Stem Cell Transplant! Almost as good as being proven innocent. After a full day of medical testing, I met with Dr. Richard Burt at Northwestern Memorial Hospital in Chicago and he told me I was indeed a candidate for the stem cell transplant.
Just for some short education, the procedure I'll be getting is called an autologous stem cell transplant. The very basics are this: I will receive chemo and take some shots that push stem cells from my bone marrow into my blood stream, they will be harvested from a vein in my neck then after a couple weeks then 5 more days of chemotherapy to massively suppress my immune system I will be given back or receive the "transplant" of my own "cleaned up" stem cells. I'll then wait in the hospital in isolation for a few weeks for them to sort of reproduce a strong immune system.
Because my immune system is attacking my own body, the idea of the transplant is that we can take out my stem cells, clean them up and then give them back to my immunosuppressed body to sort of "reboot" my immune system. So what's the catch? Well there are two.
One is the risk of infection and complication during the transplant. Because my immune system will be so suppressed, there is a higher risk of infections. There are lots of precautions taken to avoid this, but the truth is a risk remains.
The other catch is the cost. This procedure could cost up to $110, 000. And because I'm not insured, I need to have all the money before we can proceed with the transplant. So, the fundraising efforts are on. We hope to reach our goal sometime before the end of summer. We have a small start already and are working hard to organize and plan.
Thank you so much for the encouragment, prayers and help so many of you have already given. I am grateful and because of so many of you I can continue to be hopeful. Thanks again and I will let you know as fundraising events come.
Beth
Lone Cyprus
Thursday, April 30, 2009
Tuesday, March 3, 2009
Health Update
Just an update on my health, both physical and emotional...
I started chemotherapy infusions in January. I recieve IV Cytoxan once a month and have had 2 so far with 4 more to go. The chemo will not cure scleroderma but is the standard care to potentially maintain the level of lung function I have. In November my TLC (Total Lung Capacity) was at about 50% and my DLCO (measurement of gas exchange in my lungs) was at about 35%. We hope the chemo will keep my lung function from getting worse and sort of "hold me over" until I can get a more effective treatment.
The part of all of this that I haven't shared with many people is the challenge of being uninsured. It's a very personal aspect of this journey for me, but is necessary to share so that I can explain the possible treatments for me and the reason I have to wait for so long to get them. The truth is, there is a treatment I could receive that if I survived the process, would likely return me to a completely normal life. Stem cell transplants for Scleroderma patients have shown incredible results in reversing the damage the disease does to ones body. This procedure is still considered "investigational" when used for Scleroderma. There are many research studies that offer stem cell transplantation opportunities. The problem is that because scleroderma is so rare and transplants are so costly, none of these studies are funded and the patient must have insurance, be independently wealthy or be able to fundraise the $150,000 it costs for the procedure. The bottom line is that I may have insurance in 4 months or it could take up to 2 1/2 years to obtain. So my challenge is to find a way to not only stay alive that long, but also to stay well enough to receive the transplant.
So I wait. And I continue to research options to maintain and get any sort of improvement in lung function that I can. Roughly 300, 000 people in the US have scleroderma. About 1/3 of those people have diffuse systemic sclerosis (my diagnosis that includes both skin and internal organ invovlement) with 50% of those dying within 5 years. I am in my fifth year of diagnosis, although the severity wasn't known until just a few months ago. I already feel that I have achieved some victories in this journey, considering I still at least appear healthy on the outside.
Scleroderma isn't something I could prevent or predict. I don't deserve it nor do I have a choice. I don't want pity or attention because of it. I only want understanding and support. I have an incredible amount already. Thank you for that. I'll keep you informed.
I started chemotherapy infusions in January. I recieve IV Cytoxan once a month and have had 2 so far with 4 more to go. The chemo will not cure scleroderma but is the standard care to potentially maintain the level of lung function I have. In November my TLC (Total Lung Capacity) was at about 50% and my DLCO (measurement of gas exchange in my lungs) was at about 35%. We hope the chemo will keep my lung function from getting worse and sort of "hold me over" until I can get a more effective treatment.
