Tuesday, July 28, 2015
Sunday, July 26, 2015
In the middle of the 3rd Round
Hi,
Sorry it's been so long. My weeks between the chemo are good. Every day better than the last. I've been teaching on line and making stuff- tiles for Bridget and Ian and my brother, Joey and the new house- and pillows for Bridget. Baby Thomas has a cold so I have to keep my distance. I also got a tick bite so I'm on antibiotics as a prevention. I'm about to head into day 4 of 7 this morning. I don't love this but it could be worse. I'm tired but I'm able to do what I need to. I exercised all last week and will walk this Monday. Maybe not for long but I'll do something. I think the exercise increases my energy. My biopsy is in a few weeks. Then we'll see what's up. I'm doing my best to get this MDS out of my body, along with negative energy and feelings. The doc says even if my biopsy shows that I'm 100% engrafted I'll need to do 2 more rounds of chemo- just to make sure. The VCU doc said to plan on a year. That's the average. I'll do what I need to to survive and thrive.
Take care,
B
Sorry it's been so long. My weeks between the chemo are good. Every day better than the last. I've been teaching on line and making stuff- tiles for Bridget and Ian and my brother, Joey and the new house- and pillows for Bridget. Baby Thomas has a cold so I have to keep my distance. I also got a tick bite so I'm on antibiotics as a prevention. I'm about to head into day 4 of 7 this morning. I don't love this but it could be worse. I'm tired but I'm able to do what I need to. I exercised all last week and will walk this Monday. Maybe not for long but I'll do something. I think the exercise increases my energy. My biopsy is in a few weeks. Then we'll see what's up. I'm doing my best to get this MDS out of my body, along with negative energy and feelings. The doc says even if my biopsy shows that I'm 100% engrafted I'll need to do 2 more rounds of chemo- just to make sure. The VCU doc said to plan on a year. That's the average. I'll do what I need to to survive and thrive.
Take care,
B
Tuesday, July 7, 2015
All went well
Hi,
So it took all day- a lot of waiting but it was okay. They are starting me with a "primer" dose just about an ounce of donor cells, to make sure nothing crazy happens and prepare my body for the next infusion. The protocol is 2 rounds of chemo, a dose of donor cells and then a bone marrow biopsy to see how it's all going. The doc said the average time is one year if all goes well. I have my biopsy on Aug 10th and the results come in 2-3 weeks later. I need to be on guard for graft vs host as the new blood cells are introduced. The doc said people typically get some kind of G v H but not all and there is a range from mild to severe. I didn't have any the last time and of course that's my goal here.
I was getting very anxious while waiting for the blood and James did some EMDR with me. He's amazing.
I feel good today- I plan to do a little house work and then work out at the gym. It feels like a normal day.
I start my next round of chemo on July 22 and it goes through the 28th.
Please keep me in your prayers and thoughts (in a good way!)
Take care,
Beryl
PS the doc told me 5 years ago they made the patients go through a complete transplant again. They had a 5% survival rate. So scary. They changed the protocol and that's what I'm doing now.
So it took all day- a lot of waiting but it was okay. They are starting me with a "primer" dose just about an ounce of donor cells, to make sure nothing crazy happens and prepare my body for the next infusion. The protocol is 2 rounds of chemo, a dose of donor cells and then a bone marrow biopsy to see how it's all going. The doc said the average time is one year if all goes well. I have my biopsy on Aug 10th and the results come in 2-3 weeks later. I need to be on guard for graft vs host as the new blood cells are introduced. The doc said people typically get some kind of G v H but not all and there is a range from mild to severe. I didn't have any the last time and of course that's my goal here.
I was getting very anxious while waiting for the blood and James did some EMDR with me. He's amazing.
I feel good today- I plan to do a little house work and then work out at the gym. It feels like a normal day.
I start my next round of chemo on July 22 and it goes through the 28th.
Please keep me in your prayers and thoughts (in a good way!)
Take care,
Beryl
PS the doc told me 5 years ago they made the patients go through a complete transplant again. They had a 5% survival rate. So scary. They changed the protocol and that's what I'm doing now.
Sunday, July 5, 2015
Tomorrow....NEW CELLS!
Hi,
So tomorrow we (James and I) go to VCU at 11:00 for my new cells. Remember in the last Hobbit film where the reinforcements came in at the end to save the day???? Same kinda thing. These new cells will reinforce my B Positive blood and beat down those ugly monstery guys. Send me your love and strength. Let's nuke this thing! I picked this bouquet for us! It smells like heaven.
Love,
Beryl
So tomorrow we (James and I) go to VCU at 11:00 for my new cells. Remember in the last Hobbit film where the reinforcements came in at the end to save the day???? Same kinda thing. These new cells will reinforce my B Positive blood and beat down those ugly monstery guys. Send me your love and strength. Let's nuke this thing! I picked this bouquet for us! It smells like heaven.
Love,
Beryl
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