Good news from the Medical Team

The decline is when the poison hit home

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

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

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

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

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

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

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

Blood Moon Rising (and other bad cultural references)

Noooooo, not the chopstick treatment!

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

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

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

Robin's Bday Party at Benihana

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

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

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

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

The Hair Chronicles

The view from our porch

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

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


Heidi pointed a camera at me—her fault





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

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

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



My beer fridge isn't working very well

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

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

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

Not a whole else to report. 

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

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

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

Head shaving, take 2

Before

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

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

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

 

Hmmmm . . . should I shave my face too?



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



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

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

Yes, Alex, I trimmed my ear hair too



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

Day 9 and no fever

Cherry trees in the quad are angstroms away from blooming

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

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

Team Heidi Ho at The Big Climb

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

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

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

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

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

Late evening at the clinic

Cocktail Hour at SCCA

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



Waiting for an appt with the vampires



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

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

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

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

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

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

June 20, Here we come

Heidi, Alan and DD brought dinner and cookies

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

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

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



That's threading the needle

Puke free since Chemo Three? Yessir! Heidi sure is still . . .

NOT!

This morning began normally here at PGH.  Heidi left for an 8am appointment at the clinic and I left for an 8:30am St Patrick's Day Dash at Seattle Center.  I walked to the starting line in the rain, ran the 5k in the rain and was looking forward to the indoor beer garden out of the rain.  Unfortunately I forgot to take I.D. so I was turned away at the door.  Damn!  No wonderful microbrew Irish stand-ins for me.  So I walked back home in the rain. 

Stay with me, Kris, for we will get to Heidi here.

Sitting at home, looking forward to a hot shower, I get a call from Heidi telling me she threw up at the clinic.  So I put my wet raincoat back on,  dry shoes and socks, and walked in the rain to the clinic.  Heidi was ready to go so we walked back home.  Turned out she just took her plethora of pills on an empty stomach, but it does ruin her puke-free streak.

Got my shower and enjoying reading the sunday paper when the pharmacy calls and says they have new bags of magnesium and Tacrolimus, aka FK506, aka ED209.  So I walk back to the clinic, not in the rain.  Turns out they can't mix Tacrolimus in advance because it only has a 24-hour shelf life.  So I wait 30 minutes for them to mix and dispense.

Got back to the apartment about the same time Dana and Katrina arrived for a visit.  With brownies, mmmmmm.  Unfortunately I forgot to take photos, but we did shoot this cool video of us dispensing a unit of Magnesium (Heidi is in the video; just watch and see).  (Everyone notice I was able to transfer the video to a computer and upload to Youtube the same day?  And some people make fun of me bringing 4 computers here!)  Then the pharmacy called again and said her levels of Tacrolimus were too high and we needed a new bag with a lower dose.  So I suited up again for the trip to the clinic.  I had no dry shoes left so I went barefoot.  Since the steep roads are slick with moss I had to wrap my feet with barb wire for traction.  That did the trick, especially on the uphills, which it is both ways. 

The pharmacy informed me that they changed their minds and the original dose of Tacrolimus was okay for tonight.  Oh well, at least I didn't have to wait for 30 minutes while they mixed.  So I walked back home, uphill. 

Sorry, no photos today.  Only mere words can describe the events.

Escape from the Hospital

The Goods

The "goods" arrived and started infusing around midnight.  Finished the third bag around 8am.  Yes, three bags full.  I told you the donor had a large volume pelvic bone.

Still no more info on the donor.  Do you think she can tell we're talking about her?  All we know is she is 54 and has O-negative blood.  And has large volume bones.

Meaning Heidi is now a chimera.  She has some O+ blood and some O-.  Over the next few months her existing stock of O+ blood cells will expire (they have a limited life) and her new marrow will start making more O- until that is her predominate blood type. 

The big news is that Heidi is being discharged from the hospital.  Since the hospital is for sick people and she has no fever, she's getting kicked out.  We don't know how long that will last—as soon as she gets a fever over 100F or any of the other F's she gets incarcerated again.

