A tale of 3 doctors' appointments

First, the most important appointment: Rich had a scan on Monday and it was all clear. His oncologist feels that he's stable enough, and his odds of recurrence are sufficiently low, that he doesn't need another scan for a year. Huzzah!

Next, Dylan had his 3-yr old well child visit. He hasn't been particularly "well" this week, since he's been suffering from a persistent cough, but, they did weigh and measure him. He's 38 3/4", which puts him in the 76th percentile for height, and 32 pounds, which is the 51st percentile for weight. It also means that he's legitimately tall enough for the big merry-go-round at Fairyland in Oakland. Sadly, they no longer measure head circumference, which is where Dylan really excelled (at one point I think he was up to the 98th percentile).

Finally, I caught Dylan's cold, and pink eye. Dylan's was mild and cleared up without medication, but mine was pretty yucky. I didn't even know adults got pink eye. My doctor's appointment was to get antibiotic drops for that.

Anyway, it's been a while. Dylan had a 3rd birthday party at Aquatic Park near Dreamland Playground (or Train Park, as we like to call it). Pics are here.

And here's Dylan in his Nemo Halloween costume that he finally got to wear after using it as a stuffed animal for a year. If you recall, he missed Halloween last year because Hurricane Sandy interfered with his flight home from Philly.

Goodbye, Selena

This post is long overdue.

Our second beloved kitty, Selena, passed away on July 7, age 17+, likely from old age. Her death was somewhat of a surprise, given that she'd been to the vet a few months ago and was given a clean bill of health, but she had been slowing down a bit.  Maybe she missed Dirk.

Our house feels strangely quiet now (other than the toddler), since we've had cats continuously living here since we moved in here in 2005.  There are no more explanations for noises heard in the night. I'm finding it difficult to put away the cat paraphernalia.

Farewell Selena, you are missed every day. Here are a few photos from the past couple of years.

Selena loved the amount of time we spent laying around when we had a newborn.

Detente

She hung out here because of the heater's pilot light.

Warm and snugly by the fire

Selena's insistence on sleeping under the covers was definitely a mixed blessing.

Being a good sport

Who knows what lurks in the shadows...

Infinite Cat

Back when Selena was willing to let Dylan manhandle her

Helping me read to Dylan

Proud to be portless

Wow, it's been more than a month.  I guess as things get back to normal I have less to say.

So here's a little bit of a recap...

I saw an ENT.  I believe that the word the tech used to describe my hearing was "spectacular".  Or something to that effect.  The only possible oddity that they found was a tiny piece of hair that was on my left eardrum.  The doc managed to get it out.  He gave me a qualified okay to go scuba diving.  His suggestion was to first go to a local pool and go down to the bottom and make sure that I have no problems equalizing.  I did this a couple of weeks ago, and at least at the relatively shallow depth of 12 feet, I had no problem.

GI issues continue to improve, as predicted.  I wouldn't say everything is completely normal, but for the most part it's close.  Any occasional discomfort I have is typically pretty mild.  I'm not sure if I'm yet recovered enough for wings, but it's been a while since I've had a serious enough situation that I needed to stop what I was doing and lay down, which had been happening sporadically in the past.

And the really big news, I got my port out!  This is the thing they implanted in my chest to deliver chemo.  Pictured in this post.  The original plan was to get it out sometime last fall.  But I was in pretty poor health at the time, so we put it off somewhat indefinitely.  It did somewhat come in handy when I was in the hospital over the winter, but I had gotten really sick of having it in.  One thing that kind of sucked was that it's supposed to be tapped at least every 4-6 weeks or so, to make sure it doesn't get infected.  And that's not the most fun procedure -- it's a little painful.  Nevertheless, it seemed prudent to wait until after my most recent scan, just to make sure everything was fine and it wasn't likely to be needed again.

It's been 2 weeks now since I got it out, and while the area is still a little bit tender, it's healing nicely.  Yay to being fully human again!  I wanted to keep the port, but they wouldn't give it to me.  They said they'd have to sterilize it first, and they didn't have the facilities to do that in the area where the port was removed, and I guess they either don't have the procedures in place or just didn't feel like sending it off somewhere else to do so.

So life is in general pretty good.  I'm working full time, and for the most part all in the office.  I'm riding my bike to work most of the time.  And Dylan continues to be a joy.  (Most of the time.)  And we're looking forward to vacationing in Costa Rica.  (Dylan will be spending the time with Lorien's parents in Toronto.)

Gotta run, Dylan is getting a bit impatient with my typing.

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.

