Day +16: Adjusting Expectations

Sile had a major flare up of back pain this morning (handled smartly by one of the new pain meds).  And yet another bout of nausea.  I despairingly texted Jim:  "When is this ever going to start improving?"

But later as Sile and I gossipped about her nurse and chatted about this and that, I somehow came to realize that things HAD improved.  From the first day of my time at COH, the nurses have talked about the incremental nature of patient improvement, that it is slow, with each day perhaps a minute bit better than the one before it.  "Of course," I thought, "I realize that!".  But as it turns out I did NOT truly realize that.  My expectations for Sile being "better" were that she would be all fine, basically back to the Sile I've known for so long.  And I think that because of those unconscious expectations, I have missed the tiny, tiny steps she is taking on the road to recovery.  Over time - such as the past week - these tiny steps have added up to a lot.  

For example, Sile suggested going for a walk today (that's a first).  "Dr. Nakamura is very big on this walking," she explained to a nurse.  She ate a tiny bit of a popsicle (I think she would have eaten more but I took it away from her - tiny, tiny steps being the theme of the day).  She was comfortable for short periods of time.  She read a few emails on her own.  None of these things are monumental, but none were possible a week ago.  (Admittedly, a week ago sets a pretty low bar, but still.)  

Sile's counts have begun flattening out as expected (whites were 2.5 and platelets at 115).  Dr. Nakamura says that the new cells have established themselves in the bone marrow and there will now be a very slow buildup to normal counts.  We also got the results of yesterday's procedures. There was no evidence of infection (good news) but there was a "mild" GVH in the gut.  GVH is graft vs. host disease, where the new immune system (that would be Frank's) attacks Sile's cells.  Half of all transplant patients develop GVH at this stage of the game, according to Dr. Nakamura.  He called this mild case a good sign (leave it to a hemotologist to think of something as horrifically named as "graft vs. host disease" as  good thing!).  He explained that this mild conflict with Sile's GI tract (something we don't want) indicates that Frank's cells are also attacking the old cancer cells in Sile's bone marrow, an action leads to a cure.  Something we definitely do want.  Another drug - prednisone - has been added to combat the GVH; hopefully this will lead to an easing of the nausea and intestinal distress.

This was Valentine's Day.  In addition to to the wonderful, wonderful cards sent by her friends, Sile had a visit from a group a knitters!  This group comes through COH every Valentine's Day to distribute hand-knitted scarves and hats to all the cancer patients.  This is their organization:

Even in her compromised state, Sile's unerring eye for fashion zeroed in on the most stylish and well-made hat available:

For those of you who don't know him, Gary Cecchi has been Sile's doctor for the last two and a half years of this illness.  He and her friend Liz had this greeting for Sile:

And with that, I'm signing out of the blogosphere.  Eoin arrived tonight and will be taking over caretaking and blogwriting responsibilites.  I'll return next week, to appreciate the accumulation of more tiny changes and steps forward.