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.

Wait and see

Not much news from my oncologist appointment today.  The hospital discharge papers summarize what my condition was as simply "atypical pneumonia".  No cultures have come back positive, so there's really nothing specific to point out as being wrong with me currently.  My auto neutrophil count is almost normal, just a little bit low.  It's lower than it was when I was discharged, but that was only a little bit after I stopped taking drugs to boost it, so that's not that worrisome.  We've decided to take a wait and see approach.  I'm going to resume weekly blood work and weekly oncology visits.  If things get worse, or don't continue to slowly get better, we'll decide where to go from there.  (Possibilities include having my next PET/CT scan early -- after 3 months rather than 6; or having another bone marrow biopsy -- the last one was before treatment.)  But for now we're not going to do anything else.

One bit of good news is that apparently neutropenia even months after my particular type of chemo for my particular type of cancer (late-onset neutropenia, or LON), is not uncommon.

I do continue to feel more functional most of the time.  One weird thing is that I seem to be very sensitive to getting enough to eat throughout the day.  If enough time goes by and I haven't eaten enough, I get really really tired.  Not hungry, just fatigued.  So I really need to keep this in mind, and don't necessarily rely on three meals.  I had been like this at some earlier point in treatment (I don't remember when offhand).  I'm not sure why it's returned.

I'm going to try tomorrow with another yoga class.  I have more reason to believe that this one will actually happen.  We did a little mini practice at home last night.  Very gentle, but I am a little sore from it regardless.

The Horrible Hospital

[No, it's really not that horrible -- just a Lemony Snicket reference.]

Some more catching up to do.  A bunch has happened since my last post, and not all of it good.

I got the chest CT scan.  I couldn't really interpret the results very well myself.  There was nothing that stood out as being obviously either very bad or very good.  The next step was to schedule an appointment with a pulmonologist.  Easier said than done.  I'll spare you all of the details, but the experience (including all records of my referral mysteriously disappearing, only to eventually reappear) basically only served to further convince me how screwed up the medical system in this country is.  And still didn't result in my actually getting an appointment.

On Saturday night, my friend Chip (that I know from way back at Cornell), who was in town from Seattle for a conference, stopped by to visit, along with his 3+ year old son Matthew.  Matthew is a little quieter than Dylan, but he eventually got comfortable with Dylan.  Even when Dylan decided that running around totally naked was the appropriate attire for the evening.

Soon afterwards, however, I started to feel not very good, and decided to head to bed early.  Or at least try.  After many hours had passed, and I hadn't managed to sleep at all, but I was totally feeling like crap and shivering despite being way bundled up, I took my temperature, and it was up to 101.8F.  I somewhat hesitated to call the urgent care line, because I was worried they were going to tell me to go to the ER.  I did end up calling, and discussed things a bit with the doctor on call, and we agreed that I didn't need to go to the ER, but that I should go to the cancer center as soon as I woke up in the morning.  And that it was okay for me to take some Ambien to try to get some sleep.

I did manage to get some Ambien-induced sleep, and went to the cancer center in the morning.  My temperature had already dropped somewhat, but was still high.  They gave me IV antibiotics, as well as some fluids, and I started to feel somewhat better, and my temperature continued to slowly fall.  I figured this would be the end of it, and they'd send me home with some oral antibiotics and some instructions to get some rest.  The problem was that my bloodwork showed that my auto neutrophil (a type of white blood cell) count was low, and they were concerned about infection, and wanted me admitted to the hospital.  I thought it was probably overreacting a little bit, but given the circumstances, I decided to err on the side of caution and go along with it.

So on Sunday evening, I found myself back in the same hospital in Oakland that I was in back in February/March when I started treatment.  I didn't blog about this at all at the time, because that Monday morning my parents were leaving for a vacation to celebrate their 50th wedding anniversary (12/23/62), and I wanted them to be able to enjoy their vacation and not have to worry about me.

The stay in the hospital was a little annoying, and fairly boring.  Many of my same complaints from before (crappy food; inability to get a good night's sleep; communication problems; an extreme culture of waste -- at one point they used a *disposable* oximeter) were still valid.  And I really didn't think that I needed to be there.  And while I was neutropenic, they had me on this restricted diet (e.g. no fresh fruits or veggies), which didn't help my disposition.  At least Lorien was able to visit me every day.  And bring me some edible food.

