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
Thursday, December 19, 2019
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
Wednesday, September 18, 2019
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.
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
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.
Sleep well,
Beryl
Monday, September 9, 2019
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
Friday, September 6, 2019
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
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
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
Monday, August 26, 2019
In the words of Talking Heads...."I'm Still Waiting".
Hey,
My counts are still too low to go to Houston for round 2. Houston has asked UVA to do a biopsy so we know where I am, blast-wise. So that's happening on Weds. I had plane tickets twice and canceled them so I'm waiting for a change before I buy them again.
Either way- the garden is lovely and the kids are great.
Still waiting,
Beryl
https://www.youtube.com/watch?v=ICv27M744Bs
My counts are still too low to go to Houston for round 2. Houston has asked UVA to do a biopsy so we know where I am, blast-wise. So that's happening on Weds. I had plane tickets twice and canceled them so I'm waiting for a change before I buy them again.
Either way- the garden is lovely and the kids are great.
Still waiting,
Beryl
https://www.youtube.com/watch?v=ICv27M744Bs
Saturday, August 17, 2019
Hold Yer Horses Little Lady!
Hi,
So James suggested I reach out to Houston (before we hop on a plane) and make sure they have my latest counts, just in case there is an issue. So, I did. And...there's an issue. My counts have not recovered enough to get the second treatment, so, we are home for another week. I'm sending MD Anderson my counts now, to make sure they are receiving current info. This would have been awful to schlep out there and be told to go home and come back. So, I'm hoping my blood count and platelets improved. I had a blood transfusion on Thursday and again today. My platelets are low but I haven't need a platelet transfusion. Oy.
Take care,
Beryl
So James suggested I reach out to Houston (before we hop on a plane) and make sure they have my latest counts, just in case there is an issue. So, I did. And...there's an issue. My counts have not recovered enough to get the second treatment, so, we are home for another week. I'm sending MD Anderson my counts now, to make sure they are receiving current info. This would have been awful to schlep out there and be told to go home and come back. So, I'm hoping my blood count and platelets improved. I had a blood transfusion on Thursday and again today. My platelets are low but I haven't need a platelet transfusion. Oy.
Take care,
Beryl
Sunday, August 11, 2019
Moving Forward
Hi,
Things are feeling pretty good. I'm needing platelets regularly and blood every few weeks but that's expected. My counts are not fab- the white counts are still low and I'm still without an immune system BUT, my blasts are gone from regular blood tests and that was the big goal. I've been seeing a lot of the kids and the grandkids which has been a wonderful gift. We are in the throes of the birthday month so- they have to see me!
James continues to be fantastic. You never know who you've married until a shit storm happens. I will say, he's always been a keeper. My friends Silvia and Joe stayed over for a visit and it was great. I've always heard it's important to have social contact when you are ill but I get the real importance of it. When good friends are around, you rise to the occasion. Then, you're there. You've risen. That helps keep you up. So
that's what I've learned.
This morning I ordered bulbs for planting this Fall. James will do most of the work and I will reap the benefit! Our goal is to plant the bulbs now (Fall) and in the Spring, after the transplant and recovery, sit on the front porch with the grandkids and marvel at their beauty. Good goal. While Silvia was here, I asked her to photograph the fam. She is S. Florida's most beloved photographer, as you know. Isn't Rowan a spiffy dresser??
xoB
Things are feeling pretty good. I'm needing platelets regularly and blood every few weeks but that's expected. My counts are not fab- the white counts are still low and I'm still without an immune system BUT, my blasts are gone from regular blood tests and that was the big goal. I've been seeing a lot of the kids and the grandkids which has been a wonderful gift. We are in the throes of the birthday month so- they have to see me!
James continues to be fantastic. You never know who you've married until a shit storm happens. I will say, he's always been a keeper. My friends Silvia and Joe stayed over for a visit and it was great. I've always heard it's important to have social contact when you are ill but I get the real importance of it. When good friends are around, you rise to the occasion. Then, you're there. You've risen. That helps keep you up. So
that's what I've learned.
This morning I ordered bulbs for planting this Fall. James will do most of the work and I will reap the benefit! Our goal is to plant the bulbs now (Fall) and in the Spring, after the transplant and recovery, sit on the front porch with the grandkids and marvel at their beauty. Good goal. While Silvia was here, I asked her to photograph the fam. She is S. Florida's most beloved photographer, as you know. Isn't Rowan a spiffy dresser??
xoB
Saturday, August 3, 2019
Home!!
Hi,
We are home!!! We had a great dinner with the "kids" at Katie and Lyle's. It was great. I'm moving very slow taking it easy. It's only way I CAN take it! It's so good to be home! We go back to Houston on August 18th and leave again on the 22nd. I'll have 2 more doses of atomic chemo and come home to recover. Then, 4-6 weeks...transplant!
I'm going to slowly fold clothes.
xoB
We are home!!! We had a great dinner with the "kids" at Katie and Lyle's. It was great. I'm moving very slow taking it easy. It's only way I CAN take it! It's so good to be home! We go back to Houston on August 18th and leave again on the 22nd. I'll have 2 more doses of atomic chemo and come home to recover. Then, 4-6 weeks...transplant!
