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!