Still here in Sunny Hooston

Hi,

All is going well. I am free of my pole except when I get chemo, which is only about an hour. I have been exercising and walking. I have even been walking to the hotel (connected to the hospital by a bridge) and sitting in their garden. It is hot but I don't care. Of course I wear a mask. I have been spending money on amazon too, a skill I honed last time I was in the hospital. I'm almost half way through the hospital stay. I stay 15 days if all goes well and today is day 7. I am going to exercise now and then watch a video on creating goals and objectives for a course. Oh yeah. In the meantime, here is a photo from last May, of me and Thomas modeling new headwear (or his clothes) in the tradition of "Little Edie". If I lose any more hair, I will def be rocking Thomas's shirt on my head. It's very comfortable and surprisingly attractive. (might be the drugs talking.) There is also a picture of my granddaughter Rowan who doesn't even need to wear a hat to be gorgeous and smart! Also she loves purple and flowers.

Fighting the fight,

Beryl
PS You may notice how large Thomas's feet are. He actually wears a men's nine. We are hoping he'll grow into his giant clown feet. (Thanks, Anita)

I'm hheeerrrreeee

Hi,
I've been in the hospital since thursday. We had a challenge getting admitted but it finally happened. The tropical storm was an issue. So...I have had a dose of the two immunotherapy drugs and back on vidaza for 7 days.
That's a quick update!
I'll be in hospital for 15 days. I AM counting!
Your pal,
B

update

The machine also does the ocean, wind, rain, a single cricket, a fireplace and a ticking clock. I don't care for the ticking clock. It feels like a scary movie soundtrack.
That is all.

Howdy Parhdner

Hi,
We had a pretty good travel day. Lyle took us to the airport and brought Rowan along. I sat in the back and just reveled in being with her. I picked up Thomas at school on Monday and we ate popcorn on the back porch and listened to the birds. It was wonderful. The whole fam had a lovely goodbye dinner on Sunday which was a pleasure and a comfort. I'm a lucky woman.
We spent the day getting all the tests. ALL the tests. I met with the docs and nurses and things look good. We had a good dinner, split a tiramisu and shopped for some essentials at Target. I'm listening to bird song now, as I type this. It sounds exactly like my back porch. Lyle and Katie gave me a noise machine for the hospital. It is amazing. I have rain, birds, water against a dock and white noise. There may be other sounds too. I've only gotten as far as the birds.
Day one is over. I'll report from the hospital. I'm sure I can do this. We meet a lot of interesting people here. People travel from all over the country and world to be here.

I'm off to bird land. In the meantime- enjoy this joke from Thomas.
Sleep well,
Beryl

Once Upon a Time in.... Texas

Hi,

We just spoke with Dr. Daver, the MDAnderson doc. Here's the plan: there is a great trial that is moving into phase three soon. We go to Texas on Tues. Sept 17th, I get admitted the next day, Weds, and start treatment. I will be taking 3 drugs. The first is Vidaza ( a drug I have taken before but is revitalized by the other drugs) 7 days on, 3 weeks off. This is a treatment I can continue in Charlottesville. Then two new immunotherapy drugs that I will begin along with the Vidaza and then take every 2 weeks. I'll be inpatient for 2 weeks but not isolation. Then I'll stay in Texas for 2 more weeks and continue with the immun. drugs every 14 days. Then home. So a month in Texas. 

Then I will go back to Texas every 2 weeks for 2 days - day for treatment and one for travel and receive the immunotherapies in Texas. This will continue for 3 months or so until I am in remission and can proceed to transplant. I'll also be monitored at UVA, when I am home.  I was concerned about my low counts and he said these therapies actually do better with the lower counts and tend to bring them up. The success rate is 35-40%, which is pretty good. He is optimistic and so are James and I.  This is the weirdest life, isn't it?

Take care,

Beryl

Back to Texas

Hi,
I emailed back and forth with Dr. Daver and he proposes I go back to Texas on Sept. 18th, get another biopsy and various tests and based on the results pick from the 3 good trials available for me. I'll know more details soon but that looks like a reasonable course of action. It will be 3-4 weeks in Texas. These trials are using the new treatments that are "coming soon to a hospital near you". I did some on-line research on breakthroughs internationally with AML and Dr. Daver's name kept appearing. So I feel like I'm with the big dogs.
Take care,
Beryl

Heavy Sigh

Hi,
The results show that I am back where I started. The medicine worked and then it didn't. We have more trial options in Texas and I'll share them as I know more.
One foot in front of the other. I know the comment section of the blog isn't working. I've emailed them and have heard the sound of crickets.
Beryl