The one good thing about being in the hospital was that all of a sudden it was much easier to get access to specialists.  So I met with a couple of pulmonologists, had a broncoscopy done (where they peek inside your lungs, and take a sample), met with an infectious disease guy, and had a whole bunch of blood samples taken and cultures done.

My fever was gone by Monday morning, and my white blood count rebounded fairly quickly as well.  My fever did briefly return on Tuesday night after the broncoscopy, although apparently that's a common side effect (not sure if it's from the procedure, the drugs, or both).  Although it would have been nice if they would have told me that *before* it happened.

Having returned pretty much to where I was the week before, I was released from the hospital on Thursday morning.  Which means (if I believe Lorien's memory), that it was actually 1 night longer than my original stay at the start of treatment.  And I still didn't really have a very good resolution, either with respect to my physical condition, or an understanding of what had been going on.  I was still coughing, and coughing up mucus, and having headaches, and feeling in general pretty weary.  And there was no explanation as to why my white blood count had nosedived, when it had been fine just a week before.

At the time of being released, all of the cultures that were completed had come back negative.  And the broncoscopy didn't really show anything conclusive either.  There were still some cultures outstanding, and I assume that if there's anything noteworthy I'll find that out at followup appointments if not sooner.  I have an appointment tomorrow with my oncologist, and then one next week with one of the pulmonologists.  But I'm guessing at this point that they're probably not going to find anything in particular wrong with me.  I need to discuss with my oncologist what the plan is if that's the case.

The good news is that, in the almost a week since being released, I think that I am starting to very gradually get better.  I'm still coughing somewhat, but not nearly as often as I was before.  And I'm still sometimes congested and coughing up mucus, but again it's way less than it was before.  I'm no longer going through boxes of tissues at such a crazy rate.  I have a sore throat in the morning, but it's mostly gone a little after getting up.  And the headaches are relatively infrequent, and not particularly severe.  Mostly at this point they might be correlating with me just not drinking enough fluids.  And I'm trying to mostly stay off the acetaminophen.

Perhaps my ENT was right after all.  Her theory was that I don't really have anything in particular, just inflammation and related side effects from the radiation, and this will all gradually resolve itself over a period of months.  Although I suspect that the fever was the result of some infection, and that the antibiotics did take care of that.

Even my overall activity level is improving somewhat.  I still feel far from normal (and am not yet up for getting back on my bike; and thoughts of snowboarding this season are somewhat on hold), but I have at least decided that I want to resume yoga again, at least restorative yoga for now.  I even picked a class this afternoon that I decided to go to -- only to show up and find nobody there.  Canceled for the holidays, perhaps?  I was kind of annoyed, since the web page only explicitly noted that *next* week was canceled, leading me to assume that this week was on.

So that's where I am now.  I've decided to take this week off from work as well, trying to rest up a bit more.  My tentative plan is to return to work half time after the New Year, but as always, everything is subject to change.  Things are far from great, but I'm holding out hope that I'm starting to turn a corner towards recovery.  And that 2013 will ultimately be far better than 2012 was.

Maybe getting a little better?

Yet again another instance of a comment egging me on to follow up...

My oncologist said that if I didn't think the antibiotics had made a significant difference within a week, to get back to her.  I didn't, so I did.  My oncologist wasn't in on Friday, but I went in and was seen by one of her associates.  She took a chest x-ray to make sure that nothing had gotten noticeably worse in the couple of weeks since the scan.  It hadn't.  She also had me put on a pulse oximeter and walk up a few flights of stairs.  I'd been complaining about feeling pretty worn out after even mild exertion, and she wanted to make sure that my SpO2 level wasn't dropping dangerously.  It didn't -- it actually went up.  My pulse continues to be way higher than before I got sick (my resting pulse rate used to be often in the 60s, and sometimes even down in the 50s), but that's nothing new -- and hopefully something that will improve over time as I get better and have the opportunity to get back in shape.

I'm scheduled tomorrow morning for another scan.  This is a CT around the lungs, at higher resolution than the CT part of the full-body PET/CT.

After that, the next step is going to a pulmonologist.  I'm waiting to hear back from the doctor about scheduling an appointment; hopefully that will happen tomorrow.