Inching closer to normalcy

Almost 2 weeks, and I guess I left things hanging a bit.  I indeed did manage to not get sick.  I suppose it's somewhat inevitable that as my life inches closer to normalcy, that the posts will be fewer and farther between.  I'm okay with that.

I'm continuing to increase my activity level.  Once again my bike is my default mode of transportation around town during the day, unless it's too cold or wet.  On Thursday, I even got on my road bike for the first time in a long time for a recreational ride up into the hills.  I'm not positive, but my recollection is that the last time I did that was during chemo, cycle 4, week 3, day 7.  Which would have been May 22.  It was a little slow going, and I took a couple of rest stops, but I did one of my standard small loops (a little under 10 miles, I think), and it went fine.  Felt good, even.  Perhaps I was a bit overly optimistic when I went shopping for new cycling gear (new helmet and shoes) last year during chemo.  On the plus side, I was happy to have a nearly new pair of cycling shoes for the ride.  I'm also continuing to go to yoga a bit, although I could probably benefit from more of it.  And this weekend I did some yard work, and while I'm a little tired and sore from it, I think I kept it under control and didn't overdo things like when I stained the deck after radiation back in October.

The most significant little glitch in all of this is that I'm having some minor digestive issues.  And they're a little bit more prevalent when I'm exercising.  One theory is that my stomach et. al. has been kind of trashed by numerous rounds of antibiotics (not to mention chemo).  Another is that maybe I've developed a little bit of lactose intolerance.  Maybe both are true.  I'd been trying to have more probiotics in the form of yogurt and kefir for a while, and I recently decided to try a supplement.  But I'm a little skeptical of a pill supplement.  I mean, sure, maybe there were active cultures when it was packaged, but if it's not kept refrigerated, how do they stay alive?  So I also tried buying a liquid form, that said to keep refrigerated.  Wow, I have to say, that is perhaps the nastiest, most disgusting thing I've ever encountered that is designed to be ingested.  I haven't done so yet, but I'm probably going to toss the rest of the bottle.  It's probably a bit too early to make any conclusions, but I'm not yet convinced that any of this is making any difference.  A nurse also suggested trying Beano -- we'll see how that goes, it's also too early to say.

I'm also still dealing with a bit of a runny nose and occasional congestion, but it's minor enough that I can just deal with it and am not to worried about it.  Although it would kind of suck if it went on forever.  The cough has been gone for a while.

I'm still going in for weekly blood work, and I'll probably keep that up for the rest of flu season.  My numbers look pretty good -- there are a few items that are usually a little out of range, but they're pretty close, and nothing to worry about.  I'm still on the schedule for my oncologist for these visits, but the agreement we came to was that she'll look at the results of the blood work, but I'm not actually seeing her every time that I come in.  She'll contact me if she's concerned about the results, and I can request to see her if I want.  But our visits had gotten kind of routine, and I don't think I need to talk to her every week.

Given all of this, I've been gradually increasing how much I'm working.  I started out working half time, then increased to 3/4 time, and starting tomorrow my plan is to return to full time.  But this is all still completely from home.  My plan is still to wait until the spring to return to the office.

We're also starting to think about taking a vacation (likely to Paris plus one other place that we haven't decided upon yet).  I need to decide what my criteria is for feeling well enough that we're willing to commit to buying plane tickets.

Successful avoidance?

I'd hate to jinx things by prematurely declaring victory, but so far I have managed to not get sick.  And while I don't think any of Dylan, Lorien, or our nanny have yet completely recovered back to full normalcy, none of them are really what I'd consider outwardly sick any more.

Trying to avoid the plague

Dylan got sick early Monday morning.  Our nanny got sick sometime today after she was here this morning.  Lorien got sick last night.

I've been feeling something vaguely getting closer to normal for the first time in more than 3 months.  I went to yoga earlier this week.  I've been riding my bike around town when running errands.  I even started working again, half-time from home.  I really, really, really don't want to get sick.  I'm taking as many precautions as I reasonably can (e.g. I'm doing a load of laundry right now so that I can sleep alone in the basement), but I worry that it might just be inevitable.

Wish me luck.

Rolling right along

I continue to slowly feel better.  I still feel a little bit like a have a cold, but it's gotten to the point where it's fairly minimal.  If things were just ordinary, I probably wouldn't think too much about it.  Except for the fact that it's been going on for more than 3 months now.  Lorien still has a bit of a cold as well -- in fact, I think at this point she might be a little worse off than I am.  Although hers has been going on for only 3 weeks, but that's still long enough to be pretty annoying.

