Epilog



Running along the Riilto River Trail

The Hickman line is out.  In October of last year, the University Med Ctr here in Tucson installed a power port in Heidi's chest to administer many drugs and draw many blood samples.  In February at SCCA, that was replaced with a Hickman line by Dr. Petty.  Hence the nickname Port o' Petty.  Dr. Petty thought that had a nice Caribbean sound to it.  I was trying to to trash talk him by making it sound like an outhouse.  Some of my best slams are lost on some people.  That's why I envy Groucho Marx, because he could insult people and they'd appreciate it.

Removing the Hickman line was a huge moment, because it represented one of the last lingering reminders of that whole ordeal.  I was excited to record the procedure on video and stills.  If it had been removed in Seattle, they would have done it in the clinic during a routine procedure.  Here in Tucson it required a visit to the hospital.  We asked everyone involved what it would take for me to be present and they all replied that it would be no problem.  It turns out we asked the wrong people.
 

Downtown with Kevin & Tama

I drove from work and met Heidi at the hospital to go through check-in, paperwork and gowning.  We started asking the staff about video recording the procedure.  "Oh, no, it's a sterile environment," replied one nurse.  "You need a radiation dosimeter," said another.  "You would have to sign the paperwork as an observer," retorted a third.  (Yes, we kept asking everyone, hoping someone would give a different answer.)

We explained how I had been present at almost all previous procedures and made many a tech famous on youtube.  The nurse then asked, "are you a doctor?" 

Immediately I am drawn to the movie Ghostbusters in the scene where the four heroes are fighting the evil goddess Gozer on the rooftop.  Gozer asks Dr. Ray Stantz if he is a god, he replies "no" and so Gozer smokes them with lightning from her fingertips.  After they recover, Winston says, "Ray, when someone asks you if you're a god, you answer YES!"

Unfortunately, I've been living in blog world too long.  For instead of taking Winston's advice and answering yes, I realized this would play right into a blog entry where I tout my fake doctor credentials and the doors open all the way to the procedure room.  So I proudly told the nurse, "no, I am not a doctor—I have a Master's degree!"  The look on her face told us immediately that the correct answer would have been yes. 

It was quite a shock, coming from a facility where the caregiver is considered a vital member of the wellness team to a place where my role was to hold my wife's purse while she was in the procedure room.  The fall from fake medical expert to purse holder was more than I could take, so I went back to work. 

For that reason, I have no new videos to show.  Ah, no new videos of medical procedures, but new videos of hair growing.  If you think watching paint dry is entertaining, take a look at these.  I have one of  both of us, one of Heidi and one of Scott.  We took daily photos from when we got our hair cut until a few days after arriving home. 

This represents the last significant chapter in getting over Acute Myeloid Leukemia.  Heidi is still on many pills and we have many bills still coming and there are many more checkups and tests still ahead.  But none of that is worthy of a blog entry.  Thank you, readers, for putting up with my venting, boasting and stream-of-conciousness drivel. 

Thank you especially to all who have joined the National Marrow Donor Program.  For those of you who are still on the fence, there is no reason to stop considering it.  Laurie V just sent her cheek swab and is now on the registry.  The chance of getting chosen to donate bone marrow is 1 in 350.  The chance of getting chosen to donate to someone who lobs insults about your bone structure, names you after a Brady Bunch character, and generally blames you for everything is practically nil.  Heidi's anonymous donor, who I lovingly refer to as Marsha, is a life saver and also a perfect 10 out of 10.  She gets our special, special thanks. 

At a Tucson Padres game

Day 100

Juvenile coyote in our back yard

We're Home!!!!!!!  We've actually been home for over a week now.  Sorry I haven't updated y'all on that.  Yes, we are back with javelinas, coyotes and rabbits running amok in our neighborhood.  No slugs and seagulls here.  The plants in our yard can defend themselves better than some small countries.  And our tap water is almost 90 degrees.  Yes, that's the cold water.  Toto, we're definitely not in Washington anymore. 

The flowering Saguaro in our front yard
attracted a cactus wren and a dove

Heidi passed her Day 80 tests with flying colors.  Her immune system is more than 93% donor and she had no leukemic cells.  She is still taking ~20 pills every day, but that amount is decreasing.  We still have to pump in magnesium sulfate into her chest port every day.  Actually every other day now.  The decreased tacrolimus dose requires less IV magnesium, but we have this surplus of 36 MEQ MgS, so she is taking it every other day.  Hopefully soon the 10 magnesium pills/day will be sufficient and she will require no IV magnesium.

