Hi,
I enjoyed being home for over a week. I slept well and ate well and was in the garden and hanging with Thomas. Rowan had a cold so I didn't get to see her but her big news is that she's a crawler!
I came back to Houston last night (me and James) for another round of the immunotherapy trial drug. The doctor says I am doing well and we continue forward. I have my next bone marrow on Nov. 14th and then we'll see what we see. The goal is remission and transplant.
We travel back tonight in time for Halloween. Houston is very excited and worried about the world series. I wish everyone well.
Your friend in Texas,
Beryl
Wednesday, October 30, 2019
Sunday, October 20, 2019
Where the hell are we??
hi from Hotlanta,
So our plane was 1/2 hour late taking off and our connecting flight was far from where we landed in Atlanta and guess what?? We missed our flight by ONE minute and they closed the doors early. So we are enjoying the night in a Best Western and will fly out at 6am to La Guardia and then to Charlottesville. Hopefully. I have no way of tracking anything so we are just handing it over to the universe. All our luggage is in cville, except for our electronics. i am NOT going to freak out- so just forget about that. I'm sitting here in a damp towel with my shoes on. We get up at 3:30 and catch the 4am shuttle back to the airport. It could be worse- right? At least we aren't sleeping in the airport.
Hopefully we will be home tomorrow.
Oy,
Beryl
I'd send you a pic of me in my shoes and a damp towel but, as you know, I am WAY too vain for that!
So our plane was 1/2 hour late taking off and our connecting flight was far from where we landed in Atlanta and guess what?? We missed our flight by ONE minute and they closed the doors early. So we are enjoying the night in a Best Western and will fly out at 6am to La Guardia and then to Charlottesville. Hopefully. I have no way of tracking anything so we are just handing it over to the universe. All our luggage is in cville, except for our electronics. i am NOT going to freak out- so just forget about that. I'm sitting here in a damp towel with my shoes on. We get up at 3:30 and catch the 4am shuttle back to the airport. It could be worse- right? At least we aren't sleeping in the airport.
Hopefully we will be home tomorrow.
Oy,
Beryl
I'd send you a pic of me in my shoes and a damp towel but, as you know, I am WAY too vain for that!
Wednesday, October 16, 2019
We did it again!
Hey,
We went back to Killen's Barbeque yesterday. I feel ashamed except it was really really wonderful. No more though, I promise. We had the bread pudding this time and I will say it was ok but not even close to mine. I use challah bread, mango and blueberries and serve it with warm creme anglaise. I don't have a wide range of things I cook well, but I make an exceptional bread pudding. It will clog your arteries but still good.
in other news (I buried the lead)
I met with my doc to review the preliminary results of the biopsy and my blasts went from 34 to 9. He was surprised. He said it usually takes several rounds before they see any results. This was just my first round -I started the second today. So, really great news. I was very worried and wasn't expecting much. I was really just hoping it hadn't gotten worse. So. Good news from Hooston and we'll be home this Sunday.
As the cherry on the top- here's a pic of Rowan wearing her shirt as a hat and looking pretty pleased. She is definitely with me and Thomas!
We went back to Killen's Barbeque yesterday. I feel ashamed except it was really really wonderful. No more though, I promise. We had the bread pudding this time and I will say it was ok but not even close to mine. I use challah bread, mango and blueberries and serve it with warm creme anglaise. I don't have a wide range of things I cook well, but I make an exceptional bread pudding. It will clog your arteries but still good.
in other news (I buried the lead)
I met with my doc to review the preliminary results of the biopsy and my blasts went from 34 to 9. He was surprised. He said it usually takes several rounds before they see any results. This was just my first round -I started the second today. So, really great news. I was very worried and wasn't expecting much. I was really just hoping it hadn't gotten worse. So. Good news from Hooston and we'll be home this Sunday.
As the cherry on the top- here's a pic of Rowan wearing her shirt as a hat and looking pretty pleased. She is definitely with me and Thomas!
Thursday, October 10, 2019
Texas Barbeque
Hey,
To celebrate we ubered to Killens Barbeque. You know we are not big meat eaters BUT we made an exception. Styrofoam dishes, sure, no problem. We had heard it was epic so we went. It WAS epic. I left a yelp review. Regular consumption would surely destroy your heart but once every few years- why not. It was the best barbeque James and I have ever eaten. YES, even James ate a little of my ribs.
Oy.
Beryl
I wish I had a photo of me lying on the bench holding my giant stomach.
To celebrate we ubered to Killens Barbeque. You know we are not big meat eaters BUT we made an exception. Styrofoam dishes, sure, no problem. We had heard it was epic so we went. It WAS epic. I left a yelp review. Regular consumption would surely destroy your heart but once every few years- why not. It was the best barbeque James and I have ever eaten. YES, even James ate a little of my ribs.
