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

Out on the lamb



Turbie-Twisting Clean

 Spent Thanksgiving weekend doing Thanksgiving things, as it should be.  That included a drive behind the Orange Curtain for mucho turkey and all the stuffing, including the requisite pie.  (As an aside, I've been told the ratio of the circumference to diameter of a thanksgiving pie is the same, regardless of whether it is pumpkin, apple or mince.)  Today was a routine visit to the doc to get blood level checks.  Unfortunately, but not surprisingly, blood levels were low.  Heidi spent most of the morning at the doc's office getting more platelets.  She started to get red dots on her legs yesterday, which we've learned is a sign of clotting problems caused by low platelets.  Other signs are pointing toward a need for red blood cells later this week.  Who needs fancy tests when you can read the signs?  Anyone who wants to donate to the cause can browse to http://www.givelife.org/ and tiptoe to your local donation site.

All this low blood count business means Heidi had to put away the dental floss, Sonicaire and other such bacteria-dislodging bleeding-inducing luxuries.  Oh well.  Such is the sacrifice.

We scheduled our consultation visit at Seattle Cancer Care Alliance.  I've been asked many times why we are going there instead of continuing treatment here in Tucson.  We were actually told by two different oncologists here to get the stem cell transplant elsewhere.  Seems the stem cell program is on hiatus here in Tucson.  They're expecting it to restart, perhaps in January.  In the meantime they are sending all stem cell transplant patients to other cities.  Most go up the I-10 to Phoenix's Mayo Clinic.  But Fred Hutchinson is the epicenter of such work.  Since we have family there in Seattle, it makes sense for us to go to the center of the stem cell transplant universe.  To the galactic center of the bone marrow galaxy, so to speak.  Where the leukemia hippies go get their anti-cancer nirvana.  Whence the origins of treatment began and developed.  As I said, we have family there so it makes sense for us.

Consultation is a one-day visit.  We're flying in Monday morn (Dec 6) and flying home Tuesday eve.  We get to talk meds with the docs, discuss treatment options, hear about trials, tour available housing and talk everyone's favorite subject:  insurance.

The highlight of the trip for me will of course not be the drive to the airport, nor the flight to Seattle, not even getting on Sound Transit light rail for the ride to Westlake.  No, the best part of the trip, what I am really really looking forward to, that I've been talking about ever since Paul Allen created his Vulcan community around Eastlake, will be to get off the train at Westlake and ride the SLUT.  That's right, mass-transit boys and girls, for everyone who's anyone wanting to get in and out of Eastlake, the South Lake Union Transit is the one to ride.  You can bet that when Heidi and I don the Eddie Bauer look and slog back into the Jet City, that's where we'll be.

Special Escape Edition, part deux

Monica, Wall-E and Heidi

The actual escape, part deux, is scheduled for tomorrow.  But tomorrow I will be too busy escaping to blog anything.  So today I'm writing, tomorrow we're escaping.  Like, deux!

People who have been incarcerated like Heidi have trouble adjusting to life outside.  Last time Heidi had difficulty walking more than 100 feet without turning around, because that's what she does in the hallway at 3NW.  She still walks for an hour at a time, but in 100-foot segments.






Gloria Starting Chemo



This trip I'm predicting Heidi will find it difficult to not discuss bowel movements.  Here in the hospital, every doctor, nurse, nurse practitioner, fellow, grad student, nurse tech, and housekeeper wants to know that what's going in and what's coming out.  It's very important part of medical care.



In the real world, people don't discuss that kind of thing.  At least not in polite company.  No, in all company.  My word of advice for all of you who visit Heidi when she is out is to learn how to change the subject quickly. 

Polina, the Russian Agent in charge of Sleep Deprivation
(Yes, Nurse Tech boss, that is my beer, not hers)
(No, Nurse Tech boss, I do not share beer)
(Okay, Nurse Tech boss, I do share empties for photo ops)

Monica, in the first photo way above, is one of the aforementioned problem-causers.  But the real reason to write about Monica is her dry sense of humor.  She has this way of showing disdain for me that sometimes seems soooooo genuine.  But I know it isn't because I'm the second most-lovable person in this room.

