Hey,
Apparently my donor (39 yr. old male who I believe to be Johnny Depp) is avoiding the transplant centers calls! No one has heard from him- off making a new movie I guess. The second donor is standing by. I haven't heard if they'll start testing him/her. So... I'm gardening.
Monday, August 30, 2010
Saturday, August 21, 2010
Info from my brother, Joe!
AND JUST SO YOUR BUDS KNOW: - CONTACT ME (JOE SOLLA) AT JSOLLA@COMCAST.NET OR WWW.JSOLLA.COM OR 305-888-6160 OR 407-317-7149 TO COORDINATE DATES FOR POST-HOSPITAL BABYSITTING DUTY. (WHEN WE HAVE A GOOD DATE FOR ADMISSION AND AN ESTIMATE OF WHEN SHE'LL BE OUT).
Friday, August 20, 2010
Aug 20th update
Hi,
I just heard from my transplant coordinator. She thinks I'm heading to transplant soon. They have a good donor but still need a few more tests and then have to coordinate with the donor and the Bone Marrow Transplant Center. I think it's still 3-4 weeks away at the earliest. Nothing is set, though. So this is a note essentially saying (as my friend Rob might say with irony) I'm fixin to get ready.
Saturday, August 14, 2010
Background Info
I realize I haven't told a lot of people what will happen so here's some background. In June, 2009, I had my annual physical and the Doc found my blood levels were wonky. We pursued it and I was diagnosed with Myelodysplastic Syndrome with Excess Blasts level 2. This is a rare disease and uncommon in people my age. If left untreated it will likely become acute leukemia which is fatal. So the cure is a bone marrow transplant. In order to put me in remission and prepare me for the transplant, I had to have chemo. I've been taking Vidaza (my chemo) since August 2009. I've tolerated it really well and had help from my family, nutritionists, my Integrative Medicine Doc, my accupunturist (Jody Forman) diet, exercise, EMDR, meditation, visioning, energy healing and prayer.
The transplant:
When my donor is approved I'll go to the Massey Cancer/VCU Hospital in Richmond, VA and have a week of intense chemo. This will kill my bone marrow. I'll rest a day and then be transplanted with my donor's bone marrow. It will be transfused, like blood. Then I will stay in the hospital 3-4 weeks under close observation and under maniacally sterile conditions until the transplant starts to take hold. I will have no immune system, so infection is the big issue. When my blood counts start to go up and the docs agree, (3-4 weeks) I will be allowed to go "home". James and I will rent a 2 bedroom, 2 bath apt in Short Pump, VA. We need to be near the hospital (no more than 20 minutes away). I'll have to go to the hospital regularly to have tests, be checked on, etc. Without an immune system I will be very vulnerable to infection so they'll watch me very carefully. I'll wear a mask in public and when I'm around people. I won't be able to be in crowds or eat out. I also won't be able to be alone, to cook, clean or drive. I'll be on lots o' medication and touching any unprepared foods could threaten my health. My family and some of my good friends will come stay with me for various lengths of time. This part is still in the planning stages. My brother is going to organize that. James will work in C'ville and come to Short Pump after work. After 5-6 months I should be able to go back home to Ivy. I'll be able to do more, and hopefully I won't need so much help. I plan to continue working as soon as I can by teaching on-line. My bosses at school (both the Dean and President) have been wonderful. My colleagues have been amazing.
So...as weird and awful as this all is - I still feel great and I'm very optimistic. I've made a few great friends who have gone through this scary process and they are back in the world - doing fine.
I think this covers it. As my Nia teacher, Susan, says, dance through your troubles. My plans, exactly.
In Health,
Beryl
The transplant:
When my donor is approved I'll go to the Massey Cancer/VCU Hospital in Richmond, VA and have a week of intense chemo. This will kill my bone marrow. I'll rest a day and then be transplanted with my donor's bone marrow. It will be transfused, like blood. Then I will stay in the hospital 3-4 weeks under close observation and under maniacally sterile conditions until the transplant starts to take hold. I will have no immune system, so infection is the big issue. When my blood counts start to go up and the docs agree, (3-4 weeks) I will be allowed to go "home". James and I will rent a 2 bedroom, 2 bath apt in Short Pump, VA. We need to be near the hospital (no more than 20 minutes away). I'll have to go to the hospital regularly to have tests, be checked on, etc. Without an immune system I will be very vulnerable to infection so they'll watch me very carefully. I'll wear a mask in public and when I'm around people. I won't be able to be in crowds or eat out. I also won't be able to be alone, to cook, clean or drive. I'll be on lots o' medication and touching any unprepared foods could threaten my health. My family and some of my good friends will come stay with me for various lengths of time. This part is still in the planning stages. My brother is going to organize that. James will work in C'ville and come to Short Pump after work. After 5-6 months I should be able to go back home to Ivy. I'll be able to do more, and hopefully I won't need so much help. I plan to continue working as soon as I can by teaching on-line. My bosses at school (both the Dean and President) have been wonderful. My colleagues have been amazing.
So...as weird and awful as this all is - I still feel great and I'm very optimistic. I've made a few great friends who have gone through this scary process and they are back in the world - doing fine.
I think this covers it. As my Nia teacher, Susan, says, dance through your troubles. My plans, exactly.
In Health,
Beryl
Temporary Blog
Hello,
I'm starting this temporary blog so my dear buds and fam can get the latest info on my transplant. As of yesterday, Aug. 13th, two new donors were found for me. They are both perfect matches (10/10) Testing will begin soon on the first donor, a 39 yr. old man. If I get his marrow, I expect to become very hairy and and start liking football. (joke!)It's my understanding that 6-8 weeks is the soonest I can expect to get the transplant BUT that's all super iffy. I'll post when I know something. In the meantime, i've just finished a round of chemo and celebrated my 1 year chemically enhanced anniversary. I feel great, and plan to go back to school on monday. I'll work until I have to go to the hospital.
My brother, Joe, is making me a kick ass website complete with webcam and calendars. When that is up and running I'll send you the site address.
Thriving,
Beryl
I'm starting this temporary blog so my dear buds and fam can get the latest info on my transplant. As of yesterday, Aug. 13th, two new donors were found for me. They are both perfect matches (10/10) Testing will begin soon on the first donor, a 39 yr. old man. If I get his marrow, I expect to become very hairy and and start liking football. (joke!)It's my understanding that 6-8 weeks is the soonest I can expect to get the transplant BUT that's all super iffy. I'll post when I know something. In the meantime, i've just finished a round of chemo and celebrated my 1 year chemically enhanced anniversary. I feel great, and plan to go back to school on monday. I'll work until I have to go to the hospital.
My brother, Joe, is making me a kick ass website complete with webcam and calendars. When that is up and running I'll send you the site address.
Thriving,
Beryl
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