Monday, January 14, 2019

Tests and More Tests


Hi,
I spent the day at UVA getting tests in prep for the big event. I had a Pulmonary Function Test (good results) a bone marrow biopsy (we'll see in a few days but I'm guessing I have cancer), an echo cardiograph  (looks fine) and they took a ton of blood to test for a ton of things. The entry date for the hospital is Jan 27-30th somewhere in there, and the transplant will take place 7 days later. They estimate a month in the hospital and if all looks good, back home to rest and heal for 6 months or so. It all depends on my immune system growing, bone marrow growing, ability to make blood etc.
So I'm busy getting ready, getting things in order at home and at school.
The transplant doc says the chemo regime will be a little lighter because of my age but they expect it will do it's job. So far I am liking the transplant team. I feel strongly that this is my best option but it's still scary as hell.
My daughter-in-law, Katie Mason-Yates' mother, Jama Mason has offered to organize my after hospital care. The plan so far looks like February in the hospital, James will spend the first week out with me and he'll drop me off at the clinic when I need infusions/meds. I'll need someone to drive me home and stay with me until he gets home. I'll also need help on off clinic days. I'll post Jama's contact once we have a system in place in case anyone has the time or interest in helping me through this. I'm resisting hiring a stranger- that would be very tough.  Anyway.... I need some blood- I'm a pint short so I'll be getting a pint tomorrow morning.
Did I mention I bought 3 pairs of cute PJ's?
I'll keep you all up to date so that when we talk, we can focus on gardening, art, and of course my grandson, Thomas. I have another grandchild on the way too. We may share birthdays! It's first, my third!
Take care,
Beryl

Friday, December 28, 2018

Happy Holidays

Hi,
So things are moving forward. They have several donors and are doing the next step in testing to find the perfect match. The plan is to go into the hospital late January and possibly early February. It all depends on the donors and their schedule. James and I meet with the hospital next Fri to get "oriented". They say the process is a little easier these days. We'll know more soon. I'm feeling ok- really ready to be done with this disease and back into a healthy life. Modern medicine. Science. Progress. Family. Love. Friends. All working together. 
I'm enjoying the holidays- James and I are resting and enjoying time together and with the fam. Thomas is wonderful and Lyle and Katie's new baby is set to come into this world in February. Big month. I will be teaching on-line next semester. I found it helpful last time and hopefully it will be helpful this time. Tomorrow I'm gong to do a little tile piece in the bathroom in James' office. I've been wanting to do that for a while and this is the weekend. I'm getting ready to hibernate and heal. I'm painting my guest room a beautiful light magenta next week for my out of town friends and fam. It's the least I can do- right? I tiled a part of my basement stair well last month and plan to finish it next Fall. I'll post as dates become solidified and things move forward. (about the transplant- not the tiling!)
Keep me in your thoughts as a strong and healthy person.
Thanks,
Beryl


Monday, November 5, 2018

Update

Hi,
I just finished my latest chemo round and visited Dr. Ballan at UVA's Bone Marrow Transplant Unit. The plan is to look for donors in earnest with a goal of having a second transplant in Mid-January. I had hoped to somehow avoid this, but it's happening. No new science is going to pop in and save the day. So I'm moving forward- preparing and working with James and my family and friends to get ready. I'll have the transplant at UVA and God willing be back home after a month in the hospital. The recovery will take a while, I'm hoping for the best, of course. There's not much data on second transplants so it's uncharted territory. I'm counting on you all to help me and James get through this.
I'll update as I know more.
B

Friday, August 10, 2018

Hello

Hi,
Another long lapse- sorry. Things are ok. Still on chemo and not loving it but moving through it. I'm looking at another transplant in January if all goes well. James and I had a great visit to Fla this summer and saw the fam and friends- which was great. Everyone seems happy. We had a great time. School starts next week Lots of busyness. This is going to be short- I'll write again- and not wait so long! My yard is EPIC! I'm going to try to do some tile work on the basement stairwell before it gets cold. I'll send pics. Flowers- big crazy flowers!
xoB