Gloria has taken care of Heidi many times in glorious (Glorias?) fashion.  She is a good example of the excellent caregivers here on 3NW.  There are many others too.  Too many to mention them all.  Some I have already included in previous posts.  Many others deserve to be mentioned, and mentioned again.  Praised and praised again. 

Lastly, I have to mention Polina, the bane of my sleepovers.  Polina tries so hard to be discreet and polite and quiet and operate under the low cover of darkness (I'm sure they taught her that in the agency torture school).  But still I will always accuse her of intentionally kicking my bed and shining her night ops high intensity flashlight in my eyes.  That's what I do.

If all goes according to plan we will be checking out of here tomorrow and not returning.  At least not returning in any official, sanctioned capacity.  I'm sure Heidi will find an excuse to bring some baked goods this way.  I certainly won't balk at any opportunity to ask Monica for a beer as I did many times when she insincerely asked if we needed anything.  Or ask Polina for some vodka.  Or continue to request a 5.1 Dolby surround-sound system so we could actually enjoy a multimedia movie.  That's what I do.

Thanks so much to all on 3NW at University Medical Center.  Obviously we couldn't have done it without you.  You made such a potentially horrible experience bearable.  No, much better than bearable.  There were actually enjoyable aspects of our visit here.  We will miss you.

Sunday is Hospital Day and the day to watch football

Breakfast on Beds

I stayed at the hospital last night.  It's nice not having to drive home alone, but it's really not that great sleeping here.  The cot I sleep on isn't very good.  The thin mattress has a plastic cover, so I sweat to it if I don't move around enough.  Ditto for the plastic-covered pillows.  I figured out early to put down two bottom sheets to provide more absorption. 





Post-run for me
Post Clown-Dressing for Heidi



And then there are the interruptions.  If Heidi is on saline IV, she gets up several times per night.  Every trip to the bathroom is followed by a nurse tech coming in to measure and flush.  There are interruptions for blood pressure, medicine, eye drops, blood draw, plus some interruptions that seem to be intended just to kick Scott's bed and shine a light in his eyes.  Did I mention that Polina is the one to blame for all of this?



So it's nice, but not so nice.  The breakfast in bed in the morning is pretty sweet.  Can't beat delivered waffles. Can't beat waffles delivered to us in bed while I'm still in my underwear!  And you don't have to worry about spilling syrup on the sheets because they get changed daily.    Okay, a few perks I'm gonna miss when Heidi checks out.

Setiva, Kaitlin and oh-la-la Heidi

Speaking of checking out, it is scheduled for tomorrow.  Heidi gets another dose of Cytarabine tonight and one tomorrow morning.  I'll go to work tomorrow and hopefully around quitting time she will be ready to come home. 





Day 2 of Round 2

Day 2 and we're back in the routine.  It's so much less ominous this time.  The first trip to the hospital we approached with much trepidation.  We had heard about the side effects, the nausea, hairloss, sickness, and more, but we had no idea how bad all those things could be. 

There is so much less fear this time.  We know what all those side effects are like.  And all the doctors tell us it will be much less severe this time.  The hospital stay will be much shorter, too.  Another big unknown last time was whether I could do the laundry without Heidi's help.  That proved to be within my capabilities.  I cleaned toilets, washed dishes and kept the house from burning down.  This trip will be less than a week so I plan to just let the clothes and dishes stack up where they land.  Don't tell Heidi.

It feels much like Westley and Princess Buttercup navigating through the Fire Swamp.  The fire jets make a predictable noise before they erupt.  The lightning sand is easy to spot before you step in it.  The ROUS, well those are probably just urban legend.   These things we can deal with.  Prince Humperdink, on the other hand . . .

I have to end this post with a big heartfelt sincere thank you shout out to Commercial Properties of Maui, Heidi's former former employer.  They decided to make their end-of-year donation to the National Bone Marrow Donor Program.  Seems they used to give gifts to their good clients at year's end until, at Heidi's urging, they decided to instead put that money into a charity donation.  Other members of the CPM team and family have also been touched by cancer.  A nice touch that is very much appreciated by this former former employee and spouse.  A class act, boys.

