Halloween Spectacular Edition

Here's to hoping Heidi's hair grows back pink

It's Day 27 if anyone's counting (I'm not).  Heidi's white count is up to 0.5.  She now has a non-zero ANC of 10.  Yay because it's non-zero; damn because it's still below 500.  It's all up to her bone marrow at this point.  It's a good sign that her counts were at zero for so long—it means the chemo drugs did their job.  The way they are creeping up slowly isn't good or bad.  According to the docs the rise in blood counts is just unpredictable. 

Our latest plan to get outta this joint is to get evicted for being bad residents.  Halloween provides the perfect backdrop for dressing and acting goofy.  For me, goofy is a synonym for annoying. 


All Halloween'd out





We started by putting on wigs—Heidi looking stunning in pink and I getting many comments in blue.  Then we went on a walk up and down the hall.  At first I was planning to just tie balloon animals out of rubber gloves (see photo above) and hand them out to the nurses working in the hall during our walk.  But then, thinking that wasn't quite annoying enough to get evicted, I put two balloon gloves inside my shirt.  The wig made me do it.

I've gotten kicked out of many
places for much less than this



I did manage to hand out 5 balloon animals during our 30 minute walk.  A chicken, a turkey, a punk with a mohawk, a hand with elephantiasis, and a scary jack-o-lantern.  Chuckles the clown ain't got nothin' on me.



The coup de grace for getting evicted was to borrow bunny ears for a provocative photo.  Heidi thought this extra step wasn't necessary.  I call it attitude enhancement.





A visit to my bald girlfriend living in a downtown penthouse

GI Jane after changing out of Camoflauge

Now that I have a bald girlfriend living downtown in a fancy penthouse, I can . . . uh, I can visit like I did before.  What could be better on a Saturday?  I suppose it would have been better if my football team had scored some points.  Maybe that's asking too much.

Heidi's blood counts are creeping up.  The Absolute Neutrophil Count (ANC) is still zero.  That's the one that determines when she can leave.  The white blood count is up to 0.5, which is the highest in two weeks.  It's progress. 

The latest prediction is to check out of this hoosegow maybe mid-week.  Then she gets a week of shore leave, with a return date with Donna Rubicin around the middle of November.  That hospital stay, called Consolidation, should only last a week, even though she'll be getting some of the same chemo drugs as this time. 



Who loves ya, baby?



On the HLA front, Toby and Robin submitted blood samples on Thursday.  It should take about two weeks to determine whether they match.  If they do, we could be at Fred Hutchinson in December. 



The whole shearing operation yesterday was an event enjoyed by all here on 3NW.  All except Heidi.  Well, don't take my word for it, watch the hair-shearing video.  I don't expect anyone to make it through the entire video, but you'll get a good flavor for the event by watching the beginning.  Be sure to listen for the soundtrack; I'm kinda proud of that little added touch.

Special Cosmotology Edition!!!!

My worst fears have been realized.  I have a misshapen head.  The way I see it, generations of hairy Armenians were never ostracized from Sheep Camp for having bad skull shapes because they always had perfectly coiffed head coverings.  Normally, guys with bad heads would have trouble attracting mates and passing on their bad head genes to future generations.  Generations of hairy Armenian men from which I am descended didn't have this trouble, because their misshapen heads were covered with fabulous hair.  

Before



Ah, but the Special Cosmotolgy Edition is not about me.  It's about the newest member of the cute hair club on 3NW. 




 






 

Mid-Process Enthusiasm


  

With the Mohawk Drag Chute



  

After







 

Near the End



 

Did I pretend it wasn't all about me?





How can you not give Noogies to

someone with a shaved head?



Week 3 gets a triple Yay

Corby, Steve and Heidi holding the remains of her Coiffe

For anyone counting, it's actually Week 3 plus a day, but that requires higher math and counting skills than I want to invoke which will lead to. . . okay, we've been there too many times.

