B is the word.

February 22, 2012

C Word, Family, Sports

Comments Off on Thursday to Thursday

In my previous gem-like report, I mentioned that I was seeing my oncologist again last Thursday Feb 16 for more elucidation of my blood production troubles. Indeed that meeting happened, but the results are a little hard to describe (hence my delay in describing them).

One notable factoid is that my blood showed an “extremely high” level of something called ferritin, which as the name implies is involved with storing and supplying iron to the system. High ferritin levels are associated with a variety of conditions as unpleasant as they are unpronounceable. So this is a matter of some concern, on top of my continuing (though apparently improving) pancytopenia.

There is also some evidence, from the biopsy cytogenetics, of something known as 5q-minus syndrome, which is a blessedly short name but even more mysterious it seems.

In the past week lots and lots of blood has been drawn:

for a series of tests of apparently increasing sophistication and obscurity. Some of it has been sent off to remote labs; it’s hard to imagine a test is so unusual that Fred Hutch can’t do it, but there you have it.

I’m meeting with another doc Thursday (Feb 23), hoping that more mysteries will be revealed from all that testing, though perhaps not looking forward to the recommendations for treatment. Eve is hoping to attend the meeting via Skype from Silver Star where she and Julia and Oliver are enjoying the excellent snow. Should be fun.

On the plus side I’m feeling pretty good this week. Today I finally got a haircut, so sadly all the Trump bronze is gone. Maybe I’ll be in a position to choose a new color after tomorrow. I also rode my bike today for the first time in quite a while, just a few miles on the Burke-Gilman Trail, but it felt great, except for the uphill parts.




February 24, 2011

C Word, Miscellaneous, Sports

Comments Off on Next to last checklist item

Several months ago I posted a little list of things to forward to.  This week I checked off another one:  skiing with the family at Silver Star ski resort, near Vernon in central British Columbia.

Coming to Silver Star has been our family’s annual treat since 2002.  I can always remember which year it was because we were in a tiny condo and spent all our non-ski time watching the Winter Olympics, which were rather popular in Canada despite being held in the United States that year.  As I recall we mostly watched a channel dedicated to curling.  (Women’s curling:  sexiest sport ever.)

We have come up every year since then, except 2008 and 2010, when some health stuff got in the way.  Originally we came here because Silver Star has extensive Nordic trails as well as its famous downhill areas.  Eve and I wanted to get the kids into cross-country skiing while maybe fooling around a little with the other kind.  Then Eve discovered the new-fangled shaped skis (she hadn’t skied downhill since she was a teenager) and the game was up.  We still bring our XC gear, but some years it doesn’t get used at all.  Oh well.

Why Silver Star is such a big deal for us is hard to say, since we’re not a big skiing family.  Some years our week-long trip here is the only skiing we do.  It’s the tradition.  Also, I should mention, Bugaboo’s Bakery and Cafe, which makes truly amazing pastries (the strudel alone is worth the trip).  Julia says Silver Star is her favorite place in the world.

Here’s this year’s family picture on the Silver Queen lift:

The Silver Queen

A good time was had by all, though Eve’s knee was hurting from a soccer injury (my knees always hurt), so she had to relinquish the title of Best Skier in the Family to Annika, who went off by herself to do the black diamond runs in Putnam Creek.  (Julia is a boarder so in a different category.)  As always I was The Slow Guy.

The major memory this time will be that it has been Damn Cold.  Today the high was maybe -15C, which is 5F.  After being cold yesterday when it was only slightly warmer, today (our last day) I did pretty well with 5 layers on top and three on the bottom, plus chemical hand and toe warmers.  Even so I was done by 1:30PM or so.  As I write this the outside thermometer says it’s -22C, about -8F.  In the hot tub this evening while my body was fine in the 40C water my head felt like I was going up the lift to the top of the mountain.  Corporal dissonance.

Also notable this year has been the absence of Americans, presumably due to the poor exchange rate.  Between that, and the economy in general, and the weather, the runs and lifts seemed deserted.  Nice for us, but a little disconcerting.

I really didn’t know how I would do skiing-wise, given this is Day 274 and I suppose I am still recovering.  I guess most stem-cell transplant patients don’t go skiing for a week during their first year.  But hey, we have our traditions.  I felt pretty good for the most part, though I didn’t attempt some challenging runs I had done (aka survived) in previous years.  My legs became very tired quickly, more effects from all that hospital time last year I suppose.  But hey, it was fun.

This may be the last year for a while, since Annika is a senior so most likely will be in college somewhere a year from now.  This will give me time to get my legs in shape by 2018 or so, the next chance for the four of us to make the trip.

Tomorrow we head back home (a 9-hour drive), and it will be time to get started on that backyard wood-fired oven.