The drive here was much more relaxing than the drive to Seattle.  Back then we had this ominous weight of unknown severity bearing down.  Four months of SCCA magic later and we are back home and back to normal.  Well, almost normal.  Once the 20 pills and the IV magnesium disappear, we'll call it normal.

Heidi is running a little.  More of a run-walk combination.  Pretty damn good progress, really.  We both signed up for a 1/2 marathon in January.  It's a goal.

Walking home from childcare in Costa Mesa

Escape from Seattle

Our Last Appointment with Nurse Diane

It's funny how things have changed during our stay here.  Priorities have progressed.  Past problems became routine procedures.  Present problems are merely issues. 

Like today.  I was thinking about beer.  Understand this isn't a frequent concern.  But it is a concern now.  In days past we were worried about how to prevent infections, how to infuse magnesium sulfate, whether they would find a suitable donor, and whether we would ever be healthy enough to go on the tour of Underground Seattle.

With Irresponsible Kris at McCormicks & Schmicks

Now our concerns are about things like the temperature in Tucson.  And beer.  You see, there is more beer in our fridge than I can drink in our remaining days here.  And Heidi is really no help.  So I'm trying to figure out the optimal consumption protocol that minimizes wastage.  Oh, so you think this is a trivial problem, huh?  Well, remember, there is also whiskey and gin to consider.  The whiskey is further complicated by both good and cheap stuff.  And you can't drink good scotch after beer, but not for the reasons you are thinking.  No, not because it is risky.

The cackling noise you heard Tuesday
was DeAnne, Jamie, Heidi and Jane

This problem is further complicated by the need to attend all the tourist activities we've been considering since we first considered coming here.  And further further complicated by the need to eat at all the good restaurants nearby.  And what is the first thing they offer at restaurants?  More beer and drinks.  It's a viscous circle.

Kris is probably thinking to herself, "Self, there goes Scott talking about himself again."  But no, Kris, I am actually talking about you.  Because you are contributing to our restaurant habit, keeping me from my fridge and the aforementioned beer utilization optimization problem. 

The only solution here is to go on the tour of Underground Seattle, go to all the nearby restaurants and sign up for as many other tourist activities as we can before getting kicked out.  Which is Monday, by the way.  We're starting our drive home on Monday.  Should be home by June 11.  Yes, Toto, we're going home.  Except not to Kansas.  Unlike Dorothy, we have some serious non-witch types of problems to solve involving beer, underground tours, restaurants . . . Did I mention we have excessive yogurts remaining?  Aaaaargh!  Don't even get me started on the Cheerios depletion requirements.

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.

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.

Good news from the Medical Team

The decline is when the poison hit home

Heidi received a phone call from nurse Diane  yesterday, "Hello, Heidi?  How are you feeling?"
"Fine. . . . why?"
"Really, you're feeling okay still?"
"Yes, shouldn't I?"
"Well, that's good.  You no longer need to have daily blood tests.  Twice weekly is fine."
"Ohhhhh Yay!"

I took a little poetic license there just to make it easier on the reader.  Then today we met with nutritionist Kari.  She told us that Heidi is such a good eater she no longer needs to see us either.

Let me explain.  When I say, a good eater, I don't mean that the nurses do a Bill Cosby "hey-hey-hey" when she walks down the hall.  By a good eater, it only means she can eat enough balanced food without frowing up.  We only discussed restaurants with her anyway.  Restaurants and recipes and other food stuff.  It was all about eating.  I think the meetings with Kari would have gone much better if she had brought snacks.  I'm hungry; what's for dessert?

We're certainly not out of the woods yet.  This is only Day 19.  As her blood counts return, the risk of Graft versus Host (GvH) rises.  Heidi had no immune system the past two weeks, so the graft couldn't muster much of a fight against the existing host.  It was kinda like a kindergartner taking on an adult.  (Except  don't think of Heidi as the adult; think of a real adult who can actually defend herself.)  Now her immune system is approaching junior high.  It has new-found hormones and a sense of swagger.  It spends afternoons hanging out behind the school smoking cigarettes.  When it comes across a corpuscle it doesn't like, it might want to pick a fight just to prove its manliness.  That's GvH.  Gotta get through this awkward stage.

This risk continues until her immune system becomes mature enough that it starts getting tattoos and robbing gas stations.  Or other signs of adulthood.  I'm trying to come up with a better analogy and coming up empty. 

Maybe I should take more photos so I don't have to fill this blog with fake doctor blither.

Okay, here's a dude singing about donating bone marrow.  Cool!

Blood Moon Rising (and other bad cultural references)

Noooooo, not the chopstick treatment!