Back in the hospital for Round 2

Steve Accessing the Port

Finally made it back for Consolidation Chemotherapy.  Not that it's something to look forward to, but it is a necessary step that must be done to progress toward being cured. 

Heidi is now in room 3724.  Phone number 520-694-3170.  We're expecting this to be her new home for the next 6 days, barring any water leaks or room refurbishment changes.



The gang's all here again:  Kristy, Heidi and Lorelei (whom
we almost did not recognize with her clothes on)



We were told yesterday she would be checking in this morning.  So I stayed home from work and telecommuted while I could.  They're short of rooms at 3NW because one wing is being refurbished.  So it took some patient juggling to clear a room for Heidi.  Finally about 2:30 they told us they were ready. 



Checking In Outfit



Besides killing a day of work for me, we wanted very much to get started on chemo treatment today.  The sooner she starts, the sooner it ends and the sooner she can check out.  We pleaded with the doc to time this visit so that she would be out and healthy enough to drive to Costa Mesa for Thanksgiving. 



Fortunately we did arrive soon enough to get it started tonight.  Actually, as of 6:30pm they have not yet started.  But the drugs were ordered and should be here soon.  As I told Lorelei, any bartender that takes this long to mix a cocktail does not get a tip from me.



Special Genetic HLA Match Edition

At the Kiva on a Nice Cool Night

Got a phone call from the oncologist today with results on the HLA matching from Toby and Robin.  This is potentially huge news, because with a match we go through only one Consolidation treatment followed a month later by the stem cell (bone marrow) transplant.   If neither sibling matches, they'd have to search the Bone Marrow Donor registry.  That would add a couple months and another consolidation or two to the treatment plan. 

S'more  time

So we were really hoping for a sibling match.  Heidi was also really hoping for a completely other reason.  Seems she has these memories as a kid of her relatives and parents' friends insinuating that she was adopted.  It's really pretty silly.  You'd agree with me if you saw Heidi with her new hair style and her brother together. 

I have cow-orkers who have been offering to join the bone marrow registry.  There really is no reason to wait, with or without a sibling match.  But as I told Troy at work today, "I really don't want any of your DNA in my wife, regardless of benevolent intentions."  Hey, Troy, ya know I love ya, man.  :^)    I also learned at work that you can write anything you want as long as you put a smiley face afterward.

This whole leukemia-chemotherapy thing has the potential to bring the skeletons out of the closet.  After shaving Heidi's head, Kristi the Head Cosmetologist (pun intended) remarked that at least she wasn't dropped on her head as a child.  Nicely-shaped head without any noticeable dents.  Reassuring.

Heidi was convinced that if neither sibling matched that would be vindication she was stolen from a gypsy family as a baby.  No, maybe I have that story wrong.  Anyway, vindication of adoption. 

In summary, lack of sibling match would be bad news on several fronts.  Vindication of adoption and DNA from my cow-orkers.  Skeletons from the closet and then much, much worse.

The oncologist called today and gave us the news.  Heidi called me right afterward and told me the good news.  Then she called both daughters, her sister, her dad and her bro.  She isn't adopted.  Toby is a good HLA match!  I immediately told Troy at work he should still register with the bone marrow registry to inflict his degenerate DNA on some anonymous victim.  We don't need you, Troy.  But I still love ya, man.  :^)

I'm sure, in the future, I will be blaming Heidi's idiosyncracies on Toby DNA.  But for now, I'm gonna try hard to bite my tongue and tell everyone that Toby is in the top two of my favorite brothers-in-law.  Ya know I love ya, man.  :^)  We know Heidi was not dropped on her head and she wasn't stolen from gypsies.  We're all smiles.

And to Robin, I apologize for the news that we cannot rule out the possibility that you are adopted.  I highly recommend you don't shave your head, lest you find out about the time that . . . oh, never mind.

And she'll have fun fun fun until her doctor takes her liberty away

At A Steak in the Neighborhood (restaurant
in downtown Tucson)

Dinner and a show last night.  Yes, I couldn't let Heidi show me up in the hat department.  Nice steak dinner and then opera.  Three weeks ago I went to the opera by myself—definitely not fun, fun, fun.

