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!