DAY 21 - 011607
Robbi's Update:
I never know what to expect when I walk into David’s room at the hospital. I always expect him to be zoned out from all the drugs. But not David, he’s like the energizer bunny. I walked in today and he’s bright and chipper on the phone helping a client and has 2 more calls after this one. I think I’m actually in his way! I’m the one that’s zoned out! All I want to do is sleep and he’s conducting business while the nurses are taking his vitals. He’s just sitting around with all kinds of meds flowing in and out with a bald head, talking on the phone, eating whatever the nurses bring in to him. Not only conducting business but also advising another person who has systemic scleroderma on where to get help. Yep, that’s David. I’m very grateful that he’s so distracted.
Jayme FINALLY got home. 22 hours later. Jay likes to do things with flair. Left us at 10am 1/15 to head for Portland ME airport. Delayed in ME due to bad weather until around 2:30pm. Caught a flight AZ then on to Vegas (now 12am 1/16) and met up with a few friends for dinner, then to El Paso only to get to his car and try his spare key, (why???? because he left his lap top and set of keys in Westborough, and $140. later had it overnited to NM, thank you Bill!) and the spare key set off the alarm and shut down his car. Soooo, he called someone at his station, (now 3am and 5am EST) to pick him up at the airport, drove to the station and took a nap, then took one of the news trucks 45 min to NM (now 7am) to wait for Fed Ex to deliver his lap top and keys 3 hours later. It’s all good though because he has his book, The Power of Intention by Wayne Dyer to read while he’s waiting for Fed Ex. Fed Ex shows up at 9:30ish and he gets his keys and runs out to food shop, (because of course after being away 10 days you have green and blue stuff growing in the fridge) drove back 45 min to El Paso (now somewhere around 1pm) to the station to drop back the news truck to go back to the airport to pick up his car then back to NM to call me and let me know he was safely at home and going to bed, (now around 3:00ish). And the whole time we’re talking Wayne Dyer stuff saying to each other to “live in the moment” so we both don’t blow a gasket! I’m very proud to say we didn’t. J (Love you so much Jay! xox).
Dr. Ann came in to let David know that everything was going perfect. She said to expect that this weekend in to next week he will once again be Neutropenic and won’t feel too hot. She’s been amazing. We’re in such good hands.
On Friday 1/19 David will have his stem cells transplanted and they will begin their way to creating a new immune system. They check him every 15 minutes. The staff is incredible. You know how if you’re in the hospital there’s usually a Godzilla nurse? There isn’t anyone like that here in the whole hospital. EVERY single person we meet we fall in love with. I can’t imagine saying good-bye to any of them. Even the IT people who come in to hook David’s computer up are sweet. I want to bring them all to Westborough to introduce them to all our family and friends! It’s the same with the whole crew at The Hampton Inn. I feel like I’m home here!
Signing off with a smile. Thanks Jay.
~ Robbi
[Patient Update:
I'M NOT THE ONLY ONE---
This posting will introduce you to others who are doing the same as I am - gathering information, to make informed decisions, to fight the good fight:
Each of us comes from varied communities and personal backgrounds, but we face the same challenge.
Devona is a woman from Texas, with Scleroderma. She has taken on a fundraising campaign that has raised $13,000. She is scheduled to travel in mid-February, to Northwestern University, Chicago, IL, to participate in a study that MAY get her the same treatment that I am receiving. The study she is a part of is a 2-armed study. This means that she will be randomly selected to either get the stem cell treatment OR a treatment that is known to have some benefits for some people. The purpose is to compare the results to see if the stem cells really do better. (I had already received the alternative treatment, which is why I didn't choose a random study.)
Devona's treatment is expected to cost more than $100,000. Her insurance has twice rejected her claim.
Please take a look at Devona's story to understand a larger picture of the issues related to stem cell research and how it is needed: http://transplantfund.org/Restricted/patient-detail.cfm?pat_id=1688&CFID=4775768&CFTOKEN=56363841
Next, meet Amy and Sheila. ( Since they are not publicly declared I must be vague.) Amy has a very aggressive form of Scleroderma and is just beginning to gather the information she needs to make informed decisions. The doctors she has spoken with are all focused on their own chosen protocols which means she is left to fend for herself. The insurance industry does not willingly pay for trial procedures, and the funding from the FDA and NIH are guided by insurance, political and drug industry lobbies. This is because we have yet to developed strong patient/consumer advocate systems that may act to bring the best opportunities for us to manage our own health care with results and fiscal responsibility.
That is where people like Sheila come in. As Amy's friend, she has chosen to step in to help her sort through the haze, and act as her advocate.
For me it has been Stacey and Elliott Berger. They are the angels who came forward to challenge the normal flow of our lives and proved that communities (local, regional, national & international) can be motivated to support and act to the needs of a single person.
Lastly, I want to tell you about Jane Erickson. A music teacher from New Jersey, forced to retire from the affects of Scleroderma. It was Jane, who was treated by Dr. Traynor in Aug. 2005 and is still reporting decreased symptoms in critical areas, improved quality of life, and (to my good fortune!) she has chosen to be the kind of advocate that reaches out to find people in need.
Jane has taken on multiple rolls, such as mentor to me and a growing list of others who can benefit from her loving guidance thru the heath care & fundraising maze.
I am forever grateful to her.
There are others that I am meeting and even re-meeting (Such as Edward, who I knew as a child - and now we both share a diagnosis). There is a man who lives less than a mile from my home in Westborough who has Scleroderma.
It's 12:30am... I hate to stop but from the the I wrote "12:30am" an hour has passed and now it is 1:30am... time to sleep.]
