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
Thursday, December 19, 2019
ok...so......
Hi,
The blasts are up a little so transplant is put off. They are at 11%. I don't think it's unusual for them to jump around but, of course, I'm a little freaked out. So more treatment and another biopsy next month will reveal what's next.
Sigh,
B
The blasts are up a little so transplant is put off. They are at 11%. I don't think it's unusual for them to jump around but, of course, I'm a little freaked out. So more treatment and another biopsy next month will reveal what's next.
Sigh,
B
Monday, December 2, 2019
Happy December
Hey,
We had a good holiday except Katie and Rowan were sick so the Solla-Yates/Masons stayed home. They sent over food so we all had a great meal but not all together. I had a unit of blood last Weds just in case. I was close to needing it but not quite. Just in case, I had a unit. That was the low period after chemo- when all my counts are low. Today I had labs and my hemoglobin is 10 which is very high for me. My platelets had doubled and so had my neutraphils. (Spelling!!). Why that matters is that it shows my bone marrow is recovering which it didn't do after the first trial. I go back to Texas on Dec 15th and will have another biopsy and begin the next round of immunotherapy and chemotherapy. I'll know by that weds how my blasts are doing. I'm down to 7 which is great but not ready for transplant. The texas Doc said the counts can also go up a little which isn't unusual. So....if the counts go up we will continue treatment - if they go down, we schedule the transplant. It takes about 2 weeks for the donor to go through their process. I'm hopeful.. I would love to move forward and start the big recovery. I had a great day today- I exercised, walked home from my therapists office, gardened at Jame's office and took myself out for a piece of excellent pie and a cup of tea. Tomorrow I'll see Thomas.
Thanks for all the good thoughts and prayers.
Take care,
Beryl
We had a good holiday except Katie and Rowan were sick so the Solla-Yates/Masons stayed home. They sent over food so we all had a great meal but not all together. I had a unit of blood last Weds just in case. I was close to needing it but not quite. Just in case, I had a unit. That was the low period after chemo- when all my counts are low. Today I had labs and my hemoglobin is 10 which is very high for me. My platelets had doubled and so had my neutraphils. (Spelling!!). Why that matters is that it shows my bone marrow is recovering which it didn't do after the first trial. I go back to Texas on Dec 15th and will have another biopsy and begin the next round of immunotherapy and chemotherapy. I'll know by that weds how my blasts are doing. I'm down to 7 which is great but not ready for transplant. The texas Doc said the counts can also go up a little which isn't unusual. So....if the counts go up we will continue treatment - if they go down, we schedule the transplant. It takes about 2 weeks for the donor to go through their process. I'm hopeful.. I would love to move forward and start the big recovery. I had a great day today- I exercised, walked home from my therapists office, gardened at Jame's office and took myself out for a piece of excellent pie and a cup of tea. Tomorrow I'll see Thomas.
Thanks for all the good thoughts and prayers.
Take care,
Beryl
Monday, November 25, 2019
Back Again
Hi,
We just got back in to Houston. We are whooped. It is 2:47 am Virginia time and I head into clinic at 7:15. The plan is the immunotherapy infusion and then back to the airport and home Tuesday night. Oy.
I spoke with Dr. Douvas on the phone today and he said Dr. Ballen, the transplant doc will call me probably next week to start setting up appts in preparation for the transplant.
Progress..no?
Happy Thanksgiving!
Beryl
We just got back in to Houston. We are whooped. It is 2:47 am Virginia time and I head into clinic at 7:15. The plan is the immunotherapy infusion and then back to the airport and home Tuesday night. Oy.
I spoke with Dr. Douvas on the phone today and he said Dr. Ballen, the transplant doc will call me probably next week to start setting up appts in preparation for the transplant.
Progress..no?
Happy Thanksgiving!
Beryl
Friday, November 15, 2019
2% down!
Hi,
I just got the first report back from the biopsy. My blasts (blasts are bad) are down another 2% so my blast count is now 7%. It's not good enough for transplant yet but def moving in the right direction. My Houston doc, Dr. Daver, is very happy with my blood and platelet counts. They are suppressed by the traditional chemo but they came back up afterwards which means my marrow is working.
The Texas trip was wild. I was in the hospital on weds from 8am to 11:30ishpm. LLLOOONNNGGG day. The next day was short (we started at 7am) and we had time to try out TRUTH barbeque before we went to the airport. It was not as good as Killens. I think Ima give barbeque a little rest.
Take care,
Beryl
I just got the first report back from the biopsy. My blasts (blasts are bad) are down another 2% so my blast count is now 7%. It's not good enough for transplant yet but def moving in the right direction. My Houston doc, Dr. Daver, is very happy with my blood and platelet counts. They are suppressed by the traditional chemo but they came back up afterwards which means my marrow is working.
The Texas trip was wild. I was in the hospital on weds from 8am to 11:30ishpm. LLLOOONNNGGG day. The next day was short (we started at 7am) and we had time to try out TRUTH barbeque before we went to the airport. It was not as good as Killens. I think Ima give barbeque a little rest.
Take care,
Beryl
Tuesday, November 12, 2019
Back Again
Hi,
Two weeks have passed (almost) and we are back for 2 days of fun. I have a Bone Marrow Biopsy scheduled tomorrow afternoon (weds) and we'll know something a few days from then. I am beginning my next round of treatments, as well. I've been doing ok- recovering from the last cycle and actually did well. I haven't needed any platelets or blood which means my marrow has recovered and is producing stuff. I'm feeling a little low energy now (it's 1:14 am so there is that) and have generally been moving a little slower. BUT I'm still moving. We had some nice weather last sunday and James and I planted over 200 more bulbs. We still have more to do but we have to wait for a warmish day (above 50 degrees).
I'll let you know something when I know something. In the meantime I'm wearing my good luck undies. (I ONLY wear them for biopsies) My Cville doc has a good luck shirt he wears for my biopsies too. Another reason I love him.
Take care,
Beryl
PS If we get out early enough tomorrow- we are trying "Truth" barbeque. Here's hoping.
Two weeks have passed (almost) and we are back for 2 days of fun. I have a Bone Marrow Biopsy scheduled tomorrow afternoon (weds) and we'll know something a few days from then. I am beginning my next round of treatments, as well. I've been doing ok- recovering from the last cycle and actually did well. I haven't needed any platelets or blood which means my marrow has recovered and is producing stuff. I'm feeling a little low energy now (it's 1:14 am so there is that) and have generally been moving a little slower. BUT I'm still moving. We had some nice weather last sunday and James and I planted over 200 more bulbs. We still have more to do but we have to wait for a warmish day (above 50 degrees).
I'll let you know something when I know something. In the meantime I'm wearing my good luck undies. (I ONLY wear them for biopsies) My Cville doc has a good luck shirt he wears for my biopsies too. Another reason I love him.
Take care,
Beryl
PS If we get out early enough tomorrow- we are trying "Truth" barbeque. Here's hoping.
Wednesday, October 30, 2019
updates
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
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
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
Wednesday, September 25, 2019
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)
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)
Saturday, September 21, 2019
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
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
Subscribe to:
Posts (Atom)