Yesterday morning we hiked in Catalina St Park.  Heidi did phenomenally well, considering last week she was too weak to leave the sterile 3NW wing of the hospital.  Considering two months ago she was too weak to walk up the driveway.  We tried to reach Romero Pools.  Heidi didn't make it all the way, but she got damn close.  She stopped after several miles, up a couple thousand foot elevation gain.  She stopped to rest and I ran ahead.  Only took me 10 minutes to reach the pools, but that was enough for Heidi.  After I came back to her, we headed back down the trail. 

Resting on the Trail

I'd like to ask the oncologists how many of their leukemia patients hike like that between Induction and Consolidation phases of chemotherapy.  I'm guessing not (m)any. 

Today was a trip to Phoenix to watch the Seahawks move to sole possession of first place in the NFC West.  Just for the skeptics among you, I should point out that most of the people still there when the final gun sounded were wearing blue.  Mostly dark blue with that other shade of blue.  Blue on blue.  Lots of blues.  You get the point; no red.

I almost forgot about the doctor appointment on Friday.  That was pre-fun.  Actually, no surprises.  Heidi is going back in for Consolidation chemotherapy, probably on Wednesday.  The doctor is going to time it so that on Thanksgiving she will be out, but her blood counts shouldn't be too low to go see her family in Costa Mesa.  We'll drive to Costa Mesa—about an eight-hour drive.  That will make it easy to make last-minute plans based on her blood counts and the relatives viral status (that means no cold or flu symptoms).  I'll probably have to precede her entry with a can of Lysol spray and wipe everything with alcohol wipes.  We'll have a bottle of hand cleaner at the door for everyone to use.  It will seem like overkill to everyone else, but getting sick there would screw up many things, including our trip back to Tucson.

My hat is better, but apparently I need a fake flower on my lapel.
And the Seahawks Won.

The consolidation phase to 3NW at University Med Center will probably last a week.  She gets Cytarabine three times.  This is the same drug as one she received last stay, but at a higher dose and without Daunarubicin, the other poison she received last time. 

I'm trying to think of a clever way to end this post, but I'm coming up empty.  And it's late.  So I'll end with a heartfelt thanks to all you who watched the hair-cutting video.  Now up to 1130 viewings.  Probably won't be any more hair-cutting during the Consolidation phase.

Oh, and still no word on whether either sibling is an HLA match.  Should know this week.

Cute hats and viral videos

 

In the Backyard

 I really don't have anything new to write about.  More hats.  Same viral head shaving video.  Did I mention it has now been viewed 750 times?  I'm hoping for 4 figures. Tell all your friends.  And if anybody is interested, there's also a video of my head being shaved.  If . . . anybody is interested . . .


I went to work today.  Came  home early and we went to a movie. So much better than spending all my waking hours at the hospital.

Next week we should be back on the hospital schedule.  We see the doctor tomorrow.  Expecting him to say go back in the hospital for consolidation chemotherapy on Monday.  That should result in a 1-week hospital stay, followed by the usual creeping up of blood counts, followed by work, movies, shopping, restaurants, and other normal stuff.   Ahhhhh, normal stuff.

It's cute hat time

Heidi came home Friday afternoon.  Saturday we went to the mall and Target.  Sunday we went to Costco.  Yesterday she went to the grocery store.  Today, the post office and bank.  I was at work.  So far lots of normal stuff and it feels right. 

Next week it's back to the hospital for consolidation chemotherapy.  In that phase, she gets Cytarabine 3 times over 5 days.  No Daunarubicin, so it's milder than last time.  Should be in the hospital only a week, and then home to do normal stuff again.  Ahhhhh, normal stuff.  Much better than hospital stuff,  despite the fact that the nurses and staff at UMC do so well to make the whole experience bearable. 

If all goes right, we should be able to drive to S. Cal for Thanksgiving, but that depends on many things, including:  1) starting consolidation early next week, 2) getting out in ~1 week, 3) white counts recovering to road trip worthy in 1 subsequent week, 4) no sick relatives at Thanksgiving get-together. 

