Hi,
We are in Texas getting treatment. The next time I come (two weeks from now) I'll have another biopsy. If my blasts continue to rise we'll pivot to a new treatment that has just moved into phase two and has been very effective for people that didn't respond to the trial I'm on now. Dr. Daver says each treatment is a bridge and the science is changing so fast that we still have many options. I'm going to focus on that. I'm also visualizing lily pads- I keep leaping from one to another. I've been leaping for a long freekin time but I'm grateful to have more options.
En la lucha,
Beryl
Monday, January 27, 2020
Saturday, January 18, 2020
Just like the stock market!
Hi,
We got back from Texas last Tues- it was an epic flight that involved fog, a crappy hotel and so much more! My blasts are a little up (14) Not great not horrible. Some people take 11 treatments to get into remission and I am on 4. It's a slog. My number one concern is if I can get to S. Fla. in time for stone crab season. So maybe that's a good sign.
En la luche,
Beryl
PS we saw some very nice condos for our extended visit when that happens.
and
Rowan's 1st bday is around the corner!!!
and
Bridget and Ian's new baby is too!
We got back from Texas last Tues- it was an epic flight that involved fog, a crappy hotel and so much more! My blasts are a little up (14) Not great not horrible. Some people take 11 treatments to get into remission and I am on 4. It's a slog. My number one concern is if I can get to S. Fla. in time for stone crab season. So maybe that's a good sign.
En la luche,
Beryl
PS we saw some very nice condos for our extended visit when that happens.
and
Rowan's 1st bday is around the corner!!!
and
Bridget and Ian's new baby is too!
Sunday, January 5, 2020
Friday, January 3, 2020
what a world!
Hi,
So we got back from Texas on New Years Eve. Happy New Year to you all!
Dr. Daver (Texas doc) and Dr. Ballen (cville doc) have agreed that because this is my 2nd transplant and because the immunotherapy medicine makes me a larger risk, I should have the transplant at MD Anderson. They have done many many transplants on people in my situation and UVA hasn't done any. So, the plan is the first 100 days in Texas. 30 days in the hospital (and if all goes well) 70 days in an apt nearby. James will be with me. After that I will come home and UVA will get me through the second part of the recovery. Both docs feel that is the safest route to success. We have moved the administrative stuff over to MD Anderson. The head of the transplant unit there is global and apparently "wrote the book". Dr. Daver said he is the one you want to get you through. So Houston. It's taking me some time to process this. I think it's the smartest move and the has the best potential for a good outcome.
In the meantime, I go back to Texas on Jan 12th and will have another biopsy to see where I am in the process. I may be doing the trial for several more months- no one knows. There is definitely a good plan in place. I am being very lazy and resting a lot. I have a cold (effing Uber driver) and I'm taking it easy.
James and I took Thomas to our annual trip to the Lewis Ginter Light show. It was wonderful. He is such a fun, sweet boy. We had Christmas at our house and I got lots of time with Thomas and Rowan. It was wonderful. Here's a pic of Thomas at the light show.
Happy New Year. Here's hoping this is the year I kick ass.
Beryl
So we got back from Texas on New Years Eve. Happy New Year to you all!
Dr. Daver (Texas doc) and Dr. Ballen (cville doc) have agreed that because this is my 2nd transplant and because the immunotherapy medicine makes me a larger risk, I should have the transplant at MD Anderson. They have done many many transplants on people in my situation and UVA hasn't done any. So, the plan is the first 100 days in Texas. 30 days in the hospital (and if all goes well) 70 days in an apt nearby. James will be with me. After that I will come home and UVA will get me through the second part of the recovery. Both docs feel that is the safest route to success. We have moved the administrative stuff over to MD Anderson. The head of the transplant unit there is global and apparently "wrote the book". Dr. Daver said he is the one you want to get you through. So Houston. It's taking me some time to process this. I think it's the smartest move and the has the best potential for a good outcome.
In the meantime, I go back to Texas on Jan 12th and will have another biopsy to see where I am in the process. I may be doing the trial for several more months- no one knows. There is definitely a good plan in place. I am being very lazy and resting a lot. I have a cold (effing Uber driver) and I'm taking it easy.
James and I took Thomas to our annual trip to the Lewis Ginter Light show. It was wonderful. He is such a fun, sweet boy. We had Christmas at our house and I got lots of time with Thomas and Rowan. It was wonderful. Here's a pic of Thomas at the light show.
Happy New Year. Here's hoping this is the year I kick ass.
Beryl
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