We were told this morning that Heidi's white blood count went up.  The doctors came in on their rounds this morning and reported her red counts also went up.  "Double Yay" exclaimed Heidi.  "No, triple yay" replied Amit (whose name is also Dr. something I can't spell or pronounce), "your platelet count went up also."  This was amusing only because Dr. Amit _____ is not the type of person to exclaim, "Triple Yay!"  It is a sign that Heidi's enthusiasm has resumed and is even generating a surplus.

Holding other coiffe remains



It is also good news, perhaps, that her bone marrow is doing what it's supposed to do.  In this, I refer not to her enthusiasm but the trifecta plus-up in blood counts.  It may mean she won't need any more transfusions during this stint in the hospital.  I couldn't get the doctors to predict a discharge date, though.  Apparently my pension for planning has not overflowed and rubbed off on the white-coated ones. 

Heidi is still on the three different antibiotics, all given intraveneously.  The last one she started getting for the C. difficile in her gut.  The ironic part is that one of the possible side effects of the antibiotic is diarrhea, which is exactly the problem it is supposed to fix.

Color Coordinated

Okay, that's two jokes that were probably much funnier when they were told the first time.  Is everyone at least enjoying the photos in this post?

Okay, one more try.  Bruce gets a yay for donating blood yesterday.  He was all concerned about the question on the pre-donor screening about being in England at any time in the last 20 years.  Apparently they are concerned about people who could have contracted Crutchfield-Jacobs or taken a liking to vegemite.  Either can taint the blood. 

 

This is from a few days ago when Heidi was feverish,
but Monica is camera-shy so I have to include it when possible

This is my call out to everyone who might get intimated  by the blood donation pre-screening questionaire.  It can be very overwhelming.  They ask a lot of stuff that can make you worry.  But it's not worth getting too excited about.  If they screen you out, you just walk out to the snack section and eat their crackers and drink their juice and go home. 

The question on the blood donation questionaire that I always want to argue is the one about exchanging money for sex.  I have trouble answering that one.  I always want to ask the lab-coated ones if there are really people out there who don't pay in some way for sex.  Sure, most of us aren't actually exchanging dollars, but there is always some indirect payment, whether it be dinner or mowing the lawn.  So for the purposes of blood donation, I don't pay and I don't eat vegemite.  That's my story and I'm sticking to it. 

Day 21 and the fever is broke!

99 and Smiling

Heidi's temperature is down to 99F.  That's peanuts in the oncology wing.  They don't even blink for a fever that low.  They don't react.  They don't get excited.  They don't order more drugs.  They don't even discuss it in hush murmers, which is remarkable because many things get discussed in hush murmers.  They don't keep ordering body fluid cultures.  They don't do nothin'.  In fact, they don't even call it a fever.  They call it, well, they don't call it anything.  It's bupkis.  I'm gonna go over to Heidi's chart and write ain't got one in the temperature column. 

One thing they do do (ha! I wrote do-do) is keep up the antibiotics.  Once a medicine is started, they won't stop it without . . . I guess we haven't found out what it takes to stop an antibiotic.  Heidi is currently taking three.  I could list them all, but you'd get a headache.  Probably a latin headache.  I'm sure there's an -osis word for headache after reading drug names.  Look it up.  Ask your doctor for a prescription to cure a headache caused by reading your prescription.  Feeling circular?

It's been days since I discussed hair loss and haircuts and all things cosmetology.  Both of us still have all our curly locks.  Heidi's curly locks are partly in the wastebasket, and in this photo, partly on the bed.  This was taken a few days ago.  This pile is small by today's standards.  Every day she sets new standards for hair loss.  And every day I set new standards for retro hair styling. 

The Damaged Hair Goods

Just an aside, here, I've been accused of exaggerating the retro-ness of my retro hair cut.  I don't exaggerate.  Accusing me of exaggerating is the most rediculous claim ever made in the history of the english language. 