I'm going to slowly fold clothes.
xoB
Wednesday, July 31, 2019
The future is clear
Hi,
So we met with the big doc (he is awesome) and he said my blasts went from 24 to 6 and that he believes the trajectory will continue downward. The plan is to go home tomorrow (AHHHHHHHH!!!!) and rest and recover and go back on Aug 19th-Aug 22 for 1 last out patient treatment. My counts need to recover before I can do a second dose. I will be seeing my cville doc for labs 3x a week. For the next cycle- it will be 1 fewer treatment and smaller doses. Then in 4-5 weeks I should be ready for my transplant. I will be in complete remission which is ideal. Of course I asked if I could skip the transplant and he said no- the remission will only last a few months and then I'll have leukemia again. Just thought I'd ask. This is the best case scenario. I'll be at UVA for about a month and then home recovering for 3-6 months. (same as in Richmond in 2010). I think the hardest part is over. It's a marathon.
So James and I are mostly packed up. Our niece, Maggie and her husband Matt and kids Kara and Lana came over for dinner. James was great with the kids and I got a chance to catch up with Maggie. She and Matt and their girls are wonderful and it was a pleasure to see them.
Needless to say, I can NOT wait to get home.
Ok- lights out!
xoB
So we met with the big doc (he is awesome) and he said my blasts went from 24 to 6 and that he believes the trajectory will continue downward. The plan is to go home tomorrow (AHHHHHHHH!!!!) and rest and recover and go back on Aug 19th-Aug 22 for 1 last out patient treatment. My counts need to recover before I can do a second dose. I will be seeing my cville doc for labs 3x a week. For the next cycle- it will be 1 fewer treatment and smaller doses. Then in 4-5 weeks I should be ready for my transplant. I will be in complete remission which is ideal. Of course I asked if I could skip the transplant and he said no- the remission will only last a few months and then I'll have leukemia again. Just thought I'd ask. This is the best case scenario. I'll be at UVA for about a month and then home recovering for 3-6 months. (same as in Richmond in 2010). I think the hardest part is over. It's a marathon.
So James and I are mostly packed up. Our niece, Maggie and her husband Matt and kids Kara and Lana came over for dinner. James was great with the kids and I got a chance to catch up with Maggie. She and Matt and their girls are wonderful and it was a pleasure to see them.
Needless to say, I can NOT wait to get home.
Ok- lights out!
xoB
Tuesday, July 30, 2019
Monday, July 29, 2019
I received a bill from the hospital.....
Hi,
I received an on-line bill and I was afraid to open it. It was 49.00. PVCC has GREAT insurance!
Heavy sigh of relief!
B
I received an on-line bill and I was afraid to open it. It was 49.00. PVCC has GREAT insurance!
Heavy sigh of relief!
B
Last Night in the Hospital!
Hi,
This is the last night- the last night of
being awakened in the middle of the night of
taking baths with handiwipes (hospital style)
not having a bathroom
lugging around a chemo pole
eating the same food
dealing with people in and out all day
always being cold
needing help to get dressed
being worried about the .05% of germs that sanitizers don't kill, that love hospitals
crappy internet
wearing slippers
weird pillows and sheets
having tons of drugs in my body
never being in dark and quiet
not breathing fresh air or hearing birds
and I could go on...but you get the picture.
I have another Bone Marrow biopsy tomorrow and will leave the hospital at some point...could be day or night
Weds I'll come in as an outpatient and have labs and see the Doc at 2:00. He'll decide if I'm staying for another week as an out patient and start a new course or go home or go home and come back. All will be revealed!
My doctor said I was doing really well and that they had essentially let off an atomic bomb in my body and that takes some time to recover from. It was only because I was so fit, that they even considered letting me do the trial. I've been being a little nice to myself, hearing that. I've felt like a slacker. So glad this is the last night.
xoxo Beryl
This is the last night- the last night of
being awakened in the middle of the night of
taking baths with handiwipes (hospital style)
not having a bathroom
lugging around a chemo pole
eating the same food
dealing with people in and out all day
always being cold
needing help to get dressed
being worried about the .05% of germs that sanitizers don't kill, that love hospitals
crappy internet
wearing slippers
weird pillows and sheets
having tons of drugs in my body
never being in dark and quiet
not breathing fresh air or hearing birds
and I could go on...but you get the picture.
I have another Bone Marrow biopsy tomorrow and will leave the hospital at some point...could be day or night
Weds I'll come in as an outpatient and have labs and see the Doc at 2:00. He'll decide if I'm staying for another week as an out patient and start a new course or go home or go home and come back. All will be revealed!
My doctor said I was doing really well and that they had essentially let off an atomic bomb in my body and that takes some time to recover from. It was only because I was so fit, that they even considered letting me do the trial. I've been being a little nice to myself, hearing that. I've felt like a slacker. So glad this is the last night.
xoxo Beryl
Sunday, July 28, 2019
One more thing
Look how much my Locust Bean has grown!! My friend, Tim M. took this pic.
LOVE!!!
