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.

October 24th Note from Roger

Today I feel great. My body is producing healthy cells. I no longer need transfusions and I’m eating with real enthusiasm for the first time in a year. I’m getting stronger. There is something good going on, we're just not sure what it is. It may be the effect of the infused stem cells, but could it also be that I'm in remission?  I’m seeing the doctor tomorrow, so we'll hear what he and the transplant team in Salt Lake think.

Candi and I are taking it a day at a time, enjoying the cold, gray, wet mornings that turn bright gold in the afternoon. Fall has always been a favorite time for me. It brings back memories of college and rejuvenates my spirit. We will be road-tripping south once a month for medical tests through the fall and winter; the next trip coming up the first week of November.  We're actually looking forward to our drive.  This time we'll take the scenic route along the Teton mountains down through Logan into Salt Lake. The Fall colors will be spectacular. 

--Roger

We Won't Be Scared to Death

This is a spooky time of year.  It seems only right to add a Halloween image to our blog since Roger and I are "whistling past the graveyard" as they say.

We know those nasty leukemia cells are likely lurking in the dark recesses of his bones.  He had only that one round of chemo in September - probably not enough to wipe it out completely.  We can't use chemo now without the risk of killing the good T-cells that Roger just received.   On November 4th we'll be back in Salt Lake City for a recheck and a bone marrow biopsy, so we'll get to see whether the T-cells are holding their own.  All we can do now is wait and hope our little heroes are in there fighting.

In the mean time, we go about our day-to-day activities and try not to focus on our fears.  We're looking into buying a used car and I'm making a meatloaf for dinner.  Now THAT'S a scary life!

Heaven!

It felt like heaven to sleep in our own bed last night.  There are things that should get done around the house before the work week begins that will probably not get done.  That will just have to be okay. 

We don't expect to see any immediate effect from the T-cell infusion.  It's more likely that effects will be visible in about in 3-6 months.  We'll go back to Salt Lake City for rechecks with the transplant team on November 4 and December 2.  In the mean time, of course, Roger will continue being supported (and treated for leukemia if necessary) by Dr. Nichols at Montana Cancer Specialists, and Dr. Beatty for GVH.  There will be plenty of time for all that.

Today it's Sunday.  It's time for coffee, the newspaper, and a long walk with the dog.  Heaven!

...Then You Win

Greta, the nurse coordinator for the LDS transplant team gave us a card just as we were leaving the clinic yesterday.  It has a quote from Mahatma Gandhi that's worth sharing.

"First they ignore you,

then they laugh at you,

then they fight you,

then you win."

T-Cells Completed

And... it's done.  Like Roger's allogenic transplant, the actual procedure of infusing T-cells is anticlimactic. After all the weeks of preparation and talking about the pros and cons. . . . the whole thing was done in less than an hour.  I'll offer more details and projections over the next few days.  Today, just a few photos of the experience.

We'll stay in Salt Lake tonight and, barring unforeseen circumstances, will drive home tomorrow.

Roger sports a new wrist band that gets double, triple and quadruple checked against the T-cells.

The big container from the cryogenics lab is delivered.  Robert's cells have been frozen for almost a year.

When the assistant from the cryogenics lab opens the container, vapor from the dry ice flows eerily out into the room.

Nurse Jared hangs the bags and oversees the whole procedure. Five bags and we're done.

Because the cells are right out of the freezer - barely defrosted - Roger is wrapped in warm blankets.

Here's what good T-cells look like as they are going in.   Now we just want to see them get to work!

On the Road Again

The drive between Butte and Idaho Falls seems endless.

The transplant team called yesterday afternoon and told us to have Roger in Salt Lake on Thursday so that he can start T-cell Therapy first thing Friday morning.  When they said "soon," we didn't realize they meant this soon.  And, we thought this treatment could happen here in Missoula, but no, it's got to be Salt Lake. And, he's not allowed to fly.  But what the heck, we will do what we have to do.  So, it's another road trip for us.  

Today we are scurrying around home, making babysitting arrangements for Sophie, doing the laundry that didn't get done last week, filling prescriptions (again), picking up a rental car, packing (as soon as laundry is done!)  the usual road-trip craziness.  Early tomorrow morning we'll hit the road.  I-15 South is becoming very familiar.

Stay tuned, there will be news bulletins from SLC. And hold this thought:  Those little T-cells are going to get in there and give Roger just the boost he needs.  They will kick leukemia's ass.

Attention!

Congratulations to our son Casey on his promotion today.  

We now refer to him as Major Casey McKinney.

Ooo Rah!

MSO --> SLC --> MSO, 1050 miles RT, Tues-Fri, 48 hours non-stop

Preparation for our road trip to Salt Lake began with two transfusions on Tuesday.  While Roger sat through that, I ran the necessary errands, filled the prescriptions, made sandwiches and packed the car.  We got on the road late: 3pm and drove as far as we could safely.  Wednesday morning we drove the rest of the way into Salt Lake and made it just in time for an appointment with the transplant team at LDS hospital.  After the dramatic build-up and such effort to get there, we were expecting news, a miracle, a plan, something to make us feel like it had all been worthwhile.  Instead, we were greeted with cold and disheartening statistics and a list of "options" that were really not options at all.  We didn't need to drive all that way to be told that AML Leukemia that has come back 3 times is "bad."  After fighting this disease for six years, we already know how bad this is.  We didn't need to be told the survival rates on patients receiving T-cell Infusion Therapy for recurrence of leukemia after transplant are not encouraging.  We did not need to hear that statistics don't support a second transplant as a viable option.  It was upsetting to be met at the door with statistics and apologies.

We spent two full days going to appointments, weeping, talking about final wishes, making worst-case scenario plans and wandering in a fog.  We drove home on Friday and got to Doctor Nichol's office in Missoula just in time for another transfusion.  We spent the nine hour drive home talking and processing the information.  By the time we got back to Missoula, we were pissed.  Where was Roger in all of this?  Statistics on the treatment of AML leukemia, gathered over many years, including patients of all age ranges, in all stages of health and ill-health have little bearing on how one individual guy, one tough individual guy in good health (except for having leukemia) is going to respond to a particular treatment.

Screw the statistics.  We're doing this.

One good thing came out of this trip.  The stage has been set  for the next stage of treatment.  The results of the skin biopsy to tell us if Roger has a little case of graft-vs-host disease should be in early next week, although it already seems clear there is little or none.  Once that’s completed, the treatment will begin with all due haste.  He'll be given his brother's donated cells that were frozen a year ago and his progress will be monitored by the transplant team in SLC every 30 days.
  
We’re doing this, and we have every intention of doing it well.  Add that to your statistics, scientists!