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

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

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

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

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

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

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!

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!!!!

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

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

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

The Big Trip to Houston

Hi,
We got home last night and here are the highlights:
 I like the doc. He's young and very brainy. He ordered a biopsy to see whats up with the blasts and also their chromosomal make up. If my blasts are normal (blasts are abnormal cells that should self-destruct but don't- that causes Leukemia) we just chill and keep a regular watch. If they are increasing or have the MDS clone,  he wants me in a promising immunotherapy trial. It's a mix of 2 drugs that are meant for situations similar to mine . No chemo. The plan is 1 month in Houston to make sure I respond well and am close to the hospital in case I have a bad reaction, and then 1 day every two weeks for the treatment. Then once a month. Not sure for how long it will last. I think I can do that. One month in Houston beats another transplant. He thinks the treatment will at least hold things at bay and at most provide a cure. He's optimistic. I'll continue to work and figure out a way to be away from school for a month.  So we'll know on July 10th what's up. He'll call with the result of the test. In the meantime I'm glazing tiles for my new bathroom and plan to play with Thomas soon. I was very freaked out lSunday night and couldn't sleep.  James did a lot of EMDR with me and I was able to settle down. After the biopsy we ate a great Thai meal and had a huge freekin piece of chocolate cake with decaf lattes. We couldn't finish the cake (4 layers) but we really really tried. I worked out today and feel very optimistic. I'll post after I hear the results of my biopsy. In the meantime- a picture of cake!!! It doesn't really give you a sense of the scale. That's a dinner size plate!!!!
B

More stuff

Hi,
The NY doc suggested a clinical trial at Columbia but I haven't been able to get much info on it other than it's very new, only 3-4 people in it, no real results, certainly no promises, and I would have to spend 1 day a week (really 2 with travel) in NYC indefinitely. I'm not seeing how this could happen, especially with it being indefinitely on-going with no clear benefit. In the meantime, one month ago I had 90% donor white cells and 10% old crappy returned cells. My most recent blood tests show it's almost 50/50 which is def going in the wrong direction. The hope was that this would be slow moving. We go to Houston this Sunday to meet with docs about clinical trials there. I'm not sure anything will be realistic for me but we are going to find out. I'll have a bone marrow biopsy there on Monday and results in a few weeks, That's the test that really matters. If I have normal blasts- things are less critical. My last biopsy was normal. If I have an increase in blasts, that's a different story. I'll know more in a few weeks. We met with Dr. Ballan at UVA's Bone Marrow Transplant center and we both liked her. Both she and my hematologist think I have a good chance of surviving another transplant 60-70% range.
On another planet, we are continuing with our upstairs renovation and had a lovely evening out with our beautiful grandson.
More soon,
B

Here's what I know

Hi,
Okay....
I went to NY and met with my old doc, Azra Raza. She's a big deal MDS doc and VERY opposed to transplants. The NY consult was good. She says I don't have abnormal blasts (which leads to Leukemia and was why I had the first transplant) just my old blood, that DOES have the potential for trouble- bad DNA. It's not ideal but she suggests I get blood work every month, a biopsy every 3 months and if something changes, look at clinical trials. She is VERY opposed to a 2nd transplant. The UVA docs say the same thing except I should def consider a transplant if things deteriorate and the clinical trials aren't useful.  James and I like the head of transplants and my UVA hematologist. We go to Texas, MD Anderson, to talk to them on June 25th and check out their clinical trials. Also Dr. Raza reached out to me a few days ago with a clinical trial at Columbia in NYC that might be helpful. So I'm kind of hopeful this will take some time to become critical or, as the NY Doc says, it could stay the way it is. No one has seen anything like this so they are not quick with an instant solution. 
In the meantime I am exercising, juicing, doing lots of EMDR and spending time with my family and friends. We just moved into our new house so there's lots of renovating and unpacking going on, as well.
I'm still processing everything and my head is all over the place. I'm trying to stay in the moment and not freak out with worse case scenerios. Most of the docs feel I have an excellent chance to recover from a second transplant but fortunately that is not a decision I need to make now. If I can wait this out 20 more years I'll be golden!
Meanwhile Thomas is turning THREE in a few months and continues to keep me focused on fun and love. He is really really really beautiful and smart and adorable and perfect. A lot like my sons. James  as always, is by my side, keeping me focused, talking with Doctors and making me juice. My friends and family are a constant source of power and love. Here's a picture of Thomas waiting for pancakes!

Thanks for holding me in light and health.
Beryl

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

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

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