The schedule is set

We moved into a real apartment at the Pete Gross House.  The mailing address & phone are

525 Minor Ave N Apt 311

Seattle, WA  98109
206-262-9026

I could tell you about running along the ship canal, but naaaaah . . .  More importantly, we have a new schedule from the medical team.

Walked down to Pike Place market yesterday and saw these mongers throwing fish.  I actually held a video camera on the entire scene, which is something only tourists can do.  Stopped at the original Starbucks too.
 

Under the Aurora Bridge



Lunched with my family Sunday.  Had such a good time talking we didn't even get around to cranking up the karaoke machine.  Nope not a storyline there.  Oh, except a few family members had colds so I told them they couldn't come.  I can be an ogre like that to family.  And friends.  And not-so-friends.  No cooties.  I'm talking to you.

Heidi is still slightly neutropenic, but getting better.  Red and white cells are almost normal.  It will be much easier on me during our morning runs when they start killing her cells again.  Hopefully it will slow her down on the hills.  And does this place have hills!



Fred Hutchinson in the Foreground



Oh, we did get some bad news on one medical test.  Heidi had a negative result on her pregnancy test.  Yes, they test for everything.  Okay, technically not bad news, just negative news.

The medical team likes to ask about Heidi's exercise regimen.  Today, before delivering the new treatment schedule, we told them about runs along Lake Union and up to Volunteer Park.  Kyle, P.A., said her pulse was almost tachycardiac because it was up to 48 bpm.  That was because there was little time to rest after walking up the six flights of stairs.

Lake Union from an overpass over I-5

Decades ago, my bros and I spent many Saturday mornings at Volunteer Park killing time doing I can't remember what waiting for dad to finish work.  Heidi had never been there before and really enjoyed the gardens and views.

Before dinner, speaking of stairs, we stopped back at the clinic to pick up the latest antibiotic du jour.  I climbed stairs while Heidi waited in line at the pharmacy.  Previously I had told you we walked to the sixth floor.  While Heidi scored some drugs, I repeatedly climbed to the 7th story and beyond, but that's another story.

We have some information on the new donor.  Very little actually.  We know she matches 10 out of 10.  That's all.  She's a she; we know that too.  But nothing else.  Oh, one little clue that makes my mind wander a little.  Turns out she is donating bone marrow, not stem cells.  This is kinda interesting, and gives me more verbiage to intersperse around photos.

Looking West along Mercer



The donor's medical team is going to give her general anesthesia and drill four separate holes in the back of her pelvic bone.  Then they will extract 25 syringes of bone marrow from each hole.  That's right, 25 extractions from each hole!  This will produce ~900 ml of bone marrow from this procedure.  How many of you think that is not better than the new-fashioned way where they extract stem cells from an arm vein?  Heidi is reading over my shoulder and correcting me, saying it is not four holes, but a bunch.  Okay, Heidi, may I keep writing now?

Okay, but 900 ml?  For the metric-challenged, remember that a fifth of whiskey is 750 ml.  So they will extract more bone marrow from this poor lady than will fit in a whisky bottle.  Heidi's response to this is that she will have to send this person flowers some day.  If we ever find out who or where this person is.



If I may digress here, this raises some questions in my mind.  Now stay with me, Kris, for although this will now digress into a discuss on me, it will come back to Heidi in time.  Those of you who remember my blood donation experience and the vampire blood tech commenting on how their apheresis machine was modern but my experience elsewhere was with old-school equipment.  So now I see three levels of the technology universe:  modern apheresis machines, old-school machines, and places where people get drilled in the back a hundred times because they have no access to apheresis machines.  I asked the medical team what third-world country this donor was from and they claimed she was donating this way because of choice, not necessity.  I'm still picturing a very large-boned person (pelvic bone volume greater than a fifth of whiskey) from another country. 



Living on a houseboat is allegedly good for those who are sleepless



Ate dinner with Bob & Kari Saturday at a great restaurant, Sips, in Issaquah. On the way to Issaquah we drove across another floating bridge.  That's right, a bridge made of concrete that floats on the lake.  Amazing!  From the middle of Lake Washington it was so clear we could see from Mt Rainier to Mt Baker and all the Cascade mountains in between. Spent the whole time at dinner catching up on old times.  (To recap, whole time—>old times.)  After they went home, Kari read the blog and joined the bone marrow registry (she doesn't sleep much).  

