All the Latest From Funston Ave.

Pictures have been taken throughout our jaunts around The City. This was taken in The Castro District…unfortunately we are not registered voters in SF county or our names would have been added to the petition!

All,
The last two weeks have been somewhat eventful, although events seem to unfold slowly. I mentioned I was in a study to determine the efficacy of injecting manufactured stem cells to fight non specific inflammation. In my case, the new stem cells would migrate to the point of GVH and fight back. It’s a double blind study meaning that none of my medical team knows whether I’m getting a placebo or the stem cells. However, independently of each other, both the Physician’s Assistant and Dr. Linker said they think I am getting the REAL thing. They base that assumption on the fact that my GVH has responded in a fashion inconsistent with expected results given normal procedures they have provided. Either I am a wunderkind or I’m getting the good stuff. In any case, they told me today that my GVH is in complete remission. They also told me that my GVH started earlier than anyone expected and was worse than they thought. Coulda fooled me. It wasn’t much fun, but it was nothing like I expected. At any rate, I had the final infusion today. Now they will follow my case for another year. Most of that will be simple blood tests that are being taken regularly anyway. There will be another CT scan and an EKG, both of which are non-invasive. I do need another bone marrow biopsy in the near future. I told the medical team that I would not sign an authorization unless I was knocked out. They promised to schedule an operating room. Yeah!

We’ve been getting out and walking on a regular basis, doctor’s orders. That generally means long pants, long sleeves, hat and mask. We totally neglected my hands. Last Friday, they appeared burned and GVH was apparent to the doctor. I immediately started using sunscreen which I should have done earlier. Yesterday Beck and I went to REI and bought 2 new better-covering hats and 3 pairs of gloves. I really look like something from who-knows-where as I wander around with next to no skin showing and with no ability to leave a finger or handprint. One has to VERY careful when entering a bank in that get up! It will be interesting living in an area of the country where the sun shines and summer temps hover around 100 degrees.

McCarthy’s and Beck at Pacific Ocean

Who are those masked people?! (Nufer’s)

The McCarthy’s visited last weekend. We had a wonderful time. Saturday we walked Farmers Market at the Ferry Building, on the beach at the Pacific, down the Marina to Fort Point , and finally thru Chinatown; a total of 6 miles. I was done at the end. It was great to spend time with our good friends. By the way, apologies to the Nufers, who visited the end of March and were omitted from the list of visitors on the last blog. It was terrific seeing them too. Thanks to all of you who have made the trek.

Beck and walking buddy in GG Park

In Chinatown shop trying on wares

As for me, I feel good. The steroids have been reduced from 90mg to 60mg to 40mg daily currently. I expect them to come down again next week. The TAC (immunosuppressant) has not been tapered as yet and may remain where it is for more than a year. I may never be off it, but only time will tell. As long as I keep taking it, my immune system is being held in check. The more I take, the more vulnerable I am. The hope is that I will be able to get it down to a low dose or none at all. The variable is how hard Diane’s system wants to fight my organs. At every turn so far I have surprised the docs, maybe this will be another favorable surprise for them.
The steroids have created glucose issues. I monitor it 4 times a day and administer insulin as needed. It’s not a big deal for me to do it, but I’m hoping it will be controllable with diet as time progresses. By the way, I’m eating like a horse and my weight today was 1.8 pounds more than when I left the hospital 7 weeks ago. Makes Beck NUTS!
I have some neuropathy in the balls of my feet and in the left little finger, and the top of my left hand. This varies from a tingling sensation to profound numbness. The latter is rare, the former is constant; nothing that will slow me down much though. The concern is staying healthy.
In summary, my blood counts are “rock solid” and my GVH is in “total remission,” according to Dr. Linker, and I feel good. I’m getting exercise and we still occasionally get out and about. Beck is doing well, and we both feel a little guilty at times. Is this real, or are we on vacation? Life is good. We’re still not sure when we will be returning to Manteca. We don’t expect to get a warning. We expect to go to the clinic one day and they’ll tell us “We don’t need to see you twice a week any more, once is sufficient. You can go home now.” It will be met with mixed emotions. You can’t do in Manteca what you can do in San Francisco, and the scenery is much worse. On the other hand, it’s home.
That’s it from here. Keep those cards and letters coming, and if you want to get a personally guided tour of San Francisco or just have a fine meal, give us a call. Again, I don’t know how much longer we’ll be here so call soon. Our love to everyone.

Outside Ferry Building

Emily and Rick at “the big one”