Special Be the Match Edition

 It's been awhile since I talked up the National Bone Marrow Registry and how important it is to people in need.  Several weeks ago Jean and Lisa joined.  Just recently Kris swabbed, sealed and delivered, as she put it.  Those are great stories; it's nice to hear y'all are making a difference. 

My uncle Sid is here visiting from Michigan today.  He's even kind enough to root for the Huskies in the Holiday Bowl.  Sid recently tried to join the Bone Marrow Registry but was disqualified for being over 60.  He's 19 years over 60 but still tried to register.  Think about that when you're making excuses not to join.   

The special occasion that makes this the Special Be the Match Edition is that Heidi's sibling HLA match is no longer a suitable HLA match.  It turns out that just recently the Puget Sound Blood Center added Chronic Fatigue Syndrome to its list of disqualification criteria for donors.  When we were in Seattle two weeks ago the doctors expressed concern when they were told of Toby's condition, but didn't have anything concrete to offer.  Seems the concrete has since solidified into a unanimous "no."  This may be the first time a donor has been rejected for Chronic Fatigue.  I'm going to suggest to the PSBC they name it the Toby Weissert exclusion.  In the future, those with CFS will be able to say, "Dude, game over, they Tobied me!"  If any of you with CFS get tired of my nagging to join the registry, you can play your Tobied off the Registry card. 

Heidi, Sid and Scott

Enough on the Toby exclusion?  Well, it turns out the latest latest news came from our local oncologist who is suggesting that we and Toby be given the facts (which are few) and risks and let us decide whether to proceed.  Seems there is no real proof that CFS is caused by a virus and no real proof it can be transmitted via blood products.  If so, the PBSC disqualification is just a Hippocratic do no harm over-reaction.  Don't get me wrong about Hippocrates; in general I love the guy's policies. 

As I told our local oncologist, Emad, he always seems to deliver bad news following Husky wins over his alma mater, USC.  Back when we beat them in football (at the Coliseum! Emad exclaimed in desparation), Heidi's disease progressed from MDS to AML.  Two days ago we beat them for our first Pac10 basketball game of the season.  All I have to say to Emad is, get used to it.

What does this mean to Heidi?  It means the January 12 report date is out the window.  It also means I get to tell my cow-orkers once again that I will be staying at work here longer than last reported.  How much longer?  Don't know.  The SCCA is expediting their search to find an unrelated donor in the national registry.  Yes, the very same registry I've been nagging everyone to join.  We should find out in the next week what this means to us.  It might mean another round of consolidation chemotherapy (one-week in hospital) here in Tucson.  It might mean out-patient chemotherapy here in Tucson.  It might mean something completely different that involves things outside my range of speculation.  Whatever.  You play the hand you're dealt, right?  And whine whenever you don't like your cards.

If I may take an aside to nag and whine in a different flavor.  I have a coworker of Vietnamese decent whose sister has the same acute myeloid leukemia.  She has had it longer than Heidi and has been searching for a match for some time.  Her brother, my coworker, does not match.  When we first started the HLA match process, he told us how he had gone to asian communities and manned booths in public places to try to encourage people to sign up for the registry.  Being of the same race is a requirement to be an HLA match.  He said caucasians always find a match.  Asians usually can find one with a little more searching.  Other minorities are much more difficult.  (I wanted to say to him that half Armenians aren't a compatible match for anyone.)  So if you can't join because you were Tobied or because you had Hepatitus A when you were 10, or if you're a half-minority and aren't compatible with normal people, ask a friend to join.  That's what I do.

Hanging out in Puerto Penasco, MX

We're enjoying a little downtime after Christmas.  I have the week off from work so we decided to drive to Southern Cal to see family and then stop at Baja on the way home.  We booked a place at Puerto Penasco for three nights and have absolutely nothing to do.  Well, Heidi is finding some places to shop.  We bought some margarita glasses, pottery and some other glass vases and things.  We also got this one decorative mondo margarita glass.  It won't be for drinking so much as just a shelf piece.  You'll have to see it next time you visit.