Here's a pic
LOVE!!!
Here's a pic
of what it can look like:
That's prolly photoshopped. Still....
xoB
Nearly there!
Hi,
So I have 2 more days until I am released from the hospital. I am doing well and the docs are moving towards my release. I have a biopsy on Tues and meet with my Dr. on Weds. On weds it will be 28 days from my first cycle. The doc may say I'm in remission OR he may ask me to stay another week as an outpatient and do a second cycle, then go home. The cycle takes 5 days, if it's the same as the first. At first I freaked out and then realized this is a marathon. Either way, I'll be out of isolation and the hospital sometime on Tuesday. James and I have agreed that there will be pie when I'm out. I will take photos. And now, heres a baby, 6 months old next week!!! Do NOT mess with her. Or her cat. Or parents. Or grandparents.
xoB
So I have 2 more days until I am released from the hospital. I am doing well and the docs are moving towards my release. I have a biopsy on Tues and meet with my Dr. on Weds. On weds it will be 28 days from my first cycle. The doc may say I'm in remission OR he may ask me to stay another week as an outpatient and do a second cycle, then go home. The cycle takes 5 days, if it's the same as the first. At first I freaked out and then realized this is a marathon. Either way, I'll be out of isolation and the hospital sometime on Tuesday. James and I have agreed that there will be pie when I'm out. I will take photos. And now, heres a baby, 6 months old next week!!! Do NOT mess with her. Or her cat. Or parents. Or grandparents.
xoB
Friday, July 26, 2019
Still here
My friend, Ana, took this pic several days ago. This is the side of James's office. We had a friend build the boxes and I planted them with seeds this spring. Such an improvement! I'm still here. My lip hasn't completely healed and I'm not sure why. The first results of my bone marrow biopsy have started coming in. They saw a lot of nothing which is what they hoped for. I have another one on the 30th which is also theoretically my discharge day. Who knows when that will happen- they are on a 24/7 cycle here. I can not wait to have a shower. AND to put on my clothes by myself. It's a big production- they thread all the bags of stuff I infuse through my sleeves and then rethread the clean clothes through the infusion bags. It's not the worse thing but it's part of the hell of being in here. I shuffle around surrounded by loops of cords, very carefully so I don't trip. Imagine just walking?? I'm going to stop my kvetch, although I promise, I could go on. I've been getting pictures of baby Rowan throughout the day until her bedtime. That is one cute baby. I am not kidding. Thomas' new rainbow room is finished and looks amazing. I can't wait to get home. It's hella hot here- or so I hear. I can't wait to be outside again. I'm still on anti viral, anti fungal, and blood pressure meds. Their blood pressure cuff is brutal. No lie. It feels like they are going to break my arm. Also- my hair is definitely falling out. Which, considering the weather may be ok.
Keep sending me the energy and love.
Take care,
Beryl
Friday, July 19, 2019
Day 16
Hi,
My mouth/face infection is almost gone. I'm still needing platelets regularly. I'm still ready to go home, but I get why it's important to be here. The days go by pretty fast, but there are so many of them. The docs are very happy with my progress.
And now for what's happening in my garden thanks to Betsy C. She sent me a few photos which is almost as good as grandkid pics. Rowan is sitting up by herself now. She is a strong and adorable little girl. Thomas is Thomas. I miss them and my kids so much.
Look- the trellis roses are blooming!!!!
My mouth/face infection is almost gone. I'm still needing platelets regularly. I'm still ready to go home, but I get why it's important to be here. The days go by pretty fast, but there are so many of them. The docs are very happy with my progress.
And now for what's happening in my garden thanks to Betsy C. She sent me a few photos which is almost as good as grandkid pics. Rowan is sitting up by herself now. She is a strong and adorable little girl. Thomas is Thomas. I miss them and my kids so much.
Look- the trellis roses are blooming!!!!
Look at these Susans and Zinnias!!
Your welcome!
Wednesday, July 17, 2019
Final Day of the CONE
Hi,
Today is day 14, so theoretically things should improve. They are still trying to fight the infection I have in my face and mouth. I went to the dentist today- she said my teeth were excellent (I am a dental hygiene maniac) I had a CT done of my face, I'll hear results tomorrow. The docs are going wild on the antibiotics.
Other than that I can eat again, I didn't exercise today but I will tomorrow. I did a few stretches but that was it. I'm getting a unit of blood today and my hair is starting to grow back. I'm just going to say, therapy, visualization and relaxation techniques are freekin KEY. (therapist husband, granddkids and children/wives are key too) And now- here is a pic of me, and my two colleagues from Barry University, both wonderful artists, Angi Curreri and Silvia Lizama. We use to call ourselves the "three fabulous babes". My brother, Joe, took the picture. I didn't even have to airbrush us!
Take care, Beryl
Today is day 14, so theoretically things should improve. They are still trying to fight the infection I have in my face and mouth. I went to the dentist today- she said my teeth were excellent (I am a dental hygiene maniac) I had a CT done of my face, I'll hear results tomorrow. The docs are going wild on the antibiotics.
