DAY 18 - 011307
Robbi's Update:
Hi All! I’m a little better from this annoying cold. Jayme is sniffling now too. L We snuck into Westborough today like thieves in the night to get a few things including some homemade chicken soup from Mom and from Karen R. and a few much needed hugs. We’re heading back up to ME first thing in the AM tomorrow.
The procedure has moved into high gear. Instead of beginning on Tuesday we got word that David will be admitted on Sunday 1/14. I’m a little facklemped…
I’ll be in touch as soon as things are rolling.
~ Robbi
[Patient Update:
SO! We sneak into Westborough so that we can be with Emily and it is BEAUTIFUL! Robbi's mom & brother Steve, Ben, Max (my nephew), and Bill are with us and it a short but very sweet moment.
I have to admit that I was very anxious to have all these people come into the house. I know it's bordering on compulsiveness to worry... but I know that I'm just a few days away from "The Show" and I just don't want to carry something in my system that will run rampant once my immune system is wiped out. Wrapped within my own anxiety, I nearly missed the beauty that was surrounding me.
Debbie (The Boss) called while we were sitting around - I am to report to the hospital for admitting at 8am SUNDAY! The original date was Tuesday. So this when the business side of medicine gets to affect the whole process. The initial plan would have required that my frozen stem cells be transported, from Philly to Waterville, next weekend. Well the Philly Red Cross had an issue with that. I don't know the details, but it is safe to assume that weekend transportation is more costly than the same amount of driving hours on a weekday. Now, with my cells being delivered for Friday the 19th, I'm beginning the Conditioning Phase tomorrow.
Here is how it happens:
TRANSPLANT DAY -MINUS 5 ---
(It's like a count down to a rocket launch.) The intravenous lines, in my chest are going to get a heavy usage now. 1st I get a bag of Mesna (do you remember that this stuff is to protect my bladder?). Then the chemo (cyclophosphamide, a.k.a Cytoxan). Then more Mesna - cause you can never be too careful about my bladder. and then about 210 hours of saline solution to flush me out. Of course they want me to get up out of bed as often as possible to urinate (can I just say "Pee" without offending my reading audience - thank you).
TRANSPLANT DAY -MINUS 4 --- thru Minus 2 (Thursday)
The same regimen as -5. The difference is that today, and each of the next 3 days, my body is getting the immune system kicked out of it. Chemo leaves you feeling tired for a few days after one dose. I'll be getting 4 consecutive days without rebound time. This is when I am likely to get the side-affects: nausea, hair loss, x-ray vision and the ability to leap tall nurses in a single bound. I can't wait to see thru stuff...
TRANSPLANT DAY -MINUS 1
This day I get a special chemical called CAMPATH. This is like a sweep up treatment. CAMPATH goes thru my blood and attaches itself to any remaining cells that remain from my immune system. Once they are attached they get taken out in my pee (ahhh, it's nice not to have to be so clinical).
TRANSPLANT DAY -ZERO!
I will have to get more of the details to write this one... Stay Tuned - Film @ 11.]
I want the last words for today to be from Robbi's Update for tonite:
I remember the day I heard David was diagnosed with this disease called Scleroderma. It became a wake up call and I didn’t think I was asleep. I thought that we could just educate ourselves about it, read everything there was to read, make the changes in our lives we needed to make, and just go with the flow from there. Never in my wildest dreams did I think we would be where we are now. I never imagined that I would be so humbled by such care of love. Never did I think I’d be sitting next to my husband while they drain the life out of him to turn around and give him a new life that could give him many more years with us.
I have no idea what is going to happen over the next 2 – 4 weeks, (thus the migraines) but what I do know is that the love and support I have felt from you all is the foundation I’m able to keep myself upright on. I’ve learned how imperative it is to be by your family/friends when they are paralyzed in fear. Where as before I may have thought it was best to mind my own business. I’ve learned to be unselfish and thoughtful, where as before my pride might speak before my heart. I’ve learned that it’s beautiful to be vulnerable; it’s when we are open to learn so much. Before I might even be ashamed of needing anything from anyone.
We all have our “stuff”. Our “stuff” can scare us into acting helpless or it can allow us to open ourselves to be helpful. Nothing is more important than to live in the moment we’re in and make the very best of that time.
On this night before we begin this intense procedure, I thank you again from the bottom of my heart. I feel your love and prayers and we take them with us tomorrow morning.