I've been continuing to go on walks most days around the neighborhood.  It's helped that, unlike my last posting, it's actually gotten quite warm and pleasant lately.  Yesterday I felt good enough to try getting on my bike, for the first time in quite some time.  A month, perhaps?  It was a pretty short and easy ride, just to South Berkeley, relatively flat.  The last time I did a similar ride, which had also been the first attempt in a while, the return trip was kind of grueling, and the overall experience convinced me that maybe I wasn't quite in good enough shape yet to be riding my bike.  Thankfully, this time, the results were much better, and I hope to continue gradually increasing my activity level.

I'm also continuing to go in weekly for blood work and meeting with my oncologist, and my counts are looking pretty good.  Good enough that I got the go-ahead to get a flu shot when I went in this past Thursday.

So I'm cautiously optimistic.  Of course, the last time I got cautiously optimistic following a gradual improvement following a hospital stay, I ended up back in the hospital again.  But I've already gone longer since hospital visit #2 compared to the time between #1 and #2, so that's a little something to celebrate.

The bottom line is that I've decided that I'm well enough to start working again.  Tomorrow.  It'll have been a 5 week hiatus since my last attempt at working, which itself lasted for 5 weeks (before hospital stay #1).  Hopefully this return will be for good.  Or at least until I feel well enough that we finally take a much delayed vacation (tentatively to France, sans Dylan).

For the time being it's going to be just half time.  I'm not making any particular plans yet about when that will be ramped up to full time.  It will depend on how I feel.  I'd also like for now to leave enough free time so that I can continue to get some exercise on most days, as I think it's somewhat important for my overall recovery.

But even though my counts look good, I'm still concerned that my immune system is weakened.  An office may not be quite as bad as a preschool or daycare, but it still can be a fairly unforgiving breeding ground for spreading germs.  Especially during a flu season as bad as this one.  So for the time being, I'm going to be working 100% from home.  We need to do a little work down in the basement to make our office setup hospitable for 2 people to be working simultaneously.  Which will be one of my first tasks tomorrow morning.

One day at a time

It was cold today.  Well, cold by Bay Area standards at least.  Meaning it got down to freezing last night, and was in the 40s during the day.  (I know, live here long enough and you become a cold weather wimp.)  We had been thinking about going to a hike in Redwood Park, but decided that today might not be the best day to spend in the shade of a redwood forest.  So instead we took a walk around the neighborhood.

Our destination was John Hinkel Park, up in the hills just a little bit past Indian Rock.  The former is a park none of us had ever been to, the latter is a park we've been to many times.  We stopped at Indian Rock first.  Dylan was significantly more comfortable climbing up the rock this time, compared to his last time there over the summer.  It was a very clear day, and he pointed out the boats on the water in the Bay below and in the distance.  We then continued on to the second park -- I had never even heard of this park until somewhat recently; somehow I ended up on a web page that was talking about it and mentioned an amphitheatre built into a hill there.  That was indeed there, but the find that we were really excited about was the old playground.  Swings on a huge structure with very long chains that swing up way high compared to the small ones at most playgrounds.  And best of all: an actual, old-fashioned see-saw.  I've been searching for one of these for a while, and was pretty disappointed when I realized that just about all of the playgrounds now only have these really lame springy things and not real see-saws.  Not something I had ever really noticed until I became a parent, how safe and boring most playgrounds are today.  There was one other kid in the playground, a little bit older than Dylan (around 4), and the two of them really enjoyed riding the see-saw, even if their weight was a little mismatched and I needed to give Dylan a bit of an assistance on every round.

Any way, the whole reason I'm writing this is that the total walk we did was about 3 miles.  Plus a fair amount of elevation gain.  Not something I probably would have thought that much about before, but it was quite a bit given my recent relative level of inactivity.  Perhaps the most strenuous bit of anything I've done since our visit back east a few months back.  I was pretty tired and worn out afterwards, but I did okay.

So even though I still feel like I have a cold a bit, and it's still somewhat annoying, I'm doing okay.  And trying to slowly push my activity level.  It was a nice walk.  And Dylan had a lot of fun.  (He rode in the Chariot for the majority of the walk -- I can't imagine how long it all would have taken at the pace of toddler.)

I don't want a goldfish

I'm not the only one who's been sick, and I'm not just talking about what's going around this winter (although that is making me nervous, see an article from today's NYTimes for some more details).