 

The hat in the photo above used to belong to Oddjob before Heidi stole it and added a dumb flower.  If I were Oddjob I'd be mad.

 

No test results on the possible HLA sibling match.  They submitted their samples almost 2 weeks ago.  Should know the end of this week or next.  If they match it means we should be at Fred Hutchinson in Seattle probably in December.  If the siblings don't match it will take another couple months to find a match in the bone marrow registry.  

Walking the Neighborhood

 

Cute hat number umpteen



Special Escape Edition

The head shaving video now has been viewed . . .

Doesn't matter anymore.  Heidi has been discharged and is home.  Repeat, home is where Heidi is.  No more posts.  Nothing to say that is G-rated.

Check back on Monday . . .

Month 1 and counting

There's a bit of a disagreement here on 3NW View Estates on the maintenance requirements for the sympathy shave.  Last week we both got our hair clipped . . . Oh, did I mention how the hair shaving video had gone viral?  Over 500 viewings so far.  Heidi thinks there a bunch of perverted people with bald-headed woman fetishes.  I'm a little disappointed nobody has yet asked to see my head shaving video.  It was also video recorded, people.  Like Duh!

After the famed hair shaving event (which was actually done with clippers—you who saw the video would know), my hair had the audacity to try to grow back.  Heidi's hair isn't really growing well.  Not uniformly.  But after a few days I was not looking sympathetic anymore.  So I took my home clippers and re-clipped.  I know what your next question is.  You want to see the video from my second clipping.  Unfortunately for you perverted people with bald-headed man fetishes, I did not record that event.

Bob, Baldy and Lori (umpteen-time visitor)

But I did clip the hair on my face too.  I didn't shave, of course, because Heidi is not allowed to shave.  It would be unsympathetic for me to flaunt my ability to shave while Heidi cannot.  And I am the very supportive spouse type who would never flaunt.  Some members of 3719 View Estates think I should be shaving anyway. 

Therein lies the disagreement. 

Unfortunately, I have very dark thick hair (see previous post on genetic predisposition of generations of hairy Armenians).  So my attempt to look the part comes across as more scruffy than sympathetic.  It's the thought that counts. 

So I'm putting it up to a vote.  Remember, now, that Heidi cannot use her Sonicare toothbrush or floss either.  If you think I should just use clippers on my head and face, vote that way on your November ballot.  If you think I should stop all hair removal efforts (including on my ears), stop brushing and flossing and flushing the toilet, please vote appropriately. 

Critical Bone Marrow Biopsy Results are in

Riding Inside, Dreaming of the Outside

The most important bone marrow biopsy in Heidi's Leukemia treatment was taken yesterday and the results were due today.  I didn't sleep much last night.  I couldn't work much today. 

But I did manage to finally get outta bed this morning and drive to see my bald girlfriend living in the penthouse downtown.  No, not that one.  After the big move, she is now my bald girlfriend living in a view penthouse downtown.  Heidi is either the floor favorite or the biggest whiner, because they gave her the only room with a view of something other than the next building.  She can see the beautiful West Tucson  Mountains out her window.  Then they gave her an exercise bike so she could look out the window and ride.  Perhaps I should use an acronym to refer to my BGLVPD. 

Before I forget, her room is 3719 and her phone number is 520-694-3165. 

This morning, while visiting my BGLVPD, the doctors said the results from the biggest bone marrow biopsy in Heidi's leukimic experience would be revealed today.  Dr. Pavvi [with a last name I cannot spell nor pronounce], playing the part of Vanna White, would reveal whether we would get what's behind Door No. 1, another month of re-induction treatment; Door No. 2, progress on to a 1-week consolidation treatment; or Door No. 3, . . .  Wait a minute, okay, play along for a moment and pretend there are only two doors and, yes, I know Vanna doesn't do the three-door thing.  Just go with it for the moment. 

Okay, 2 doors.  Door No. 1 is go back to the beginning; do not pass Go; do not collect $200.  Door No. 2 is to land on something cool like St Charles or Connecticut.  But not Electric Company; I never really liked the utilities unless you also get Water Works and then it's marginally worth it.  Because when everbody is buying houses and hotels raking in the rent, that paltry $75 per stay just seems kinda crappy.

