Approaching Day 70

On the ferry Puyallup motoring to Bainbridge

Can't write too much.  We're staying on Bainbridge Island for two days and I forgot my computer charger.  So I have to type on Heidi's inferior QWERTY keyboard to try to save my battery.  Yes, we're gonna be roughing it the next 2 days. 

Things are still going very well.  Heidi still gets magnesium IV every day.  Still taking 20-something pills every day.  Once a week we meet the medical team, they ask if Heidi has any new symptoms and she replies with her usual, "no, I feel great."  The next week we repeat. 

Teresa & Heidi at 13 Coins

I suggested to the team that we should try taking our relationship to long-distance.  Perhaps we could continue over email or Skype.  My fake doctor credentials obviously are becoming highly respected because they all simultaneously got this look of relief and satisfaction. 

At the Maritime Festival

The conversation took a few turns from there, but ended with our exit criteria being defined.  Heidi has to repeat all the tests she initially took at the beginning.  Another bone marrow extraction, because 9 is just not enough.  Let me know what medical test videos you want me to post.  Youtube just can't seem to get enough of those.  The original hair cutting video has been viewed over 4000 times. 

So she endures all the bunch of tests around Day 80.  Actually, I suggested starting before Day 80, to be completed around Day 80.  Remarkably, there was universal agreement to that idea.

So Heidi starts repeating tests starting Day 75.  Then she is done around Day 80.  Then we split.

Laurie, Shawn, Heidi and Scott at the Waterfront

Something like that, anyway.  The details and scheduling still need to be done.  But let's just say we found the achilles heel to depart from these hippocrateans.  Sorry to get all Greek on ya. 
The end of our vacation is near.  So we take a little vacation to celebrate.  To an island.  You get the picture.

Day 60 almost

At the South end of Lake Union

Tomorrow is Day 60.  All is fine at apartment 311 these days.  Still battling magnesium loss with 8 magnesium oxide pills + 500 ml of (currently) 48 meq magnesium sulfate daily.

Heidi went out for her first run since the transplant.  She's been walking a lot every day, but today was the first time running.  Sort of running.  Well, she had running clothes on, anyway.  That counts.

Riding the SLUT with Kylah

The large pelvis woman who was kind enough to donate her valuable bone marrow obviously had some good stuff.  Heidi's immune system is almost all donor now and it's settling in real nice.  No fevers, no rejection issues, no real problems.  We call that good stuff.

I'm still concerned that some day the large pelvis donor will read this and conclude that we are ungrateful and undeserving of her generosity because I refer to her as the large pelvis donor.  Somehow I need to make it clear that past Scott who wrote this diatribe was the ungrateful one.  Future Scott, who exists when this is being read way in the future is not like this at all. 

Hangin' with the grands

Perhaps it would be more convincing if I stopped referring to her as the large pelvis donor.  So from now I will refer to her as Marcia, because she is like a big sister—an old-fashioned Brady Bunch kind of big sister.  Future Scott calls her Marcia and says nothing about pelvis size.  Future Scott only talks about Marcia's superior immune system.  Future Scott sounds like a cool guy.  I gotta try to be like him.

Return of the hair

Heidi and Robin

The hair is growing!  You can't tell in the photo at the left.  You can't actually tell with the naked eye.  Now that I think about it, they are still too short to be detectable with an electron microscope nuclear resonance hair detector.  But Heidi says her hair is coming back.  So it's coming back.

hammerin' away

There is some bad news associated with hair growth.  During the meeting this morning with her medical team, Heidi mentioned that she had to resume plucking her eyebrows.  She was so excited, until a hush fell over the room.  Nurse Diane shook her head and said in her best 1st-Grade Teacher voice, "Heidi, you can't pluck hair out.  The risk of folliclitus is too great."  The wave of excitement washed out of her face like it went through the heavy duty cycle of a Sears side-by-side top loading washer.  Not that it made any difference.  The aestheticially-inclined among you can rest assured that Heidi doesn't really follow the rules.

The long-awaited previously-discussed Tacrolimus taper has started. . .  this coming weekend.  The anti-rejection drug, formerly called FK506 (which always makes me think of ED209 from Robocop), will be reduced over the next 5 months.  She was taking 2.5 mg/day last week, but will be reducing 0.5 mg/day every month.  By September she should be off it completely.  The PA said GvH could arise at this point, but probably wouldn't in Heidi because she hasn't shown any symptoms yet. 

Did everybody notice Day 50 came and went.  We're past halfway.  If we were hiking up a mountain we'd already be on the way down.  And everybody knows walking down is easier than hiking up.  If we were playing a football game, we'd already be past the halftime show (which nobody likes) and the halftime commentators back in the studio (which nobody likes).  We'd be riding the high from the coach's locker room Gipper speech.  If this were a hockey game . . . damn hockey and their 3 period-games.  That's why hockey will never be popular in this country; hockey analogies just don't work.

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.