But back to hair loss.  Heidi's hair still looks pretty normal.  Normal for anyone else, but thin for her.  Still not in buzz-cutting territory, but getting closer by the day.  I thought it was going to be the end of last week.  Then I thought it would be over the weekend.  Now I think . . . well, only her hairdresser knows for sure. 

I was also asked again for the link to the Bone Marrow Donor Program.  That's a hot link there, underlined with the different color.  Your browser mileage may vary.  I received this interesting newsletter from the registry.  Might be interesting to some of you.

Sorry for the loopiness of this post.  I'm tired and going home.

Day 20 brings more fevers

Morning rounds with Dr. Jaeger-Meister Meister-Jaeger,
Erin and Amit

 Forgive me, O Gentle Reader, for failing to blog the last two days.  I just haven't had time to put my laptop atop my lap and write. 

Heidi has a fever, though that's not my excuse for failing to blog.  It doesn't require any extra care from me.  I am not excluded from her room.  All the staff who enter must gown up (see photo at left).  That is to protect other patients from Heidi's new communicable disease.  She has a Clostridium dificile infection which is giving her collitis.  She isn't a risk to people who are healthy and don't bathe, wash and poop in the Ganges river.  But other patients here are at risk.  Unfortunately, it's one of those bugs that is not uncommon in hospitals and not uncommon in someone whose normal flora is being suppressed by high-power antibiotics.  This is why most people eat yogurt when they are on antibiotics—it helps repopulate the gut with the good guys.  Heidi's gut has been depleted of the good guys so the bad guys, like C. dificile can move in. 

The best way to get well

She also has a rash.  It started on her back, but now it's spread to the rest of her body.  They tried benedryl, but it didn't help and just made her aggitated.  Now she's on Claritin, but it doesn't seem to be helping either. 

They finally found what it takes to make Heidi lose her upbeat attitude.  The formula for this includes fever, rash and making her hair fall out.  Oh, when it falls out, it doesn't do so nicely.  It doesn't fall out smoothly or evenly.  Her hair is dry and matted much of the time, partly because she is sweating from the fever. 

Her temperature was 105F when I arrived here at noon.  Now it is a little lower.  She is on three different IV antibiotics each given three times a day so she's hooked up to the pole (Javier) much of the time.

Let's see, I told about the hair, the rash and the fever.  What am I missing?  Oh yeah, how about a midnight room change?  Last night the plumbing started leaking in her bathroom.  It ran all the way across the floor and out the door to her room.  So the staff gowned up and started collecting her and her things and pulled them out into the hall.  They didn't have a room immediately available, so she had to wait in the hall until another patient who could be moved to another floor was moved out.  Then Heidi and her things were reassembled in her new room.  Room 3707, phone number 694-3153.

Room 3714 in quarantine lockdown

Her new room doesn't have a Lion King mural; it has no mural at all.  It also has almost no view.  Definitely a downgrade.  All of this plus having her sleep interrupted more than usual made her really groggy this morning.  She wouldn't even drink the Starbucks soy latte her brother brought this morning.  Today involves a lot of napping.  Or is it knapping?  I think her hair is knapping; she is napping.

On the plus side, it was nice to see Toby & Laura, who flew over from Orange County.  Alex, Lis & family drove down from Flagstaff, but unfortunately every time they offered to visit Heidi wasn't in a receptive mood.  That's okay, I'm glad she is learning how to say no when needed.

Good news.  It takes me so long to write that her temperature is now below 101F.  The nurses were threatening to pack her armpits with ice.  All it took was that threat to get her to cool down.  I'm going to remember that one for later.  "Heidi, if you don't put the toilet seat up afterward, I'm going to pack your armpits with ice."  Yeah, that's gonna work.