I apologize, O Gentle Reader, for leaving you hanging after my last post.  Apparently I didn't spell out the details of Heidi's treatment plans very well.  Some of you have prodded in ways that appeal to my sense of gratification.  To explain, I have been lauded with praise, with words like "good writer" and "cool guy."  There are few things more complimentary than to be regarded as a cool guy.  For that, I will reward you, O Gentle Reader, with an extra loquacious and bombastic, but hopefully not obfuscatory, blog today.

Originally I thought we would be driving to Seattle this week.  Obviously I am not the right one to consult in such predictions.  Our report date at SCCA is January 12.  This means I will be at work the first week of January and we will depart Tucson to start driving north Jan 8. 

But first, a little interlude about how funny it is to be watching NFL games on ESPN Spanish edition.  If you listen closely you can catch a caliente or a que pasa occasionally, but . . . well, ya gotta be here to really appreciate the humor.  I guess the hotel we are staying at is intended for those who understand more than just cerveza and el bano. 

Okay, now I gotta take a little deeper interlude, because blogger.com has put me in the Spanish version.  All the headings at the top of the dashboard page are in spanish.  The spell checker doesn't understand anything I am writing.  All misspellings from here on out are not my fault.  Unless I write about margaritas or how you aren't supposed to rebase on the raya continua (something they make very apparente on the Federale 8 highway), then I am not responsible for any typographical errors.  By the way, I now know how to say "goal" in spanish.  And I just saw a basketball commercial and now I know how to say "alley-oop" in spanish.  My vocabulary is growing.


Sunset, margaritas, dinner, ahhhhh . . .



Okay, back to the topic at hand.  We check in at SCCA on Jan 12.  This begins a couple weeks of testing.  Heidi will have to study anatomy real hard so she can pass all her tests.  [That was a joke, BTW.  The fact that I have to tell you is proof of the language barrier here.  Ay carrumba!]  January 28 she gets a Hickman port to replace the inferior port she currently has in her chest.  February 8 she starts radiation treatment.  This is a special soup of Yttrium 90 and Indium 111 that promises the best of Beta and Gamma rays science has to offer. 

Actually, we don't knowthe best science has to offer because it is only part of a Phase 1 trial.  So all we can say for sure is that there is evidence this radiation protocol has promise, but they don't really know what dose is appropriate.  Phase 1 trials are intended to benefit the research organization more than the patient, in my humble opinion.  I don't have all the info I need on this and am still in the research phase of my inquiry.  So far I haven't heard anything about how it is supposed to benefit the patient.  Maybe I haven't been reading the right things yet.  Personally, though, if I they don't sell it as a benefit to the patient or future patients, then I don't see why we should participate.  Tell us how much you know about who it will benefit, then we'll make our decision.  If any of you readers have any advice or council on this subject, please email or call Heidi or me.  It is Protocol Number 2309 and John Pagel is the principal investigator. 

Pelicans have absolutely nothing to do with this blog,
but I love how they utilize ground-effect aerodynamics

Following radiation in this trial, Heidi gets 3 to 7 days of isolation.  She'll be too radioactive to interact with the public.  Her clothes will have to be shipped to a hazardous waste facility.  If she takes a computer in to her room, it will have to be wrapped in plastic wrap because her sweat will be radioactive.  On the plus side, she'll be able to sell her stools to terrorist groups as raw material for a dirty bomb.  Wow, that would be a dirty bomb in more than just one way.  I can just see the news organizations reporting on how some rogue terror cell is working on a dirty stinky bomb.  That would be both a nuclear weapon and a biological weapon.  Well, it would be pretty shitty anyway.

  Enough potty humor?  Long about February 17 Toby shows up in town and starts his 5 days of nupagen injections.  At the end of that mini-vacation he donates his stem cells and Heidi receives them.  This should be about February 23.  This day is important because it will be called Day Zero in the stem cell transplant procedure.  Heidi must stay in Seattle until Day 100, which would be early June.  Those of you who have been reading from the beginning know that establishing Day Zero is not an easy thing to do.  If we decline the Phase 1 Trial, it would move Day Zero up a few weeks.  If we decline this trial but accept another, it could move Day Zero an indeterminate amount.  In other words, Day Zero is not written in stone and will be the subject of future discussions, arguments, and even perhaps epithets.  Stay tuned.