Other than that I can eat again, I didn't exercise today but I will tomorrow. I did a few stretches but that was it. I'm getting a unit of blood today and my hair is starting to grow back. I'm just going to say, therapy, visualization and relaxation techniques are freekin KEY. (therapist husband, granddkids and children/wives are key too) And now- here is a pic of me, and my two colleagues from Barry University, both wonderful artists, Angi Curreri and Silvia Lizama. We use to call ourselves the "three fabulous babes". My brother, Joe, took the picture. I didn't even have to airbrush us!
Take care, Beryl
Friday, July 12, 2019
Update!
Hey,
So I am moving along. I am in the chemo cone- where side effects live. So far I have a non-itchy rash and a little something going on in my mouth. No one is worried. My heart rate, blood oxygen and temp are all normal. I haven't had the "food tastes weird" thing yet, but I'm counting on it to take off that freshman 15. I made my rolly bed table into a standing desk, which is my best idea today. The days are passing. The thinking is I'll be discharged on the 30th, see my doc 0n the 31st and be on a plane August first. You all know how goal oriented I am. In the meantime, Thomas is reading and Rowan is sitting up!!! Here's a pic of James in the glass booth. We put the phones on speaker and just do what we are doing. Then, here's a view from my room. This is the view from everyone's room.
Oy!
xoxoxoBeryl
So I am moving along. I am in the chemo cone- where side effects live. So far I have a non-itchy rash and a little something going on in my mouth. No one is worried. My heart rate, blood oxygen and temp are all normal. I haven't had the "food tastes weird" thing yet, but I'm counting on it to take off that freshman 15. I made my rolly bed table into a standing desk, which is my best idea today. The days are passing. The thinking is I'll be discharged on the 30th, see my doc 0n the 31st and be on a plane August first. You all know how goal oriented I am. In the meantime, Thomas is reading and Rowan is sitting up!!! Here's a pic of James in the glass booth. We put the phones on speaker and just do what we are doing. Then, here's a view from my room. This is the view from everyone's room.
Oy!
xoxoxoBeryl
Sunday, July 7, 2019
Last Chemo tomorrow
Hi,
I am getting my hair buzzed tomorrow morning and probably starting isolation afterwards. I will leave the room, take a shower, and the cleaners will clean the room, wipe down/sanitize everything I own and then I'll be in isolation.
I am feeling ok.My numbers are dipping and I'm tired. I have an exercise bike in the room so I'll try to exercise. Tomorrow I'll take a photo of the view from my room. I see nothing but tall medical buildings.
I'm off to sleep.
Take care,
B
I am getting my hair buzzed tomorrow morning and probably starting isolation afterwards. I will leave the room, take a shower, and the cleaners will clean the room, wipe down/sanitize everything I own and then I'll be in isolation.
I am feeling ok.My numbers are dipping and I'm tired. I have an exercise bike in the room so I'll try to exercise. Tomorrow I'll take a photo of the view from my room. I see nothing but tall medical buildings.
I'm off to sleep.
Take care,
B
Friday, July 5, 2019
I am in it!
Hi,
I finally got in Weds Night and started treatment Thurs. Today I was moved into the isolation section and when my numbers drop, I'll be confined to y room until they come back. I have more chemo tomorrow, then rest then the final round on Monday. James is with me until I am in isolation and then we'll have to visit through a glass window or skype. This is really weird. I hope it works. If it does, I'll be ready for the transplant. Oddly enough, the transplant is less strict than this. Maybe that's why their success rate is so high. I'm being as good a patient as I can. Although, they have made several mistakes on my regular meds so James and I are being very watchful. James is his usual bulldog self. He's the perfect storm. He's who you want to have your back. I brought pics of my family and my sweet house. I made them poster sized so I can really see them. They really help.
Stay tuned and keep me in your prayers.
Healing,
Beryl
Tuesday, July 2, 2019
Still in a holding pattern
Hi,
I wasn't admitted today. The room wasn't ready at 4pm, not ready at 7pm and still needed cleaning which takes several hours. The plan was for me to wait and get the Picc line put in sometime tonight or early morning (like 2:00 am.) That wasn't going to work for me so they called my doc and told him I wanted to sleep in the hotel and try again tomorrow. Apparently things in admission are loose. Hmmm. We went to Target and bought kitchen stuff for James and t-shirts for me. I am still not sure where the picc line will be but I do know it needs to be accessible. In the meantime, here is a drawing from Thomas called Rainbow Hurricane.
Night,
B
PS I did get a lot of grading done today!
I wasn't admitted today. The room wasn't ready at 4pm, not ready at 7pm and still needed cleaning which takes several hours. The plan was for me to wait and get the Picc line put in sometime tonight or early morning (like 2:00 am.) That wasn't going to work for me so they called my doc and told him I wanted to sleep in the hotel and try again tomorrow. Apparently things in admission are loose. Hmmm. We went to Target and bought kitchen stuff for James and t-shirts for me. I am still not sure where the picc line will be but I do know it needs to be accessible. In the meantime, here is a drawing from Thomas called Rainbow Hurricane.
Night,
B
PS I did get a lot of grading done today!
