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


Friday, November 10, 2017

argh

Hi,
Things are going in the wrong direction. I'll be starting a new med asap and the new goal is to get me into remission for another transplant. Not what I had hoped for.
B

Tuesday, October 31, 2017

Biopsy Done

Hi,
I had the biopsy and a unit of blood. My doc (Dr. Douvas) did a great biopsy. This is not a walk in the park but he made it tolerable. Best. Biopsy. EVAH!
Can you tell I've had blood?
I get another unit tomorrow and then I wait for the biopsy results. No one has a clear idea of how to proceed until we get this info- so we wait. Hopefully not more than 2 weeks.
Sigh.
Happy Halloween. Thomas was Hei Hei, the chicken from Moana. Pretty freekin cute.
Take care,
Beryl

Friday, October 27, 2017

Boy vs girl

Hi,
I just finished my last chemo of this cycle. Good. I got my results back from the doc and my girl cells are up from 50% to 75% and my boy cells (donor) are down to 25%. My Doc (Dr. Douvas) has scheduled me for a bone marrow biopsy this coming Monday so we have a clearer idea of what's going on. The Chemo should be bringing the boys back but the reverse is happening.
argh,
B

Saturday, October 7, 2017

bloody mcblood blood

hi,
things went fine with chemo last week- my hemoglobin tanked the following week. I'm 2 bags low this time. I'm at uva now getting transfused. My doc thinks its chemo side affects and that I should be patient. So I am.
on the drip,
b