So it begins...again!

 Hi,

I am in the hospital- I came in Monday afternoon. I've been spinning my wheels a little- we were supposed to start but ...blah blah blah. There are so many moving parts with a trial that I have learned to add "ish" to every date. So today I started my new trial drug. I did visualizations while I took the 3 magic yellow pills and imagined all of my friends and loved ones around me, present and past. I was on the phone with James. I feel good about it all. I took a long walk this morning. I'm tired because I have trouble sleeping (really here or anywhere). 

We moved into our new and improved apt. It's not home but it's better. There is a tiny patio that faces a gorgeous pool surrounded by tropical plants. James and I want to sit out there more. There are NO train sounds 24/7 and we haven't seen any bugs. It's a little dark for my taste but we are buying lamps and making it work. We had the maintenance folks change out the shower heads too.  It is MUCH better! We even have plans to take all the dark abstract art down and replace with some simple pieces we want to make out of Mexican Oil Cloth. We can't help it. 

I should be out of the hospital on sundayish. This will be the last in hospital stay until (please please please) I get to transplant. The trial drugs are pills so I can be out patient for labs and tests etc. Lots of tests. Lots of precautions.

So, I'm still optimistic and I am still confident that I am where I should be. Here's a pic of me and my friend Carolina from several years ago. Look at all the hair!!!

En la lucha!

Beryl

BIG PIVOT!

 Hi,

So my liver enzymes are above the limit for the trial I am on and the docs have found a new mutation. So I am off this trial because the drug that killed my blasts doesn't like my liver, BUT because of the new mutation I am eligible for an even better trial with an 80% rate of success and then transplant. I have to "wash out" of the old drugs, which should help my liver enzymes. All my liver functions are good, actually normal, so the doc thinks it's because of the trial drug. So big pivot for me. As soon as I am "washed out" I'll go back in the hospital for a week and start the new regime. They are being extra careful because of the holidays and reduced staff in the outpatient clinic. So the doc is excited. He says this is a great trial with great outcomes and is suited for someone with my medical experience. 

I'm getting a liver scan for fun in an an hour so. They are being super careful with lots of protocols in place.

I'm taking a breathe. Trusting the universe and very happy to be here.

Take care,

Beryl

Everything is everything

 Hi,

So we are set to move into our new, MUCH nicer apt on dec 24th. It has real linens and cooking stuff lovely outdoor sitting areas. It aint cheap but it will be worth it. ALso- not on a busy street and NOT on the all night train line!!!

I has my second hospital stay and all went wellish. My liver enzymes are up (an expected side effect of the treatment) and they are adjusting my meds accordingly.  I was suppose to go in today for my 3rd treatment but that's pushed back to sat or mon- after my enzymes come back down. Lots of smart folks here. I met with the transplant doc today to make sure I have my ducks lined up. My donor from last year is still well and willing. They are a perfect match. My insurance has said yes- it will cover the cost which is huge. Last year the cost was 102,000,000. without insurance. It made me cry then to think about people with no insurance. It's insane. 

After this next short hospital stay I am all outpatient for the next cycle. I have a biopsy on the week of dec 28th and my doc says no matter how great the numbers are, (and they have to be perfect) I'll do a second round. If all looks good- transplant central. I'll be here a while no matter what happens.

I am doing ok- no terrible side effects, busy with work and making art. I facetime with the fam often. James is seeing clients. My sons and daughters-in law are taking well care of mail etc. It is an ok life. Very hospital centered, of course, but I'm here for the big guns. I use my "wait time" well. I'm getting my spring classes ready- lots of work there but I enjoy it.

I walked all the way back from the hospital today 1.3 miles. I felt fine. Texas is FLAT! 

I'm going to enclose a screen shot of Rowan, dressed as an adorable elf and a fam portrait of the Moriarty Solla's with their piece for LTBL. Thomas was DJ Phantasmagloria and designed the piece. Bridget supported him and made it real. Pretty great!

Stay well, The sitch is almost in the rearview!

Beryl

Let There Be Light!

 Hi,

Tonight is Let There Be Light! I wish I could be there. I will be next year! my friend and colleague, Fenella Belle is running things on the ground and Ed Miller is too. I'm not worried about a thing!

So the hospital visit was exhausting (hard to sleep) but the results are good. I'm back in the hospital now for the second round and I get out tomorrow. My numbers are looking good. We'll see how it all shakes out but I am optimistic. 

We are almost signing up for a new apt. Waiting on the paperwork. It's much nicer with places to walk and close to the hospital. We saw it last week and both liked it. Hopefully we'll have a contract tomorrow.

