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

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

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

PS...

Really big news- Thomas is going to have a sibling next April!!!!

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.

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

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!

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!

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.

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

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

MD Anderson promises a Rose Garden

Hey,
Here's a pic of me pruning roses at the hospital with surgical scissors!
Take care,
Beryl

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

Still here in Sunny Hooston

Hi,

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

Fighting the fight,

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

I'm hheeerrrreeee

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

update

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

Howdy Parhdner

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

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

Once Upon a Time in.... Texas

Hi,

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

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

Take care,

Beryl

Back to Texas

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

Heavy Sigh

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