As you cannot see in this photo, the hair continues to disappear.  Heidi has a distinct male pattern baldness going on.  It is making her look more like her brother all the time.  Actually, she's a dead ringer for her Uncle Larry too.  No, not Larry from the Three Stooges.

My hair continues to grow everywhere, dammit.  How is it fair that hair starts growing in new places at the same time that my eyes cannot focus well enough to trim it successfully? 

Enough about hair?  Let's talk white blood counts.  Groucho Marx said a corpuscle is a thing that rushes from your heart to your feet, gets a look at those feet and rushes back to the heart.  Chico corrected him and said the corpuscle comes after captain and lieutenant.  The white corpuscle is what crushed the bad guy in Fantastic Voyage as Raquel Welch grimaced in her space-age unitard.  Mostly I just remember Raquel in her space-age unitard.  I could be wrong about other details.  The white blood cells (corpuscles) are the disease-fighting agents.  I can say that confidently even having never played a doctor on TV and being shot down trying to play a fake doctor at the clinic.  I can also say I am out of popular culture movie references to white blood cells.

Robin's Bday Party at Benihana

Heidi's white blood count (WBC) was 0.08 thou/uL a week ago.  Since then it's gone to 0.11, 0.18, 0.17, 0.21, 0.36, 0.43 and today was at 0.65.  That's progress.  The normal range is 4.3-10, so she is far from normal (you can say that again!), but progressing in that direction. 

Her platelets (the applesauce mixture she received IV two weeks ago) went from a low last week of 15 thou/uL to 58 this morning.  Normal platelet count is 150-400.  Need I say again she is far from normal?  Perhaps it's because her platelets were from someone named Abbie Normal (I'm not completely out of movie references!). 

This morning there were boats and planes on Lake Union.  I set the video camera on the window sill and worked on my computer for 30 minutes.  Because nobody will sit through a 30-minute video of water, I compressed it down to 28 seconds.  Call it the ADD video cut of Lake Union.

On the bone marrow registry front, Tama joined the legion of cheek swabbers recently.  Yay Tama!

The Hair Chronicles

The view from our porch

In the months following our previous head shaving escapades, many people inquired why my hair was so long and Heidi's was not.  The answer to that question is very obvious now.  I have a fine stubble growing out uniformly.  Heidi's stubble from a few days ago is just getting thinner.  Over the next week, the little hair she has will disappear while mine will continue to grow.  I know, it's unfair.  But it's worse for you, because if you have nice hair, Heidi now hates you.

I have no bald head photos to illustrate this progression, at least no photos that have been cleared for public consumption. 


Heidi pointed a camera at me—her fault





On the Blue team at SCCA, Heidi is getting a rock star reputation.  When told of this yesterday I had to ask, "is that a rock star like Meatloaf or a rock star like Mick Jagger?"  Neither choice seemed a good answer.  But that is the reputation she is getting here.  Her appetite is getting better and she is still walking every day to the clinic and back. 

Today is Day 13 and still no fever or the other f's.  Only one transfusion so far and that was for platelets.  Since then her platelets have been holding steady.  That could be a sign that her bone marrow is starting to work. 

Her magnesium is still getting hammered by the Tacrolimus.  We are pumping in 2 bags of magnesium sulfate every day now.  It means I'm getting just crazy-good with the syringes.  The way I understand it, she swallowed the chemo to catch the cancer, she swallowed the Tacrolimus to catch the GvH, she swallowed the magnesium to catch the Tacrolimus, she swallowed the spider to catch the fly, and I don't know why . . . you know the rest.  Except in this case the progression is 20 pills long.  Twenty and counting.



My beer fridge isn't working very well

I didn't have any new photos so you get this shot
from the Volunteer Park water tower from last week

At home in Tucson we have a special wine cooler in the kitchen and a beer fridge in the laundry room.  Here, the beer fridge is our deck.  The first few weeks it was nice and cold outside.  Cold enough that the non-rocket scientists were concerned the beer would freeze.  Today the sun was shining on my beer.  We are sacrificing a lot living here. 

Today was the last dose of Methyltrexate.  It is a chemo drug, but given at a low dose just to suppress the immune system.  That was the last of the planned poisons.  Yay!

Not a whole else to report. 