I don't think I'd mentioned this before -- I think I had been planning on it, but never got around to it.  A little over a year ago, sometime between Christmas and New Year's 2011, Dirk's health suddenly nosedived, he was very lethargic, and barely eating and drinking.  We took him to the vet, and found out that he had chronic kidney failure.  He was near death at the time, and they thought that even if he recovered, he had perhaps 6 months left to live.  Thankfully, he managed to pull through that episode much better than expected.  For the past year he'd been doing pretty good, and having what appeared to be a satisfying life.  We had to give him special food (trying to keep both Dirk and Selena's different special foods separate and each going only to the appropriate cat was somewhat of a challenge), and we had to regularly give him injections of subcutaneous fluid (originally every day, later we backed off to every other day).  But things were going well, and Dirk was starting to tolerate Dylan's company much better.  In fact, sometime in December, Dirk started sleeping in Dylan's crib, which made Dylan quite happy.  Although sometimes Dylan was a little annoying and unrealisitc in his demands.  Like when he was supposed to be sleeping and was instead complaining and I came in to check on him and he was sitting up in his crib pointing to his lap and demanding, "Dirk! Lap!"  Anyway, perhaps I was a bit delusional thinking that this could all go on indefinitely.

Almost exactly a year after the 2011 episode, Dirk's health took another sudden downturn, and he was again barely eating and drinking, and had noticeably lost weight.  We took him to the vet on the 31st of December.  He was once again having serious kidney issues, but it was worse than that.  Besides wanting to hospitalize him and treat him for that, they were talking about a blood transfusion, and he had developed ulcers in his mouth, and even if we were to bring him back from the brink again, it was only a matter of time before this happened again, and this time it was less likely to be 12 months in the future.  I very much wanted to do something to help him -- but Lorien was the voice of reason, cautioning me about us going too far down the path of what turns out to be a hopefuless situation.  I didn't want to do that, and we've seen other people do it with their pets, but it can be hard to decide when is the right time to let go -- I don't think it's usually obvious except in retrospect.  And I was feeling kind of karmically guilty about the whole situation.  After all, I'm also battling a life threatening illness, and I don't think I'd appreciate someone giving up on me just quite yet.  But it's not the same; as Lorien pointed out that I have much better odds, and I'm obviously capable of communicating about my illness that Dirk isn't.  If we weren't going to do anything to save him, I really wanted to be able to just bring him home and give him palliative care and let him live out the rest of his life in peace.  But the hard truth is that were really just weren't equipped to be able to do that.

In the end, we made the difficult decision to put Dirk to sleep that day, while he was at the vet.  We tried to get Dylan to say goodbye, but he wasn't really able to grasp the reality of the situation.  A few times since he's made reference to Dirk's blanket (in his bed), or said other things about Dirk, and we've simply explained to him that Dirk was sick and Dirk isn't coming back, and he seems to be willing to accept that.

I had been originally thinking about blogging about this later that day, but I felt I needed a little time to just chill and decompress.  Then by the next day I was sick, and by the day after that I was in the hospital.  Which put this a little bit on the back burner.  On the positive side, having a 102F fever does wonders to take your mind off of the guilt you're feeling about putting your cat to sleep.

Dirk will be missed.  I believe that he enjoyed himself in life, and he was certainly a bit of a fixture in the neighborhood, greeting all sorts of passers by from the sidewalk.  He would have been 13 in February.

Dirk is survived by Selena, who is almost 17.  Maybe Dylan will some day be gentle enough to her that she trusts him enough to sit on his lap.

[Probably only 1 or maybe 2 of my readers will get the title reference.  Hint, it's from a song.]

No news

The bone marrow biopsy was negative.  As were all of the cultures.

So there's no sign of any cancer returning.  And there's also no discernible reason that I should be getting sick.  But I have been sick.

The only reasonable explanation I've been offered is that my immune system is still weakened from treatment (even though my counts now look fine), and that it ought to all get better.

I've been trying to make a point of most days (when it's not too cold and/or wet) getting out at least a little bit and walk somewhat around the neighborhood to get some exercise.  I don't want to just spend all my time at home turning into a sloth.

Back home, round 2

It's been about a half week that I've been home.  While I continue to feel somewhat better, I still wouldn't say that I feel "better" for real.  In another day or two it will be 3 months since I've felt basically normal.  It's getting to be a bit of a drag.