Day 17 delivers preliminary bone marrow biopsy results



Near the end of a 55-minute walk



The bone marrow biopsy taken yesterday produced some results today.  And the result is . . . unclear.  Several doctors looked at it under a microscope and saw no cells, which is good.  That means the poison did its job and killed everything it was supposed to kill.  But the machine-counted result was not so definitive.  It found blasts.  According to the doc, that could mean bad blasts or it could mean normal blasts.  The only thing that is clear is that Heidi is having a blast.

The plan is not to keep examining that sample.  Apparently it has given up all the information it has.  The plan is to do nothing.  Well, nothing for a week.  No more chemotherapy—just keep recovering.  Next week they will extract bone marrow again and test again.  That will be the sixth so far.  By next week those pesky blasts should multiply and show their true color more clearly.   For now we hang out and wait.



Nearer to the end of a 55-minute walk





Working Hard



Day 16 Bone Marrow Test

Heidi Doesn't like Port Maintenance Procedures

Whoever was counting days yesterday must have been drinking because I think I called it Day 14.  Fortunately I'm drinking again tonight.  The entire day counting thing just requires higher math than I can muster these days.  I hereby declare that until the Stone IPA wears off, it's Day 16.

I stayed here last night on a rollaway cot.  Not real comfortable and not real restful.  The nurses have a way of coming in many times during the night.  Late last night the nurse decided the port needle was seven days old and had to be replaced.  Cool because I was here to witness it.  Not so cool because it was an hour past my bedtime.  But it is very clear to everyone here that it is not about me.  And when I state that, understand that the english language is not sufficient to illustrate the gravity of such an understatement. 



This is what it looks like without the external needle inserted



I set up my cot out of the way and they went about their invasive business throughout the night treating me like something between a piece of furniture and a freeway lane-closed sign.  That's okay, I got to stay the night with Heidi.  One complaint, though.  All my fantasies about sleeping over with Heidi and her cute girlfriends were tiring for a different reason.  <sigh>  That's okay, I got to stay the night with Heidi.

The Day 14 bone marrow extraction occurred today.  Please don't make me do the day counting thing again because I'm out of beer.  We're hoping for preliminary results Friday, but final results won't be here until next week.  If Daunarubicin and Cytarabine did their job, it should be clear of leukemia cells.  Then all she has to do is recover from this round of poison.  That is expected to take 1 to 2 more weeks here in the hospital.  Subsequently will be the next round, a one-week bout of cytarabine.

 

Needle Going In.  There's a Drop of Water on the End



Her white blood count is at 0.2 today, the lowest yet.  The Absolute Nutrophil Count (ANC), has been at zero the last two days.  The doctors said all along that day 14 would be the low point in her immune system and so far that is true.  Hopefully tomorrow she will start climbing.  

Check out the photo to the left showing the new needle going in.  Heidi doesn't like to watch that stuff.  I was kinda worried that the camera flash would disorient the nurse and he'd miss the mark or fall backward or he'd jump up and stick the other nurse.  Fortunately this is not an episode of The Three Stooges visit the Hospital. 

Trying to Remain Calm during the Port Maintenance Procedure



No fever today, which is great news.  Maybe the double antibiotic cocktail they give her thrice daily is doing its job.  Personally, I'd rather have a double Tanqueray martini, especially when it's time to count days.  Or perhaps the grass-roots movement to stop touching the drinking cup lip zone is taking hold. 

Back in the Window Seat





Heidi received 2 more pints of red blood cells today.  That makes 10 pints of reds and 2 pints of platelets total so far.  Have you gone to http://givelife.org/ yet?  Yay to Laurie L., super-duper blood donor, who gave today.

 

Bad Hair Day 14

In Her Favorite Window Seat

 I'm having a bad hair day.  Really, a bad hair month.  Back in August when Heidi was first admitted to Northwest Medical Center hospital, they indicated treatment was imminent and she would be starting chemotherapy immediately.  Being a supportive husband, I put off getting my hair cut so I could get buzzed simultaneously with Heidi, even though it was clearly time for a standard haircut. 

