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

Monday, September 25, 2017

New Round started today

Hi,
I started my third round of chemo today- proceeded by another pint of delicious blood. The doc says I am producing new young red blood cells so I'm moving in the right direction. My platelets are good and I just need to remain calm and proceed. So that's the plan.
Oy
Our renovation is almost 100% done- we are sleeping upstairs and using one of the new bathrooms. It is beautiful. No lie.
The doc took extra blood to test my boy vs girl white blood cells.  It takes a week to get the results. 3 months ago it was almost 50/50. The goal is to get me back to all boy (donor), thus my regret over that awesome skirt. Once I'm all boy again, Ima need more girly clothes!
B

Thursday, September 14, 2017

Needed more blood ...... so I got it

Hi,
I was feeling out of breathe last weekend so I went to the docs and established I was about a pint low. I spent the day getting refueled. I'm at about 75%. This relapse has def slowed me down.
Not loving this but I am carrying on. I just grouted the last tile work I did on the bathroom renovation and it is pretty sweet. I'm still bummed about not buying that skirt.
Taking care,
B