Gettin' Out





Many guitars at EMP

Only two blood draws per week and one meeting with the medical team.  The rest of the time we are being tourists.  Went to the Space Needle Thursday for my birthday dinner.  Today was the UW Spring game.  Tomorrow we go back to the Seattle Art Museum because they have a new exhibit called Meet me at the Center of the Earth.  Art with a Jules Verne slant, perhaps?



At Husky Stadium

Still no GvH symptoms.  It turns out they lowered her Tacrolimus dose not as the start of a taper, but just because her blood level was too high.  Heidi was getting shakey lately in her hands and arms.  As soon as they lowered the Tacrolimus dose the tremor went away.  That's good.  The official taper might start next week.  Another potential starting point for chronic GvH.

I have attached a short video of our hair growing.  Half of us have hair growing.  The half without hair think the video is dumb.  Every day we take a head photo of each of us separately and one together.  I have combined the series into a video.

I hesitate including a video, because it is very clear that nobody watched the last one on the bone marrow extraction.  I put a lot of work into sound effects for that production.  There was canned laughter after every joke and a sawing noise added during the boring.  Fortunately for you, you don't have to go to the extra work of turning on your speakers for this one.  There is no sound.



Catching up

At dinner with Bruce & Karen

It has been awhile since I last posted.  Nothing really momentous has happened; I just haven't had time.  With the rising of the blood counts (see figure 2 below) we've been getting out more.  Restaurants, museums, walks, baseball games, roller derby, visiting family & friends, etc.

I only got in 35 hours of work last week just because there wasn't enough time to work more.  I typically start work at 6am in my pajamas and quit anywhere between 5-7pm.  That usually works out to 6-10 hours of work, depending on what breaks we take during the day for clinic appointments, Mariner games, lunching out and running (me) or walking (Heidi).  Mr. Tax Man was taking much of my time the last couple weeks also.

Restaurant week didn't help matters:  150 restaurants serving special deals Sun-Thurs for two weeks.  Now that's over.  <whew>

Sorry if I caused any worry or panic with not writing.  Heidi is doing well.  Still no hair.  Still getting her daily magnesium cocktail pumped in through the port.  Still on 20-something pills every day.

Actually, she reduced a couple pills recently.  The Tacrolimus (anti-rejection drug) was reduced from 2.5 mg to 2.0 mg (still twice daily).  That's good news.  Possibly great news.  The nurse called with that direction last week and we haven't had a chance to ask the PA or doc why yet.  They had been telling us all along that they don't start discussing tapering off the Tacrolimus until Day 50, but that news came on Day 40.  Today is Day 43.

At Starbucks with Toby & Laura

I believe it is due to their respect for my fake doctoring skills.  I was telling the PA the other day about my relatives, specifically my Aunty Rejection.  She is not a sister to my Aunt Hill or Aunt Eater.  It is comments like those that make me a valuable member of the team.  I guess those jokes work better when they're spoken, not written.

Toby and Laura flew into town for birthdays and family stuff.  Yesterday, remarkably, there was not a cloud in the sky all day.  We drove out to see Alex, Cody and V.B. (virus bucket) Cale for the day.  All their neighbors were performing pagan springtime sun-worship rituals on the front lawns (weeding, mowing, playing with the kids etc.).  They must have been praying to the wrong sun god, though, for today the weatherman flipped a switch and it is back to solid overcast and drizzle.  From now until July everyone will be talking about that one day in April when the clouds parted and that bright thing in the sky shone through.  Remarkable!

As soon as Heidi is done with her afternoon cocktail (the pump is already beeping the demise of the magnesium bag), we will slog the 1-mile walk to the Experience Music Project.  It is clear from that museum that Paul Allen transitioned very quickly from awkward teen playing with SF action figures to rich nerd who could afford to buy any dumb thing he wanted.  They have a special Nirvana exhibit going on now.  I can smell the teen spirit from here.

Revenge of the 50-foot Pelvis Woman



A ban on makeup calls for extra accessorizing

Day 28 bone marrow came and went.  You're probably thinking to yourself, "self, why do I bother reading this blog when Scott can't seem to deliver the important news on time?"  Well, you can tell yourself (since we're referring to you in third person—you started it) that there is a reason.  It will be revealed at the proper time. 

Marchello called today.  He is the current attending oncologist, who Heidi describes as having a sexy italian accent.  Marchello said Heidi's T-cells are 88% donor and two other thingies were 100% donor.  There may be a technical term for thingies, but that is Heidi's translation of latin terms spoken with an Italian accent. 

It has occurred to me many times that, although we do not know the identity of the donor, she may know us.  She could have googled "heidi leukemia," found this blog and is currently getting furious over my comments.  Perhaps I should refer to her instead as the lovely and generous donor.  Which she is. 