Phyllis, our Tucson neighbor, also joined the registry some time ago, but I keep forgetting to mention it.  So I'll mention it now.  Oh, I just did.



As I said, the schedule is set.  But I can't tell you yet because I have more view photos to show.  I would have liked to show the flying fish video, but it wasn't that good.  Oh, darn, I'm out of photos.  Okay.

March 5-9:  chemotherapy

March 10: rest

March 11: radiation and bone marrow injection

Oh, found this one last photo.  The Fremont Bridge and the Aurora Bridge.  The Fremont bridge has a troll under it, but photos of it will have to wait for a future episode.

Be a Perfect 10 match

The finest chapeaus on the South Lake Union
Trolley this evening

Bo Derek must be making a comeback because a perfect 10/10 match has been found!  Before we left Tucson in January there were a number of paltry 9/10 matches; y'all already knew that stale news.  Apparently they were still searching for a better match and now one was found.  We don't have any details about this mystery person, but apparently we can unfriend the chick in Germany whose antigens could only muster 9 out of 10 the same as Heidi.

The world of HLA matching is kind of interesting.  If you want to get all mathy, peruse to the BeTheMatch site or this Stanford site.  The chance of a single sibling matching is only 25%, which means that maybe Robin is not adopted.  Siblings either are a perfect 10/10 or they don't match at all.  With strangers there is a vast grey area from zero to a potential 100%. 

Not much happening on the treatment front.  Heidi had only one appointment today, a blood draw to test her counts.  Her neutrophils are still low, which means we have to avoid sick people and suspect food.  Most of the big tests are complete and now we just wait for results.  This last-minute change in donors will delay the start of treatment by a few more days, meaning we have more time to vacation and play in Seattle.  The original plan called for not much happening next week with chemotherapy starting the first of March.  Not sure how much this latest development will delay things.

I've mentioned several times how disappointing it is to run across Broadway with no posse in sight.  Well, here is something even better, the SCCA Rap.  Check it out.

Also forgot to mention that when I gave blood on Tuesday there was a special page in the multipage disqualification notebook on Chronic Fatigue Syndrome.  The vampire tech working there told me it's been there since last June.  It wasn't in the Red Cross disqualification literature the last time I donated in Tucson.

Nice pair of lungs

I'm not looking at the needle in my chest

I mentioned the pulmonary test a few days ago that I wasn't in position to video.  The doctors walked in to the exam room and were complaining that Heidi had dissed their pulmonary test.  She measured 119% on FVC (forced volume) and 130% on VC (static volume).  I tried to explain to them that she isn't good at acting the cancer patient.  Then Heidi started explaining her run up Capital Hill the previous day across Broadway (still no posse) and back.  I could see the universal deer-in-the-headlights look around the room as Heidi expounded.

This was right after the nurse was grumbling because her blood pressure machine was showing a pulse of only 36bpm.  She re-measured with an old-fashioned watch and recorded 40bpm.  I told them it was a little elevated because we had walked up the stairs to the sixth floor. 



At Flying Fish restaurant with Robin & Tony



Every day she has an appointment we walk the ~1 mile from our apartment to the clinic, past REI, along Eastlake, turning on Aloha and arriving at the clinic to walk up the stairs to the sixth floor.  We used to walk to the seventh story, but that's another story.  I usually cart two laptop computers in my pack, one for work and one for home, a laptop charger, sometimes a camera or video camera, and on the last trip a geiger counter.  Heidi had some radioactive tracer injected for a MUGA test but it didn't register on my cold-war era ebay-purhased counter.  Damn!  Heidi thinks it's funny to point out that we brought 4 computers with us on this trip, but in my defense one of them is hers.

One way Heidi is acting the cancer patient is by becoming neutropenic.  Her immune system neutrophils were low in the blood drawn in the photo above.  This might be from the Vidaza chemotherapy she endured four weeks ago or maybe from the Sulfa antibiotic she's been taking.  They took her off the sulfa and will be measuring blood counts again tomorrow.  Hopefully they'll be down soon so we can have sushi.  Once serious treatment begins she'll be seriously neutropenic seriously limiting all sushi off the menu.  Seriously.

