The blog I said I'd never write

Here it is.  I can't promise you that this won't be the only entry I ever post, as generally I lack the consistency and willingness to talk about myself at length to carry on a reasonable blog.  But I'm going to try.  For the most part, I intend to chronicle what's going on day to day with my treatment, not necessarily fill the screen with my musings.  But we'll see what happens.

So I called this blog "The Peculiar Vacation" because what should be fun and exciting trip to Seattle is actually a strange mix of "You must go to Pike's Place!" with "If your neutrophil count is high enough."  Such has been my life for the past 5 months; it is just heightened here where I'm supposed to be riding around on the Space Needle between my appointments for bone marrow biopsies and radiology oncology consults.  The local folk that I mostly encounter are also peculiar, in that they are not local, they are from somewhere else, and they are all sick like me.  Not everyone has AML, and so far, no one has been especially chatty.  However, we all stare at each other out of the corner of our eyes trying to figure out who are the patients and who are the caregivers, what kind of cancer each other has, where the patients are in their treatment, and things like "How tragic, he/she is so much older/younger than me, and Hey! His/her hair is so much longer/shorter than mine or is that a wig?"

Anyway, here's the brass tacks.  I'm at the Fred Hutchinson Cancer Research Center, which people in the know call "the Hutch."  I started pre-transplant appointments with endless blood draws and a dressing change for my port, then had a physical and consultation with my PA.  My PA went over my entire case history with me, which was really really fun to re-live, and listened to my heart.  Also checked liver and spleen size- which are apparently adequate.  I learned that transplant date is tentative for mid-September.  I'll find out soon if I need additional chemotherapy beforehand.  Hopefully if I do, things won't get too delayed.

Then I had a consult with my nurse, who took my vitals and went over my schedule for the week.  She's worked here 30 years and you can't beat that.  We discussed drugs I liked and didn't like and things like that (I try not not talk about any of my drugs with too much enthusiasm lest she think I'm some kind of junky).  She also listened to my heart.

When I'm at the clinic/hospital everyone that has ever come into the room with me since I've had this disease listens to my heart.  I can have 3 or 4 people in a row do it.  Sometime 2 people in the same room! I find it bizarre.  Don't they know the last person did it?  Aren't they even going to write something down?  (They never do).  Maybe it's about making physical contact.  Or, avoiding an awkward silence or something.

Back to brass tacks:  we are currently staying at the family suite at the SCCA House (owned by the Hutch) which is in fact not a suite at all but a giant room with an extra niche with a little bed in it and a fold out couch.  The four of us will be crammed in here until our apartment at the Pete Gross House (also owned by the Hutch) is ready on Monday or Tuesday.  Jo and Luna arrive tomorrow afternoon.  I have clinic appointments every day between 11ish and 3 or 4ish.  Today, Brett and I spent our non-clinic hours walking around the neighborhood.  We walked up to Capitol Hill for Indian Food.  It's like 90 degrees and sunny, and I bought a whole new bottle of sunscreen, which in reality was probably a little optimistic.

That's all I have for now.  Going to bed, love to all :)




~jessie