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.