Hi,
We are checked in to the hotel (me for a few nights and James for a month). I am trying to be ok with the hotel but I gotta say, I miss my sweet house. I see EVERY imperfection and I'm so aware of germs. Oy. It's not easy being me. If you could see my car you would wonder how I can say I am so aware of germs. It's a mystery. The garden looked so good when we left today. I hope this all goes well and the month passes quickly. Tomorrow is a day of tests and blood work. I'll also see the doc. Then we'll find the local Whole Foods and buy some staples. We brought our blender!
Take care,
Beryl
One last thing- last night the fam got together for dinner and we ate at Lime Leaf to celebrate Katies birthday. I had the best Green Curry ever! They made it mild (which is still savory and has a little bite, with tofu and extra vegetables and with brown rice. I'm still thinking about it!
Sunday, June 30, 2019
Thursday, June 27, 2019
HOUSTON.......WE HAVE A PLAN!
Hi,
So the Houston Trip was fruitful. I had a biopsy done there and spoke with the doc about options. He had several. He called me with the test results and my counts have risen (not good). BUT he had a great plan for me. He said to get to Houston asap and he would put me in a really good trial. The trial is specifically for people who had MDS and moved into Leukemia. (me!) The trial is the combination of two FDA approved drugs for Leukemia. They are both pretty good (50%) remission rate) separately, BUT together they have a 50-70% remission rate. So both drugs have already been FDA approved but only recently used together in the trial setting. So it's a relatively safe trial with very optimistic outcomes. I don't think I could ask for better than that. The plan is for us to go to Houston on Sunday, I'll have tests for 2 days to make sure of my health, and then go in the hospital on Weds. I will stay in the hospital for a month for close observation. If anything goes south, they'll be on top of it. James will be staying in a hotel across the street from the hospital that is actually owned by the hospital. It is attached by a pedestrian bridge. It is a comfy room with a kitchen so he'll have a close place to sleep and be at my beck and call! He'll be working with his clients after the first week and I'll continue teaching on-line from the hospital. It's really kind of amazing.
I'm not sure if I'll be going back to Houston for a few days a month or what. I'll learn more next week and of course things will unfold as they will. When I am in remission, I will go into transplant at UVA. The protocol there should be the same. A month in the hospital and then home for the long recovery.
I have a lot of support from family and friends and am extremely lucky to have such good insurance, a great job and wonderful colleagues/friends. I am VERY lucky. Thomas has promised to facetime with me and read books about the Paw Patrol to me. I'm also open to dinosaur and truck books. I feel very optimistic. MD Anderson is the best cancer hospital in the country and they are working closely with UVA and my doc, Michael Douvas. I have been incredibly fortunate to have this level and care. From the receptionists to the nurses to the docs- really amazing. Of course James is by my side- taking care of business and making sure I have whatever I need. I feel very lucky and very prepared for this....whatever it is. In the meantime, look at this pic of Rowan. She's almost 5 months old and already has a bold sense of style! Isn't she freekin adorable? Please hold me in light and imagine me in health and strength. Thank you for holding me in your hearts. Love, Beryl
So the Houston Trip was fruitful. I had a biopsy done there and spoke with the doc about options. He had several. He called me with the test results and my counts have risen (not good). BUT he had a great plan for me. He said to get to Houston asap and he would put me in a really good trial. The trial is specifically for people who had MDS and moved into Leukemia. (me!) The trial is the combination of two FDA approved drugs for Leukemia. They are both pretty good (50%) remission rate) separately, BUT together they have a 50-70% remission rate. So both drugs have already been FDA approved but only recently used together in the trial setting. So it's a relatively safe trial with very optimistic outcomes. I don't think I could ask for better than that. The plan is for us to go to Houston on Sunday, I'll have tests for 2 days to make sure of my health, and then go in the hospital on Weds. I will stay in the hospital for a month for close observation. If anything goes south, they'll be on top of it. James will be staying in a hotel across the street from the hospital that is actually owned by the hospital. It is attached by a pedestrian bridge. It is a comfy room with a kitchen so he'll have a close place to sleep and be at my beck and call! He'll be working with his clients after the first week and I'll continue teaching on-line from the hospital. It's really kind of amazing.