I never know what to expect when I walk into David’s room at the hospital. I always expect him to be zoned out from all the drugs. But not David, he’s like the energizer bunny. I walked in today and he’s bright and chipper on the phone helping a client and has 2 more calls after this one. I think I’m actually in his way! I’m the one that’s zoned out! All I want to do is sleep and he’s conducting business while the nurses are taking his vitals. He’s just sitting around with all kinds of meds flowing in and out with a bald head, talking on the phone, eating whatever the nurses bring in to him. Not only conducting business but also advising another person who has systemic scleroderma on where to get help. Yep, that’s David. I’m very grateful that he’s so distracted.
Jayme FINALLY got home. 22 hours later. Jay likes to do things with flair. Left us at 10am 1/15 to head for Portland ME airport. Delayed in ME due to bad weather until around 2:30pm. Caught a flight AZ then on to Vegas (now 12am 1/16) and met up with a few friends for dinner, then to El Paso only to get to his car and try his spare key, (why???? because he left his lap top and set of keys in Westborough, and $140. later had it overnited to NM, thank you Bill!) and the spare key set off the alarm and shut down his car. Soooo, he called someone at his station, (now 3am and 5am EST) to pick him up at the airport, drove to the station and took a nap, then took one of the news trucks 45 min to NM (now 7am) to wait for Fed Ex to deliver his lap top and keys 3 hours later. It’s all good though because he has his book, The Power of Intention by Wayne Dyer to read while he’s waiting for Fed Ex. Fed Ex shows up at 9:30ish and he gets his keys and runs out to food shop, (because of course after being away 10 days you have green and blue stuff growing in the fridge) drove back 45 min to El Paso (now somewhere around 1pm) to the station to drop back the news truck to go back to the airport to pick up his car then back to NM to call me and let me know he was safely at home and going to bed, (now around 3:00ish). And the whole time we’re talking Wayne Dyer stuff saying to each other to “live in the moment” so we both don’t blow a gasket! I’m very proud to say we didn’t. J (Love you so much Jay! xox).
Dr. Ann came in to let David know that everything was going perfect. She said to expect that this weekend in to next week he will once again be Neutropenic and won’t feel too hot. She’s been amazing. We’re in such good hands.
On Friday 1/19 David will have his stem cells transplanted and they will begin their way to creating a new immune system. They check him every 15 minutes. The staff is incredible. You know how if you’re in the hospital there’s usually a Godzilla nurse? There isn’t anyone like that here in the whole hospital. EVERY single person we meet we fall in love with. I can’t imagine saying good-bye to any of them. Even the IT people who come in to hook David’s computer up are sweet. I want to bring them all to Westborough to introduce them to all our family and friends! It’s the same with the whole crew at The Hampton Inn. I feel like I’m home here!
Signing off with a smile. Thanks Jay.
~ Robbi
[Patient Update:
I'M NOT THE ONLY ONE---
This posting will introduce you to others who are doing the same as I am - gathering information, to make informed decisions, to fight the good fight:
Each of us comes from varied communities and personal backgrounds, but we face the same challenge.
Devona is a woman from Texas, with Scleroderma. She has taken on a fundraising campaign that has raised $13,000. She is scheduled to travel in mid-February, to Northwestern University, Chicago, IL, to participate in a study that MAY get her the same treatment that I am receiving. The study she is a part of is a 2-armed study. This means that she will be randomly selected to either get the stem cell treatment OR a treatment that is known to have some benefits for some people. The purpose is to compare the results to see if the stem cells really do better. (I had already received the alternative treatment, which is why I didn't choose a random study.)
Devona's treatment is expected to cost more than $100,000. Her insurance has twice rejected her claim.
Please take a look at Devona's story to understand a larger picture of the issues related to stem cell research and how it is needed: http://transplantfund.org/Restricted/patient-detail.cfm?pat_id=1688&CFID=4775768&CFTOKEN=56363841
Next, meet Amy and Sheila. ( Since they are not publicly declared I must be vague.) Amy has a very aggressive form of Scleroderma and is just beginning to gather the information she needs to make informed decisions. The doctors she has spoken with are all focused on their own chosen protocols which means she is left to fend for herself. The insurance industry does not willingly pay for trial procedures, and the funding from the FDA and NIH are guided by insurance, political and drug industry lobbies. This is because we have yet to developed strong patient/consumer advocate systems that may act to bring the best opportunities for us to manage our own health care with results and fiscal responsibility.
That is where people like Sheila come in. As Amy's friend, she has chosen to step in to help her sort through the haze, and act as her advocate.
For me it has been Stacey and Elliott Berger. They are the angels who came forward to challenge the normal flow of our lives and proved that communities (local, regional, national & international) can be motivated to support and act to the needs of a single person.
Lastly, I want to tell you about Jane Erickson. A music teacher from New Jersey, forced to retire from the affects of Scleroderma. It was Jane, who was treated by Dr. Traynor in Aug. 2005 and is still reporting decreased symptoms in critical areas, improved quality of life, and (to my good fortune!) she has chosen to be the kind of advocate that reaches out to find people in need.
Jane has taken on multiple rolls, such as mentor to me and a growing list of others who can benefit from her loving guidance thru the heath care & fundraising maze.
I am forever grateful to her.
There are others that I am meeting and even re-meeting (Such as Edward, who I knew as a child - and now we both share a diagnosis). There is a man who lives less than a mile from my home in Westborough who has Scleroderma.
It's 12:30am... I hate to stop but from the the I wrote "12:30am" an hour has passed and now it is 1:30am... time to sleep.]
posted by DesktopDavid at 10:15 PM
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