Happy Birthday, Grouch.

Roger's birthday is this Saturday.  About this time every year he turns into a grinch and says he doesn't want to celebrate. He doesn't like to think about being another year older.  I don't know about you, but I'm glad we get to celebrate another birthday this year; we almost didn't get the chance.

Birthdays are not about getting older, they are about being alive.

New Life, New Life

Found in our garden, March 27.  
Spring doesn't always happen when you want it to.  But it does always happen.

According to Dr. Beatty, Roger has “classic chronic GVH skin.”

Graft vs. Host Disease (GVHD) is a frequent complication of allogeneic bone marrow transplant in which the engrafted donor cells attacks the patient's organs and tissue. The acute disease occurs within the first 100 days after transplant, attacks many different organs and is more dangerous.

Chronic GVHD develops after the third month post-transplant. The chronic version is not caused by the donor’s cells attacking the host's body but by new T-cells produced after the donor's bone marrow has engrafted. Chronic GVHD manifests itself as skin problems including a dry rash, a change in skin color, and tightening of the skin. Hair thinning or uneven hair color may also occur.

Because GVHD in any form can be life-threatening if not kept in check, it’s important that it be monitored and treated by a doctor experienced with bone marrow transplants.  Roger will be on immunosuppressant drugs for at least a year, and may be treated with steroids if his symptoms worsen.  This summer he won’t be allowed to garden, mow the lawn, swim or even sit on the grass in the park.  There won’t be any warm potato salad at our 4^th of July picnic.  He will have to be cautious about contact with other people for awhile because the immunosuppressant drugs won’t allow him to fight off any contaminants that he might pick up. 

He’ll have to be extremely careful about exposure to sunlight for the rest of his life, as UV rays spark the development of GVHD.

This sounds like bad news, but it’s not.  Research shows that transplant patients who have a light case of GVHD have a better overall survival rate.  Those very same T-cells that are causing skin problems are also creating a “graft-versus-leukemia” effect.  That means, if any leukemia cells survived in the dark recesses of Roger’s bones after the chemo blitzkrieg and bone marrow transplant, the new T-cells will wipe them out.  Chemo was the air strike; T-cells are boots on the ground.

Just think of it:  A leukemia-free life.

Those T-cells are aggressive little buggers.  Buy stock in sunscreen.  Roger’s going to be around a long time.

Safe at Home

We are sighing with relief this evening.  Roger has kicked the CMV virus.  He's got his appetite back.  He's gaining strength and getting more energetic every day.  His blood chemistry and hematology reports look good.  We've found a doctor that understands the issues he faces, one who is willing to listen to our concerns, one who will hover over him nearly as much as I do to keep him well.

I'll post more details this weekend.  The Bone Marrow Boogie will go on as our fight for life goes on, perhaps with less frequent updates.  For now, it's enough to know Roger is safe.

Life: Under Construction

HOME.

The transition home, though welcome, has not been easy.  Currently between doctors, Roger and I have experienced the anxiety of feeling like we’re on our own with no one to give advice on each little blip.  We had gotten used to having a large team of people that we could rely on in Salt Lake.  And they were available to us 24/7.  I am beginning to understand their reluctance to send Roger out into the world. . . THANK GOD he has stayed healthy and we haven’t had any emergencies.

SWEET.

This Friday, Roger will see Pat Beatty, who was one of the founding partners at the Bone Marrow Transplant Clinic in SLC, now a practicing oncologist here in Missoula.  

HOME.

Now, if I could just stop waking up in the middle of the night with heart palpitations, we’d really be on the road to getting our life back.

(They Should Have Said) Hang On, It's Going to be a Bumpy Ride

Sophie enjoyed her stay with Betsy and George, but she was needed at home.

We wanted to believe that there would be a seamless transition of Roger’s medical care to a team in Missoula.  We were disappointed to find that not only was there no transition plan, in fact, there had been very little communication between Salt Lake and Missoula.  Aftercare for transplant patients is complicated.  Roger’s doctor here in Missoula specializes in treating cancer.  To summarize his words, Roger could face a lot of problems in the near future, but cancer is not one of them, so he’s a bit mystified as to what to do with him now.  We’ll be seeing another doctor next week, one who has more experience with transplants.  Things will work out, but delays and differences in treatment protocols are unsettling.  In the mean time, we are enjoying being home, but being careful in the knowledge that the risk of infection is high and that any infection can go from bad to worse very quickly.  (By the way, Roger feels pretty well so he’s tempted to do more than he should.  Don’t worry, I won’t let him.)