Trying to remove a glove from my bro' David's ear

When the doctors came in for the morning evaluation and started discussing whether Heidi should stay, I piped up and told them that since the hospital is for sick people and Heidi isn't, she should get discharged.  At that point I could hear them thinking, "hmmm . . . he's not a real doctor, but he does have a master's degree—in science!"  And with that, they agreed.  Time for this one to come home.

Actually, it didn't play out like that at all because I wasn't here.  But that's the way I'm gonna remember it.

I didn't get to see the bone marrow bags either because I wasn't here at the right time.  Heidi said she couldn't get a good photo because of trying to sleep but people bothering her every hour. 

Welcome to Day Zero

Thick Heads Require More Radiation

Day Zero, here we are.  It's actually Day 32 at SCCA.  If this was Induction Chemotherapy it would be called Day 7.  The whole day counting problem is a difficult one. If you think I feel like Augustus, indiscriminately inserting months like July and August into the calendar, you're right.

So tomorrow will be . . . not Day 1.  Tomorrow will actually be Day 0 again.  Why is that?  It's not because we are stuck in a time warp.  It is because the bone marrow is arriving late tonight.  It will take a few hours to infuse which means it will be tomorrow (Day 0) by the time it is done.  I think they just like us so much they want to keep us here longer.  Regardless, I'm identifying more with Augustus Caesar than Frank N. Furter so we're not doing the time warp again.


Dress like this to keep the
radiation zombies away



It's late, I'm at the hospital and the last shuttle back to SCCA has already left.  I got the Sound Transit system figured, I hope, so I can catch that from Montlake & 520.  Not much time to write, and less to proofread.  Mistakes R Us.

Heidi is on 8NE, room 8254 at UW Med Center.  Nice view of campus.  Can see Husky stadium, Lake Washington, the Cascades and Mt Rainier from other parts of the floor.  This is the top floor, so don't ask me about other stories.  Phone 206-598-3924.  Visiting hours 8am-9pm I think.  Anybody over 2 who is not sick can visit.  The decision to stay past saturday will be made saturday.  I'll write tomorrow night.  Or call and ask.

Heidi ate dinner tonight, and is feeling much better.  Those of you who called but were ignored should try again.  She is feeling much better.  She is not allowed off the 8NE floor while she is here. 

Beam me, Scotty

The doctor came in a while ago and said she would start feeling worse soon.  Neutropenia from the chemo and radiation will take its toll.  That didn't bother her much last time, but the treatment this time is much more severe.  The radiation people were nice.  Not at all like the people in atomic era B-movies that try to eat your brains.  The let me look around and showed me the klystron for the accelerator and the beam director.  Cool stuff.  Heidi came out medium-rare at best.  Just kidding, it didn't have any observeable effect. 



Bow Down



Cocktail hour at Pete Gross House



Spent the day sleeping and not eating

Filling the pill boxes is tiring

Most of the day (except the sleeping on the couch part) went something like this:
Would you like some toast?
no
Milk?
no
Cereal?
no
Water?
no
Herbal tea?
no

It was like that most of the day.  We did make it to the clinic this morning.  Heidi actually took the elevator instead of the stairs to the fifth floor for the first time.  I guess that's allowed when the neutrophils and blood counts are down.  Came home and slept.  When she awoke, we talked some more.
Rice?
no
Grapes?
no
Cheerios?
no
Juice?
no

I need to stop writing here to help hook up the Tacrolimus, aka, FK506, aka ED209 from Robocop.  It's our first time pumping fluids into her Port O' Petty.  It will be difficult to photograph while making sterile connections, but I'll try.

Originally we were to have two visitors today, but we turned them away based on general blahness.  As I write this, Heidi is actually conversing on the phone.  There is actually some semblance of spunk in her voice.  Maybe she's feeling better.  She has four different nausea medications to choose from:  a little square one, a white one, the pink funny shape, and the big pill.  They have other names which are hard to pronounce, but my names are more descriptive.  Unfortunately they don't prescribe the good appetite enhancement drugs.