Raining on the singing

Rain isn't so bad when you can dress so cute

The weather gods were nice to us expatriate Arizonans for a few days, but you can't fool mother nature too many days in a row.  It started raining Saturday and hasn't really stopped yet.  It slowed to a drizzle a few times.  There are as many ways to describe rain here as the apocryphal 34 Inuit words for snow.

Kris called me out for making this blog about Heidi in title only.  She thinks I am using this as a vehicle to broadcast my favorite subject—me—to an audience held captive by Heidi and her battle.  Well today, Kris, I'm going out of my way to prove you wrong.

We've been running together most mornings since we left Tucson.  Heidi isn't approaching it with the same competitive attitude that led her through 15 years of competitive swimming.  Even her modern-era motivation, to eat more cookies, is waning now that gaining weight is really a good thing.  There will be times in the future she won't be able to eat, so some fat stores are now beneficial. 

At the Science Center Butterfly Exhibit

Since I signed up for the Big Climb for Leukemia . . . excuse me, since Heidi encouraged me to sign up for the Big Climb, which I am telling you because this blog is about her, I've been trying to find excuses to walk and run stairs.  By the way, did everyone notice that Team Heidi Ho now has 5 team members and has raised $1665?  Well, that's enough already.  Everytime someone donates I gotta write a thank you note and I'm getting tired of it.  So whatever you do, do not point your browser at the team page for Heidi Ho and donate money.  Just put away the Visa card and do not go to our Big Climb team site or my personal Big Climb site.



I've been running stairs . . . when I'm running with Heidi I've been seeking out stairs to do in addition to the straight running with her.  It's kinda like the movie Up, but instead of Doug the dog yelling "Squirrel!" I'll be running along (with Heidi) in formation and suddenly yell "Stairs!"  Then I have to detour up and down the stairs before re-joining Heidi in formation.  It isn't really like the movie Up because I have less ear hair than the old guy in the movie. 

 

Alex, Cale, Cody and Heidi at the Butterfly Exhibit

Today we ran hills, so I didn't have to do stairs.  We ran past REI (it's only 1 block away from our apartment!), up capital hill, across Broadway (saw neither my posse nor Sir mix-a-lot's), then up more hills followed by further hills.  Heidi then went to a dental exam and a meeting with the pharmacist.  I didn't go.  Sounded boring.  Instead, I went to the Puget Sound Blood Center to give blood.  Double reds, baby.  They seem coming with my elevated hematocrit and universal O+ and they just roll out the red carpet all the way to the apheresis machine.  Those outside the Puget Sound area need to go to givelife.org.  Because it helps people like Heidi who need transfusions, which is who and what this blog is about.

Extraction video extravaganza

Drilling for marrow into the back of the pelvis

Yesterday was boring day.  Boring as in hole boring, not tedium boring.  Heidi had her ninth bone marrow extraction, shown in the photo at left.  There is also a video of said marrow extraction.  Some might conclude this is indeed a boring video, but that shouldn't stop you from watching it.  Spoiler alert:  they don't use the same 1/4" electric drill you use at home.

Heidi also had a spinal tap, otherwise know as a lumbar puncture.  They have to look at the spinal fluid to make sure no baddies are hiding behind the blood-brain barrier.  That was not quite as fun to watch—no drilling.  But of course there is a lumbar puncture video.

The Olympics came out to provide a backdrop
for downtown and the Space Needle

Heidi also had a pulmonary function test yesterday.  This involves blowing into a tube while this large persuasive woman yells at you.  I think she was a former drill Sergeant.  This would have been a really good one to video record, but alas I didn't get it.  Sorry video fans.  Too many Kodak moments, not enough Kodaks.

Of course the most famous video, the hair cutting video surpassed 3000 viewings.  Still popular after all these months.

Lastly, I made a time lapse video of the view out our apartment window.  We've always been surburban types, but there are some nice perks to having everything you need within walking distance.  Petula Clark got it right:  when you're downtown you can forget all your troubles, forget all your cares . . .