Heidi, meanwhile, fresh off the viral head-shaving video experience (which, by the way, is now up to 457 viewings—I'm working on my Oscar acceptance speech), takes this stuff all in stride. 

So I'm at work all day trying to concentrate, but not really getting anything done.  Heidi, fresh off the viral head-shaving video , says she will call me when Dr. Pavvi [ _______ ] delivers the pivotal results.  Finally about 3pm I call her and ask whether she has the most important results yet.  She says her friend Gigi was visiting, and before that, Lori was here.  Lori, by the way, wants me to point out that she is the frontrunner for most visits by a long shot.  I won't quote a number because she will go out of her way to tell me how badly I underestimated, detailing every facet of every visit made to date, all while on another visit.

Where was I?  Oh, then Heidi asked me when I was leaving work to come visit (yes, Lori, more times than you, neener neener neener!), and I asked if she wanted anything from Safeway.  See, almost every day after work I drive here to the hospital, but stop at Safeway for beer and sometimes food.  You read the order correctly:  beer, and sometimes food.  The past week I have also shopped for a bag of Halloween candy.  The nurses love to visit Heidi, perhaps because she is the floor favorite, or perhaps because she is the biggest whiner (no, maybe not because of that), or perhaps because there is always a bowl of halloween candy in her room. As an aside here, let me point out there is a fourth possibility.  They might be visiting Heidi just to be closer to me. Yes, there is candy, Heidi and a view, but let's not forget the wild card:  me. I'm just saying . . .

But I digress.  Heidi told me today on the phone, while leading up to telling me the biggest bone marrow result, that Lorelei had eaten all the chocolate candy from the candy bowl.  Yes, Lorelei, the famed video camera operator from the famous viral head-shaving video.  So I bought a bag of Reeses, because the way I see it, the more nurses that come to visit Heidi for candy, the more nurses come to visit Heidi to take care of her.  It's a win-win.  Actually, not so sure about the first win, because all the candy makes Lorelei kind of hyper, and then she goes on a sugar crash, and then I have to threaten to call her mother and tell of her poor food choices.  She is now in Minnesoota visiting said mother who will surely discover said bad food choices, because, after all, you can't hide anything from mom.  And, yes, it is me calling out bad food choices when I stop at Safeway for, and I list this order intentionally, beer and sometimes food.

But I still digress.  Oh, and I did pick up a nice quart bottle of Stone IPA too.  Drank it with some packaged Safeway sushi and watched the sun set over the West Tucson Mountains out the best view window on 3NW.  Finished with a little bag of Reeses Pieces.  Thank you nursing staff for spoiling Heidi!

But I digress further.  The biggest bone marrow biopsy results were delivered to Heidi this afternoon.  Now, bear with me here, O Gentle Reader, for I wasn't there to get the results from Dr. Pavvi [ ___________ ] myself.  But according to Heidi, and she may have been paraphrasing Dr. Pavvi [ __________ ] here just a smidge, the results were Oh, yay!  Now, I'm not an expert at Heidi-speak, but I believe that is much better than Oh, damn!  It is, in fact, what's behind Door No. 2. 

Indeed, Heidi relayed that Vanna, I mean Dr. Pavvi [ __________ ] said the bone marrow extracted yesterday was visibly clear of leukemic cells and had a blast density below some critical threshold.  Clearly Door No. 2.  Now, Let's Make a Deal fans, let's be clear here that it would be better to have a blast density that is lower than a snake playing handball with a curb.  So this isn't the best results possible, but it is Door No. 2 and it is Oh, yay.  The way I see it, it's kinda like playing slow-pitch softball starting with a 1-1 count.  It's still possible to get a hit, round the bases and make it all the way home, but it's a little harder than starting with no balls and no strikes.  Or maybe that's just a bad analogy. 

So, to recap, my BGLVPD, channeling Vanna, said Oh, yay. I bought candy, drank beer, ate bad sushi, and plan to sleep better tonight.  Say goodnight, Scott.