How about some bread?
no
V-8?
no
little white nausea pill?
no
Chocolate?
no
Nuts?
no
Water?
no

. . .
I might eat some ice cream.

Puke free since Chemo Three

Even talking on the phone is too much work

More nausea and less energy after Day 5 of chemo.  Tomorrow is a "rest" day and then Friday is Irradiation day.  That will be the biggest test of "Iron-gut" Heidi.  So far the chemo is putting up a good fight, but Heidi's new mantra:  Puke-free since Chemo Three is still holding true.  Can she remain true to it after TBI?  Stay tuned.

In full disclosure, I must point out that the last time Heidi puked was after her second round of chemotherapy when she got the Klepsiella infection.  But mantras don't sound strong unless they rhyme.  So while it is technically true she is puke-free since chemo two, her new mantra is Puke-Free since Chemo Three.  You're gonna be repeating that to all your friends tomorrow.

In keeping with Patient Safety Awareness Week, let me tell you about what they refer to at the clinic as The Three F's.  These F's are not the F's you are thinking about right now, and don't pretend that you aren't.  They are Falling, Fever and Frowing up.  The nurses, doctors and caregivers are always asking Heidi about any F's.  So far she hasn't f__in' done any of them.  Hopefully it stays that way. 

It appears I have nothing of import to blog about.  Heidi ate very little and napped most of the day.  Her blood counts are falling and her pill count is rising.  But fortunately no fevers.  Or falling.  And no talking to Ralf on the big white Fone.

Thank you to everyone who tried to contact her recently.  She's laying low for now.

Blah, blah, blah

Happily receiving chemotherapy

Don't do drugs, kids.  Heidi has been on a particularly nasty IV brew the last 3 days and it's causing some issues.  Loss of appetite, loss of energy, and pretty soon, loss of hair.  I would recommend against ever doing IV poison. 

The good news is that she only has one more day of this noxious cocktail.  Wednesday morning is the last chemotherapy infusion, followed by a walk-through at the radiation facility. They should allow photos in a walk-through, right?  Stay tuned for an exposé in a future episode.

Tomorrow afternoon is nothin'.  Except maybe a trip to the Seattle Aquarium.  We're hoping to go on a free pass from SCCA.  Thursday is a day off.  And by "day off," they mean no poison or radiation.  What do you do on your days off?  Heidi recovers.  I supposed you could call your weekend a recovery too, but it's a different recovery. 


At Seattle Art Museum



Oh, and "day off" does not mean no trip to the clinic.  Heidi gets her first dose of Tacrolimus.  Some people call it FK506.  Whenever I hear someone say FK506 I always think of ED209 from Robocop.  Similar?

First dose of Tacrolimus Thursday morning at the clinic.  Thursday mid-day Lori McD visits.  Thursday eve we get to do our first at-home pump with the second bag of Tacrolimus.  DD will be here to photograph because I'll have my hands full maintaining sterile connections.  That's a day off.



Friday is not a day off and not a day of more poison, so it must be . . . Correct!  Radiation.  200 cGy of gamma rays.  That should be over around 1pm.  Then we wait for the bone marrow to arrive from the large pelvic bone donor.  That is expected in the evening, depending on how long it takes to ship.  The donor will be getting drilled Friday morning; it's packed and shipped and arrives the same day.  Heidi will check into the hospital and receive it that evening.

Saturday morning she gets her first dose of Methotrexate.  It's actually another chemo drug, but given in such a small dose it doesn't kill blood cells.  It only maims her immune system to reduce Graft versus Host reaction.  Everybody staying with me so far?  At that point Heidi might come back to the apartment, or might stay in the hospital, depending on how well she feels.

Enough of that clinical stuff.  I realized that nobody can read the blog comments except me.  There also is no way for me to reply to comments.  So they just sit there.  But I really appreciate them, so keep them coming.  I read them and react in subsequent posts.

