Welcome to my world!

Hey,
19 days to go. I am on both meds now and it definitely feels like it. I am moving slow but I am moving. I see everyone wearing masks and gloves now and washing their hands like crazy- WHO style! Welcome to MY world! Here's a pic my friend Tim took of my yard. So far my neighbors Barbara and Kaye, my son Ian and grandson Lyle and now Tim are sending me pics of my garden. WOW! This is a gorgeous spring!
Stay safe,
Beryl

Day 4

Hey,
I'm still ok. My counts are starting to slide but I'm feeling pretty good. I've exercised every day and my appetite is coming back. I've been watching my granddaughter eat dinner on face time, which besides being a hoot, is inspiring. I'm following her lead. If i like it, I eat it, if not...I drop it on the floor!
I read Elizabeth Warren's speech to her staff and cried. What an inspiration.
I caught up on my grading today so I could hit the cowboy shops tomorrow for my blingy belt. I'll send photos!
Take care,
Beryl

Day 2..so far so good

Hi,
I had my second dose of the new immunotherapy today. Yesterday I was very tired after the dose and had to have a lay down. Today I went to the gym at the hotel and walked and used light weights for 30 minutes, ten had lunch and then rested a little. The plan is something like 21 days of the immunotherapy (4 pills) vidaza on the 8th-15th day (traditional chemo) then a week off. I'll be able to take the pills and the chemo inVa. next month. I'll probably have to come here once a month for the biopsy. My clinical trial nurse is............. disorganized. That's why I wasted my first week here. I see my doc on the 9th and I will share my concerns. In the meantime, James and I are checking and double checking everything she says.
We are enjoying the Spring here. We ate Bar-b-que at Killens a few days ago and are doing simple meals in the kitchenette. James is even making us green smoothies. I'm doing my school work and working on taxes. We face time with the grandkids as much as we can. That's a lovely treat.
Here's a pic of the dafs at my house- just starting to bloom.
Take care,
Beryl

PS. We went to the botanical garden here- they are f-ing clueless about garden design. I am not kidding. They are in the throes of Spring and it was dismal. We also went to the butterfly garden which was great. 

Oy

Hi,
The water main broke in Houston yesterday and everything in the city has stopped including MD Anderson. My treatment will be held off until Monday.
Take care,
B

Spring in Hooston

Hi,
We are here and settled in. We went grocery shopping and can now make a very simple meal. The treatment has not started yet- there was a snafu- more tests needed and some back and forth about my meeting the criteria. I'm set to start this Friday. My understanding is that it's a different immunotherapy in pill form. I take a pill a day and then have 7 days of Vidaza, a chemo I have been on before and tolerated well. The doc is optimistic and so are we. I have a new good luck charm- this beautiful milagro my friend Angi made. The nurse doing the biopsy thought it was a strawberry! It's the sacred heart of Jesus, not a strawberry! Today is Ash Wednesday. My first year teaching at Barry University, a Catholic College, I noticed some students with schmutz on their foreheads. I stopped them and said something like, "you have schmutz on your forehead!". My friends, Silvia and Angi, laughed when I told them and explained it was Ash Wednesday. I remember that time every year. There are a LOT of Catholics here. I am not kidding.

It's mid Spring here. The dafs are over and the tulips are just starting to fade. The roses are in full bloom as well as the azaleas and black eyed Susans!! They also have Redbuds that are in mid bloom. I hope there's some spring left in cville when we get back.

We have the day off tomorrow so we may have some adventures. We are going to see the butterfly garden and check out some barbeque. This is not confirmed- just speculation at this point.

I am doing my school work and prepping my taxes for the accountant.  AND enjoying the Spring.

Here's to a rebirth,
Beryl

Back in the Saddle

Hi,
We head back to Houston this Sunday for a month to begin another trial. It's out patient, which I am grateful for. I have no idea about what it entails. We will learn everything on Monday. In the meantime I have a new anti-fungal drug which my insurance will not pay for. It's 6000. My doc is trying to get me some help with this. This is not the first time anthem has said no, but it's the first time they are sticking to their guns. All will be revealed.
Take care,
beryl

Pivoting Again

Hi,
We are back in Texas. I had the bone marrow biopsy today and the plan was to continue on with treatment until we had the results BUT based on the blasts they found in the blood, they decided to rethink. James had been saying this all along. So I won't receive any treatment until Dr. Daver puts together the new treatment. I know he's been preparing for this since last month. So we come home tomorrow (tues) and wait to hear how we will proceed. I imagine there will be another long stay in Texas but that's based on my limited experience with this. I'll let you know when I know. I'm leaping to a new lily pad and James is carrying a towel and snacks.

Take care,
Beryl

TexasTexasTexas

Hi,
We are in Texas getting treatment. The next time I come (two weeks from now) I'll have another biopsy. If my blasts continue to rise we'll pivot to a new treatment that has just moved into phase two and has been very effective for people that didn't respond to the trial I'm on now. Dr. Daver says each treatment is a bridge and the science is changing so fast that we still have many options. I'm going to focus on that. I'm also visualizing lily pads- I keep leaping from one to another. I've been leaping for a long freekin time but I'm grateful to have more options.
En la lucha,
Beryl

Just like the stock market!

Hi,
We got back from Texas last Tues- it was an epic flight that involved fog, a crappy hotel and so much more! My blasts are a little up (14) Not great not horrible. Some people take 11 treatments to get into remission and I am on 4. It's a slog. My number one concern is if I can get to S. Fla. in time for stone crab season. So maybe that's a good sign.
En la luche,
Beryl
PS we saw some very nice condos for our extended visit when that happens.
and
Rowan's 1st bday is around the corner!!!
and
Bridget and Ian's new baby is too!

P. S. What about Rowan?

Here she is!

what a world!

Hi,
So we got back from Texas on New Years Eve. Happy New Year to you all!
Dr. Daver (Texas doc) and Dr. Ballen (cville doc) have agreed that because this is my 2nd transplant and because the immunotherapy medicine makes me a larger risk, I should have the transplant at MD Anderson. They have done many many transplants on people in my situation and UVA hasn't done any. So, the plan is the first 100 days in Texas. 30 days in the hospital (and if all goes well) 70 days in an apt nearby. James will be with me. After that I will come home and UVA will get me through the second part of the recovery. Both docs feel that is the safest route to success. We have moved the administrative stuff over to MD Anderson. The head of the transplant unit there is global and apparently "wrote the book". Dr. Daver said he is the one you want to get you through. So Houston. It's taking me some time to process this. I think it's the smartest move and the has the best potential for a good outcome.
In the meantime, I go back to Texas on Jan 12th and will have another biopsy to see where I am in the process. I may be doing the trial for several more months- no one knows. There is definitely a good plan in place. I am being very lazy and resting a lot. I have a cold (effing Uber driver) and I'm taking it easy.
James and I took Thomas to our annual trip to the Lewis Ginter Light show. It was wonderful. He is such a fun, sweet boy. We had Christmas at our house and I got lots of time with Thomas and Rowan. It was wonderful. Here's a pic of Thomas at the light show.
Happy New Year. Here's hoping this is the year I kick ass.
Beryl

ok...so......

Hi,
The blasts are up a little so transplant is put off. They are at 11%. I don't think it's unusual for them to jump around but, of course, I'm a little freaked out. So more treatment and another biopsy next month will reveal what's next.
Sigh,
B

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!