Hi,
We have tried everything with no luck and the doc has suggested I return home so that's the plan. There is a traditional treatment I will try and if it's effective and not horrific, I'll stay on it. It may work until it doesn't. There is no big fix. So James and I are returning to cville in the next week or so and will be relieved to be home. RELIEVED.
Stay well,
Beryl
Hi,
I had some results from the bone marrow biopsy I had on Monday. My blast counts are going down but not as fast as we hoped. The blasts in my blood are low but the blasts in my bone marrow are going down, but much slower. I have had improvement but I am clearly not in the 70% who responds quickly. I'm a turtle! So we'll continue another month and see what we see. It may be that I continue, it may be that I pivot. I'm disappointed but there's still a path forward. As James says, I'm feeling my feelings.
Take care,
Beryl
Hi,
I am day 21 in my trial and things look greatish. I am still needing transfusions but this is expected. In the next few weeks, as my marrow begins to work, I'll need fewer and fewer transfusions. I have a bone marrow biopsy next monday and we'll know what's up by weds. Some of what's up, anyway. They test the blasts (that are a symptom of AML- they are abnormal cells that should be disposed of but in my case, aren't) by blood and by biopsy of the marrow. The marrow is the definitive test. In the meantime, the blood is showing that my blast count is 1%, which is normal. It can go up to 3% and be considered normal. When I came to MD Anderson in Nov it was 88ish. The first trial brought it way down, and the second trial finished the job, I hope. So I'll post something when I know something.
We are settled into the apt. We are replacing the bad art with our oilcloth shapes, there are fake flowers, new pillow covers, new tablecloths and anything else we can think of. School is in it's 2nd week so I am busy with that. I had lost some weight but it has returned.
I am missing home and my sons and daughter-in-laws and grandkids so much. James and I watch fam videos and facetime with them. I will say, I am NOT missing the winter! Houston is very comfortable. The summer is a different and hellish story. I've been walking home from the clinic most days (MWF) and the walk is nice. Most of it is through a park that has a great path and is lined with giant old live oaks.
The big news,of course, is that Trump is gone!!!
I feel better already!!
stay safe,
Beryl
Hi,
Just a quick post. The new trial meds are going fine. I am in the hospital until Sunday (if all goes well) and then all out patient. They have taken me off of two old medications as the trial drugs start working. I am going for a walk and then I'll work on my class prep for Spring. Look at this old pic of Thomas.
Mainly I want to wish you a Happy New Year!
Progress!
Beryl
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
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
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
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!
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
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
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
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