Hoping to remain a cool guy,
Scott

Katrina, Smane and the two stylish-hatted ones

 Had the consultation meeting today.  Last week when I tried to plan the rest of December, we were told that no plans could be made until the consultation meeting.  When Toby said in November he wanted some warning about when he had to travel to Seattle, they told us they could not tell us anything until the consultation meeting.  I asked so many times to get them to bracket the expected start date.  Would it be mid-December or the end of December?  They wouldn't even tell us what month to expect.  All will be revealed at the consultation meeting, we were told so many times. 

We sat through the two-hour spiel from Dr. Negative (as Heidi named him) and not a whimper of schedule info.  So I asked.  All will be revealed, replied Dr. Negativity, after results from another bone marrow biopsy.  This is another bone marrow biopsy.  The five biopsies taken at UMC could not be trusted, of course.  Oh, after the biopsy results, Dr. Negatory and his colleagues would have to reconvene to brainstorm other reasons to put off answering what I really want to know.  I continued to pester Dr. No with my irrefutable arguments about how they should at least be able to give us a not-before date and a no-later-than date for starting treatment.  My irresistible charm must have worked, because Dr. Aintgonnahappen finally relented, stating that all would be revealed after he could look at the scheduling calendar. 

Two floatplanes skimming Lake Union.
This is the view from the transplant floor at SCCA

Looking at the scheduling calendar was evidently a four-hour ordeal, because this afternoon Heidi got a call stating she would need to report back January 12, providing no there were no surprises learned from today's biopsy. 

January 12?  I didn't think starting so late was even reasonable.  All has been revealed and it isn't what I expected.  I've been telling everyone at work that I was fairly certain I would be at work through the end of December, but no longer.  Now they have to put up with me for two more weeks in January.  Boy, are they gonna be disappointed.

January 12?  I sure wish someone had told me during one of the 8 times I previously asked that mid-January was actually in the realm of reasonableness.  I feel like the squarecrow standing with Dorothy after Glenda revealed the simple way to get home.  I should have thought it with my brain.  Perhaps I should have felt it with my heart.  Or maybe . . . no, the lion had no real skills useful in this situation. 

Now we need to make other plans for my week off after Christmas.  Now that all has been revealed, we can plan something.  After telling my coworkers I'd be gone for four months starting in December, then continuing to work through December and telling  them I'd be gone starting January, now I get to come back in January and work for two more weeks.  They're probably getting really tired of this crying wolf stuff.

Consultation in rain city

 Breaking News!  They put a space needle in northwest Tucson.  And there's standing water on the street . . . in what is called . . . puddles, I think. 

No, that's not right.  We're in Seattle figuring out the plan for the next four months.  I could tell you all about riding light rail, the SLUT, and walking from Eastlake to SCCA House.  Today we took a tour of the Pete Gross house, which is kinda like a Ronald McDonald house for adults.  Actually, there are kids there, even a school.  So perhaps it is better described as a ronald mcdonald house without fries cooked in beef tallow.  Or perhaps a ronald mcdonald house with only single patty burgers.  Or perhaps those are just really bad comparisons that have little humor or any other redeeming value.

For those of you who haven't been shopping for cancer care lately, SCCA is the Seattle Cancer Care Alliance, which is the treatment arm of Fred Hutchinson.  SCCA House is temporary living quarters.  Pete Gross House has longer term temporary living quarters.

Today we are staying at SCCA House.  We will probably be staying at Pete Gross House soon,  for fourth months.  All will be revealed, we are told, tomorrow at our consultation meeting at SCCA. 

In the meantime we stay here near Eastlake and visit with family and friends.  Which, truthfully, isn't such a bad place to be forced to hang out. 

Full disclosure on the rain.  It was raining when we left Arizona for the first time in a month or more.  It hasn't rained here since we arrived.  But that doesn't mean my eyes are too big for my head . . .

Escape, Part Tres

We got paroled this morning and drove home this afternoon.  As I've said many times, the staff at UMC is wonderful (so wonderful even that I'm using words like wonderful).  All except Dr. Stickinthemud, who gave us too many restrictions. 

No matter, being home is good. 