Monday, July 1, 2019
The plan begins tomorrow
Hi,
We spoke with the Doc after a day of tests.
I start the two drugs in a sequence for the first 5 days. Then that's it for taking the drugs. Then the drugs start doing their work and I am moved to an isolation unit because essentially I will have no immune system. They will keep me there for 20plus days until my counts come back up. If all goes well I will come home and possibly go into transplant if I am in remission. If I don't go into remission, I will come back to Texas for a month or so and get a second dose OR if the transplant isn't ready to go, I'll come back to Texas and have a smaller dose to keep me in remission. After the first 5 days (or so) I won't be able to have any visitors (even James). They say the biggest risk is infection and since they initiated this stricter protocol their infection rate has dropped 30% so I'm happy to comply. It's interesting that they are stricter here than VCU was with visitors when I had my transplant there.
The appts went very smoothly- they know what they are doing.
So, that's the plan. I didn't expect them to be so strict about visitors but I definitely don't want infection. James and I can speak through a glass (like prison!) and I'm guessing we'll skype a lot. The Doc said I will lose weight and maybe/probably my hair. They said I should be fine for teaching on-line etc. I'm glad I'll have work to do. That and on-line shopping for my skinny new self.
I'll keep you posted.
Thanks for your energy and love.
Take care,
Beryl
Sunday, June 30, 2019
The Eagle Has landed
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!
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!
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
Tuesday, April 23, 2019
good bloodwork
My counts were really good today- hemoglobin 9.2 (the highest it has been since I relapsed) and my platelets 242 which is the highest they have been in a year. This is part of what my dr is looking at and is feeling good about. I start the next cycle tomorrow. My counts will def go down -that's the nature of this thing. Here is a picture Bridget took of me, Thomas and Rowan on Easter. Yes, I am wearing an apron. Where the hell are my pearls?!
Take care,
Beryl
Sunday, April 21, 2019
Nothing is clear and all is a mystery
Happy Easter!
We had the family over for lunch and it was great. After everyone left James and I took a nap. A perfect day!
So the tests results are unclear. My boy/girl ratio is almost 50/50 (half of my old cells half of my donor cells) which is a little better. My blast counts are a tiny bit better. My doctor (Dr. Douvas) says looking at my overall blood counts, the test results and my boy/girl counts, he thinks I am slowly making progress. He is sending the biopsy samples to MD Anderson in Texas to run the tests again. The two tests that analyze the blasts (bad blood cells) are still very far apart. One suggests 4.5% blasts which is close to remission and the other 14.5% which is close to Leukemia. There is no way I can go into transplant with those numbers. This past month I needed a blood transfusion one time. Last month it was 2 blood and two platelets. I am receiving a little less chemo now so that is probably why. I still go to the clinic 2x a week to have my blood checked to see if I need transfusions. Next week my doc will have a plan but it looks like chemo, biopsy, rinse and repeat. He heard from a doc at John Hopkins who has a patient using the same chemo regiment and she told him it is very slow. We had heard from the doc at MD Anderson that the treatment had very fast results (which was what I was going with.) I'm thinking it's the slow boat to health. The worst case would have been increased blasts and that didn't happen.
So, I am still teaching on-line and doing the best I can. I am generally low energy but I still do stuff, just rest in between. I see the Grandkids regularly and am gardening. I garden a little and rest a little. I must say though, my garden is looking amazing. I'm planting flowers with the hope that I will get the transplant and come home and recover while seeing the flowers go crazy.
One day at a time with no idea of anything.
I keep saying to myself, "this time next year I'll be completely healed".
Take care and happy Spring,
Beryl
We had the family over for lunch and it was great. After everyone left James and I took a nap. A perfect day!
So the tests results are unclear. My boy/girl ratio is almost 50/50 (half of my old cells half of my donor cells) which is a little better. My blast counts are a tiny bit better. My doctor (Dr. Douvas) says looking at my overall blood counts, the test results and my boy/girl counts, he thinks I am slowly making progress. He is sending the biopsy samples to MD Anderson in Texas to run the tests again. The two tests that analyze the blasts (bad blood cells) are still very far apart. One suggests 4.5% blasts which is close to remission and the other 14.5% which is close to Leukemia. There is no way I can go into transplant with those numbers. This past month I needed a blood transfusion one time. Last month it was 2 blood and two platelets. I am receiving a little less chemo now so that is probably why. I still go to the clinic 2x a week to have my blood checked to see if I need transfusions. Next week my doc will have a plan but it looks like chemo, biopsy, rinse and repeat. He heard from a doc at John Hopkins who has a patient using the same chemo regiment and she told him it is very slow. We had heard from the doc at MD Anderson that the treatment had very fast results (which was what I was going with.) I'm thinking it's the slow boat to health. The worst case would have been increased blasts and that didn't happen.
So, I am still teaching on-line and doing the best I can. I am generally low energy but I still do stuff, just rest in between. I see the Grandkids regularly and am gardening. I garden a little and rest a little. I must say though, my garden is looking amazing. I'm planting flowers with the hope that I will get the transplant and come home and recover while seeing the flowers go crazy.