I'm not sure if I'll be going back to Houston for a few days a month or what. I'll learn more next week and of course things will unfold as they will. When I am in remission, I will go into transplant at UVA. The protocol there should be the same. A month in the hospital and then home for the long recovery.
I have a lot of support from family and friends and am extremely lucky to have such good insurance, a great job and wonderful colleagues/friends. I am VERY lucky. Thomas has promised to facetime with me and read books about the Paw Patrol to me. I'm also open to dinosaur and truck books. I feel very optimistic. MD Anderson is the best cancer hospital in the country and they are working closely with UVA and my doc, Michael Douvas. I have been incredibly fortunate to have this level and care. From the receptionists to the nurses to the docs- really amazing. Of course James is by my side- taking care of business and making sure I have whatever I need. I feel very lucky and very prepared for this....whatever it is. In the meantime, look at this pic of Rowan. She's almost 5 months old and already has a bold sense of style! Isn't she freekin adorable? Please hold me in light and imagine me in health and strength. Thank you for holding me in your hearts. Love, Beryl
Wednesday, June 19, 2019
Leaving today
Hi,
We leave today but in the meantime, look at this picture. Me and Thomas getting ready to plant the arbor James built for me!
Take care,
Beryl
We leave today but in the meantime, look at this picture. Me and Thomas getting ready to plant the arbor James built for me!
Take care,
Beryl
Wednesday, June 12, 2019
Headed for MD Anderson next week
Hi,
James and I are headed to Houston to meet with our Md Anderson doctor to discuss Clinical Trials.
Oy.
Beryl
James and I are headed to Houston to meet with our Md Anderson doctor to discuss Clinical Trials.
Oy.
Beryl
Friday, June 7, 2019
a path forward
Hi,
James and I went to the Block Cancer Center in Skokie Il. and spoke with everyone from a nutritionist to a social biologist. We were meeting with folks from 10am-6:30pm. Then flew home. They made some interesting suggestions and are pretty confidant that there is a way forward using a new chemo and being much more aggressive with nutrition and exercise. We are sharing info with our cville doc, who also spoke with folks at the MD Anderson Cancer center in houston. They want me to come to Houston and discuss clinical trials. Both of these things may dovetail. I'm feeling more optimistic and so is James. My Ben and Jerry's days are behind me for a while!
Take care,
Beryl
James and I went to the Block Cancer Center in Skokie Il. and spoke with everyone from a nutritionist to a social biologist. We were meeting with folks from 10am-6:30pm. Then flew home. They made some interesting suggestions and are pretty confidant that there is a way forward using a new chemo and being much more aggressive with nutrition and exercise. We are sharing info with our cville doc, who also spoke with folks at the MD Anderson Cancer center in houston. They want me to come to Houston and discuss clinical trials. Both of these things may dovetail. I'm feeling more optimistic and so is James. My Ben and Jerry's days are behind me for a while!
Take care,
Beryl
Monday, June 3, 2019
ok...so....
Hi,
ok- I heard from Dr. Douvas about the latest biopsy. The blasts are worse- maybe 20-21 which is the threshold for Leukemia. He is going to talk with Dr. Dauver at MD Anderson in Houston to discuss the next steps. I am very far from transplant. That's not even a discussion anymore. I'll know more in a few days or a week. I feel lots of different things, numb to scared. In the meantime, James is with me and we'll move forward.
Sigh,
Beryl
ok- I heard from Dr. Douvas about the latest biopsy. The blasts are worse- maybe 20-21 which is the threshold for Leukemia. He is going to talk with Dr. Dauver at MD Anderson in Houston to discuss the next steps. I am very far from transplant. That's not even a discussion anymore. I'll know more in a few days or a week. I feel lots of different things, numb to scared. In the meantime, James is with me and we'll move forward.
Sigh,
Beryl
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