Then we changed to University Medical Center and the diagnosis changed.  They were convinced she had MDS and outpatient chemo treatment was to start immediately.  Being the supportive type, I once again put off my haircut.

Then her blood counts went to hell, resulting in a diagnosis change and a new treatment starting—anybody want to guess when?—yes, imminently.  Once again, I, being the supportive husband type, delayed my much needed haircut so I could get a buzz cut with my soon-to-be bald wife. 

Still with a full head of Hair (dammit!)

Couple this haircut procrastination for the sake of support with the fact that I've been driving Heidi's car most of the time.  With nice comfortable Southern Arizona Autumn weather, it's nice outside morning, noon and night, which means I've had the convertible top down most of the time.  All of this is a recipe for a bad hair day, week, month and then some.

Heidi, meanwhile, is being her usual obstinate self, refusing to act her disease and show the expected symptoms such as hair loss.  You could almost call my haircut delay something of  unrequited support.  Last month I had something of an 80's dew.  Now it's becoming more of a 70's style.  I never really had a modern hair style even before this started, so maybe I started from a baseline in the 90's.  Regardless, my retro look is getting retro-er.

Just so you y'all think this isn't all just about me, I need to mention that Heidi did pull out an inordinate amount of hair this morning.  I'd say something around 20 hairs.  Not enough to cause a noticeable difference, but perhaps a sign that soon I might be getting my much needed buzz.  Ah, but even the hair isn't about me.

Hospital Day 14, and awaiting Chemo Day 14

Heidi still not looking like a chemo patient

Remember the entire day counting misunderstanding?  Perhaps I should call it a difference in counting assumptions.  Now it deepens further.  The 14-day bone marrow is supposed to occur on (drum roll, please) day 14.  Is it Hospital Day 14?  No.  Is it Chemo Day 14?  One would think so, but it isn't.  Because the first bag of chemo drugs didn't finish until Chemo Day 2, the seventh bag of chemo drugs didn't finish until Chemo Day 8, which was Hospital stay Day 9.  Everyone following along with me so far?  Anyone need to watch the day counting video again?  So Bone Marrow Day 14 actually occurs on Chemo Day 15 which is Hospital Day 16 which is Wednesday. 
So those of you counting days (I, for one) have to wait two more days for the bone marrow biopsy.  Hopefully the chemo drugs did their job and the bone marrow will be free of the baddies.  I think we get preliminary results Friday, but maybe not till next week.  I'd tell you which day number that will be but it's giving me a headache. 

Today was package delivery day.  Following a care package from Laura K. on Saturday, there were three packages delivered today from Sylvia, Lisa and Lori McD.  Oh, do I need to mention the packages delivered last week from Nikki, Alex & Sylvia?  I'm going to have to drive the truck on check-out day.  Today the nurse brought the mail in on a wheelchair because it was too much to carry.  Quite a pick-me-up.  Thank you, everyone!

Day 13 and it's time to thank the staff at UMC

Heidi and Lorelei

The staff here is amazing . . . phenomenal.  Let me get out my thesaurus to find more synonyms to describe how great they are.  They are so upbeat and helpful and cheerful and positive and I need my thesaurus again.  The photos on this page are only a small number of these great people.  There are many more.  Maybe I should be thanking the HR department for hiring such wonderful people.

Heidi had a fever of 102F again today.  The theory that it is just something routine that occurs because she is neutropenic is gaining ground.  The blame it on the visitors theory lost ground today as nobody visited (except me, hmmmm . . .).  The contamination from fingers on the lip of drinking cups theory has not been discredited, of course, because nobody can prove that all of Heidi's cups today were not touched on the lip.  That's my theory and I'm stickin' to it.