One day at a time with no idea of anything.
I keep saying to myself, "this time next year I'll be completely healed".
Take care and happy Spring,
Beryl
Wednesday, April 10, 2019
This is the post I thought I lost!!! DOH!!!!!
Hi,
I'm hanging in- still waiting. I have a biopsy next monday April 15th. The results should be back by the end of the week or early the following week. My doc is sending the samples to the UVA lab and the lab at MC Anderson in Houston. The results from the last teats have been odd. They use two different tests to see where I am with the blasts. The blasts are abnormal cells that the body eliminates unless you have a problem. 1-3% is normal, anything else indicates a problem. 21% is considered Leukemia. My last two tests have show 3-5% and 15%. The tests are very inconclusive and have everyone scratching their heads. Hopefully, using the two labs, we may see something more conclusive. I am living in the now.
My energy is ok. I need transfusions of blood and or platelets after the chemo rounds. My blood gets better in between chemos. I'm still gardening - the spring is amazing here, but I take a lot of rests. My neighbor use to call me a beast. I am not a beast these days. Hopefully after the transplant. I'm seeing a lot of the grandkids and James and I are focusing on doing fun things. We have both put on weight and we call it our "food baby". Thomas, James and I compare our food babies. Believe it or not, James wins!!
I'll post after the results. Keep me in your prayers. I'm going to finish taking my vitamins (so so many) and go work in the garden.
Take care,
Beryl
I'm hanging in- still waiting. I have a biopsy next monday April 15th. The results should be back by the end of the week or early the following week. My doc is sending the samples to the UVA lab and the lab at MC Anderson in Houston. The results from the last teats have been odd. They use two different tests to see where I am with the blasts. The blasts are abnormal cells that the body eliminates unless you have a problem. 1-3% is normal, anything else indicates a problem. 21% is considered Leukemia. My last two tests have show 3-5% and 15%. The tests are very inconclusive and have everyone scratching their heads. Hopefully, using the two labs, we may see something more conclusive. I am living in the now.
My energy is ok. I need transfusions of blood and or platelets after the chemo rounds. My blood gets better in between chemos. I'm still gardening - the spring is amazing here, but I take a lot of rests. My neighbor use to call me a beast. I am not a beast these days. Hopefully after the transplant. I'm seeing a lot of the grandkids and James and I are focusing on doing fun things. We have both put on weight and we call it our "food baby". Thomas, James and I compare our food babies. Believe it or not, James wins!!
I'll post after the results. Keep me in your prayers. I'm going to finish taking my vitamins (so so many) and go work in the garden.
Take care,
Beryl
Argh! I lost a post
Hi,
I just wrote a long post and somehow lost it. Argh! Anyway- I'm hanging in- I have a biopsy next Monday and in a week, we'll have some results. There are several possibilities but we'll wait and see what the deal is. In the meantime I'm moving slow but I'm still moving. I'm doing school work, gardening and hanging with the Grandkids. Caffeine is my new best friend. Yesterday was Thomas Tuesday and today is Rowan Wednesday! I'll try to include a pic of my dafs.
Keep me in your prayers,
Beryl
I just wrote a long post and somehow lost it. Argh! Anyway- I'm hanging in- I have a biopsy next Monday and in a week, we'll have some results. There are several possibilities but we'll wait and see what the deal is. In the meantime I'm moving slow but I'm still moving. I'm doing school work, gardening and hanging with the Grandkids. Caffeine is my new best friend. Yesterday was Thomas Tuesday and today is Rowan Wednesday! I'll try to include a pic of my dafs.
Keep me in your prayers,
Beryl
Friday, March 22, 2019
Friday, March 8, 2019
Mixed results
Hi,
So the results are partially in. There are 3 ways of looking at the blasts. One way says they are up to 15.5, one says they are down to 5 and the third isn't in yet. My boy cells are coming back- 60% boy 40% old cells. That's the best it's been in a long time. So the chemo seems to be doing the job. I was hoping it would be a month and I'd be back in remission but apparently that didn't happen. It was very unrealistic but that's what I was thinking would happen. I've been needing platelets and blood very regularly but today I was ok. It's hard to know how to feel. I'm def feeling sad about it. I want to push through and get this done. Apparently, I am not in charge.
So the results are partially in. There are 3 ways of looking at the blasts. One way says they are up to 15.5, one says they are down to 5 and the third isn't in yet. My boy cells are coming back- 60% boy 40% old cells. That's the best it's been in a long time. So the chemo seems to be doing the job. I was hoping it would be a month and I'd be back in remission but apparently that didn't happen. It was very unrealistic but that's what I was thinking would happen. I've been needing platelets and blood very regularly but today I was ok. It's hard to know how to feel. I'm def feeling sad about it. I want to push through and get this done. Apparently, I am not in charge.
I'm going to cuddle up in my bed now and read and nap. It's snowing very lightly and my house is nice and warm. I saw Thomas last night and that was wonderful.. I also saw baby Rowan on Weds and she is a cuddle bunny. I think she's going to have blue eyes, like Lyles. She's very sweet. She makes those funny faces, trying to figure out how her little body works.