Sometimes I'm feeling optimistic, that this is the beginning of a turnaround, getting better for real, and that I just need to be patient.  But then I remember that's that what I was hoping the last time I was released, and 2 weeks later I was back in the hospital.  Maybe I'll feel a tiny bit safer once I pass the 2 week mark.  I've been pondering starting a "X days since a hospitalization" sign, but that just seems like kind of a bad idea.  I'm no longer quite as worried about the prospect of Dylan growing up without a father (although it still is a possibility), but I am more worried about Dylan growing up with a father who's constantly battling various sicknesses, and doesn't have the energy to be very active or do very much that's physical with him.  That would really suck.

And while Lorien continues to assume a far greater parenting role than me in the short term, the physical and emotional challenges of caring for a 2 year old are also taking a bit of a toll on me.  Dylan is overall reasonably well behaved, but he's still a 2 year old, and he seems to have an endless amount of energy.  I guess it was a bit of a shock returning to that from the hospital, as I spent far too much of my first day home snapping at him.  I'm trying to do a better job of not taking out my troubles on him.

I'm sorry if this is all coming out sounding overly depressing.  It's not really that bad; I am doing okay.  Really.

I had a followup appointment with the pulmonologist yesterday.  As expected, nothing really came of it.  There's nothing conclusive to say from either the broncoscopy, or any of the resulting cultures.  In other words, from his point of view [the lungs], he can't find anything explicit wrong with me.  Nevertheless, he did reiterate something that I believe the radiation oncologist said a while back -- that even if I've reached the point where my observable white blood counts have come back, there can be more going on that's not easily quantifiable that's contributing to me having a weakened immune system.  But that if the counts have come back, it's likely that the rest will follow, and in his opinion, I am likely to eventually get better.

Tomorrow I have a followup appointment with my oncologist, and I should get the results of the bone marrow biopsy.  I'm not expecting it to show anything either.  I'll let you all know.

It's not just me

It seems that just about everybody is getting sick lately.

http://xkcd.com/1157/

I guess sometimes wishes come true

I'm going home today. Yay.

Really not that much to report.  Nothing positive from any of the cultures, but it's too early for final results on many of them.  No news from the bone marrow biopsy yet.  Fever is still gone.  I'm feeling better, but still not great.  Congestion, stuffiness in the head, sore throat -- but it's all in the manageable zone.  I'll continue the diflucan (anti-fungal) once I get out of here, but oral instead of IV.

Anyway, I'm kinda hungry to eat some breakfast.  I've discovered the minimal breakfast that they can't screw up too horribly, and it's the same thing I order every day -- 1 hard boiled egg, and 1 bagel and cream cheese.  I'm starting to get a little sick of it, but not as sick of it as I am of the one lunch/dinner item that I keep ordering which is the same damn crappy tuna sandwich.  That was the item that we discovered at the end of Lorien's extended stay when Dylan was born just sucked, and that was a complement, b/c everything else was inedible.  I've probably ingested way too much mercury during this stay.  Oh well, focus on the short term problems....

But I digress, and breakfast awaits.  Hopefully my next post will be from home.

I want to go home

The fever is gone, and it's now been almost 24 hours since I took any tylenol (today was an experiment to make sure it wasn't just being kept down b/c of the tylenol).  I wouldn't say I'm exactly feeling great, but good enough to say that I really really really want to get the hell out of here and go home.

Not a lot of specific news to report.  I very briefly saw my doctor right before I took a shower earlier this evening (OMG, a shower, what a wonderful invention), and at the time she hadn't had a chance to look at anything to see if there was any news to report wrt all of the various cultures, or the bone marrow biopsy.  I assumed that I would get a chance to talk to her again tonite (and that part of that would be discussing when I could go home), but I should learn not to make any assumptions.

Anyway, I just wanted to give a bit of an update, even if it's kind of a non-update.

Back in the hospital again

I had plans for various blog postings, but like so many things in my life, they're currently on hold.

I'm sadly typing this from a hospital bed, once again.  I'm feeling a little better today, but yesterday was pretty miserable.  Temperature spiked at 102.2F, and my throat was so sore that I was having trouble eating and drinking, leading to malnourishment and dehydration.

The current thoughts about what's up are both a fungal infection in the mouth and throat (looking at my tongue right now is nasty -- I'll spare you a picture), and acute sinusitis.

I'm also about to get a bone marrow biopsy again (last one I had was right before treatment), which may be able to tell us more than simple blood work.  I can't say that I'm particularly looking forward to it.  The initial few days of hospitalization (when I was blogging like crazy) went by in a bit of a blur, and I don't remember all of the details (maybe I should read my blog!), but I do recall the bone marrow biopsy being particularly unpleasant.  Oh well, at least I'll get some morphine out of it.  Perhaps that will lead to more entertaining blogging again.