 

Heidi and Polina



At first the infections resulted in chest x-rays, urine samples and blood samples.  Since the routine neutropenic infection theory has gained favor among the medical staff (who are uninformed about the alternatives) she is now on two different antibiotics.  One is delivered through the port twice a day and the other is delivered through the port 3 times a day.  The result is that she is now hooked up to Javier (the IV pump machine) several times a day. 

 

As if that isn't bad enough, the second antibiotic, Vancomycin, gives her an allergic reaction similar to what Penicillin does to her.  To prevent the itchies, they're also giving her benedryl.  I take benedryl at home sometimes.  Usually when I think I won't be able to sleep I'll skip a Claritin and take benedryl instead.  It knocks me out.  But for normal day-to-day desert allergies, I take Claritin, which was developed less than 30 years ago and has few side effects.  If you have allergic reactions in the hospital, it's benedryl or nothing. 



Heidi and Steve



Heidi, who has never taken anything stronger than Cabernet Sauvignon in her life, gets more than knocked out from benedryl.  She got the injection and the eyelids slammed shut like the doors at the beginning of Get Smart.  (Yes, I like my metaphores too.)  So they reduced her dose to a half of a half.  If my math is correct, I believe that is a quarter dose.  So now instead of getting drowsy she just gets grouchy.  (Oh, I didn't mean that, honey!)  That's okay, she's allowed.  I told the nurses to go next door to the children's hospital and get half of a half of a children's dose.  Unfortunately they listen to my dosing suggestions as much as they listen to my fever theories.  It won't stop me from suggesting, though.  It's what I do.  



Poomba, Kristy, Heidi, Jocelyn and Simba



Day 12—Couldn't do it without friends

Brian, Heidi and Gregg

 We've been fortunate to have a lot of friends visit lately.  That can be both good and bad.  I was thinking of naming this post, Friends:  you can't live with 'em and you can't live without 'em.  But in this stream-of-consciousness style of writing, I can't go back and change something written previously.  Well, maybe I could.

Heidi had a fever the last two days.  Actually, only parts of the last two days.  It didn't last long each time.  But the medical staff took it very seriously, ordering a chest x-ray, blood samples (one from the port and one from the arm), urine sample and frequent temperature monitoring.  Fortunately all tests have come up negative.   



Lis, Heidi and Alex



Heidi thinks the fevers are from multiple long visits from guests.  The doctors think they are just routine fevers that occur from low white blood count.  They probably won't order any more chest x-rays if additional similar fevers occur.  Actually, I know the real cause.  I haven't told anybody else, so y'all are the first to learn about it.  Thursday morning I bought a latté in a paper cup for her.  The barista actually put her thumb on the lip of the cup right at the drinking hole.  There's a lot of space on the cup!  Why do they have to touch the place where our lips go?  People, there is an epidemic of drinking container lip touching servers out there.  It's gotta stop!  Join with me in stopping this scourge.


Now that we've firmly established that visitors are all good, Heidi and I want to thank all of you who have come to visit, including those pictured on this page, Lori (multiple), Stephanie (multiple), Joe, Pammers, Bridget, Bryce, Ida, Julia and everyone else I forgot.  Keep it coming.  It's a good reminder to Heidi that the outside world is beckoning, and it's good for me to have something other to do than just spewing my inane dribble in this blog.

Here's a video of getting ready to walk the hall

It appears to be Day 11, which means I lost count somewhere

With a Fresh Transfusion Flowing

I must have lost count on days somewhere.  I know one day I had internet connection issues and one day was Ultimate Frisbee night, so I didn't have much time to write.  But the calendar doesn't lie.  Heidi entered here Oct 5 and today is the 15th.  Day 11.  Of course I can't ask Heidi for help because she and I count days differently.  Oh, that's right, I didn't previously post the day counting video for everybody.

Heidi's red blood count fell below the threshold of 7 so now she is receiving a red blood cell transfusion to boost her up.  This is her second today.  Yesterday she received  a transfusion of platelets because that was low.  The chemo drugs are slowly working, killing all the good and bad. 