I haven't mentioned the bone marrow registry for a few weeks.  Andy at work joined.  Unfortunately he's another of those coworkers undoubtedly with degenerate DNA who will actually dilute the high standards of the registry.  <sigh>  He joined when Nordstrom was running a special where they would pay the registry costs.  The affiliation with Nordstrom truly impressed Heidi, though I don't think it raises the quality of his DNA.  He doesn't read this blog anyway.  BTW, you don't have to pay to join regardless.  Nordstrom was only paying the costs to marrow.org; it's always free for you to swab your cheek and mail it in.  A.J. and Stephanie also joined the registry.  Last I heard Stephanie was disqualified for one of the many reasons on their list, but she re-inquired and got a different answer the second time.

Sorry, I have no clever quirks, no brazen buffoonery, no clever caprice, no delightful drollery, no entertaining escapades, no farcical frolic, no engaging gags, no . . . [Scott—put away the thesaurus!]

We just sit here grateful for every day that doesn't bring fevers (or the other f's) and gets us one day closer to the return of neutrophils, white blood cells and the new immune system.

Head shaving, take 2

Before

According to the Supercuts card in my wallet, my last haircut was May 15 last year.  Only my hairdresser doesn't know for sure. 

Heidi tired of the hair coming off in the shower, on her clothes, on the pillow, on the street, etc.  There is so much hair along our 1/2 mile walk to the clinic you can follow it like breadcrumbs.  Okay, that's an exaggeration.  But it does make it easier to grip the mossy hills without barb wire on my feet.  I might still be exaggerating, but I'm never sure.
 

My poor beard-trimmer clipper really struggled through two heads.  But I think we did okay.  I made a couple videos, but they have much less pomp and minimal circumstance compared to the previous hair cutting session at UMC in Tucson.  Maybe because I didn't play The Stripper while we clipped.  Maybe because there weren't any nurses joining in the fun.  Definitely less pomp and much less circumstance.  But still a lot of hair everywhere in the apartment.  If we were at home in Tucson, we could have gone out in the backyard and let the hair become mulch.  Here we vacuum and sweep everything that gets cut.

 

Hmmmm . . . should I shave my face too?



If we were in Tucson, Heidi would be on her third week in the hospital.  Different rules here.  And perhaps different premedication to prevent complications. 



Speaking of not being in the hospital, did everyone notice Heidi is not in the hospital?  Remarkable.  She had nearly constant 100+ fevers during induction chemotherapy.  Nothing this time, so far.  If she can make it to the weekend, the new bone marrow should kick in and start generating a new immune system.  Nothing is guaranteed, but it does look possible.

We befriended a 30-something couple our first week here.  The woman, who is the patient, looked fit and healthy.  Heidi described her as pretty, but I didn't notice.  I did notice her thick mohawk.  Who wouldn't?  We hadn't seen her for weeks and wondered what happened.  Finally caught up with her at the clinic yesterday, sans mohawk.  She had her transplant and stayed in the hospital for three weeks.  Much thinner now.  Definitely took a toll on her.  But she's on the upside now.

Yes, Alex, I trimmed my ear hair too



 My burgeoning career as a fake doctor took a hit yesterday.  Heidi has been getting weird skin blotchiness and redness and mottled patterns.  Meeting with the Blue Team yesterday, she pointed out this dark patch on her neck.  The nurses looked.  The doctor looked.  They opined it is probably from the Treosulfan (a chemo drug) and is nothing to worry about.  Since having a Master's degree made me imminently qualified to play a doctor on TV (or at least at the apartment), I immediately piped in that I thought it was leprosy.  Julie the ever-astute P.A. retorted quickly that I should stick to missiles and leave the diagnoses to the medical staff.  Oh well, I still have a chance to be a fake nurse.

Day 9 and no fever

Cherry trees in the quad are angstroms away from blooming

We made a road trip over the weekend to Trader Joe's.  Stopped at UW campus on the way to walk around. 

Though Heidi's neutrophil count is flatlined, we took a trip out to get some groceries.  It isn't too risky since she isn't touching door handles or shopping carts previously touched by virus-laden spit-spewing microbe-sloughing germ-expelling bacterium-disgorging microorganism-pitching (yes, I use a thesaurus) plague-regurgitating pathogen-exuding disease-discharging (surprised it took this long to get to that one?)  epidemic-pandemicing (I went too far, didn't I?) people.  Yeah, we've all been there, haven't we?

Team Heidi Ho at The Big Climb

I didn't write anything for a few days because nothing monumental happened.  With Heidi, anyway.  I could tell you all about my Half Marathon and stairclimb, but you didn't sign on to this to read about me, did you?  <damn!>  BTW, in the photo to the right, Cody has mega-cooties which is the reason for my off-putting body language.  See the above thesaurus exercise for his current condition.

It turns out that when I don't write, Heidi's friends all start calling her.  So that's all for today's edition.  Bye.