Kris, who lives in Samammish with her husband and two lovely girls, sent me a surprising message.  She said the girls' basketball team voted to donate their end-of-season coach gift money and trophy money to Team Heidi Ho.  This is our team that is climbing 69 floors of the Columbia Center to raise money for the Leukemia & Lymphoma Society.  This kinda blows me away.  I coached our daughters for many years in T-ball, softball and soccer.   Such a heartwarming gesture.

When Team Heidi Ho is climbing on March 20, Heidi will be in Day 9 post-transplant.  She will very likely be incarcerated in the big house (UW Hospital) then.  The team page is at http://www.llswa.org/site/TR/Events/BigClimb?pg=team&fr_id=1160&team_id=36200

The Blackwell Bobcats

Port in, drugs mounting



Overwhelming Drug Numbers

 Dr Petty surgically implanted the Hickman port, which shall forever hereafter be known as the Port o' Petty.  I told Dr Petty this would be its new moniker and he didn't seem to appreciate the gravity.  I told him twice, "Doc, it is called the Port o' Petty, the next generation Hickman Port."  His only response was that it had a Haitian sound to it.  Obviously a man in need of a PR agent.  Perhaps he was not accustomed to new acquaintances making outhouse references to his name.  Perhaps he hadn't met people like us before.  Just for the record, he was a cool guy, who personally worked with Dr Hickman.  He doesn't deserve any of my derision, but that's all I got.

The port formerly known as Hickman was installed yesterday.  In the same operation they removed the inferior Power Port.  If there was a way to conduct a poll, I would want to know your opinions on what sounds more like a port worthy of bone marrow transplant: Power Port, Hickman Port, or Port o' Petty.  Any of you who feel strongly may post a comment to this blog with your vote. 


Merely Whelmed



Where was I?  Ah, the port formerly known as Hickman Port O' Petty.  Yesterday started as many do here.  It was raining when we awoke so we put on our running rain coats.  By the time we made it downstairs to start running, the rain stopped and we ended up running overdressed.  So when we walked to SCCA, we wore our springtime coats and enjoyed the sunshine.  While I was in the waiting area and Heidi was in surgery, I worked on my work laptop and watched squall after squall interspersed with sunbreaks pass across Lake Union.  About the time Kari reported on Facebook snowflakes were falling in North Bend, there was thunder and lightning (not necessarily in that order) outside SCCA. 



Three hours later Heidi was done with her surgery.  Dr Petty came out to collect me, showed me the x-ray (wouldn't give me a copy, dammit!), and took me back to Heidi's recovery area.  She was eating saltines and drinking ginger ale.  This really angered me because I have offered to buy her ginger ale many times in the past and had always been rebuffed.  Oh, but when the nurses offer it, it tastes so much better.  Sheesh!



Should I title this one: Chemo Girls Gone Wild
or
The only girls who will flash me have tubes coming out of their chests



As we were waiting at the pharmacy for oxycodone, I noticed it had stopped raining.  Good, I thought, because we were still without raingear.  But by the time we got the drugs and made it downstairs, it was pouring and blowing.  Horizontal rain without raingear made us a little wet on our one-mile walk back to Pete Gross Home.  Good way to break through the grogginess from Michael Jackson drugs, says Heidi.



Today we collected the extra set of chemo-preparation drugs and took classes on cleaning the port and operating the pump.  There is a lot of do-it-yourself involved in this course.  A lot of it I get to do.  They will give us one-liter bags of salt water and I get to hook it up to Heidi's port.  They have this cool battery-operated pump that we get to program to dispense at the correct rate.  We'll also get to dispense anti-rejection fluids and supplemental stuff like magnesium and potassium.  Once a day we get to flush the port with saline and heparin.  I get to help.  Once a week we have to change the bandage around the port.  I get to do that too.  They really put a lot of the onus of care on the caretaker helper.  That's me!  So although some people think this blog is only an excuse to write about myself, I am an important part of this procedure.  This would an opportune time to imbed a photo of myself, but unfortunately the only photos we have of me are the ones I have taken.  Refer above to the drug regimen of the merely whelmed.



me



Ah, breaking news:  Heidi read the above and shot multiple photos of me blogging.  Not my most photogenic moment unfortunately.  Maybe it was guilt from the ginger ale comments.