Heidi's suspected GvH turned out to be something else.  She has a rash on her neck and eyelids, but Dr. Marchello looked at it and said it was something other than GvH.  Actually, he said something more like, "Whatsa matter, neutrino?  You got ze itchy bizness?"  Then he went off on what sounded like peppercinis.  I could be thinking about dinner.

I have a theory about Heidi's ailment.  Itchy eyelids are the clue.  Who is the last person we met with itchy eyes?  It was grandson Cale, the pinkeye king.  I contend that Heidi contracted conjunctivitis, but the broad-spectrum high-power antibiotics, antivirals and anticootie meds she takes prevent most of the symptoms.  I'm a fake doctor and that's my story.

Which brings me to the reason for not posting yesterday.  I felt like shit.  I have/had some kind of illness.  Migraine and achy everywhere, but no fever.  Nurse Denae suggested we call on an alternate caregiver, but Alex is sicker and Robin is out of town.  Being the fake doctor, I called upon my extensive training and mayoclinic.com to determine it is unlikely I have the flu.  It is still possible I have Lyme disease, polio or rocky mountain spotted fever.  I believe my symptoms also match some diseases endemic to equatorial South America.  It appears to be mostly over now, so hopefully Heidi is not at risk anymore.
There is one other possibility.  Cale the virus bucket gave me walking pneumonia.  Okay, I don't really have the symptoms of pneumonia.  I just wanted to say Cale the virus bucket.

post-Day 28 report (reporting on Day 28)

Some of you may be wondering why I didn't report about the monumental Day 28 bone marrow extraction yesterday, after the procedure was done.  Well, let me remind you that today is actually Day 28, meaning I am reporting on the Day 28 bone marrow test 30 hours afterward, but still on Day 28.  No crossing of the international date line required.  And our internet connection wasn't cooperating either.

If the blog software was cooperating, the caption on the above photo would read, "Walking to a concert at St Mark's Cathedral on Capital Hill." 

There is nothing really to report.  The extraction was routine and results won't be back until next week.  I did video record much of it.  Unfortunately Youtube won't let me post a video over 10 minutes long, so you get the abridged version here. 

Only minimal signs of GvH so far.  Something we will discuss with the nurses next week, but not serious enough to make a trip in to the clinic this weekend.

Seattle Restaurant Week starts tomorrow.  It lasts two weeks, which I believe is another calendar game being played on us.  No complaints on this game, as we are healthy enough to go out and there are many good choices within walking distance.

Day 28 Bone Marrow extraction tomorrow

The internet connection here reallllllllllllllllllllllllllllllly slows down in the evening so I'm not posting any photos.  (If anybody has any reason to be visited at the UW hospital, let me know and I'll be there in 54 Mbps!)  Nothing really to discuss until Day 28, which is actually Day 27.  The day-counting indecision continues.

Day 28, when the bone marrow is supposed to be extracted, is Saturday.  Since they don't do routine bone marrows on weekends, Heidi is getting Day 28 on Day 27.  Everyone with me so far?  I could tell you how this converts to on the UMC scale or the Julian calendar or the . . . no I couldn't.

Oh, Heidi just reminded me of news.  She went to a yoga class at the clinic today.  She described it as "not challenging."  That's right, if it ain't competitive, it ain't yoga.

Extraction videos forthcoming, maybe

Day 22 of the fourth coming

Watching flag football at Memorial Stadium

Nothing really to report today, except we're getting out a bit more.  We walked to QFC a mile away today.  Walked to Seattle Center yesterday where I played  flag football (on field turf—thank you Paul Allen!).  Then drove to Ivar's Salmon House for dinner.  Friday it poured all day.  I ran 30 minutes and met Heidi at Starbucks.  Yes, I was dripping wet and the hot latte tasted great.


Can't really remember much before that.  I think it's the chemo drugs.

Watching the boat traffic from Ivar's

Got an interesting call from Lorelei tonight.  Some of you may remember Lorelei as the spunky one from UMC in Tucson.  She said she dreamed about us.  Except Lorelei is from Minnesota, so apparently in the dream we were having a slap fight with Lutefisk.  Then one of the Lutefisk turns into her boss and says we have to infuse the Golden Gophers with brandy.  Fortunately, I being the fake nurse, was there to help so all the patients ended up happy and well-cared for except the ones who were ice-fishing, but they were infused with enough brandy on their own.  Then the Canadians stormed across the border and Jan Brewer complained.  Did I get that right, Lorelei?  That one was for you.

Only one routine meeting with the medical team this week.  Only two blood draws also.  Then Friday is the Day 28 bone marrow sample.  I'll get video and lots of stills.  Maybe even some interviews with the techs.  It will actually be only Day 27, but they don't do weekends so we get in a day early.  With this test they will of course be looking for leukemic-looking cells.  I think they can also tell the ratio of donor bone marrow to original host bone marrow.  So maybe we'll have a new report Friday night about Heidi's degree of chimerism.