Okay, I do have some photos to share, and do need to point out that it is Day 9 and Heidi is not in the hospital.  That is a little unusual, so they say.  She did spend the one night there to receive the transplant.  Her room on the 8th floor had a real nice view of Lake Washington, Husky stadium and the Cascade Mountains.  The internet connection bandwidth there can push 20 Mbps.  That's on wifi!  Upload and download, thank you very much!  And that's just for visitors!  It is nice being on a major hub.  Hmmmm, maybe I should let Heidi push the shopping cart next time.  Did I mention only a 4 msec ping latency?  Can't touch that within a couple decimal places here with the DSL line at PGH.  But if she can make it to the weekend, the graft bone marrow should start to generate blood cells and her immune system should start picking up.  The docs say her immune system should go non-zero starting, perhaps, Day 13 (friday). 

Things are not looking rosey on the hair front.  Lots of hair in the shower every day.  May be head-shaving time again in a few days.  The previous hair cut garnered 3500 viewers.  Oops, just checked and it's up to 3700.  Wanna be 3701?  Point your video browser here.

Want to see what a typical morning is like?  No, not the frowing up part.  The morning blood-draw part.  See the video with the ever-efficient vampiress Kelsey here.  Oh, Heidi wants me to say that she didn't really throw anything up.  Just gagging and heaving.  Everyone feel better now?

Late evening at the clinic

Cocktail Hour at SCCA

Heidi's daily blood draw was later today, not until 2:30.  Usually it's at 8 or 9am.  By the time they got everything measured and evaluated, it was 4:30 before they decided Heidi needed platelets.  Platelets are what cause your blood to clot.  When they are low, she gets bruised easily and she also gets these little red bumps called Picante.  I may have spelled that wrong.  So here we are at 6pm, waiting for more platelets. 



Waiting for an appt with the vampires



Those of you concerned about whether these are O+ or O- platelets, fear not, for platelets don't have a type.  If Heidi was receiving whole blood, she would be getting O-.  As I discussed before, she is now a mixture of O+ and O-, referred to as a chimera. 

Interesting thing about bone marrow transplants is that she could potentially have received stem cells from a male donor.  I read an article that said there are some advantages for a woman to get male stem cells.  Obviously they aren't strong advantages or that would have been one of the criteria. 

It brings up an interesting discussion, though.  If she had received male stem cells, her blood would have ended up having XY chromosomes.  She would be a female with male blood.  Which might sound interesting to some of you, but the more poignant question to ask is:  would I then be bisexual?  (See how cleverly I turned this discussion to be about me?)

As it turns out, her donor is female and there is no reason to question my preferences. 

Correction.  Susan the nurse brought in what looks like a bag of applesauce and said it was O- platelets.  Even though the platelets themselves don't have a blood type, these platelets came from an O- donor.  Maybe that's important.  But it still looks like applesauce.  Susan the nurse is also the one who took the cockeyed photo at the top, so take it for what it's worth. 

Now it's 7:10 and my Bridgeport Cafe Negro (coffee-infused porter) is gone but Heidi is only halfway through her platelets.  She was never very good at chugging.  Hey, that's a coffee-infused porter.  I could drink that for breakfast!

June 20, Here we come

Heidi, Alan and DD brought dinner and cookies

Did I mention June 20 yet?  That is Day 100, on the post-Julian modernist calendar based on the second coming of Day Zero.  Calendars are complicated here.  They tell us to plan to be here until Day 100.  Some people get out sooner, some later.  June 20 is the plan for now.  It's on the calendar.

I've become quite the infusion specialist.  All the nurses here are fearing for their jobs.  They don't read this blog so they probably don't know it. We have been infusing Tacrolimus, 600 mcg/100 ml, twice daily.  But that depleted her magnesium, so we started 100 ml bags of magnesium electrolyte once a day.  We made another video showing how much more proficient we are at connecting the pump. The plebian 24 meq magnesium mixture wasn't enough, so they upped her to 40 meq magnesium.  Unfortunately, the Mg causes her to be flushed and itchy, so she does a benedryl beforehand.  That's on top of the Compazine anti-nausea med first thing in the morning to keep the clinic frow-ups away and the Lorazepam anti-nausea at bedtime, which helps her sleep.  Those are just some of the optional drugs.  Figuring out what works is half the battle.  The other half of the battle is also half the battle.  Together, they comprise the entire battle.  Not sure what this all means, but I think I got the math correct.

Heidi isn't running with me these days.  I ran up to Volunteer Park and got some nice photos on a sunny day. 



That's threading the needle