As the additional days have been progressing, however, I'm starting to question whether this is actually worth it.  I made the decision last Thursday that I wasn't getting any better.  And it's hard to say precisely, because things can fluctuate from day to day, and hour to hour, but I do now feel that maybe I am gradually starting to feel a little better.  I'm still a little worn out, but I'm reasonably functional.  And I still have headaches often, but they're pretty mild.  And I've still got mucus and am coughing, but it's not nearly as bad as it was in early November.  Maybe this is something that will just gradually get better over time, or maybe the antibiotics really did resolve some infection.

Nevertheless, I've decided to follow through on this.  One of the problems with last fall, before I was diagnosed, was that I wasn't as alarmed about my health as perhaps I should have been, partly because I kept having ups and downs.  Things would be really bad, but then I'd start to feel a bit better, and I'd get hopeful and stop worrying so much.  If all I lose is a little bit of time and money to go see a specialist and have him tell me that nothing serious is wrong, at least I'll have that knowledge.

In the meantime, I'm continuing to try to get rest when I can, and I'm continuing to work approximately half time.  My brother Steve briefly passed through on Sunday, on his way to a business meeting the next day in LA.  And between lighting candles, eating chocolate gelt, and getting presents, Dylan is enjoying Chanukah.

Lighting candles on the second night of Chanukah
(Photo courtesy of Steve Fromm)

Dylan enjoying being in the toddler cage (aka a Hoberman sphere), a gift from Rich's parents.
The airplane (Dylan's latest obsession is planes, instead of boats) in the foreground is a gift from Lorien's parents.

Two steps forward, one step back

[Or have I already used that title before... ?]

I guess I never followed up on the ENT visit.  Sorry.

She didn't think that there was much going on that was a big deal.  Her theory is that the radiation has irritated and inflamed my trachea, and that that's a reasonable side effect to expect.  Also, sometime during the chemo treatment (maybe in late Spring or early Summer?  I forget now) I was having an issue with my vocal chords.  That has apparently improved somewhat, but it's not totally better, and that's exacerbating the situation with the trachea.  And since the whole ear/nose/throat area is connected, the bottom line is that that's kind of messed up and irritated and dried out and that's what's causing my coughing and congestion and sinus pressure and headaches, etc.  She told me to start taking an expectorant, to get off the Afrin, and to keep using saline spray and drink plenty of fluids.

At least that's her theory.  But I'm starting to wonder if this is another example of a specialist not seeing things outside of what she considers her scope.  Namely, that something is going on in my lungs.

Earlier this week I had my first scan since radiation.  (The previous scan, in August, was in between chemo and radiation.)  The good news is that there's no sign of the cancer returning.  But other parts of the scan confirm the fact that I haven't been feeling all that well.

My oncologist thinks I probably have some kind of infection.  The current plan is to take a round of antibiotics, and if things don't start to improve within a week, then go to a specialist to investigate things further.

It's kind of frustrating.  I was feeling so good for such a short amount of time, and it's now been 7 weeks that I've been feeling kind of sick in one way or another.  I suspect that there may actual be several things going on, and maybe catching a cold from Dylan (and/or another one from someone else on the plane flight home) may have been part of it.  And Dylan caught another cold yesterday -- I'm really hoping that I don't catch that from him.  And/or that this winter is just one bout of illness after another.

So I have been working somewhat, and it felt good to get something productive done.  But I'm not really sure where that stands in the near term.  I didn't go into the office today, and I might not go back at all until I'm feeling noticeably better.  I think it's really important right now for me to try to get a decent amount of rest and not push things too hard too fast.

In a somewhat brighter note, my brother Larry came out from Indiana for Thanksgiving with his wife Galit and their 7 month old son Ruben.  Although I was coughing way more than I would have liked during their visit, I was as a whole not feeling all that bad.  We had a nice holiday dinner, Ruben and Dylan enjoyed being with each other, and we had a couple of expeditions out -- both to one of Dylan's favorite destinations (Little Farm in Tilden Park), and what seems like the must see destination for everyone that visits us from out of town (Muir Woods).

That's about it.  I'm impatient for a return to normalcy, and things could be better, but from the long term perspective, things aren't too bad.  And I had a chocolate cake baking in the oven while I typed most of this, and things can only get so bad when there's chocolate cake around.

Dylan (and Nemo) with the butternut squash that gave its life for our Thanksgiving soup

Lorien reads to Ruben and Dylan

Ruben on a swing for the first time!