Funny story this morning, though.  The team of doctors came in on their rounds, which is something they are want to do every morning.  I was working on my work laptop and Heidi was enjoying her Eggamuffin from BlandRUs, the hospital food service.  The doctors asked what we thought about going home today, immediately invoking a volley of oh yay's.  I don't need to tell you who released the oh yay's.  But I'll give you a hint:  I took a pause and replied, "Do you ever have people who say they do not want to leave?"  The surprising answer from the good Doctors was, "actually, yes, some people do want to stay here for the reliable food and steady care."  Despite the reliability of BlandRUs, it didn't require more than a double-take to acknowledge going home was the obvious choice, Stickinthemud restrictions notwithstanding.

On the road outta Feverville

Still stuck in the hospital, but at least we left Stuck-in-bed city and we're back to the land of smiles and photo ops.  Slight fever last night, but hopefully those are in the past.  Blood counts are still in the toilet, but hopefully they are climbing.  No escape date set yet, but hopefully in a few days.

Not a lot else to report.  But I wanted to post again just to report that Heidi is much better than on Sunday when I last posted. 

We have our Consultation meeting in Seattle tentatively set for Friday, Dec 17.  As I wrote previously, there is no certainty when Heidi will be released but it seems likely to be well before the end of next week.

Also new is that my older bro Bruce is the latest to give a cheek swab to the Bone Marrow Registry.  For the rest of you, there's no reason to delay.  Even though Heidi has a match in her brother, you can still help others.  Although it's safer for people like Bruce and me because of the half-Armenian incompatibility thing.

I just came across this article about someone who just joined the registry became an instant hero.  http://readingeagle.com/article.aspx?id=270115.  This could be you.

Still sick

Drum roll, please . . . . . . . . . . the bacterium du jour causing all the nastiness is . . . . . . . Klebsiella.  I can neither confirm nor deny whether any of my prognostications from yesterday are correct.  No matter.  It is not too vile to be named.  It's been named and doesn't even sound the least bit latin.  They're hitting it with Cefapime—the same antibiotic she's gotten for every other fever, infection and ingrown toenail so far.  Not latin, not vile, and doesn't even need a magic wand to battle it.  Oh well.

They moved her back down to 3NW to room 3724.  These rooms are better suited for neutropenic patients.  The one on 5E was only a stopgap.  At least she is among friends again.

There's a difference between being in the hospital to prevent being sick and being in the hospital because you are sick.  Heidi was confined to her quarters the first two trips because she needed the aseptic environment, to prevent picking up something from the cruel world.  On this trip the world has already inflicted its cruelty and she is here to recover.  The first two trips she used used expressions like "keen" and "skippy" and "oh yay."  This trip she sleeps a lot.  The first two trips there were plenty of photo ops.  This trip there are few.

Invasion of the gram negative rods

The Proper way to Watch Football at the Hospital

Heidi was a little sick Thursday night, really sick yesterday, but when I called her this morning, she said, "better."  For those of you who are Monty Python Meaning of Life fans, the word better is always followed by better get a bucket.  Fortunately all of Heidi's bucket work finished yesterday.

They checked all the fluids.  All tests came back negative except the blood culture, which was positive for gram negative rods.  Further tests are needed to figure out which little bugger it is.  I'm guessing a bacilli or maybe something with flagella.  Hopefully one of those because that's about the limit of my bacterial anatomy vocabulary.  If not those I'll bet it's something with only a latin name, something so vile it is only written in italics.  It will be known as it who cannot be named in english or written in straight letters.

The whole point of this nonsense is that they have specific antibiotics for specific blood-borne buggies.  In the meantime she's on the basic Cefepime, which she's had many times before.  By tomorrow or maybe Monday they should have some specialty latin-named antibiotic.  That one will be named, but surely will have so many letters and syllables that it should not be attempted with a beer-infused tongue.

Our Consultation trip to Seattle on Monday is surely off.  Maybe it will get postponed for one week.  Not sure what this will do to the start of treatment.  They don't seem too well equipped to accommodate the limitations of neutropenic people and the difficulty of scheduling travel. 

Back in the hospital again

Yeah, what the title says.  Listless yesterday, fever this morning, hospital today.  I guess that sums it up.  I shouldn't have been surprised—the docs said her counts would continue to drop for two weeks, which was yesterday.  So they did.  All plans on hold.

University Med Ctr
Wing 5E, Room 5626
694-3514