World Cup, the Last Hurrah

Has it only been a week since the World Cup finally ended, and we all have had to start speaking español (or is it espanyol?).  It seems like ancient history now.  Amazingly there’s already another World Cup underway, albeit one with rather less fanfare, but in this one the USA is actually the favorite.  Go, Sydney.

The post-tournament rankings of world senior men’s teams are out.  Hmm, mostly corresponds to the tournament outcomes, Spain on top, Uruguay zooming up, USA up a little, but what’s this?  England gained 57 points, and moved up a notch?  This would be the England team that got knocked out 4-1 in the round of 16, whose performance was uniformly described by its national media as “humiliating”?  Did these rankers watch the same tournament as everyone else?  Did they credit Lampard for that goal, and figure that changed everything?  Is this surreptitious support for the England 2018 bid to host the Finals?  Feh.

A Busy Day

The day of the Final (Sunday July 11, Day 46) was a busy one for me.  I started the day by making bagels, boiling and baking dough circles that I had prepared and refrigerated the night before.  Unlike every other food blogger, I am unashamed to say that these didn’t turn out as well as I’d hoped, or as they had in previous attempts.  It seems I put in too much yeast, so they over-rose a bit in the pan, then really puffed up during the boil, only to flatten when baked.  They still tasted fine, but the always-dangerous act of bagel slicing becomes even more fraught with peril when trying to slice a half-inch-thick ring.  And they weren’t dense enough:  a bagel is one case where you don’t want good hole structure.

After the game, energized by a contest between two nations known perhaps as much for their cyclists as their footballers, I went for a short ride on my real bike, the first since some time in April.  I only went four miles or so round-trip (to the Metropolitan Market and back, via the Burke-Gilman Trail), but it felt great.  My legs and lungs were certainly weaker than they used to be, but I was able to chug up the hill back to our house just fine.  Oddly my seat felt too high; maybe my legs have shrunk due to all the lying around?

After that I even had the energy to take the dog for a walk in Ravenna Park.  All in all a good day, though I was completely exhausted by the end.

A Torpid Week

Perhaps that was all a little too much, as exhaustion has been the theme for the week since then.  By Monday I was feeling achy and a little chilled.  Tuesday I spent most of the day on the couch, and Wednesday was worse.  We went to the clinic, where they did blood cultures and prescribed some antibiotics.  Since then things have been up and down, but mostly down.  Yesterday, Saturday, I barely got off the couch, and didn’t leave the house.

Today I didn’t get out of bed until noon (and that was just for the Sounders game on TV).  Taking the dog for a walk would be torture.  The idea of getting on my bike seems like it’s from an alternate reality.  Even in the searing heat of the Seattle summer (high today 69 degrees F) I am freezing, wearing my sweater as I type here on the couch.  Eve made a call to the clinic today, where the advice was just to hang in there, since “it’s more normal to feel lousy than to feel good during recovery”.  I spose it is.

Despite all that I was able to do a bit of work from home, including sending one satisfying blistering email rant.  For those of us who live to rant, this is where we get our energy.

In Praise of Quality Consumer Goods

I have mentioned our couch quite a bit.  Here it is.  (This Very Laptop On Which I Type is on the side.)

For a long time I have been very fond of this couch, and my recent experience has only deepened this affection.  When we moved from San Francisco 11 years ago we sold a lot of our furniture, and since our Seattle house is twice the size of our SF one we had a lot of room to fill up.  We bought the odd chair and bookshelf, and I was able to indulge my taste for Stickley, which is popular among the Seattle bungalow crowd (though our house is not one of those, unfortunately).  Stickley isn’t known for couches, but this one was very impressive, mostly for the quality of its cushions, which have a remarkable balance between firmness and cushiness, and a general feeling of solidity.  It was rather too expensive for us, but we decided what the hell, a good couch is a good thing.  It has proven to be a fine piece of furniture, remaining as comfortable and supportive today as it was 11 years ago, after many many hours of bearing the weight of family and friends, mostly mine.  We bought a lot of other things at that time:  rugs and appliances, beds and cabinets.  The couch, to me, has been the most consistently satisfying of them all.

So if any of you gentle readers out there, especially you younger ones, are considering a couch purchase, let me encourage investing in a good one.  I’m sure there are many fine manufacturers.


On Thursday I was scheduled to have my Hickman catheter removed.  Despite my being sick we went ahead with it, since the clinic folks figure that the line is the most likely source of infection, so better to pull it out.  So out it came, after having been a part of me for 73 days.  (Attentive readers will recall that this was my third central line.)  The surgeon, Dr. Petty, who had installed it, yanked it out and held it up for me to view, “kind of like a prize trout”.  I decided not to take it home.  A couple of days later I celebrated by taking a long hot bath, one of the main things one can’t do with a Hickman in place.

