Dear Family & Friends,

This is going to be a long email, probably more information than you want, but many of you have called and emailed asking what’s up. So here it goes. (For Barry’s take on it all check out www.agauchepress.com.)

It’s been ten weeks since we moved home from Palo Alto. Re-entry was incredibly difficult but we are settled into our new life. It is a very different life, but not a bad life. The “too busy-ness” that we suffered from before, is gone, hopefully never to return. We are really taking time and enjoying each other, our family and friends.

I am back at work and Barry spends most days in his home office, finishing up some cases, and writing. He is retiring from his law practice, unfortunately not by choice, but by doctor’s orders and for obvious health reasons.

We have been going down to Palo Alto for tests and doctors’ visits about once a month. The latest chimerism (engraftment) tests, from 5 months’ post-transplant, were a bit disappointing. His numbers are holding steady at about 75% engraftment, so the good news is that Barry is not losing the graft, but the bad news is that it’s not 100%, and it’s not going up very fast. His T-cells, which fight cancer, are at 90%.

He will have a bone marrow biopsy, as well as PET/CT scan, on April 27, a big day since it is the 6 months’ post-transplant anniversary, and somehow very significant to the docs. We will have those results about a week later. This test will also start to measure disease progression. According to Dr. Miklos, Barry’s BMT doc, they do not treat chimerism, and they don’t even really know what it means to never reach 100%. They expect Barry will reach 100% at some point and we were told that it can take up to 9 months for full engraftment. What they do treat is disease progression, if that does occur. They would then do a DLI (Donor Lymphocyte Infusion), basically a booster shot of the original donor’s stem cells. We’re nowhere near that yet. Dr. Miklos also told us that now that we have a Democratic congress, he has been able to get funding for more sophisticated cellular tests that will really help with his knowledge of Barry’s condition.

In terms of other health issues, Barry is feeling pretty strong. He looks great, and is at about 80 – 85% of his old energy level. He is taking way fewer medications and his shingles pain is slowly abating. He is now in charge of his medication regime as well as his fluid intake (96 ounces/day). He is still under the care of the pain doctor as well as the BMT doctor. (The two doctors are now working together closely and have some studies planned around shingles and transplant.) We are working out with a wonderful trainer two days a week at home, and are back at our Saturday yoga class.

Barry cannot go to public places with lots of strangers, like theaters, movies, ball games, shul, public transportation, airplanes, etc., but he can go to restaurants, and he can see people. That has been a big change in his life, and we are enjoying it immensely. We had a lovely Passover with family and friends. He has managed to stay infection-free so far, and we are following the doctor’s orders religiously (hence the Passover reference).

Since Barry cannot fly, and we go to the Feathered Pipe Ranch in Helena, Montana every summer for a yoga retreat that is non-negotiable (except for last year when he was in the hospital almost dying from listeriosis), we will be taking a three week road trip, and visiting some of you along the way. We are very much looking forward to this vacation.

That’s pretty much everything that we know. We wish that this was over, but are getting resigned to the unknowingness and the constancy of waiting for test results. We have learned that if Barry did not have the transplant, his life expectancy would have been two years tops, and that if he had this diagnosis ten years ago, he would have died because the transplant techniques they use today were not developed then. We were also told that Barry will not be declared cancer-free for ten years, but ten years sounds great to us.

We are devastated by all of our close friends who are being diagnosed (daily, it feels) with cancer and undergoing various hideous treatments. This was not the way it was supposed to be.

We’d love to see all of you, so give us a call, drop us a line, come and visit.

With lots of love and grateful thoughts to all of you.

Bonnie