I'm going to see spring which I love. I'm ordering a load of mulch to get my beds ready and sowing flower seeds for the summer flowers. Thomas will help me. He's very much aware of the natural world. I have a video of him when he was a baby saying "I eat mulch all de time, dude." I'm going to try to find it. If I do, I'll post it.
Take care,
Beryl
Thursday, February 14, 2019
So Far so Good
Hi,
I have been on the two new chemos since Tues- one I take every day and the other as a subcutaneous shot 10 days on 18 days off. So far my counts looks good and I am not having any side effects other than being tired. I am going to the clinic 2x a day to make sure my counts are steady. These new chemos can have some side effects but so far it's ok. I even walked on the tread mill for 30 minutes and did some modest weight lifting. The plan is to get another bone marrow biopsy on March 4th and we'll see what we see. My UVA docs conferred with my old VCU docs and a wonderful young doc at MC Anderson in Houston. All are on board with this protocol. As soon as I am back in remission, I'll go to transplant. I feel good about this and so does James. It was his diligence that made all the docs rethink heading into transplant after I was out of remission. So Happy Valentines Day to me! Needless to say having my sons and daughter-in-laws and grandkids close by is a gift. Also you all, with your love and support help so much. Enjoy this photo of Rowan Mason Yates, as lovely as she is charming and Thomas, as charming as he is lovely.
I'll post soon.
Take care,
B
I have been on the two new chemos since Tues- one I take every day and the other as a subcutaneous shot 10 days on 18 days off. So far my counts looks good and I am not having any side effects other than being tired. I am going to the clinic 2x a day to make sure my counts are steady. These new chemos can have some side effects but so far it's ok. I even walked on the tread mill for 30 minutes and did some modest weight lifting. The plan is to get another bone marrow biopsy on March 4th and we'll see what we see. My UVA docs conferred with my old VCU docs and a wonderful young doc at MC Anderson in Houston. All are on board with this protocol. As soon as I am back in remission, I'll go to transplant. I feel good about this and so does James. It was his diligence that made all the docs rethink heading into transplant after I was out of remission. So Happy Valentines Day to me! Needless to say having my sons and daughter-in-laws and grandkids close by is a gift. Also you all, with your love and support help so much. Enjoy this photo of Rowan Mason Yates, as lovely as she is charming and Thomas, as charming as he is lovely.
Take care,
B
Tuesday, February 5, 2019
New Year New Baby New Plan
Hi,
So the docs are figuring out the best protocol. We go to VCU tomorrow to speak with our old doc, then the docs all talk and come up with a plan. They all agree that a transplant now would be a mistake. That was James' fear. The prospective new drugs have been pre-approved (soooooo expensive- 2 grand a pill!!) Thank you PVCC and your excellent insurance coverage. It can take some time to approve so my UVA docs got started. So I've gotten over being freaked out, mostly. I also had the flu and am on the upswing. Also Lyle and Katie have brought their daughter into the world- young Rowan Yates. She sounds smart and rich- right? She's delish. Thomas says her name is Clickclack. He also believes it's his sister. He's also delish.
I've needed two platelet infusions and one unit of blood. I'll get checked thurs again. It's the chemo from last month. It's more intense than the Vidaza.
So I am in anticipation of the next thing. I'll keep you updated and as Thomas says (for unknown reasons)..bye! Thanks for watching! Seriously- thank you for the positive energy, love and support.
Off the ledge,
Beryl
I'd include a pic but I need a haircut and I'm bragging because I still have hair! I told my transplant doc I was going to get it buzzed and she suggested I wait. She said the transplant chemo might not make me bald. I told Thomas he could cut my hair (a trade for letting me cut his). So far he has forgotten and I'm glad I listened to my doc.
So the docs are figuring out the best protocol. We go to VCU tomorrow to speak with our old doc, then the docs all talk and come up with a plan. They all agree that a transplant now would be a mistake. That was James' fear. The prospective new drugs have been pre-approved (soooooo expensive- 2 grand a pill!!) Thank you PVCC and your excellent insurance coverage. It can take some time to approve so my UVA docs got started. So I've gotten over being freaked out, mostly. I also had the flu and am on the upswing. Also Lyle and Katie have brought their daughter into the world- young Rowan Yates. She sounds smart and rich- right? She's delish. Thomas says her name is Clickclack. He also believes it's his sister. He's also delish.
I've needed two platelet infusions and one unit of blood. I'll get checked thurs again. It's the chemo from last month. It's more intense than the Vidaza.
So I am in anticipation of the next thing. I'll keep you updated and as Thomas says (for unknown reasons)..bye! Thanks for watching! Seriously- thank you for the positive energy, love and support.
Off the ledge,
Beryl
I'd include a pic but I need a haircut and I'm bragging because I still have hair! I told my transplant doc I was going to get it buzzed and she suggested I wait. She said the transplant chemo might not make me bald. I told Thomas he could cut my hair (a trade for letting me cut his). So far he has forgotten and I'm glad I listened to my doc.
