To All-
Before I get into a very brief update I have to confess something to you. After a re-read of our first post I felt a little embarrassed that, with all the research that we've done regarding Rets condition that I basically said "you can do it yourself" I'm sorry for that. As you can imagine we have, as said, researched the daylights out of Rets disease so I felt at least I could provide each of you the ability to educate yourself just a little and who knows how that may help you, a friend, a family member or maybe someone you might just come in contact with. There are numerous sites for you to visit but because we are having treatment at the Fred Hutch and the Seattle Cancer Care Alliance I figured that at least I could provide you the links to those sites so here they are:
http://www.seattlecca.org/default.cfm
http://www.fhcrc.org/
Believe me they have more info than you comprehend as well as links to numerous more sites, hopefully this will provide you with additional information.
As I mentioned in our first post because the multiple myeloma attacks the skeletal structure, Ret has severe osteoporosis that basically of a 85 year old woman. An actually how we started on the road to where we are today was because she developed hairline fractures in eight of her vertebrae in her spine giving us cause to search for a remedy. Well because of her osteoporosis she has to sleep in a recliner, because laying flat in bed exerts too much pressure on her spine. Unfortunately it's extremely difficult for her just to get out of the chair in the morning, usually it takes anywhere from 15 to 20 minutes. Ok I know you're saying where's he going with this, guy's this is for us, I bought one of those power lift recliners, what took 15-20 minutes now takes maybe 5! Guy's guess who's going to use it after we get her back on track me of course naps, beer, ball games and one touch of the button to help lift me up and get me to the bathroom how cool is that, just think then Ret won't have to do it. But seriously you can't imagine what a psychological boost it has been for her.
In addition I hope you understand that my crazy humor is also a way for us to deal with what has become our biggest challenge in life. What I also hope you see or maybe read between the lines is that it truly is the little things that can make a huge difference in how someone feels about their condition, themselves or just trying to navigate daily life when burdened with life challenges.
Again thanks for all your love and support.
Ret and Jack
Saturday, February 28, 2009
Thursday, February 26, 2009
To Our Friends and Family-
It's due to your love, thoughts, wishes, prayers and overwhelming support that we've created this site or blog I guess. If it were me that had this dreaded condition, instead of Ret, one phone call would have done it. Sorry I just had to throw that in. Again that is why we created this site to help you follow her journey.
As many of you know and for those who are visiting here for the first time Ret has been diagnosed with Multiple Myeloma, a blood borne cancer that affects the skeletal structure. Luckily it's treatable however as with most cancers not curable. I won't bore you with what I know and don't know at this time, however there a number of sites available that you can visit that will provide those of you who might be interested in researching this condition further.
Safe to say it's been along journey already to get to this point, we've had about five months of trial and error numerous doctors, tests, retests, pushes, prods, needles and I guess too much more to mention. That said we've finally reached the point where treatment started, actually yesterday. We're lucky that her treatment is a daily dose of a drug called Thalidomide, yes the 1950's drug that was called "the flipper baby drug", you can research that as well. But basically it helps cut off the blood supply to the cancer cells. I know that may not sound lucky but at least we're not making daily trips to some clinic somewhere in the middle of the day. Plus it's only $5,300.00 per months supply, thank god for insurance. The goal is to get the cancer into remission, capture some of Ret's bone marrow, freeze it then do a "Stem Cell Transplantation" know as "Autologous Stem Cell Transplantation" which is using the patients own cells. This has proven be more effective than using donors for the transplant. As with all treatments they are dependent upon how the patient accepts or rejects those treatments and the time lines for those are just as varied.
Hopefully this has given you a little background on Ret's condition, our plans for moving forward and a way to keep in touch as we move ahead on her journey to recovery.
Also we hope that you understand that this is the best way for us to keep so many of you up to date on her progress. Again as I said earlier, if it was me not problem one phone call would do it, but with Ret we don't have enough phones, phone lines or time to answer each of you individually.
Again, thanks for all your support.
All Our Love
Ret and Jack
It's due to your love, thoughts, wishes, prayers and overwhelming support that we've created this site or blog I guess. If it were me that had this dreaded condition, instead of Ret, one phone call would have done it. Sorry I just had to throw that in. Again that is why we created this site to help you follow her journey.
As many of you know and for those who are visiting here for the first time Ret has been diagnosed with Multiple Myeloma, a blood borne cancer that affects the skeletal structure. Luckily it's treatable however as with most cancers not curable. I won't bore you with what I know and don't know at this time, however there a number of sites available that you can visit that will provide those of you who might be interested in researching this condition further.
Safe to say it's been along journey already to get to this point, we've had about five months of trial and error numerous doctors, tests, retests, pushes, prods, needles and I guess too much more to mention. That said we've finally reached the point where treatment started, actually yesterday. We're lucky that her treatment is a daily dose of a drug called Thalidomide, yes the 1950's drug that was called "the flipper baby drug", you can research that as well. But basically it helps cut off the blood supply to the cancer cells. I know that may not sound lucky but at least we're not making daily trips to some clinic somewhere in the middle of the day. Plus it's only $5,300.00 per months supply, thank god for insurance. The goal is to get the cancer into remission, capture some of Ret's bone marrow, freeze it then do a "Stem Cell Transplantation" know as "Autologous Stem Cell Transplantation" which is using the patients own cells. This has proven be more effective than using donors for the transplant. As with all treatments they are dependent upon how the patient accepts or rejects those treatments and the time lines for those are just as varied.
Hopefully this has given you a little background on Ret's condition, our plans for moving forward and a way to keep in touch as we move ahead on her journey to recovery.
Also we hope that you understand that this is the best way for us to keep so many of you up to date on her progress. Again as I said earlier, if it was me not problem one phone call would do it, but with Ret we don't have enough phones, phone lines or time to answer each of you individually.
Again, thanks for all your support.
All Our Love
Ret and Jack
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