Day 3

Changing the Port Bandage

 The first day here at UMC was all about being robed and probed.  They put a port in her chest (underneath the bandage at left).  That allows them to inject meds and draw blood without having to make new holes.  It can stay in for many months.  It's pretty ingenious, and I'm sure the inventor is living on a yacht in the South Pacific collecting royalties. 

Day 2 they started giving her fluids.  First just saline, but eventually 2 units of blood.  She's gotten 6 units total since this began a few weeks ago.  Thank you to all you blood donors out there, especially the O+ ones among you.  I'm O+ too and I donated double reds 2 weeks ago.  D'ya think she could have gotten my blood? 

They also drew 15 vials of blood for HLA typing.  This is the process that will find a stem cell donor.  Those of you who sign up to be a bone marrow donor only have to deal with a cheek swab at first.  If you are selected you have to give a blood sample, and eventually stem cells.  If you're interested, there are donor testimonials on the marrow.org website.

Day 2 was also the start of chemotherapy.  Before chemo they give her anti-nausea drugs and anti-infection drugs and anti-fungus drugs and anti-something (was it anti-disestablishmentarianism drugs?).  Lots of anti.  That cocktail made her really drowsy so she kept knodding off the rest of the day.  As I type, the nurse is preparing another round.  Right now Heidi is bubbly and upbeat as she is babbling on the phone.  In an hour she'll be sitting on the recliner with her head propped up with pillows.  Fortunately the nausea-inducing daunarubicin will be given only one more day.  I remind all the doctors and nurses that they are not allowed to prescribe the best anti-nausea drug here in Arizona. 

Walking the Hall

For now, we wear masks only when the nurses are cleaning or changing her port.  Next week when Heidi becomes nutropenic (look that up in your Funk n' Wagnells) I'll be wearing a mask more often and she'll be wearing it whenever she leaves the room.  We will learn to be germaphobic.  Everyone who enters must use the disinfectant hand cleaner at the door.  Any nurse who touches her always wears gloves.  Heidi and I are no longer allowed to share food or eating utensils.  (Yes, I know what your next question is, and I take the fifth amendment.)  Germaphobes R Us.

Day 2

Chemotherapy started this afternoon.  She now gets 3 days of cytarabine and 7 days of daunarubicin.  Then 2-3 weeks of recovery.  You would think that with me spending most of the day here I would get bored and have lots of spare time.  But I haven't yet picked up something to read for fun, haven't watched TV and have only a few minutes to write something here.  So y'all get photos and videos instead.

Day 1

Some of you are reading this blog for the first time.  There is a ballad of the adventure that led here in the older posts.  If you want that history, go to the bottom (hit the Older Posts button) and read from the bottom up.  It tells the tale in a day-to-day meandering what-the-fuck-now kind of way. 

We haven't been intentionally keeping this a secret.  We thought treatment was imminent a month ago and were about to announce it to our friends.  I started a blog so Heidi wouldn't have to tell the same story over and over to everyone.  Then the diagnosis changed.  Then it changed again.  Then we kinda decided not to make an announcement until we knew what the announcement would be.  The treatment plan and start date kept getting pushed back.  Until today.

White blood counts went from 3 to 12 to 27 in the last week.  Red cell counts, which had been creeping up for the last month, started to drop again.  The bone marrow extracted last week confirmed Heidi's illness had progressed into full blown Acute Myeloid Leukemia.  Until last week we thought she had Myodisplastic Syndrome.  Before that it was AML again.  And before that, well, read the older posts.

The treatment plan starts with 7+3 induction chemotherapy (explained pretty well in the wikipedia article linked above).  Daunarubicin is given for 7 days and cytarabine simultaneously for 3 days.  Then she recovers for a few weeks in the hospital waiting for blood counts to come back up.  By the end of October she should be able to come home for awhile.  Then consolidation chemotherapy will start.  That will be cytarabine again, but only for a few days with a much shorter hospital stay. 

This should get the disease under control, but it does not cure the leukemia.  The only cure is a stem cell (bone marrow) transplant.  The doctor very frankly told us not have the stem cell transplant in Tucson.  He said the chance of success is very dependent on the number of transplants the facility does.  The more practice they get, the more they can handle the intracacies without allowing small complications to become large problems. 

Best guess now is that the stem cell transplant will happen at Fred Hutchinson in Seattle in december.  But that depends on getting through the beginning steps first. 

Heidi can have visitors.  They encourage her to have visitors who force her to get up and walk around the floor.  Anyone over 2 can visit, as long as you are not sick.  You can bring most kinds of food (Heidi likes ice cream sandwiches lately)  Raw foods are problematic.  Real flowers, fake flowers and plants are not allowed.

Ways to contact Heidi:

Walk in
University Medical Center room 3714

Snail mail
University Medical Center
Heidi Greeley Room 3714
1501 N Campbell Ave
Tucson, AZ 85724

Phone
520-694-3160 bedside
808-268-8831 cell & text

Email
Heidi@gr23.com

Instant Messenger and Video Chat
HeidiGreeley@hotmail.com

Don't delay; contact her today!

The best thing that anyone can do to help is to join the National Donor Marrow Program.  Heidi's best chance for a match will be with her brother and sister.  But in case they are not a good match, the hospital will search the available donors in the program for a match.  It's painless to sign up--all it takes is a swab inside the cheek.  I've been on the registry for 15 years now and have never been matched, so it's not a certainty that you would ever have to go through the donation process.  Don't delay; sign up today!

Act your disease!

Friends visiting from Seattle for a couple days.  Reminiscing is a good way to forget about other things.  Thank you, Deanne and Jane.  It's nice to have friends. 

Test results are supposed to be in tomorrow (Monday).  That doesn't matter tonight.

no news

We called the oncologist last night and left voicemail.  He just now returned my call (saturday afternoon) and said the test results are not finished yet.  They must be counting and recounting and double-counting to make sure they get it right this time.  Actually, it seems more like chasing a moving target.  Results should be in Monday morn, so I'll update then after we discuss with him.

Funny side-plot though.  Before he hung up he said, "have a good weekend."  I replied that I want him to have a bad weekend, at least a bad saturday night.  He hesitated and said, "excuse me?"  His team (USC) is playing Washington tonight, which we had discussed a few times.  Once I reminded him about the game tonight he changed his tone and demeanor.  I had him there for a moment though.  heh heh

8:29 pm update:  32-31.  yeah!