Sometimes Things Happen

[FROM SUSAN]
I get confused sometimes between what I have written here and what went into my bi-weekly newspaper column.  Last week I wrote there, depicting some of our last day of chemo (which contained a very long frustrating wait that was mitigated by the presence of our younger daughter,Amanda), and telling how I was cheered up, later in the day, by brussels sprouts.  Go figure.

This is the early-morning scene as I cross from the parking deck to the hospital.  Always disconcerting to consider that we actually need all this new hospital space.

This week started the same as all the others, with a 7:20 drop-off at the circle, packing in food, and thankfully no long waits before Peter got his blood pulled and we saw Dr. Uronis.  Last week was the first time that anything showed up on his labs...a slightly lowered platelet count.  He smiled at that, since he has given platelets over 60 times.  But they explained that he was far, far above the number at which he would need an infusion.

Today his white counts were a notch down, but again, as to be expected.  Overall they keep saying that he has tolerated this well.Without the long-haul of chemo, we made the trek to the sub-basement where Peter got zapped, and we were free to go much earlier than usual.  It is still exhausting, especially with Peter feeling so badly.


In regards to those reports, "as expected" turns out to be different than what we expected.  Since chemo ended last week, we expected a rebound, I think.  Peter did manage to exercise once this week, but he caught a cold, too, and so stayed in and mostly on the sofa most of the week.  Yesterday they explained that the cumulative effect of the radiation would continue to make him feel bad--weak, nauseous, and not hungry.  Reading back on the blog I see they explained the same thing two weeks ago.  Some things you just don't want to hear.

This has been the worst week in many ways, but one bright spot (of many), is that Peter is swallowing better.  I watched him down an actual sandwich the other day, and though he continues to chew thoroughly, things are definitely going down better, which could be an indicator that "the little bastard" is shrinking.


We are asking more questions of the doctors, particularly about the upcoming surgery., which is looking to be mid-March.  I always think of questions after we leave, and one from yesterday was how large was the study on which Dr. Willett was pegging his advice.  He was quick to tell us that the study looking at a non-surgical option was "small and inconclusive."  But when you compare those who have surgery with those who don't, the 5 year survival rates are about the same.  The difference, he says, is that in the non-surgical group there is more of a tendency for the tumors to return in the esophagus.


In my mind that leaves so many questions, if the survival rates are indeed the same.  What are the long-term effects of the surgery that we could compare to the risk of the tumor returning on-site?  They call this a "life-altering" surgery, in which 1/3 of the people do so well that they go home without a stomach tube, 1/3 learn to eat within a couple of weeks and lose the tube on their follow-up visit, and the last third has a really hard time with it.  How would life in the latter group compare with the risk of no-surgery?  Can anyone say?


The other bit of news is that Dr. Willett thought that the 16th was a little soon for the follow-up PET scan.  So it is possible that might get pushed back a week, which would make it the 23rd I think.  We will let you know.  On that day we want you all to circle up, hold hands, and pray, chant, dance, conjure vibes, or whatever else you can do to bring good news of no advancing disease.


Some of those other bright spots are worth mentioning.  For me, a huge one is that my workplace is bringing in a beloved alumnus, Tricia Lindley (08-09) to run the program while I am away for the surgery.  The thought of trying to juggle everything from Peter's hospital room was daunting, so this is a huge relief.  I love Tricia dearly, and she knows the program as well as anyone else, having both gone through it and also having volunteered in most aspects.  Thank you Tricia and JIP board.


Saturday night was a huge bright spot for Peter, when Geoff Hathaway organized a music jam out here for him.  I'll let him write all the details later, but he called it one of the best-ever, which is saying a lot!

We hope to see you at Saturday night's gig at The Depot in Hillsborough (www.hillsboroughdepot.com).  The rumor is that at least of of the docs is coming.

And I had my own fun attending the wedding of JIP alumnus Abigail Lee in Tarrboro with three other interns from her year.  I've had calls, visits, letters, lunches, and flowers from many of the alumni of the program, and each one has meant so much.  Thank you.


Here's a closing story from yesterday.  I can't say that we've gotten used to seeing all the other patients in chemo and radiation at Duke, but the sights have become less startling except when children are involved.  Yesterday a pajama-clad lad strolled in with his bouncy little sister.  His head was shaved, and bore the target marks of radiation (Peter has them on his chest).  The little guy stopped in his tracks in front of an amputee sitting across from us.  The mom came up and told the child to "say hello," which he did, but then he asked "What happened?"


The entire room was holding its breath, and after a pause the amputee answered, "Sometimes things happen."  The mother urged her son on, and we all started breathing again.  Yes they do.