My doc is optimistic about this trial. He says if all goes well I'll move into transplant and if it doesn't he has 2 new trials that would be great for me. He says Leukemia research is exploding. So I am very happy to be here in the heart of progress.

I'm starting to prep for my Spring classes and grateful to have work to do and such excellent insurance. 

I'm counting the days until Jan 20th. 

We probably won't fly back to Virginia until the covid sitch is in hand. The airport was awful. I have been tested here twice and so far so good. I don't go anywhere but the hospital and home. I wear two masks and a clear guard. Sometimes I wear my glasses too- just for the fashion fun.

James is also a maniac. We are living the dream. I took a long walk today and am working on a new sequins piece. 

I facetime with Lyle and Ian and the grandkids. I miss them so.

So hold me in light and health and I'll do the same for you.

Happy Let There Be Light!

Beryl

Here's my new sequin piece- Poppies!

Welcome

 Hi,

James has this practice of saying "welcome" to whatever comes up- good or bad. So, we have been saying "your welcome"  a lot! I was admitted to the hospital Monday night after a reaction to a platelets infusion. I settled down and everything was ok. The docs went nuts with tests because this is not a good time to have an infection or whatnot. So, I have been in since Monday night. Today I was suppose to start the trial but I heard this morning that the drug makers were concerned and thought because of the holidays we should start next Monday. So that would be two weeks of spinning my wheels. But then they green lighted it and I have the medication right in front of me. It's two days of a known drug (that I have had before) and the trial drug starts on Fri, when the hospital is fully staffed, etc. So......WELCOME!

I have been working on my book for this semester's sabbatical and I have given it to my friend and colleague, Fenella Belle, to proofread and to James. I've been working on it a while and I feel good about it.

We are still organizing Let There Be Light (long-distance) and staying very busy. 

I hope you are all having a SAFE Thanksgiving. James and I will be eating together via Zoom. 

My friend and Energy Worker, Ana Blum told me this week that "Healing is Imminent". That's how I am feeling too.  

I've been in touch with my sons, daughter-in- laws and grandkids. That helps to bond me to the feature and feel very thankful for the present.

Take care and stay safe,

Beryl

We are here

Hi,

We have settled in. I may or may not be admitted into the hospital tomorrow, depending on my counts. Either way, I'm ready and trusting things will unfold as they should. The flights here were crazy. There was no social distancing and the planes were packed! This trial requires that I come back here every 2 weeks (10 days really). We are considering just staying. They'll know if it's working within a few months. We'll see. James and I can both work from here and we really can't see the kids without waiting 14 days so..... We'll see.

It is so like Miami here that it feels like home (where James and I grew up). We planted about 200  bulbs before we left for Texas. That's going to be VERY pretty!

More soon,

Beryl

 

Back to Texas

 Hi,

So my blasts are very high and some of my other counts are wack.  I will be headed back to Texas to start trial #4. James will be joining me, of course. I have no details at all. I speak with the doc tomorrow (hopefully). When I know more, I will share. In the meantime here are some halloween pics. Thomas was Totero (from My Neighbor Totero) and Hannah was one of the little creatures from the same film. James and I were Mario and Luigi. Rowan was a red fox. She was a little weirded out by us!

Take care,

Beryl

and on and on

 Hi,

Nothing much has changed.My blasts are still high but my blood counts have ben improving. My hematologist says the 2 things are incompatible. They have raised my trial drugs from 4 a day to 6 a day. I think it makes me more tired but there's so much going on, it's hard to tell. I'm taking a sabbatical from school to write a simple design book for my students. I also watch Ian's kids 3 hrs a day m-f. That's prolly why I'm tired! I'm gardening a little- the heat has been tough. So it's still one foot in front of the other. I haven't been to Texas since March and so plans to return. Covid is having it's way with my travel plans. So one foot in front of the other.

Stay safe,

B

eryl

maintaining

hi,
Still maintaining the course. I finish the 5th cycle this sunday. I am doing ok. It is crazy hot here and I don't like gardening in this heat! I bought a new treadmill and have been walking everyday for a half an hour. Not a lot but regular and it's doable. James is good. We are taking a staycation in a week. My counts are varied. Some have been very good. So I'm doing ok. I wish I could visit with my friends and see Rowan in person. These grandkids are so so so precious. Thomas and I made some tie dye clothes for him and the girls. Pretty cute!
Take care,
B

eryl

ok- I'll take it!

