Vicki Marrin
Events Chair
Here I am at a place I did not expect to be in the year 2000! It was then that I was diagnosed with the infamous LMS, a cancer that is aggressive, sneaky, rare, and not very well known. I had been waiting in the hospital for my doctor to tell me the results of the tests that had been done, and while I was waiting, I was reading The Greatest Generation by Tom Brokaw. The peculiar aspect of the doctor visit was that, as my doctor told me it was cancer, I felt like I was simply reading another story about someone else as had been written in the book. This was not me he was talking about!
I went through a hysterectomy and then almost immediately began chemotherapy, then two sets of radiation. As my oncologist said, “they threw the kitchen sink at me.”
Your life literally depends on the decisions you make as you face this terrible disease. Have chemo? Do radiation? What are the long-term effects? What are the side effects? And other questions – will I be able to perform my job? Will I be able to keep my job? What will my family say? How will they react in the long run? Who will really support me? And, of course, the big one – will I survive this?
When one is confronted with a problem, the advice is to research it to help in finding a solution. I went online after I was diagnosed. After an hour, I turned the computer off. “What did you find?” my husband asked. “Enough to make me sick. I don’t want to know any more.” I found out the low survivor rate for this terrible cancer; how it can recur; how it is aggressive.
When I was introduced to my oncologist (Dr. Abraham Mittelman), I told him, “Don’t give me facts and statistics; just tell me what we are going to do to get me through this.” I knew that if I were told I had three months to live, I would die 90 days later because I follow instructions really well! He simply grinned, shook my hand, and said “It’s a deal!”
Perhaps, as I’ve been told, attitude goes a long way toward getting better. Hard to say. After all, I did have a recurrence a year and a half later – a bump on my head that I knew hadn’t been there before. When I saw the dermatologist to have it biopsied, he said, “Bumps on the head are common. Do you really want it off?” I responded – with a sense of going “against” this doctor’s advice – “Yes; after the kind of cancer I had, I know that a bump on my head is not usual.” The biopsy told us it was more LMS. After a long battery of tests, my body showed no more trace of LMS after the bump had been removed.
So now I live between doctor visits, the fear receding in the months between. I am so grateful to the men and women I have met along this path I would not have chosen. When my husband and I first visited the cancer treatment suite at Westchester Medical Center, my husband commented, “This is so awful!” But I said, “No – Thank God for this place; it is where I’m going to get better!” All of those people who work there are doing so to make me better! I have had many, many blessings.
In April 2008 I finally decided to learn about the cancer that changed my life. So I attended HugFest. And what an amazing experience. So many things I did not know; this was not just a “women’s” disease – men get it too. It can appear in any part of the body. There is research on this dragon, but it is still in the beginning stages.. I was very interested to hear what our wonderful researchers had to say about the tests they are running and the results they have found; but they have such a long way to go. I admire their education, focus, and dedication to finding a cure. The more we can help them, the more likely it is that we find a cure; and that cure will very likely help others who have other kinds of cancers as well. That is the light at the end of our tunnel.
HugFest was a wonderful experience; it is very comforting to talk to others who have experienced what you have. From 2000 to 2008 I had never met anyone who had it. I also learned what great people – and what a variety of people – get this disease. I am delighted to have met people like Joni, Loretta, and Jane.
Please forgive the rambling nature of this letter. It is just to give background to why I would like to become a board member of the NLMSF. I remember a slide that one of the research doctors showed; it was of a tiny car in a big parking lot. He said this was just like the amount of research that has been done on LMS. Then I realized that when I was diagnosed, there wasn’t even a parking lot!
I am grateful to all of those who came before me who had to deal with LMS. I would like to “pay it forward” to those who have been diagnosed with LMS and need a little help - and to offer hope that we can and we will find a cure.
Here I am at a place I did not expect to be in the year 2000! It was then that I was diagnosed with the infamous LMS, a cancer that is aggressive, sneaky, rare, and not very well known. I had been waiting in the hospital for my doctor to tell me the results of the tests that had been done, and while I was waiting, I was reading The Greatest Generation by Tom Brokaw. The peculiar aspect of the doctor visit was that, as my doctor told me it was cancer, I felt like I was simply reading another story about someone else as had been written in the book. This was not me he was talking about!
I went through a hysterectomy and then almost immediately began chemotherapy, then two sets of radiation. As my oncologist said, “they threw the kitchen sink at me.”
Your life literally depends on the decisions you make as you face this terrible disease. Have chemo? Do radiation? What are the long-term effects? What are the side effects? And other questions – will I be able to perform my job? Will I be able to keep my job? What will my family say? How will they react in the long run? Who will really support me? And, of course, the big one – will I survive this?
When one is confronted with a problem, the advice is to research it to help in finding a solution. I went online after I was diagnosed. After an hour, I turned the computer off. “What did you find?” my husband asked. “Enough to make me sick. I don’t want to know any more.” I found out the low survivor rate for this terrible cancer; how it can recur; how it is aggressive.
When I was introduced to my oncologist (Dr. Abraham Mittelman), I told him, “Don’t give me facts and statistics; just tell me what we are going to do to get me through this.” I knew that if I were told I had three months to live, I would die 90 days later because I follow instructions really well! He simply grinned, shook my hand, and said “It’s a deal!”
Perhaps, as I’ve been told, attitude goes a long way toward getting better. Hard to say. After all, I did have a recurrence a year and a half later – a bump on my head that I knew hadn’t been there before. When I saw the dermatologist to have it biopsied, he said, “Bumps on the head are common. Do you really want it off?” I responded – with a sense of going “against” this doctor’s advice – “Yes; after the kind of cancer I had, I know that a bump on my head is not usual.” The biopsy told us it was more LMS. After a long battery of tests, my body showed no more trace of LMS after the bump had been removed.
So now I live between doctor visits, the fear receding in the months between. I am so grateful to the men and women I have met along this path I would not have chosen. When my husband and I first visited the cancer treatment suite at Westchester Medical Center, my husband commented, “This is so awful!” But I said, “No – Thank God for this place; it is where I’m going to get better!” All of those people who work there are doing so to make me better! I have had many, many blessings.
In April 2008 I finally decided to learn about the cancer that changed my life. So I attended HugFest. And what an amazing experience. So many things I did not know; this was not just a “women’s” disease – men get it too. It can appear in any part of the body. There is research on this dragon, but it is still in the beginning stages.. I was very interested to hear what our wonderful researchers had to say about the tests they are running and the results they have found; but they have such a long way to go. I admire their education, focus, and dedication to finding a cure. The more we can help them, the more likely it is that we find a cure; and that cure will very likely help others who have other kinds of cancers as well. That is the light at the end of our tunnel.
HugFest was a wonderful experience; it is very comforting to talk to others who have experienced what you have. From 2000 to 2008 I had never met anyone who had it. I also learned what great people – and what a variety of people – get this disease. I am delighted to have met people like Joni, Loretta, and Jane.
Please forgive the rambling nature of this letter. It is just to give background to why I would like to become a board member of the NLMSF. I remember a slide that one of the research doctors showed; it was of a tiny car in a big parking lot. He said this was just like the amount of research that has been done on LMS. Then I realized that when I was diagnosed, there wasn’t even a parking lot!
I am grateful to all of those who came before me who had to deal with LMS. I would like to “pay it forward” to those who have been diagnosed with LMS and need a little help - and to offer hope that we can and we will find a cure.
