November 18, 2011

 

We've had a couple of tense weeks waiting for results of Roger's most recent bone marrow biopsy. We both had an intuitive sense that the news would be positive or maybe we had just slipped into wishful thinking.  It's hard to make objective observations when so much hinges on seeing the right symptoms.

Roger has been feeling strong and is more energetic than he has been for a year and half.  He's gained a few pounds and has had to revert to his pre-leukemia pants with a larger waistband.  His stamina and his mood have improved.  A few days ago he broke out in a  rash on his chest and back that looks like prickly heat.  It was biopsied and confirmed to be Graft versus Host Disease.  That means his immune system is working and causing GVH but we wondered if his immune system is doing what we really wanted it to do.  Is it fighting leukemia?

We held our breath waiting for a conference call from the Transplant Team in Salt Lake to discuss biopsy results.  The call came this afternoon.  Drum roll please....

• There is no evidence of leukemia.  Roger is 100% in remission.
• The DNA in Roger's bone marrow is now a 100% match with his brother's.
• He has a mild case of Graft versus Host Disease. 

< huge sigh of relief here >

What does this all mean?  It is not a guarantee that the leukemia won't come back.  Sadly, life never offers guarantees.  AML is a very aggressive form of leukemia and Roger's case has modeled that aggressiveness.  But for now, this is the best possible news that we could hope for.  We just want to keep it going.  The longer Roger's new and improved bone marrow and immune system can fight any leukemia cells that pop up, the better the chances the leukemia will be wiped out altogether.  That's right, we still have reason to hope we're on the path to a cure.

Last year we ordered a bland Thanksgiving dinner from the hospital menu and made the best of it.  We thought we might have to do it again this year.  I have never been so glad to be wrong!  We'll be having a very happy Thanksgiving at home, with many extra helpings of THANKS.

Right after Thanksgiving, we'll be on the road to Salt Lake City again.  Staying on track, staying healthy, fighting for a cure.

Random Notes from Salt Lake

The Missoula to Salt Lake drive on Thursday was nice.  We added a little extra loop so that we could drive south along the western edge of the Tetons and through the Targhee National Forest, some territory we had never seen before.  It added three hours to our trip, but it was a beautiful drive on a beautiful day, we were in a fine mood and enjoying our "new" car.  Since Roger has been feeling better, life seems much less stressful.  We wanted the day to last. 

Today we took the new-used car to the dealership to get extra keys made, because there is no Volvo dealer in Missoula.  Apparently you can't just run in to Ace Hardware and get an extra key cut out from a roughly shaped hunk of metal anymore.  Each key has to be specially programmed for the car.  And it takes a couple of hours and costs a pretty penny.  (gulp. what have we gotten ourselves into?)  So we dropped the car off early this morning and got a ride up to the LDS hospital  where Roger was poked, prodded, checked over and biopsied.

We won't have the test results back for about two weeks, but here's a sneak peek.  Everyone seems pleased with the results of the T-cell Infusion.  To the naked eye, it appears to be working. Roger has gained 8 pounds, his blood counts are nearly normal.  He has lots of energy.  Here we are at 8pm, just getting back to our hotel; we've been on the go since 8am.  This is the first time in nearly two years I've seen Roger with this much energy.  There is no sign of GVH.  We're told we might be getting the Graft vs Leukemia effect without GVH.  That would really be ideal if, in fact, that is happening.  Will these remarkable results last?  That's a question no one can answer.  Doctors, nurses, PA's each in their turn advise us to "enjoy this."  We will take that advice to heart.

We had a nice reunion with Roger's two sisters and his brother/donor this afternoon.  It was wonderful to see everyone.  Tomorrow we are rushing home just ahead of a big snow storm that's supposed to be heading our way.  At least, we hope to stay ahead of it.  No side trips this time.

Here's a quote from that book I picked up in the bookstore the other day:

"Having a not entirely reasonable expectation that things will go well turns out to be exactly the sort of delusion that increases your chances for success in this world. If in fact you are skating on thin ice, the last thing you want to do is slow down and think about it." --- Mark Vonnegut, M.D. Just Like Someone Without Mental Illness Only More So

Mark Vonnegut is the son of Kurt Vonnegut Jr, of course a huge favorite author from the 1960s-80s.  This autobiographical book is a description of Mark's remarkable life, his triumph over mental illness and other life challenges.  It is funny, smart and inspiring.  I may share more quotes later.

This Must Be My Day

Saint Agnes, the Pathetic

 Holy Candi!  It’s All Saint’s Day

I spent about ten minutes in the bookstore today paging through a book that I thought would be a good read.  Mustering my self-discipline, I put it down and said to myself “I don’t have time to read just for fun,” and walked out.  I have honed the art of self-denial to such an extent that I am the envy of the freaking saints.

We have this life, this miraculous but busy life.  Working, taking one class each semester in my graduate program (I know, I know, I'll never get through the program at this rate.)  keeping healthy, which, in our household means shopping and cooking well-balanced and appealing meals every day, and keeping a germ-free house.  And now, we have what has become our once-a-month pilgrimage to Salt Lake.  It seems we are constantly in some stage of packing or unpacking.  Everything we have to do fills up all the time we have to do it in.  When would I have time to read a book just for fun?

This is the life we fought like demons to keep. And yet, sometimes I get this niggling, ungrateful feeling that our life is small and limited.  That bothers me.  So I’ve given it some thought and here’s the deal.  It’s not from lack of gratitude; it’s just the will to live exerting itself.  The trick is to let off steam before it blows.  Taylor reminded me recently of a cartoon that made us laugh – a 1960’s housewife with a melodramatic expression of raging anxiety on her face, her speech bubble saying, “The baby was crying, the dog was barking. I had to burn it down!”

Don’t worry, I won’t burn it down.  But, I did go back and get the book and I will make the time for some fun reading.  I’ll let you know how it turns out.