The part of all of this that I haven't shared with many people is the challenge of being uninsured. It's a very personal aspect of this journey for me, but is necessary to share so that I can explain the possible treatments for me and the reason I have to wait for so long to get them. The truth is, there is a treatment I could receive that if I survived the process, would likely return me to a completely normal life. Stem cell transplants for Scleroderma patients have shown incredible results in reversing the damage the disease does to ones body. This procedure is still considered "investigational" when used for Scleroderma. There are many research studies that offer stem cell transplantation opportunities. The problem is that because scleroderma is so rare and transplants are so costly, none of these studies are funded and the patient must have insurance, be independently wealthy or be able to fundraise the $150,000 it costs for the procedure. The bottom line is that I may have insurance in 4 months or it could take up to 2 1/2 years to obtain. So my challenge is to find a way to not only stay alive that long, but also to stay well enough to receive the transplant.
So I wait. And I continue to research options to maintain and get any sort of improvement in lung function that I can. Roughly 300, 000 people in the US have scleroderma. About 1/3 of those people have diffuse systemic sclerosis (my diagnosis that includes both skin and internal organ invovlement) with 50% of those dying within 5 years. I am in my fifth year of diagnosis, although the severity wasn't known until just a few months ago. I already feel that I have achieved some victories in this journey, considering I still at least appear healthy on the outside.
Scleroderma isn't something I could prevent or predict. I don't deserve it nor do I have a choice. I don't want pity or attention because of it. I only want understanding and support. I have an incredible amount already. Thank you for that. I'll keep you informed.
Tuesday, December 30, 2008
The Ride.
I'll begin chemotherapy in a couple weeks. The factual and logistical information about that is more than I feel like typing so I'll update about that later. I'm just FEELING a lot today. I feel better talking about it and writing about it. I use sharing as my therapy. It's funny because I never imagined I would ever be the type of person who would need much therapy. The sheer weight of being faced with your own mortality in such a sudden and unavoidable way, can feel devastating. To be 30 and know that it would be a small miracle to see your 40th birthday is a reality I wish on no one. Naturally, there's a lot I feel, there's a lot to say. Some of it is dark and scary. Some of it is joyful and hopeful. On one hand I look at my life and I'm so thankful. I've been blessed with more than I deserve. And on the other hand I look at my future and there's fear of not so much the end, but more of the suffering until the end. The path my disease generally takes in people, especially at the end, isn't a pretty one. So this note isn't totally a happy one filled with good news and candy and flowers. I don't apologize for that. This is the reality of living and dying. It's my reality. Most people would hear my story and feel sad or sorry for a moment, they may even remember to pray occasionally for me. For all of that, I'm grateful. The truth is though, their lives go on like normal. With each person having their own individual joys and sorrows. It just so happens that my family, close friends and myself have this to face. Three weeks after my diagnosis, I'm searching for a way to turn this seemingly bleak future into as joyful a time as I possibly can. I have had times of feeling sad, confused, angry, cheated...all of it. I fully expect there will be more moments like that. My hope is that I still have hope. No one can predict the coming months or years, but I know each day will come one at a time and until they no longer do I'll make every effort to be thankful. As I see it my only other choice is to be angry or upset because this just isn't fair. But like my wise, wise mother has been telling me for years, Beth, a fair is a place you go to ride rides.
Thursday, December 11, 2008
Life
In the Spring of 2005 I was diagnosed with scleroderma. This is a rare autoimmune disease that not many people have heard of or know much about. In an effort to keep from making tons of phone calls or separate email messages, I decided to write a note to update those friends of mine that I no longer have regular contact with.
Scleroderma means “hard skin.” It is not contagious,
infectious, or cancerous. It is an autoimmune disease in which
the body attacks its own tissues. This causes an overproduction
of collagen. Connective tissue forms the body’s tendons and
ligaments, organ walls, blood vessels, and parts of bones.
Collagen makes connective tissue strong and flexible. Collagen is
a very important substance in the body. When the body makes
too much of it, as in scleroderma, body tissues become hard,
thick, and tight. Too much collagen severely damages, and
sometimes destroys, major internal organs and makes the skin,
lungs, and other organs function poorly.
Scleroderma can affect the internal organs of the body, large
areas of skin, or both. The disease can be classified into 2
groups: localized and systemic. With localized disease, only the
skin is affected; whereas, systemic disease can affect the whole
body, both the skin and internal organs.
Systemic scleroderma, which is also called systemic sclerosis
(SSc), affects the skin, tissues, blood vessels, and major internal
organs. It can be further classified as either limited or diffuse.
Limited scleroderma typically comes on gradually and affects the
skin only in certain areas such as the hands, face, lower arms,
and legs. Skin thickening may take years to develop.