Hi,
I spoke with Dr. Daver today and he says to stay the course. He says it can take up to 8 months before we see the change we want and I'm in my 4th month. He wasn't upset by my counts and made note that my blood counts were doing well which is a surprise. He said they are still learning about the drug, it's trial-right? So he said we'll talk again in august but because I'm doing so well- we proceed. I've been feeling good and I want to see what happens. He said there are a few more trials that are coming up but we don't want to pivot.
So- I'll take it.
So I'm staying safe- visiting with my grandkids on line and theoretically from a distance.
What a time.
Stay well,Beryl

Heavy Sigh

Hi,
I got the big results today and the numbers aren't moving in the right direction. I feel ok- good days and ok days but mostly good. I start the next cycle this Monday. I'll speak with Dr. Daver (Houston) next week and discuss the next steps. I think (based on his conversation with my Cville doc) that he is looking at another trial. I'll know more after we speak. That is the gift of MD Anderson- they have the best of the best and it's all research all the time. My small goals are not met but my big goal is to stay alive for 3 years - when all the new treatments will be perfected and available. I have made it one year and I think I'm doing ok. I am putting one foot in front of the other and James is right there when I start to get wobbly.
I'll share more when I know more.
Stay safe,
Beryl

all's quiet..

Hi,
Happy Mother's Day. I am staying put in Cville for a while. I'll have my biopsy May 20th so hopefully we'll some improvement.
I the meantime....baby Hannah is in the world. She's a beautiful 7.2 oz girl and looks just like her brother Thomas! She was a day old and under observation in this vid. She's 2 weeks old now and kicking ass.
xoB

Happy Easter/Passover!

Hello,
Spring is insane here. So pretty. I am safe distancing from people and only going to the clinic. I just finished my second round of Vidaza and still on the trial drug. I'm doing ok. I have fatigue but it should be getting better. I saw my grandkids via facetime and by sitting outside a window. So sweet. Lyle and Katie told me they had a gift for me. Here is some backstory:
My friend Lisa and I bought adorable baby girl clothes MANY years ago. Neither of us had grandkids at this point. We spent a fantastic afternoon having lunch and looking at all the amazing dresses. Over the years I have given away my stash of adorable clothes to dear friends with baby girls. I kept one outfit as a secret treat for myself. Here is baby Rowan, rocking the cutest outfit for the most adorable, genius girl, ever. Great gift or what???
Note the Gold Lame shoes (also a gift from me). My mother (queen of tiger prints and gold lame) would be delighted beyond understanding. I am also attaching a picture of Thomas smelling his irises. He says they smell like vanilla cupcakes! We have fantastic sons and we are also blessed with fantastic daughter-in-laws and grandkids. We are eagerly awaiting the arrival of Ian and Bridget's baby. A trifecta!

I am in cville until June and then a quick trip to Houston for a biopsy- IF it's safe to go.
Stay safe!
Beryl

Home Sweet Home!!!

Hi,
OMG Spring is gorgeous here. At MD Anderson, the halls and clinics are filled with gorgeous photos and paintings of flowers and gorgeous, verdant landscapes. Everytime James and I walk through the halls we say "Virginia, Virginia etc". All of the photos look like Virginia in the spring and summer. Now I am steeping in it!
Thanks to my dear friends and family who sent me pics of my yard and neighborhood. Gorgeous! I am SO happy to be home!!!!
I spoke with my Texas Doc today and he said the results of the biopsy were mixed and he was optimistic. He said it's a slow medicine and they expect the biopsy after the third treatment will tell the story. I don't have to go back for a month and if the virus is still rampant, I can have the biopsy here or skip it altogether. They can mail me the drugs and I can get monitored by my team at UVA. I missed them- they are efficient and kind and so knowledgable.
We are unpacking and doing laundry. James is going to suit up (mask and gloves) and venture out to the stores.
Weirdly, in the airport, not many people were wearing masks. James and I were wearing two masks (not kidding) and he sanitized EVERYTHING. If I get the virus, it won't be due to a lack of extreme caution.
Lyle rode his bike over today and tested out the bike seat for Rowan. He was diligent about the social distancing. I'm glad he took the lead- it was hard for me. I'm fine in the world but the kids are a challenge.
So, I am optimistic and feeling good. Slow and steady.

Take care,
Beryl

Counting down

Hey,
Happy St. Patricks Day!
James made us Avocado Toast with poached eggs for dinner. He has become quite the chef. I am not kidding.
I asked my doc if I could leave after the biopsy (a week from tomorrow) instead of hanging out a week to go over the results. He said yes! So we are flying back next thurs March 26th! We checked all the ways to get home and flying is the safest. We already know how to be safe on a plane- this is a skill set we have mastered. I've been talking with the grandkids alot on facetime and I find it a tremendous comfort.
Regarding my texas bling- I received my belt today. I'll try it on tomorrow- I may need a bigger size- we'll see. Either way- it's fab.
Several of my friends and fam have been sending me pics of my garden. OMG!
Take care,
Beryl

Dress for Rowan

How could I resist this?? Not possible!

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