Vacating plans, they are a-progressing



With Michelle at The Pink Door restaurant

Let's see, what's happened since my last post?  Great news!  We're getting kicked outta here.  The magic day is June 6.

We started bothering them about scheduling the last series of tests.  And by bothering them, ya gotta understand our motivation techniques.  What I've found works really well is to stand right next to the person and repeat over and over, "hey, did you schedule those tests yet?"  I keep repeating that without stopping.  Some people are more resiliant and I have to poke them in the shoulder while repeating the mantra, "hey, did you schedule those tests yet?"  It's very persuasive.

Scott, Heidi, Meagan, Jan, Cameron and Scott
(one is Great Scott and one is Lesser Scott)

The result of all that persistence manifested on Monday when Heidi went in for her routine blood test at 9am.  She found out then they scheduled a bone marrow extraction that morning.  Unfortunately I wasn't there.  Double-unfortunate because the doc did the procedure instead of one of the usual nurses.  Double-unusual because he decided to extract from her sternum instead of the pelvis.  How double-double unlucky is it for all of you that I wasn't there to video record?  To be exact, he drilled in to the Manubrium.  Look that one up in your Funk n' Wagnells.  For those of you who don't need to look it up (David, I'm typing at you), you can direct your spelling corrections to Heidi because she is the one who informed me about this chest part that I was previously unaware.  And to think that there was a part of Heidi's chest I was not aware of.  hmmmm. . .

How cool is an Acrobatic show during dinner?

Which now makes me think about how I can't wait for the first opportunity to say something like, "check out the manubrial confines on that chick!"  Well, perhaps I won't say it out loud.  I won't have to if I'm walking with any of you, because you'll be thinking it along with me.

Where was I?  Focus.  Ah, exit, stage-south.

Tuesday was the exit Pulmonary test.  This is the one Heidi had told me about from the beginning where the big bad nurse uses her persuasiveness to measure how much air you can breathe in and how hard you can expell your lungs.  Heidi said it was really funny how much they yell at you during the procedure.  Just as an aside, everyone should appreciate here how there are many flavors of persuasive people here and I am but one of many cogs in the inspirational machine.  <poke, poke> hey, are you still reading?  <poke> hey, I'm talking to you.

Double fortunate for you that I was able to attend the pulmonary test and video record the entire thing.  Double bummer that the usual pulmonary test nurse, the one with extra hefty persuasiveness, who really knows how to inspire you to grind out a breath, wasn't there.  The video is still good.  Not sure when I'll post it, since none of you ever watch my videos anyway.  Fewer still are still reading to this point either.  Especially with the gratuitous use of the word double.  That's an example of what we call in the blog business of literary inflation.  I just made that up.

Getting back to remaining tests.  After the pulmonary function test, Heidi had a chest xray and a bone density scan.  I didn't stick around for those, partly because I didn't want to learn more unfamiliar things about her chest. 

Today was the routine weekly medical team meeting.  Heidi also had to endure four more tests/exams.  There were the naked mug photos (actually done while wearing underwear) taken in yoga positions to assess flexibility.  She had a skin core taken (not as gruesome as it sounds), and then exams with the dentist and gynecologist.

The only things remaining are a meeting with the nutritionist, long-term care class and the end-of-treatment consultation meeting.  Unfortunately, or perhaps this should be called triple-unfortunate, the last of those is scheduled for June 6.  In the meantime, we are creating lists of things we gotta do before we go.  Some we have to do twice.  Those are the double-do's.  You know what I mean.

On Bainbridge Isle

I didn't make the dates very clear  in yesterday's post.  Perhaps that's because I didn't actually put any dates in. 

Day 100 is June 20.  That is when they first told us 4 months ago to expect to return home.

Two months ago they acknowledged that some people leave at Day 90 (June 10).  That was only if all the Day 80 (May 31) tests went smoothly.  We're using Memorial Day to use the excuse that we should schedule the Day 80 tests before the holiday instead of after.  We don't have confirmation from the schedulers yet, but we do have permission from the doc. 

I asked what else is needed after successful completion of the Day 80 tests.  The answer:  an exit meeting.  Doesn't sound to me like that should take long to complete. 

Nothing official, but optimistic.

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.