DAY 11 - 010607
Word for the day – Augusta. As in Augusta ME.
Our brilliant son booked himself a round trip flight to Augusta, Georgia. No, I’m not kidding. I left at 1:00 to run a few errands grab a bite and pick him up at 3:15 this afternoon. After Jay realized his was not heading for ME, he called David and they found a flight to Portland. The closest he could get to us was Portland which is an hour and 15 min away. Where as Augusta ME airport is 15 minutes away. And here I was so excited! So that brought his travels beginning at 4am from NM to Dallas TX to Charlotte, NC to Cleveland, OH and then to Portland ME, (yes I made sure he didn’t book it to Portland, Oregon) and I picked him up at 7pm. It’s all good. It’s all good. It’s all good… I got to stop off at Freeport and do a little shopping. See, it’s all good! He and David are already yelling at some game on TV.
Meanwhile, back at the ranch…David’s numbers are on the rise and it looks like we’re right on time for harvesting. We’ll have a 24 hour heads up which I will pass along to you all.
I’m a little pooped out from my head spinning so I sign off tonight with a smile on my face and a wish for you to enjoy the rest of this delicious warmth.
~ Robbi
[Patient Update: Nothing keeps me felling young and vital like rescuing my son from himself. Genius has it's quirks... and Jayme is a true genius.
Today, I want to answer some questions that are being asked by blog and email...
1) I want to welcome Maryanne, who is the coordinator of the Worcester (UMASS) Scleroderma Support Group, to this blog. I look forward to share with the group - now and when I return to MA.
2) Nutritional Stuff - My appetite is greatly reduced. Probably from the chemo. I've been eating a lot less for 2 years now. My weight peeked at about 200lb before Scleroderma. My "playing weight is ideally 185... now I'm about 170, and holding steady. Suppliment drinks keep the caloric counts steady, and I still have a liking for the high fat foods with protein - eggs & cheese, burgers & cheese, ice cream & cheese (bad joke, but you get the idea). Nausea has not entered the picture yet. It's expected, but not till later when I get the high doses of chemo.
3) A special welcome and a thank to Jane Erickson. Jane has been my mentor and guide through this process. Jane received a stem cell transplant w/ Dr. Traynor, in August 2005. Last nite and tonite she is directing "Menotti's Amahl and the Night Visitors". It's an opera, designed to hook kids into liking opera.
Prior to Jane's treatment, many of her symptoms were more severe than mine. Now she's gradually returning to her passions - music and giving of herself to to her community. She is a leader in the advocacy of stem cell treatment (especially without radiation).
I am grateful for Jane.
4) Now to clarify "the woman from Colorado" mystery - MaineGeneral needed new equipment to perform this procedure for me. The machine that harvests my stem cells is called an APHERESIS unit. This machine draws my blood out of my body... to separate the proper cells ... and returns the remaining blood back into me. I am to be connected to it for about 5 hours. There is no pain or discomfort as they use the lines that were inserted into my chest on Day 1.
The machine requires special knowledge to run it. The staff here has been trained but since they have never had a real patient - the company is sending their trainer back to Maine to lead the team. She is "the woman". This speaks highly of the machine company, MaineGeneral, and all the professionals on our team!
And now for a sneak preview of Day 11...
Yesterdays ANC was 9000+ and at that pace we are looking for Monday for Harvest. Slept fair last nite. I am experiencing the bone aches that signify the rapid growth of stem cells in the bone marrow. Such rapid growth creates literal pressure inside the bones... who knew???
Pats game starts in 15 minutes. Jayme and Robbi are here with me and Emy is very near by. Emy is also taking on the admin. of this blog - THANK YOU!!!
Jayme bought me a Patriots balloon and it's clipped to my keyboard!!!
Call from the hospital - ANC = 19314... don't know yet if we are a go for tomorrow.
David]
Our brilliant son booked himself a round trip flight to Augusta, Georgia. No, I’m not kidding. I left at 1:00 to run a few errands grab a bite and pick him up at 3:15 this afternoon. After Jay realized his was not heading for ME, he called David and they found a flight to Portland. The closest he could get to us was Portland which is an hour and 15 min away. Where as Augusta ME airport is 15 minutes away. And here I was so excited! So that brought his travels beginning at 4am from NM to Dallas TX to Charlotte, NC to Cleveland, OH and then to Portland ME, (yes I made sure he didn’t book it to Portland, Oregon) and I picked him up at 7pm. It’s all good. It’s all good. It’s all good… I got to stop off at Freeport and do a little shopping. See, it’s all good! He and David are already yelling at some game on TV.
Meanwhile, back at the ranch…David’s numbers are on the rise and it looks like we’re right on time for harvesting. We’ll have a 24 hour heads up which I will pass along to you all.
I’m a little pooped out from my head spinning so I sign off tonight with a smile on my face and a wish for you to enjoy the rest of this delicious warmth.
~ Robbi
[Patient Update: Nothing keeps me felling young and vital like rescuing my son from himself. Genius has it's quirks... and Jayme is a true genius.
Today, I want to answer some questions that are being asked by blog and email...
1) I want to welcome Maryanne, who is the coordinator of the Worcester (UMASS) Scleroderma Support Group, to this blog. I look forward to share with the group - now and when I return to MA.
2) Nutritional Stuff - My appetite is greatly reduced. Probably from the chemo. I've been eating a lot less for 2 years now. My weight peeked at about 200lb before Scleroderma. My "playing weight is ideally 185... now I'm about 170, and holding steady. Suppliment drinks keep the caloric counts steady, and I still have a liking for the high fat foods with protein - eggs & cheese, burgers & cheese, ice cream & cheese (bad joke, but you get the idea). Nausea has not entered the picture yet. It's expected, but not till later when I get the high doses of chemo.
3) A special welcome and a thank to Jane Erickson. Jane has been my mentor and guide through this process. Jane received a stem cell transplant w/ Dr. Traynor, in August 2005. Last nite and tonite she is directing "Menotti's Amahl and the Night Visitors". It's an opera, designed to hook kids into liking opera.
Prior to Jane's treatment, many of her symptoms were more severe than mine. Now she's gradually returning to her passions - music and giving of herself to to her community. She is a leader in the advocacy of stem cell treatment (especially without radiation).
I am grateful for Jane.
4) Now to clarify "the woman from Colorado" mystery - MaineGeneral needed new equipment to perform this procedure for me. The machine that harvests my stem cells is called an APHERESIS unit. This machine draws my blood out of my body... to separate the proper cells ... and returns the remaining blood back into me. I am to be connected to it for about 5 hours. There is no pain or discomfort as they use the lines that were inserted into my chest on Day 1.
The machine requires special knowledge to run it. The staff here has been trained but since they have never had a real patient - the company is sending their trainer back to Maine to lead the team. She is "the woman". This speaks highly of the machine company, MaineGeneral, and all the professionals on our team!
And now for a sneak preview of Day 11...
Yesterdays ANC was 9000+ and at that pace we are looking for Monday for Harvest. Slept fair last nite. I am experiencing the bone aches that signify the rapid growth of stem cells in the bone marrow. Such rapid growth creates literal pressure inside the bones... who knew???
Pats game starts in 15 minutes. Jayme and Robbi are here with me and Emy is very near by. Emy is also taking on the admin. of this blog - THANK YOU!!!
Jayme bought me a Patriots balloon and it's clipped to my keyboard!!!
Call from the hospital - ANC = 19314... don't know yet if we are a go for tomorrow.
David]
posted by DesktopDavid at 9:24 AM
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