Oy.
Beryl
I wish I had a photo of me lying on the bench holding my giant stomach.
Not neutropenic!
Hey,
As of yesterday I am not neutopenic! That's not to say I have a vital immune system but it is a move in the right direction. This is the first time since maybe April or earlier. I am still being uber cautious but again- progress. All my counts are slowly moving up.
Yay,
B
As of yesterday I am not neutopenic! That's not to say I have a vital immune system but it is a move in the right direction. This is the first time since maybe April or earlier. I am still being uber cautious but again- progress. All my counts are slowly moving up.
Yay,
B
Tuesday, October 8, 2019
What's Manga Doing???
Hi,
So I am ensconced in the hotel- very tasteful. I go to clinic 3x a wk this week for labs. So far I haven't needed anything and my counts are slowly climbing, which is good. I have a bone marrow biopsy scheduled for next Monday and the new Chemo begins on weds. I have tickets to come back to cville on Sunday the 20th
and fly back to Hooston (wahoowa bitches) on the 29th for more treatment and back home the next day on the 30th. Thomas's main concern was Halloween. I told my doc and he got it. There are a ton of big fish tanks in the hospital so I had an idea that might amuse Thomas. James shot a little video of me. I sent it to Thomas and he asked his Mom, "What's Manga doing??" The answer- whatever I want.
Take care,
B
So I am ensconced in the hotel- very tasteful. I go to clinic 3x a wk this week for labs. So far I haven't needed anything and my counts are slowly climbing, which is good. I have a bone marrow biopsy scheduled for next Monday and the new Chemo begins on weds. I have tickets to come back to cville on Sunday the 20th
and fly back to Hooston (wahoowa bitches) on the 29th for more treatment and back home the next day on the 30th. Thomas's main concern was Halloween. I told my doc and he got it. There are a ton of big fish tanks in the hospital so I had an idea that might amuse Thomas. James shot a little video of me. I sent it to Thomas and he asked his Mom, "What's Manga doing??" The answer- whatever I want.
Take care,
Wednesday, October 2, 2019
MD Anderson promises a Rose Garden
Hey,
Here's a pic of me pruning roses at the hospital with surgical scissors!
Take care,
Beryl
Here's a pic of me pruning roses at the hospital with surgical scissors!
Take care,
Beryl
Tuesday, October 1, 2019
Moving in the right direction
Hey,
It's day 13. Tomorrow I have the second dose of the immunotherapy and if all goes well I leave the hospital the following day. I'll come in 3x a week if all is well and be home. The day I leave I will have the third dose of immunotherapy and start the vidaza cycle. I'll have to leave for cville that same day to get home for day 2 of the chemo cycle. It's a juggling act. So in a month day 1 is both treatments and day 14 is just the immunotherapy. Lord.
Anyway I have been feeling good. James and I walked down 16 floors of stairs. Not UP- down. I'm going to try walking up a flight tomorrow. Maybe more- we'll see. James and I have also been pruning roses outside of the hospital. That whole "yellow rose of Texas" is a thing. They do also have pink, orange and red BUT they are not being deadheaded! So since I'll be back every two weeks I think I can work off part of my bill.
I speak to Thomas Ian and Bridget on facetime and Katie and Lyle send us those awesome "Live" phots of Rowan. I've been doing a lot of schoolwork and Christmas shopping. I am so looking forward to sleeping through the night, although I will say- the nurses are very helpful and don't come in from 10pm-5am when they take blood and vitals. Then they don't come back until 9am. I can actually Fall back asleep most mornings. The nurses are pretty fantastic.
Take care,
Beryl
It's day 13. Tomorrow I have the second dose of the immunotherapy and if all goes well I leave the hospital the following day. I'll come in 3x a week if all is well and be home. The day I leave I will have the third dose of immunotherapy and start the vidaza cycle. I'll have to leave for cville that same day to get home for day 2 of the chemo cycle. It's a juggling act. So in a month day 1 is both treatments and day 14 is just the immunotherapy. Lord.
Anyway I have been feeling good. James and I walked down 16 floors of stairs. Not UP- down. I'm going to try walking up a flight tomorrow. Maybe more- we'll see. James and I have also been pruning roses outside of the hospital. That whole "yellow rose of Texas" is a thing. They do also have pink, orange and red BUT they are not being deadheaded! So since I'll be back every two weeks I think I can work off part of my bill.
I speak to Thomas Ian and Bridget on facetime and Katie and Lyle send us those awesome "Live" phots of Rowan. I've been doing a lot of schoolwork and Christmas shopping. I am so looking forward to sleeping through the night, although I will say- the nurses are very helpful and don't come in from 10pm-5am when they take blood and vitals. Then they don't come back until 9am. I can actually Fall back asleep most mornings. The nurses are pretty fantastic.
Take care,
Beryl
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