New details about "conditioning"

Jan & Heidi bookended by Scott and Great Scott

First of all, "conditioning" is a euphemism for poison.  It's a specific poison, or specifically, two poisons.  Treosulfan and Fludarabine to use specificity.  Oh, don't forget the Total Body Irradiation.  Heidi isn't.  They call that one TBI because they love the TLA (Three-Letter Acronyms) so much. 

All this fun for Heidi starts Saturday.  Tomorrow she gets her new Hickman port.  Dr. Petty, who is installing it, was personally trained by Dr. Hickman, of Hickman Port fame.  But we won't be calling it a Petty Port.  No, it will be forever known as the Port o' Petty.  I just made that up just now.  Heidi didn't even laugh, but I can hear you laughing.  If there was a TLA for the Port o' Petty it would be the PoP.  You're still laughing; don't deny it.

Apparently I don't get to video record the PoP installation, but I did get a video of a float plane landing.  I have a cousin from Wisconsin who many years ago was amazed to see these airplanes landing and taking off from water.  I was never sure if he was serious.  I told you I would be monitoring the seagulls and float planes—this video proves both.

Dinner at the apartment with Alex, Cody & Cale

I also don't get to video record the TBI.  But I did find out they use a linear accelerator to generate gamma rays.  The TBI is supposed to reduce the incidence of cancer recurrence.  They formerly used Cobalt 60, which has been used in food radiation.  The linear accelerator is much cooler, and easier to ship across state lines.  Heidi will be getting 200 cGy of radiation.  Back in my day when I worked around linear accelerators (well, not directly around them) we spoke of Rads.  The Gray supersedes the rad, according to the NIST (that's a four-letter acronym—look it up yourself).

Dr. Riddell had nothing but good news from all the tests.  He said the bone marrow cancer is in complete remission, the spinal tap was negative and Heidi passed all other tests.  And when I say "all other tests," I really mean all other tests.  They tested everything from bow to stern, if you know what I mean.  And I think you know what I mean.  Heidi's first question after these kinds of reports is, "does that mean we can go home now?"  Then they look with that blank they didn't teach me in medical school how to answer this one stare.  Regardless, we are all systems go to start "conditioning" Saturday.

We also found out the large volume pelvic bone donor who is kind enough to give up 900 cc of bone marrow is a 54-year old woman with O-negative blood.  Heidi is O-positive.  Blood type is very important for transfusions, but apparently completely unimportant for donating bone marrow.  Heidi will slowly transition to O-negative over the next several months.  Those of you schooled on the Rh factor will remember it was named for Rhesus monkeys, meaning Heidi will be transitioning from a positive monkey to a negative monkey.  For those of you who are taking this seriously, remember I am not a doctor, nor have I ever played one on TV.

Nobody on the medical team would confirm nor deny my assertion that the donor without access to an apharesis machine is a large-boned person from a developing country.  We might find out in a year, if she decides to divulge her identity. There is circumstantial evidence she is not from another country, in the form of no international shipping instructions.  Okay, that is kinda dispelling my third-world origin theory.  Some would go so far as to claim it is not circumstantial.

On the subject of not being a doctor, Christy, who is a floater nurse (she would neither confirm nor deny that all other nurses are sinkers) asked me after just a few minutes of conversation if I am an engineer.  Should I be insulted?  That's the second time lately that somebody just outta the blue asked me if I'm an engineer.  I should have replied that I am not a doctor but I have a Master's degree.  And I'm not a sinker engineer.

Oh, here's a video of Canada Geese and their poop.

And here's a video of running across the Fremont Bridge 

Here's one more from the South end of Lake Union.  It is sunny here sometimes.