easy to remember.  I ought to have the results on Thursday.  Wish me luck.

Continuing to feel better

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.

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.

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 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.

1 year later

For the past three weeks I've been back to work full time.  Still completely from home as I'm still a little bit scared of germs at the office.  Lorien bought a desk of her own, so now we can both reasonably be working from the home office in the basement at the same time.  It's not too bad.  There are some things that are less than ideal by never being physically in the office, but there are some nice advantages as well.  My tentative plan is to return to the office sometime in the spring, but even then I think I might want to keep working a little bit from home.  I really need to take the time one of these days though to finish reading through monitor reviews and just make a decision, so I can stop just using the monitor on my laptop, which isn't really that good for full time work.  (I'm deciding between the Dell Ultrasharp U2410 and the ASUS PA246Q -- hopefully I won't wait so long that whatever I choose is no longer available.)

I'm continuing to go in to the cancer center for weekly bloodwork.  The past two weeks have had pretty awesome results.  While I'd love to report that everything is completely within range, I'm not quite there.  But pretty damn close.  The only thing out of range is RDW, which is the variation in size of the red blood cells, which is slightly high.  Which really is pretty meaningless by itself.

And I'm continuing to, to a first order, feel pretty good.  I'm still biking, and still doing yoga.  And we're going to Tahoe soon to visit some friends -- we'll see, maybe I'll even feel well enough for some snowboarding.  If there's any snow.  And we can figure out reasonable logistics for Dylan.

Unfortunately, things aren't completely well, and not quite as good as I'd like.  While I haven't truly felt like I've had a cold for a little while, there's the tiniest part that still hasn't really gone away, a little bit of congestion and runny nose.  And a little sore throat in the morning.

And the past few days I feel like I've been fighting off another cold.  Hopefully I can keep that at bay.  We need to make more chicken soup.

I'm also still having sporadic digestive issues.  I've tried really hard to correlate it with any specific foods that I'm eating, and I just don't think the correlation is there.  This past Tuesday was really bizarre.  I had a late afternoon snack of a Clif bar, about an hour before going to yoga.  Yoga in general went well, although the whole time my stomach didn't feel quite right.  Not painful, but just not right.  Right before shavasana, the teacher gave us an opportunity to do whatever pose we individually wanted to.  I've been pondering it for a little while now, so I tried a headstand.  Which I used to be quite fond of (and have done in some odd places, including the aisle of an airplane, and on the playa at Burning Man), but hadn't tried in several years.  Maybe not since Dylan was born.  Anyway, it took a while for me to get fully into the position, but once I did, from a whole body and muscle perspective, it felt really good.  Not so good, however, for my stomach.  Again, it wasn't painful, but something immediately felt not quite right and rumbling around from it.  So I came down.  By the time I got home, I was actually in pain, and I didn't feel like eating dinner and just lay down on the couch for a while until it eventually subsided.  The working hypothesis has been that the bacteria in my gut has been somewhat trashed from treatment and multiple rounds of antibiotics, and I'm taking a ridiculous array of vitamins and probiotics and supplements to try to build that back up.  But I just can't understand why, if that's all that's going on, a slight inversion of my body would cause me to end up in pain for a couple of hours.  I discussed it with my oncologist, and her suggestion was that I see a gastroenterologist.  Which I might, but I'm somewhat undecided.  It was the narrow viewpoint of a GI specialist that ultimately delayed me getting properly diagnosed last year.

Speaking of which, today it's been exactly one year since I started chemo.  I'd been pondering this and couldn't really come up with when is exactly the right time to start marking time and "celebrate", as it were.  Is it the first inclination that something was wrong was on 2/16, when I had a chest X-ray?  Or 2/17, when I had a CT?  Or 2/21, when I got the results?  Or 2/23, when I went to CPMC and met with the doctor who basically said, "I can't actually tell you that you have cancer until we do a biopsy, but I've been doing this a long time, and I can tell you that you have cancer"?  Or on 2/24, when I had a biopsy?  Or on 2/25, when I had a PET/CT?  Or on 2/27, when I first met with an oncologist and got the definitive diagnosis?  Or on 2/28, when this blog shifted primary focus from Dylan to cancer?  Or on 2/29, when I was admitted to the hospital?  Or on 3/1, when I started chemo?  I suppose it doesn't really matter, but I'm definitely calling it a year at this point.  And I'm still here.  Obligatory xkcd, http://xkcd.com/1141/.

So I suppose I shouldn't complain too much about not feeling 100% perfect.  And I am feeling well enough that we're discussing traveling somewhere, but I'm feeling not well enough that I'm also wondering if the time is right, but I don't want to keep putting things off indefinitely.  We had been tentatively thinking of France, but I wonder if a destination where food and drink is such an integral part of why we're going makes the most sense if I might not be in a position to enjoy it as much as I'd like.  So then we started pondering the idea of Central America or the Caribbean, but Lorien pointed out that if I'm still having congestion issues, I wouldn't be able to scuba dive.  And it would kind of suck to be in a place with good diving and not be able to go.  But I think we should go somewhere -- we both could really use a vacation.

By whatever time we'd reasonably go, my passport will be expired, so it's time for a new one.  I'm going to miss my current one -- it has a lot of stamps from a lot of countries, and I suspect that the next 10 years probably won't see quite as much of a range of travel as the previous 10.  My hair had been getting a bit odd and unruly (and definitely darker and curlier than pre-chemo), and I wasn't too psyched at the idea of freezing that in a passport photo for the next 10 years.  So today I got a haircut.  No pics yet, I'll post one when I have it.  So now I'm all set to get a new passport.  Hopefully 10 years from now I'll be doing the same again.