Friday, April 21, 2017

argh

I met with the doc today. I have 3 bad things happening in my blood that are possibly keeping the MDS active. There is a drug trial in Houston that is working on one of those bad things (cell clones??) that my doc wants me to try - if it works he'll give me a little more donor blood and see what happens. I may or may not be eligible for it- he's going to reach out to them.  If it doesn't work he wants me to do another transplant- a more gentle one with less chemo and a longer recovery time. James is going to do some research and see what Dr Raza in NY has to say. We'll send her all the test results. So it's all very iffy. The doc thinks the transplant may work with a different/new donor. There are still all the dangers and I'm 8 years older. He says I am in excellent health tho and recommends it. So I'm freaked out and feel scared. This is all I know at this time. I'll share info when I know something new.
B

Saturday, March 11, 2017

Still waiting

Hi,
So the results were inconclusive. I have all donor T cells (great!) and about 10% old white blood cells that have come back. The docs are doing a bone marrow biopsy and the big DNA test on March 27th to see what's going on and how to proceed. They have no idea what's up and are hoping the tests shed some light. In the meantime I feel great and have no scary symptoms. So...here's waiting.
Sigh,
Beryl

Friday, January 27, 2017

O freekin vey

Hi,
All has been great but maybe not so much anymore. My last blood work came back with a few of my old girl cells. Since my donor was male all of my cells should be male. At last look there were a few girls which is what happened summer before last. The doc is redoing the test just in case and I should have the new results Feb 10ish. Then they will decide how to proceed. This is all uncharted territory. Of course I can't freekin believe it. I feel great and am full of energy. On that note, I'm going to go load my kiln. More when I know something. Hold me in light and health.
Argh,
Beryl

Monday, June 20, 2016

DONE!!!!!

Done and done again. I am done, Bitches!!!! Back to the non-chemo world for me!
Mic drop!

Thursday, May 26, 2016

The latest and the greatest.

Hi,
So I have been on a light dose of chemo for 5 months to nail this recovery in hard. I have one more round to go. It starts on June 13th and end on June 17th. God willing that will be that. I had a bone marrow biopsy 2 weeks ago and all the results were perfect. I also had a CT scan and pulmonary function test. All is perfect!!!!!!!!!!
I feel great and am working in the garden A LOT but I am being careful, wearing a mask, big hat and gloves, completely covered because I can scare more children that way. Really it's being careful of Graft VS Host which can be stimulated/activated by the sun. The mask is to protect my lungs- lots of mold and fungus in mulch etc. I am not taking any chances. The plan is to stay healthy and get our house ready to sell in the spring. At that point we will move into our sweet Rose Cottage in town and live happily ever after. I am feeling very very very lucky and grateful.
One more round, bitches!!!! One more round!!!!! Here's a nice photo my friend Stacey Evans took of me.
xoBeryl

Tuesday, February 23, 2016

Starting the second round and all is well

Hi,
The first round went very well. No nausea, lots of energy, no change in appetite- it made a BIG difference being on a lower dose for fewer days. I saw my UVA doc yesterday and he was very pleased. He said my blood counts were great- only two areas where they were .5 below normal which was great. He said the rest of the chemo should go the same way the first month went so I'm very glad.  I can absolutely do this. I feel great and am very optimistic. I start day two of round two today. Needless to say, I'm hydrating like a mofo!
Take care,
Beryl

Sunday, January 17, 2016

Moving forward

Hey,
So all my big chemo is done. The VCU docs have come up with an even  newer protocol that adds 6 new rounds of chemo NOT 4 rounds and still- 5 days instead of 7 and less than half the dose. One week on, 3 weeks off. This is the latest latest latest protocol and seems to have the best outcome for someone like me. In the meantime I am all donor blood and 100% donor marrow so that's great. The chemo has really depleted my blood and when I went in this monday my UVA doc looked at my bloodwork and said let's wait a week before we start the baby rounds- get my levels up and then we'll do new bloodwork. So that happens tomorrow. He feels and the VCU docs agree, that since I am doing so well, there's no reason to pummel my system with more chemo immediately. I'll know in a day or 2 how they want to proceed. In the meantime I caught a cold and have been resting a lot and letting it run a normal course. I'm being super careful. School has started and it should be a not crazy semester. Here's hoping.
I'll update soon but know that things are good.
Take care,
Beryl