Wednesday, April 25, 2018

Lonngggg lapse

Hi,
A lot has happened. I have had a variety of health struggles, some related to the MDS, some not. I had a gall bladder episode, a hospital stay, contracted cdif, and am currently struggling with it for the second time. I am 80% back to my original cells complete with the original MDS.  I don't want to spend too much time talking about this but it's been a challenge. I am fighting my way back to health and taking care as I do. James is by my side, fighting along with me. I am going to make a cup of tea, get dressed and go to work. We are winding down the semester and I am looking forward to a little rest.
More soon. In the meantime my front yard is lovely and my kids are great and my grandson is wonderful. We have names: I'm Mayhem, he's Chaos and James is Pandemonium. Bath time is Cray to the Z!!!


Sunday, January 28, 2018

Hellooooo

Hi,
I had a bone marrow biopsy last Monday and have received a few results. The blasts (irregular blood cells that screw everything up and can grow until you have Leukemia) are in the 1-5 range which is considered normal. Last time they were in the 5-10 range so this is good news. I'm still struggling with my old cells coming back (boy vs girl) but the boys are increasing a little. I'm still waiting on the chromosomal tests. I had 2 "bad actors" as of last biopsy so we'll see what we see. The new targeted therapy drug is suppose to kill them. I hope so cause this drug is a challenge. I am much more fatigued than I was when it was just the regular chemo (Vidaza). I have continued my Vegan ways and it's been VERY helpful.
I'm still waiting for the drug companies or scientists to come up with some great therapy that will edit my crappy chromosomes. I would love to avoid a second transplant. I start my next round of chemo tomorrow and in a week from that I'll go to VCU for an infusion of my old donors blood. The hope is the donor blood will remind my body to go back to my donor cells and the vidaza (chemo) will kill off my girl cells.  At that point I would be in remission and eligible for a transplant. It's a lot of "ifs" and "whens". In the meantime I am still teaching and have great students this semester. Of course I spend time with my fam and young Thomas. He's endlessly interesting and adorable.
My daughter in law, Katie gave me a buzz cut this week. The new drug does not support hair! I've lost a few pounds and replaced them with a few wigs. I'm having fun with some new looks. Thomas is always amazed when he sees me in the wigs. It's magic!!! James is always researching anything that can help and is taking good care of me. I'm enjoying it!
More when I get the rest of the results. They have to grow stuff so it takes a while.
Here's to an early spring!
B

Wednesday, January 3, 2018

Happy New Year

Hi,
 Here's an update:
I'm now 70% beryl blood and 30% donor. My old blood has the bad MDS chromosome. I've been on the new targeted therapy drug about 5 weeks. The side effects are manageable (so much less hair to wash!!). The chemo is working a little. My doc says I am making a ton of new red blood cells which is important, but overall, my counts remain low and I've needed infusions every few weeks or so. I've also needed platelets for the first time. The new meds were giving me lots of pain from inflammation but I read about a vegan diet being helpful and I started 
eating vegan and the pain was gone in 48 hrs and never returned. So I'm a vegan now.
I have a biopsy scheduled for 1/22 and 2 weeks after that we'll know more about the chromosomes etc. My doc is optimistic- he says there are several indicators that suggest a positive change. In the past the chemo worked well but they say the MDS mutates and can create problems. I may get a transfusion of more of my old donors cells if my numbers aren't showing improvement.
The goal is to get me into remission and get another transplant with a new donor. They have 10 potential donors. My personal hope (dream, really) is that I move into remission and the immunotherapies
they are studying come to market or they edit my DNA or something. Either way- this is a long slog. 

Here's to a healthy, recovery-filled new year! (Here's a pic of me and Thomas at Lewis Ginter Garden!)
Beryl