On the home front, we unpacked boxes and settled in while waiting 10 days for a technician to reconnect our telephone land line, cable TV and internet service.  I knew I’d suffer from withdrawal and, boy, did I.  The house seems empty and quiet without a television, particularly in a big news week of world-changing events like the recent tsunami and it’s aftermath in Japan and the move to weaken public employee bargaining rights in Wisconsin.  As to the internet, after writing a blog post nearly every day for 5 months, I found that I missed the outlet, not to mention the virtual support of our blog followers. 

It’s good to be home!  It’s good to be a part of the world again.

The Bone Marrow Boogie Goes Dark

We're tired of reading the same old magazines.

Roger had his last appointment at the Bone Marrow Transplant clinic this morning.  This afternoon we'll run some errands and pack the car so that we can hit the road early tomorrow morning for our 9-hour drive.  Our internet service won't be re-established in Missoula for about ten days, so it will be awhile before you see a new BMB post and, unfortunately, we'll also be without email :-(

We're going home!

But don't think we've fallen off the face of the earth.  Everything is fine. 
We'll see you soon.

4 months - 20 boxes

We came to Salt Lake City on November 8th.  After four months, we're finally going home. 

The boxes in the photo - containing all the household gear to run this little apartment - were shipped to Missoula this morning.  We have only to pack the car and drive away after Roger's last clinic appointment on Thursday.  They keep telling us we've gotten off easy.  Many bone marrow transplant patients have a more difficult time of it.  Many stay in the hospital weeks, even months longer than Roger did.  We've been lucky.  And now, luckier still, we get to go home.  And yet. . .

Going home doesn't mean picking up our life where we left off.  There are still plenty of challenges ahead.  Roger's been knocked off his feet by this CMV virus, so beating that is the first priority.  He won't be able to have visitors for awhile yet; the risk of contamination and infection is that great.  Even dust, mold, pollen and spores pose a threat so we'll have to be very careful about not tracking stuff in from the outdoors.  He'll have to go on enjoying the support of friends by phone and email rather than face-to-face for awhile longer, and he'll need to work hard at gaining a little weight and rebuilding his strength.  Eventually, life will begin to feel normal again.

Home.  It will be a rarefied environment and an isolated life for a few weeks longer, but it's HOME!

Day 100

Good Job, Roger!

Speed Bump

Blood tests and an endoscopy show that CMV (Cytomegalovirus [si-to-MEG-uh-lo-vi-rus]), is what has been bothering Roger’s stomach.  Like chicken pox or mononucleosis, the virus lives in most people their entire life and stays dormant most of the time.  A weakened immune system can allow it to wake up and cause symptoms; that’s what has happened in Roger's case.

Now that we have identified the problem that’s been making it difficult for Roger to eat, we can get to work solving it.  He’ll be on an antibiotic twice a day.  Unfortunately, it has to be an IV antibiotic, which requires delivery from a home health company.  He’ll be on it for 2-6 weeks so that means careful transition between the service in Salt Lake City and a new service in Missoula.  Thank goodness we’ve been practicing our IV skills, so we’re not too intimidated by this.  It's important that it be dealt with, but it's not too scary.  It takes a little more work and a little more time is all.

This will slow down our departure for home by a few days.  After what we’ve been through, this is hardly enough upset for us to miss a beat.  It’s just a speed bump, not a stop sign.  We’re still packing boxes and getting ready.

--Candi

Comin' Home Baby

Today was our big day. In the world of bone marrow transplants, the 100 day review is a big deal. It’s when you’re told whether all the effort has paid off, whether the transplant has worked. I’m pleased to report that in my case it has.  I am in full remission. There is still work to be done however. In fact, a stomach issue that has just popped up is going to require a test and depending on the findings, there may be additional treatments but it shouldn’t delay us. The long and short of it is Candi and I expect to be going home in a week or ten days.

--Roger

Wow!  For a guy that talks as much as Roger usually does, he's being surprisingly circumspect today.  Don't be fooled by the "strong, silent" act.  We are celebrating!  Roger's bone marrow is 98% genetically identical to his brother's and the leukemia is in remission.  The last few months have been an unbelievable ordeal, yet, by all accounts, Roger has come through it beautifully and hit all his marks.  It will be a few days before we know just what the trouble is with his stomach.  It could be GVH, but even if it is, we expect to be able to treat it at home in Missoula.  I think I'll celebrate tonight by packing a few moving boxes.

This blog started with a song called Why Worry?  It seems only right to include another song now: Comin' Home Baby!

--Candi