According to the lab report, a normal red blood count (HGB) is in the range of 11.7-16.  Wikipedia (which is never wrong) lists 12.1-15.1 g/dL as the normal range for women.  Before entering the hospital the threshold for transfusion was 8.  This is low for a healthy person, but okay for someone who is closely monitored and not exercising.  They try to minimize the number of transfusions because it leads to complications like iron poisoning.

Ordering Room Service with Simba Watching

When Heidi first went to the hospital to get an angioplasty for alleged heart disease, she was at 4.2.  Now I understand why the nurses there were so shocked.  People aren't supposed to be able to function that low.  It also explains why we had to turn around after 1/2 mile on a hike a few days previous. 

She has now received 8 pints of red blood and 1 bag of platelets.  This will continue.  Here's a big shout out to all you blood donors.  We heartily thank you (yes, I agree that is a clever use of the adverb heartily).  The oncology ward here goes through a lot of blood keeping people like Heidi going.  To all you who want to give blood, simply go to http://givelife.org/ and search for a place to donate.  I gave double reds 3 weeks ago.  That's a procedure where they withdraw a pint, centrifugally separate the blood cells, pump the remainder back into me and repeat.  I have to wait 16 weeks before I can donate again instead of the usual 8 weeks.  All blood donors pat yourself on the back.  Keep up the good work.

Day 9 and the Cytarabine is done for the season

Dad, Heidi and Ida

 I know, another bad baseball saying.  Actually, it's not even true.  Heidi will be getting more cytarabine during the consolidation phase of chemo next month.  But she is done with it during this visit.  They will be disconnecting her from her four IV's this evening and she will be a free woman.  Well, free enough to walk as far as the double doors at the entrance to this wing.  She said she would be dancing a jig after disconnecting.  I video recorded the disconnection, but you'll have watch to see if there is any jig action.  Tonight is Ultimate Frisbee league night so I have to leave pretty soon.  And the internet connection here is flaking out, making it impossible to upload.



Hard at Work



Thursday now, Day 10.  I'm back here in the morning and have internet connection again.  Okay, I was able to upload photos but not the video.  Stay tuned.



Day 7 in the hospital

Enjoying Dinner

Day 7 in the hospital is Day 6 of chemotherapy.  Heidi has one more day of chemo and then she gets to just sit in her luxury penthouse and relax.  Well, just sit and stave off infections and relax. 

Day 14 is supposed to be the low point in her immune system.  Then hopefully her blood counts will start to rise and a short week later she will be released. 

Day 6 enters full neutropenia

Catching some Rays in the Window Seat

Heidi is officially neutropenic now.  In the 5 days since chemo started, her white blood count has gone from 24 to 1.1.  It will go lower.  Her red cell count was down to 7.6, which is borderline for getting a transfusion.  She didn't get one today, but surely will tomorrow. 

I've always thought she and I have been mildly germophobic.  For instance, I notice when a waitress delivers a glass with her hand on the rim where my lips will go.  For Heidi, the cleanliness of a restaurant and its bathroom has a big effect on how much she enjoys the meal.  They aren't big life-interrupting obsessions, but a very mild obsession.

The mild part of the equation is going away for the next few weeks, and beyond.  As I said before, she and I can't share food or food utensils.  I'm also not allowed to use her bathroom.  She has to have a new drinking cup every day.  She isn't allowed to turn on the shower water (mold could have collected in the pipes) or carry her towels to the hamper.  She isn't allowed to flush the toilet either, though that's more because they have to monitor the guzintas and guzouttas.  She had to give up her Sonicare toothbrush today because it's too abrasive on the gums.  She can't shave her legs and can't use old makeup or old skin care products; newly opened products are much safer.  Every day they change her sheets and sanitize her mattress, pillow, remote, telephone, window seat and most other surfaces she touches with alcohol wipes.  This room is positively pressurized with a HEPA filter to eliminate infiltration.  No flowers or plants are allowed here.  I can't even bring in a pumpkin for halloween.  They encourage me to bring in food she likes, though berries are not allowed because they have too many crevices where bacteria can hide.  Any other raw fruit I bring has to be scrubbed with medical-grade soap.  They go to very great lengths here to maintain an aceptic environment. 