Dylan happily mimicking Ruben

Galit, Ruben, and Larry at Muir Woods

Lorien and Dylan gazing up at the redwoods at Muir Woods

Back at work

I did both.  I went back to work today, and I decided to make a doctor appointment as well with an ENT (for Thursday).

Work was kind of weird.  I wonder how long it will take me to ramp back up to actually getting anything productive done.  Today was mostly chatting with people, and spending time on inane things like finding my desk chair, trying to get my desktop in a decent shape again (things that used to work no longer do), and rearranging furniture.  And then somehow right as I was thinking of taking off a bit early (I didn't really feel that great most of the day) I ended up finding myself in a meeting (ugh) that ended up going on for an hour and a half (double ugh).

Sniff sniff, cough cough

I'm sitting here enjoying our warm and cozy fire as I type this, on what might be my last night before returning to work after an 8 to 9 month hiatus.  Or it might not.

Since my last update, I did return home from the east coast following Hurricane Sandy.  We lost power at my parents' house, and my original flight was canceled, but power came back about 36 hours later, and Dylan and I flew home a few days later, on Halloween.  Friends in southern Manhattan weren't quite as lucky -- I don't think they got power back until the weekend.  My brother Steve and his family in New Jersey were far worse off -- they didn't finally get power back until I believe a day or two ago.

I was feeling mildly under the weather the entire time I was out east, but it wasn't all that bad, and mostly I felt functional.  Things sadly took a bit of a turn for the worse upon returning home.  Perhaps besides just fighting a cold, I picked up another one on the flight home.  It was bad enough that I decided not to return to work on the first of November, as I had originally planned.  I used a regularly scheduled appointment with my radiation oncologist as an avenue for discussing my current situation.  He thinks that I've just picked up some virus, and because my immune system is weakened, it will take a while to recover from it.  And I can expect that I may get more of this throughout the winter, as my immune system will be weakened somewhat for about 6 months to a year following treatment.  Oh boy, what fun.

It's frustrating.  I don't feel nearly as bad as I did with the worst of the side effects from treatment, but at least with treatment, how I was feeling was somewhat expected and understood, and even though it got worse as the cycles went on, I could at least generally anticipate what was going to happen and when I was going to feel better.  Here there's just this kind of wide open unknown.

I know, I'm probably complaining a little too much.  After all, it's just a damn cold.  (Lorien has given me some crap about my man cold.)  But I really want it to be gone.  It was so awesome to feel good and energetic for a few days once the radiation side effects were gone.  I was so elated.  I even had this anecdote that I was going to blog about comparing it something that happened my first time at Burning Man.  (I'll save that for when I feel better again.)  But it lasted less than a week, and I'm longing for that feeling again.

So I'm trying to decide what exactly my criteria ought to be for returning to work.  I'm kind of anxious for life to return somewhat to normal.  But I worry that if my criteria is to wait until I fully feel 100% better, that could be a very long time.  Lorien thinks maybe I should wait until I don't feel I need ibuprofen any more, although as long as I'm popping pills in sufficient quantity right now, I'm feeling not too bad.  (That, along with Afrin twice a day, plus lots of saline nasal spray, and lots and lots of tissues, is what's keeping me going.)  I think I bottomed out in terms of how I feel a few days back (I think it was Wednesday), and now I do feel reasonably functional again.  (Functional enough that I baked an apple pie yesterday.)  My tentative decision had been to make tomorrow a decision point -- either I go back to work, or I make another doctor appointment.  Although I'm considering the possibility of doing both.

I suppose the fire may not be the best idea given my congestion, but it is so warm and cozy on a cold night, and it had been about a year and a half since we had last had a fire.  (On account of me being sick all last winter.)

I don't have too much to report other than griping about my cold.  I haven't done all that much recreationally since returning, other than hanging out with Dylan, on account of how I'm feeling.  It'll be sad to have less time with Dylan once I do return to work.

I mentioned that we flew back on Halloween, which meant that Dylan did indeed miss Halloween.  We gave him his Nemo costume a few days later for the heck of it, and he absolutely loves it.  It's becoming a cross between a costume, a stuffed animal, and a pillow (he's sleeping on it right now).  He has worn it a few times out of the house (going down to the market, to a friend's birthday party, and to music class) -- hopefully that won't become too much of an obsession, and it can mostly stay as an indoor thing.  But he sure is adorable when he wears it.

Nemo in his room

Nemo on his way to the market

That's about it.  I'll keep y'all posted on whether or not I go back to work.