Day 1 at Seattle Cancer Care Alliance

 Just a quick note to say we arrived in Seattle Monday night (so actually, this is Day 3, depending on how you count days) and arrived at SCCA yesterday.  (Hmmm, perhaps this should really be called Day 2 . . .)

Those of you who are unfamiliar with the gravity of getting the correct day count should refer back to the Day Counting Video.

We are living at the SCCA House, which is their short-term housing.  We are on a waiting list for the Pete Gross House.  Hopefully that will come through soon, because it will be a little more comfortable.  In the meantime, our address is

207 Pontius Ave N  APT 413

Seattle, WA  98109-5652

206-204-3702

Yesterday was an easy day at the clinic with just a meet 'n greet, a blood draw and a short physical.  Heidi said they took 14 vials of blood—they don't like to do things halfway here.  All that took only a few hours.

Today isn't much harder.  We reported to the clinic at 11am for an EKG.  Next is a meeting with finance.  Later she has a pulmonary test and some x-rays. 

Rest assured I will be monitoring the float planes and seagulls daily

So far the schedule isn't too bad.  I was able to log on to my work computer this morning and get some work done.  Still on a vacation mindset, though, so I need to start getting up earlier.  We located a Starbucks that is only a few blocks out of the way on our walk here; I can tell already that is going to become a much too regular habit.  Maybe we'll have time to do some grocery shopping later.

I think I forgot to send thanks to Karen and Laura W. for joining the Bone Marrow registry.  When this is all over I will have to count all the people who joined at Heidi's instigation.

Also, full kudos to those who have pledged to support me on The Big Climb.  Tom & Laura, Lisa, Shawn & Laurie, Hide & Audrey, Cindy, and Bill & Monica.  Plus others (including my bro, David) who have pledged support for Alex and Cody, my teammates for The Big Climb.  Heidi and I thank you, and so does the Leukemia & Lymphoma Society. 



Escape from Tucson edition, but not before getting a crown on a problem tooth because my dental insurance isn't good outside of AZ, and then the permanent crown was late so I couldn't get the dentist to install it until 8:30 the night before we departed

Sandwich with Heidi and Lisa

I wanted to see if there was a limit to the length of the title.  If there is, I didn't find it.

We're here in Sacramento.  Roseville, CA actually.  So nice of Lisa to share her abode with us for the night.  Tomorrow morning she's promised a run on a nearby trail with frogs, bunnies, snakes and other local fauna.

We spent last night in Costa Mesa with Toby & Laura.  Had a nice time visiting with them, Nikki, Kauai, Kylah and Kayden. 

Thursday night, our last night in Tucson, we ate dinner with Bob & Lori.  That was a nice way to spend our last dinner there.  Until 8pm when I had to leave for the dentist.  Not many dentists are open that late.  Our dentist had never been open that late either before then, but he made a special arrangement to meet me because the permanent crown wasn't ready at 3:30pm for my original appointment.

I realized a month ago that my dental insurance was only good in Arizona.  Originally I thought getting dental work done would be a good thing to do in Seattle when I will have a less rigid schedule.  With one month to go I called the dentist.  They could squeeze me in two weeks before our departure.  It takes two weeks to make a permanent crown, which means I would be getting it finished the day before we left.  One hour before my appointment they called and said it wasn't ready asking if I could reschedule next week.  No, I said, I'm leaving town the next morning; I need it today.  The dentist called the lab, told the crown maker to keep working until he was finished, drove over and picked it up personally, and told me to come to his office at 8:15 that night.  Fortunately it all worked out.

Oh, I need to say something about Heidi vs Leukemia.  I signed up (everyone notice how I pretended to change the subject to Heidi but am still talking about me?) for The Big Climb at the Columbia Center in downtown Seattle.  It's a race up the stairwell 69 floors, sponsored by the Leukemia & Lymphoma society.  I formed a team called Heidi Ho.  Alex and Cody are on the team.  Anybody else want to join?  Point your browser here for more info  Heidi Ho.

Heidi is good.  She has none of the sympoms she has shown at times over the past five months.  Well, no symptoms except SineadOConneritis.  I just made up that term.