After we get home she won't be able to clean bathrooms or dig in the dirt to plant anything.  No swimming pool.  No hanging around in crowds (and wearing a mask while in public).  I'm sure we will be given a big list of things to avoid before we leave.  Anyway, Germaphobes R Us.

Day 5 and still eating well

Gowned and Masked for a Walk

I brought Heidi a box of vacation cereal today.  Lucky Charms, to be specific.  The term vacation cereal is from my childhood.  My parents wouldn't let us have sugar cereal except when we went on vacation.  Ideally it should have been a multipack of little boxes, but I couldn't find those.  This isn't really vacation, but she still gets the cereal. 

The food in the hospital is much better than expected.  It's not just meatloaf and chicken parmesan.  They have a full menu.  Heidi can order anything off the menu anytime between 6:30am-7:30pm.  Usually I have to remind her to order because she isn't hungry often.  Her second day here she was talking to the order-taker on the phone asking why they didn't have more snack food.  He mentioned potato chips and rice krispy treats.  Heidi exclamed, "those aren't on the menu."  He said they were on the kids menu.  Heidi hung up and hit the call button on her remote.  She's had two menus ever since.  She usually orders from both.  Actually, that just makes ordering her food take twice as long as usual.  Those of you who have been out to dinner with her know what I mean. 

At dinner time she was going through her usual decision catatonia when I suggested pizza.  A friend had brought cookies from Rocco's pizza earlier in the day.  Unfortunately they don't deliver so I drove there and picked it up.  I also bought a beer on the way.  Although I am drinking the beer, it had to be in the photo.

Ahhhh . . . pizza (and beer for Scott)

I brought M&M's and Skittles earlier today.  Other friends brought Hot Tamales.  Heidi hasn't opened any of them.  There is a refrigerator on the floor that is stocked with yogurt, soda and ice cream sandwiches.  I offer Heidi an ice cream sandwich 5 times per day, but she hasn't had one yet.  She's gained weight, but it's all from the gallons of saline they're pumping through her port and all the dead cells building up in her blood.  That stuff will all pee out over the next few weeks.  But the ice cream sandwiches, forgoing those is just wrong.

Day 4 and Dauna is outta there!

Sorry, I got baseball on the mind.  It's October.

But Daunarubicin is history.  Heidi got three days of the nasty "orange-pee" drug, as she called it.  She is still on cytarabine for 4 more days.  Then it will be a short 2-3 week recovery period.  Then there will be . . . well, more.

Anyway, the word of the day is Reiki.  No, that does not describe Heidi's pattern-rich full-color clothing choice.  It's this odd laying of hands almost-massage almost-meditation thing.  It's offered free to patients here.  So ya can't complain about anything that's free, right?  hmmmmm . . .

Heidi was really excited about it, and seemed to appreciate the calming effect.  So it was a good thing for her.  They'll be back, which is good.

I gotta say, though, that I was surprised.  I was working on my computer while the whole thing developed.  Heidi was laying there and they positioned themselves around her.  They kinda warmed up by holding her.  Then they switched hands.  Then maybe they moved to a different hold.  I was keenly interested to see what was gonna happen.  Then they picked up their stuff and left.  What I thought was a warmup was actually the main event.  The short was actually the premiere.  The foreplay was the . . . okay, too many metaphores.  I felt completely unfulfilled.  But Heidi appreciated their warm hands.  That's what really matters.  Perhaps the best way to describe it is it was at the opposite end of the spectrum from the rocket science with which I was concurrently engaged. 

Doesn't matter.  Dauna is outta there!