In diffuse scleroderma, skin thickening usually occurs quickly
and over much of the body—hands, face, upper arms, upper
legs, chest, and stomach. In addition to skin, connective tissue
and internal organs such as the heart, lungs, and kidneys are
often affected. (www.sclerodermafoundation.org)
My specific type of scleroderma is systemic and has recently (we believe) progressed from a chronic annoyance to something much more serious. After a few tests and appointments with a specialist we found that my lungs are only functioning at about 35%. Inflammation in my lungs is causing scarring and reducing their function. The good bit of news is that there is treatment I can receive. This however is also where the big decisions come in.
One choice is to take a nasty, costly chemotherapy drug called Cytoxan to reduce the inflammation and prevent further scarring. I could take this drug daily and orally for a period of time. The other choice for me is to go through a screening process and attempt to enter a research study called the SCOT Study. You can read more about it at www.sclerodermatrial.org. Basically there are two separate groups into one of which I would be randomly assigned. One group will receive high doses of IV Cytoxan once a month for 12 months. The other group will receive a stem cell transplant. (There is a lot of info about this on the website but it's important to understand that this does not involve embryonic stem cells. My own stem cells will be taken out "cleaned up" then returned to me.)
This is an enormous decision for me to make. I have to decide how much risk I'm willing to take and how sick I'm willing to get. It may seem strange to write a note about this on such a public platform but anyone who really knows me wouldn't expect any less. It's impossible for me to hide how I feel or what's happening in my life. I'm open. That's always been me. And now I'm being open about the fact that I need your prayers. In addition to that, I want people to be aware. Research can continue if people become aware of the disease and continue to study and give to support it. (www.sclerodermaresearchfoundation.org)
I'll update when a decision is made and a plan is in place. Thanks for reading.
Peace.
Scleroderma means “hard skin.” It is not contagious,
infectious, or cancerous. It is an autoimmune disease in which
the body attacks its own tissues. This causes an overproduction
of collagen. Connective tissue forms the body’s tendons and
ligaments, organ walls, blood vessels, and parts of bones.
Collagen makes connective tissue strong and flexible. Collagen is
a very important substance in the body. When the body makes
too much of it, as in scleroderma, body tissues become hard,
thick, and tight. Too much collagen severely damages, and
sometimes destroys, major internal organs and makes the skin,
lungs, and other organs function poorly.
Scleroderma can affect the internal organs of the body, large
areas of skin, or both. The disease can be classified into 2
groups: localized and systemic. With localized disease, only the
skin is affected; whereas, systemic disease can affect the whole
body, both the skin and internal organs.
Systemic scleroderma, which is also called systemic sclerosis
(SSc), affects the skin, tissues, blood vessels, and major internal
organs. It can be further classified as either limited or diffuse.
Limited scleroderma typically comes on gradually and affects the
skin only in certain areas such as the hands, face, lower arms,
and legs. Skin thickening may take years to develop.
In diffuse scleroderma, skin thickening usually occurs quickly
and over much of the body—hands, face, upper arms, upper
legs, chest, and stomach. In addition to skin, connective tissue
and internal organs such as the heart, lungs, and kidneys are
often affected. (www.sclerodermafoundation.org)
My specific type of scleroderma is systemic and has recently (we believe) progressed from a chronic annoyance to something much more serious. After a few tests and appointments with a specialist we found that my lungs are only functioning at about 35%. Inflammation in my lungs is causing scarring and reducing their function. The good bit of news is that there is treatment I can receive. This however is also where the big decisions come in.
One choice is to take a nasty, costly chemotherapy drug called Cytoxan to reduce the inflammation and prevent further scarring. I could take this drug daily and orally for a period of time. The other choice for me is to go through a screening process and attempt to enter a research study called the SCOT Study. You can read more about it at www.sclerodermatrial.org. Basically there are two separate groups into one of which I would be randomly assigned. One group will receive high doses of IV Cytoxan once a month for 12 months. The other group will receive a stem cell transplant. (There is a lot of info about this on the website but it's important to understand that this does not involve embryonic stem cells. My own stem cells will be taken out "cleaned up" then returned to me.)
This is an enormous decision for me to make. I have to decide how much risk I'm willing to take and how sick I'm willing to get. It may seem strange to write a note about this on such a public platform but anyone who really knows me wouldn't expect any less. It's impossible for me to hide how I feel or what's happening in my life. I'm open. That's always been me. And now I'm being open about the fact that I need your prayers. In addition to that, I want people to be aware. Research can continue if people become aware of the disease and continue to study and give to support it. (www.sclerodermaresearchfoundation.org)
I'll update when a decision is made and a plan is in place. Thanks for reading.
Peace.
Subscribe to:
Posts (Atom)