Day 2 at Zion National Park

Heidi said she had syrup with breakfast 5 days in a row.  Not plain syrup, but syrup on pancakes, syrup on on french toast, syrup and waffles, etc.  (Later she corrected herself and said one of those mornings she had cinnamon roles instead.)  She said that was a new record for her—she normally doesn't eat breakfast.  But she's trying to fatten up a little so her fat reserves can carry through times when she won't be able to eat much.  She called me at work last week complaining that a milkshake she ordered at Chili's didn't come with the extra that didn't fit in the glass and it didn't have any whipped cream or a cherry.  If you plan to visit her in the hospital, please don't make that mistake.  As you can see in the photo at the left, her weight gain plan doesn't appear to be working, though she claims the scale tells otherwise.

Chemotherapy is supposed to start next week, either  Monday or Tuesday.  The doctor is supposed to call us today and let us know which day.  We have tickets to watch the Huskies play at BYU tomorrow night, but if chemo starts monday morning, we don't really have time to drive up to Provo. 

Just talked with the doc and found the original oncologist never ordered the gene/chromosome tests.  Yet more validation that parting with that team was the correct choice.  I need to rant about how healthcare has changed; that will be for a future blog.

After the initial diagnosis of AML, I did some reasearch on the web to find out the prognosis and treatment plan.  Most sites discussed different plans that depend on which subtype of AML.  But our doc said that information is obsolete.  (The wikipedia link above has the genetic discrimination info consistent with our doc and the subtype description.)  Now the treatment regimen is as follows.

Induction chemotherapy follows the 7+3 plan, which involves 10 days of poison via IV.  This first phase usually results in a 3-4 week hospital stay.  This part is the same for everyone with AML.  Then, depending on your genetic makeup and the AML subtype, Heidi will either endure Consolidation chemotherapy (more IV poison) or bone marrow transplant.  If bone marrow transplant is needed, sister Robin and brother Toby will likely become her best friends.

The doc said the bone marrow transplant program at the UMC in Tucson is, in his words, disarray.  He recommended going elsewhere, either L.A., the Mayo Clinic, or, once again in his words, The Mecca for bone marrow transplant, Fred Hutchinson in Seattle.  Since we have family in the Seattle area, that would be the obvious choice.  But we're hoping she has the better genetic makeup type and we don't have to pursue that step.

Anyway, the doc said the genetic tests were not ordered.  So we don't know the genetic makeup.  Meaning Heidi has to have another bone marrow extraction.  This involves a stout needle inserted into the pelvic bone from the back.  Requires local anethesia and leaves a bruise, but she said it's not that bad. 

Monday is a holiday.  If they were ready to start chemotherapy, the hospital would be open and she could start.  But the doc and the clinic have the Monday off.  Thus, the decision to start chemo can't be made until Tuesday so she won't be admitted until at least Tuesday or probably Wednesday.  Further thus, we can go to Provo tomorrow to watch some football. 

As an aside, let me point out that this extra 4 hours of driving is not just for me.  Heidi had season tickets to Husky football games for 10+ years.  This is just as much for her. 

Other things we know about her hospital stay.  She will be coherent and have access to her laptop.  The chemo drugs are given for only 10 days, but the low point in her energy and immune system occur around day 14.  Then should start getting slowly better.  Germ-free visitors (no sickies) are allowed, even encouraged.  She'll be able to walk around the floor, but she can't leave.  She'll probably lose her hair.  She may not be hungry very often, but the doc says the chemo drugs don't cause purging as much as they used to.  With a starting date of Sept 8, she should be out sometime around the end of the month.  Her laptop has a webcam so video chats are possible.  Maybe she'll even check her Facebook account.  Maybe.