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

Monday, August 28, 2017

Moving along nicely

Hi,
I had a blood transfusion last week and man was that great! I felt like an angry young man, but not angry or a man. Maybe just young. I started my next round today and the doc says my hemoglobin is still "goodish", my platelets have increased to normalish and my marrow is producing lots of new young red blood cells which indicated the chemo is doing it's job. He doesn't expect I'll need anymore transfusions which is great news. I feel good. I'm going to work in the garden. So there!
Take care,
Beryl

PS. I'm adding a photo from several years ago when I went thrift store shopping with my girls, Silvia and Angi. Believe it or not, I did NOT buy this tutu. WTF was I thinking??? I'd wear it to Chemo if I had it!

Tuesday, August 22, 2017

Hi- sorry for the lapse

Hi,
I'm sorry for the lapse. Life...am I right?
So the first cycle went well. So far no side affects. I am doing 5 days instead of 7, which is much easier. My hemoglobin was low and I had to have a transfusion. I haven't had one since my transplant. The low hemoglobin makes going up stairs and hills a challenge. Other than that I'm living my regular life. I'm at UVA right now waiting to see if I need more blood. My doc is being very attentive to this which I appreciate.
I'm trying to stop caffeine after 2:00 so I can tell when I am tired and actually rest. There's an innovative idea, right? In the meantime our home renovation is in full swing and we have been living with all of that excitement. There does seem to be an end in sight. (please baby Jesus!).
Thank you for your positive thoughts and energy. Sometimes I feel daunted but I've been able to do EMDR and come back.
School has started and I'm back in the saddle. I'm VERY lucky to be where I am.
Take care,
Beryl
PS My Grandson just turned 3!!!!

Thursday, July 20, 2017

okay- here we go....

Hi,
I spoke with the doc at about 6:30- he says all of my blood counts are down (they have been declining all along) and that my platelets are now below normal for the first time. He wants me to start Vidaza (chemo) sooner than later. He says it takes a while for it to kick in and he doesn't want me need a transfusion or be more prone to infection etc. So I start on Monday July 31st. Five days on and three weeks off. I'm not thrilled but I don't want to go into serious decline. I know this drug and it's a good one so I'm proceeding. Please think of me as the kick ass healthy monkey that I am.
In health,
Beryl

Wednesday, July 12, 2017

PS

Hi,
I'll see my UVA Doc next Thursday and we'll discuss the start date and other stuff. So in the meantime...
B

And now for something completely different!

Hi,
I just spoke with Dr Daver  (MD ANDERSON) and he said my blasts were normalish (still signs of my original disease but it's moving slowly). He said I wasn't eligible for any of the trials because the blasts weren't advanced enough (under 5% is normal) and I wasn't getting transfusions, or other drugs to build hemoglobin. They just changed the trial I was eligible for to exclude patients who had had a transplant. They changed that 2 weeks ago. They found toxicity issues with 3 of the patients. So it's kind of good news I think. He suggests I go back on  vidaza   on a 5 day a month schedule.  He suggested I get another biopsy in 3 months and we see what we see. He thinks it's possible for the vidaza to normalize the cells and put me back in remission. So I'm meeting with my UVA doc next week and I'll probably start on a 5 day chemo cycle soon. This is maybe good news- that's how I'm taking it, anyway. I'm going to keep doing all the good healthy stuff I've been doing and try to slow this train down. I'm glad I don't have to go to Houston. My house is becoming so livable! I'll include some photos.
Oy,
Beryl


Monday, July 10, 2017

Argh and Argh! a Delay!

Hi,
The doc's scheduler just called. He has an emergency today and will call me on weds. Late afternoon.
Oy freekin vey,
B