Love,
Robbi
Hi All! I’m a little better from this annoying cold. Jayme is sniffling now too. L We snuck into Westborough today like thieves in the night to get a few things including some homemade chicken soup from Mom and from Karen R. and a few much needed hugs. We’re heading back up to ME first thing in the AM tomorrow.
The procedure has moved into high gear. Instead of beginning on Tuesday we got word that David will be admitted on Sunday 1/14. I’m a little facklemped…
I’ll be in touch as soon as things are rolling.
~ Robbi
[Patient Update:
SO! We sneak into Westborough so that we can be with Emily and it is BEAUTIFUL! Robbi's mom & brother Steve, Ben, Max (my nephew), and Bill are with us and it a short but very sweet moment.
I have to admit that I was very anxious to have all these people come into the house. I know it's bordering on compulsiveness to worry... but I know that I'm just a few days away from "The Show" and I just don't want to carry something in my system that will run rampant once my immune system is wiped out. Wrapped within my own anxiety, I nearly missed the beauty that was surrounding me.
Debbie (The Boss) called while we were sitting around - I am to report to the hospital for admitting at 8am SUNDAY! The original date was Tuesday. So this when the business side of medicine gets to affect the whole process. The initial plan would have required that my frozen stem cells be transported, from Philly to Waterville, next weekend. Well the Philly Red Cross had an issue with that. I don't know the details, but it is safe to assume that weekend transportation is more costly than the same amount of driving hours on a weekday. Now, with my cells being delivered for Friday the 19th, I'm beginning the Conditioning Phase tomorrow.
Here is how it happens:
TRANSPLANT DAY -MINUS 5 ---
(It's like a count down to a rocket launch.) The intravenous lines, in my chest are going to get a heavy usage now. 1st I get a bag of Mesna (do you remember that this stuff is to protect my bladder?). Then the chemo (cyclophosphamide, a.k.a Cytoxan). Then more Mesna - cause you can never be too careful about my bladder. and then about 210 hours of saline solution to flush me out. Of course they want me to get up out of bed as often as possible to urinate (can I just say "Pee" without offending my reading audience - thank you).
TRANSPLANT DAY -MINUS 4 --- thru Minus 2 (Thursday)
The same regimen as -5. The difference is that today, and each of the next 3 days, my body is getting the immune system kicked out of it. Chemo leaves you feeling tired for a few days after one dose. I'll be getting 4 consecutive days without rebound time. This is when I am likely to get the side-affects: nausea, hair loss, x-ray vision and the ability to leap tall nurses in a single bound. I can't wait to see thru stuff...
TRANSPLANT DAY -MINUS 1
This day I get a special chemical called CAMPATH. This is like a sweep up treatment. CAMPATH goes thru my blood and attaches itself to any remaining cells that remain from my immune system. Once they are attached they get taken out in my pee (ahhh, it's nice not to have to be so clinical).
TRANSPLANT DAY -ZERO!
I will have to get more of the details to write this one... Stay Tuned - Film @ 11.]
I want the last words for today to be from Robbi's Update for tonite:
I remember the day I heard David was diagnosed with this disease called Scleroderma. It became a wake up call and I didn’t think I was asleep. I thought that we could just educate ourselves about it, read everything there was to read, make the changes in our lives we needed to make, and just go with the flow from there. Never in my wildest dreams did I think we would be where we are now. I never imagined that I would be so humbled by such care of love. Never did I think I’d be sitting next to my husband while they drain the life out of him to turn around and give him a new life that could give him many more years with us.
I have no idea what is going to happen over the next 2 – 4 weeks, (thus the migraines) but what I do know is that the love and support I have felt from you all is the foundation I’m able to keep myself upright on. I’ve learned how imperative it is to be by your family/friends when they are paralyzed in fear. Where as before I may have thought it was best to mind my own business. I’ve learned to be unselfish and thoughtful, where as before my pride might speak before my heart. I’ve learned that it’s beautiful to be vulnerable; it’s when we are open to learn so much. Before I might even be ashamed of needing anything from anyone.
We all have our “stuff”. Our “stuff” can scare us into acting helpless or it can allow us to open ourselves to be helpful. Nothing is more important than to live in the moment we’re in and make the very best of that time.
On this night before we begin this intense procedure, I thank you again from the bottom of my heart. I feel your love and prayers and we take them with us tomorrow morning.
Love,
Robbi
posted by DesktopDavid at 5:03 PM
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