Tuesday, January 29, 2019
Hold your freekin horses
Hi,The transplant is on hold. The docs are worried about my blasts and have a new plan. New chemos for a few months and then, if my blasts are down, transplant.
oy,
Beryl
Thursday, January 24, 2019
Hey Buds
Hi,
I've had a busy few days. Yesterday I had an EKG, Chest Xray, chemo and met with HR. I gotta say, PVCC takes care of it's people. Today it was the dentist and a bone marrow biopsy. They had to do it twice- my aspirate (???) was being uncooperative. James is talking with my transplant doc, Dr. Ballen about the counts. Hopefully last weeks new cycle of chemo, which I tolerated well, brought my blasts down. The immediate goal is to keep me from going to Leukemia, which is a whole other thing. We'll know some numbers in a few days. In the meantime I'm proceeding as if we are on track. I had a photo of Thomas blown up for my hospital room and I have another poster of Me and James and "the kids" from the last transplant. I bought some cute PJ's and my friend Rebekah gave me some cutish floral crocs as slippers. You know how I feel about crocs but they are floral and comfy so I'm going to try to be open minded. (my current slippers are paint spattered)
I haven't worn them yet- they are reserved for the event. My happy drugs are wearing off so I'm going to do some errands. I bought new covers and blankets for the guest room. It's looking amazing.
I'm going to include the photo of Thomas I blew up. Did I mention I have a new grand baby on the way?? They're going to come into this world the day before my transplant, I'ma need a poster of the child. My guess, looking at Katie and Lyle, it's going to be beautiful and smart. I'll include pics if I can.
Take care
Beryl 3.0 (thanks Laura, for the new name- I'm going to put it on my business cards)
I've had a busy few days. Yesterday I had an EKG, Chest Xray, chemo and met with HR. I gotta say, PVCC takes care of it's people. Today it was the dentist and a bone marrow biopsy. They had to do it twice- my aspirate (???) was being uncooperative. James is talking with my transplant doc, Dr. Ballen about the counts. Hopefully last weeks new cycle of chemo, which I tolerated well, brought my blasts down. The immediate goal is to keep me from going to Leukemia, which is a whole other thing. We'll know some numbers in a few days. In the meantime I'm proceeding as if we are on track. I had a photo of Thomas blown up for my hospital room and I have another poster of Me and James and "the kids" from the last transplant. I bought some cute PJ's and my friend Rebekah gave me some cutish floral crocs as slippers. You know how I feel about crocs but they are floral and comfy so I'm going to try to be open minded. (my current slippers are paint spattered)
I'm going to include the photo of Thomas I blew up. Did I mention I have a new grand baby on the way?? They're going to come into this world the day before my transplant, I'ma need a poster of the child. My guess, looking at Katie and Lyle, it's going to be beautiful and smart. I'll include pics if I can.
Take care
Beryl 3.0 (thanks Laura, for the new name- I'm going to put it on my business cards)
Friday, January 18, 2019
oy
Hi,
So I had a biopsy on Monday and the results show my blasts are rising pretty quickly. This isn't good. They are starting me on another round of a new chemo and hopefully that will turn this around. The transplant is still set for Jan 30th. I'll go in on the 30th, get the big chemo for a week and then the transplant on Feb 5th-ish.
I'm in it.
B
So I had a biopsy on Monday and the results show my blasts are rising pretty quickly. This isn't good. They are starting me on another round of a new chemo and hopefully that will turn this around. The transplant is still set for Jan 30th. I'll go in on the 30th, get the big chemo for a week and then the transplant on Feb 5th-ish.
I'm in it.
B
Monday, January 14, 2019
Tests and More Tests
Hi,
I spent the day at UVA getting tests in prep for the big event. I had a Pulmonary Function Test (good results) a bone marrow biopsy (we'll see in a few days but I'm guessing I have cancer), an echo cardiograph (looks fine) and they took a ton of blood to test for a ton of things. The entry date for the hospital is Jan 27-30th somewhere in there, and the transplant will take place 7 days later. They estimate a month in the hospital and if all looks good, back home to rest and heal for 6 months or so. It all depends on my immune system growing, bone marrow growing, ability to make blood etc.
So I'm busy getting ready, getting things in order at home and at school.
The transplant doc says the chemo regime will be a little lighter because of my age but they expect it will do it's job. So far I am liking the transplant team. I feel strongly that this is my best option but it's still scary as hell.
My daughter-in-law, Katie Mason-Yates' mother, Jama Mason has offered to organize my after hospital care. The plan so far looks like February in the hospital, James will spend the first week out with me and he'll drop me off at the clinic when I need infusions/meds. I'll need someone to drive me home and stay with me until he gets home. I'll also need help on off clinic days. I'll post Jama's contact once we have a system in place in case anyone has the time or interest in helping me through this. I'm resisting hiring a stranger- that would be very tough. Anyway.... I need some blood- I'm a pint short so I'll be getting a pint tomorrow morning.
Did I mention I bought 3 pairs of cute PJ's?
I'll keep you all up to date so that when we talk, we can focus on gardening, art, and of course my grandson, Thomas. I have another grandchild on the way too. We may share birthdays! It's first, my third!
Take care,
Beryl
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