Report from the Far East

On Saturday morning Eve and I were awakened at 0630 by the phone.  Who could be calling?  It was our daughter Annika, calling from Luang Prabang, Laos.  I had sent her an email saying I was feeling sick and she called to make sure I wasn’t back in the hospital.  Um, Laos?  Yes, she’s in Laos on a trip with Rustic Pathways, which does adventure/service/educational trips for teens to all kinds of remarkable places.  The trip Annika is on is photo-oriented, meaning the centerpiece is going to a village and taking lots of daily-life pictures, which will somehow be transformed into books for the villagers to enjoy.  The trip was supposed to be in northern Thailand, but had to be re-routed due to the political troubles there.  So they spent about 10 days in Cambodia (Angkor Wat etc) and will do a week or so in Laos before returning home later this week.  Hmm, what did I do during the summer when I was 16?  I don’t remember.  I guess she will.

She said she is doing fine, eating well (we had our doubts, as she’s something of a picky eater at home), sunburned, taking lots of pictures, and has lots of presents for us.  What a kid.

June 9, 2010

C Word, Sports

1 comment

The other day my boss Nathan came by to visit and to deliver some goodies.  One was a nice card from my office colleagues (“hey, bring some that morphine back with you”), though there were some ominous “there will be some things for you to look at when you get back” comments on the card too.  I am mostly not thinking about work, except for doing the occasional conference call …

Nathan also brought:

European Identity Award 2010

This is an award our team at work received from the European Identity Conference.  It’s lucite and about 12 inches tall.  It’s is a little odd to receive it because we are still far from finished with this work, and we’re not even sure we’re really going to use it.  But the award looks nice. And I have to say, it’s rather appropriate, since Nathan has more of a European identity than any other American I know.  8)

The award is perched by the sink next to my medicines and gets lots of oohs and aahs from the hospital staff.  This leads to discussion of the work I do for the UW worrying about how people log in to things, which inevitably leads to complaints about how we make them change their passwords so often.  “Actually that’s UW Medicine IT making you do that, not us”, I say, but it’s all just stupid IT oppression to them.

Lastly Nathan brought by a copy of a 100-page special edition World Cup 2010 review from the Daily Express in the UK.  This is a fascinating read in itself, and also serves as a banner to wave at the docs when they forget my agenda.  From it I have also learned a couple of new Britishisms:

  • “gridiron” to refer to American football.  “The American public may continue to prefer their ‘own’ sports like baseball and gridiron …”  I suppose this is the equivalent of the use of “soccer” in the US to refer to what everyone else calls “football”.  They recognize the term, but would never use it.
  • “tie” meaning “game”.  “Trailing Costa Rica by two points, Honduras needed to win their final tie away to eternal rivals El Salvador.”  Since “draw” is used to refer to a game ending with both sides having the same score (i.e., a tie) I guess this isn’t confusing to them.  Oy.

Or are these just Daily-Express-isms?

June 8, 2010

C Word, Sports


For those following the numbers (and who isn’t):  total white count 530 (up from 340), neutrophils 210 (up from 140).  The docs remind me that these are just counts found in the blood, and many of my new new neutrophils are hard at work repairing the damage to my digestive tract, bless their little cellular polymorphonuclei, so not visible.  Their observed numbers may shoot up once that work has progressed.

Today I was largely focused on eating, since getting off the IV nutrition will likely be the gating factor in getting out of here.  Cheerios for breakfast, chicken soup for lunch, and the classic bland hot turkey sandwich with mashed potatoes for dinner.  Didn’t eat all that much, but it felt good, I haven’t been nauseous, and it actually tasted vaguely normal (considering it’s hospital food; it’s sort of what you’d expect from an earnest friend who’s trying hard to be healthy but just doesn’t know how to cook).

I am probably pushing the eating a little too hard, but I do have my deadline.  It will be a close call to get home by Thursday.  The mucus situation is much better, though still not gone completely.  I’m hoping the eating will help it move along.  My mouth is just about normal (for me, that is).

Eve came by and we watched Spain dismantle Poland in a friendly.  OK, I give.  I’m now a believer in Spain.  If Torres is willing to change his hairstyle for the team, that says it all.  Nani had been one of my main reasons for liking Portugal, and now he’s out.  This may give Côte d’Ivoire a shot at making it out of the Group of Death, although if they do they will almost certainly be up against Spain next.

And indeed as Lucy suggests the other big question is whether an African team will excel on African soil.  Looks to me like it has to be Nigeria, which I think has a legit shot at the quarter-finals.

Time to take another walk.

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