Today I had my first procedures prompted by my positive diagnosis for Lynch Syndrome. Prep day was yesterday. Drinking the solution that clears out your digestive tract is the worst of it :)
Today I went to the hospital w/my husband. Gorgeous morning & I was wishing I was anywhere else. The nurses and doctor were all wonderful. I had an upper endoscopy and he took 3 biopsies, esophogus, stomach, (and one other that my husband couldn't remember :) I'll get the results in a few days but the doctor said everything looked good to him. He discovered that I have a hiatal hernia. Then he did a colonoscopy and found one small polyp which he removed. That made me understand again that I can never let this type of screening go. 15 months ago when I had my first colonoscopy I was completely clear. If I had waited the 2-3 years that had been normal for another colonoscopy I could have been in real trouble.
In three weeks I will have a prophylactic hysterectomy & oofrectomy. I am ready to do this. Actually I have been telling my doctors for two years that I thought it should be done and that was BEFORE I knew I had Lynch Syndrome. My mother took DES when she was carrying me so I have had an increased risk of cervical cancer as well. With the double whammy of Lynch Syndrome my doctor said to do this immediately.
In the 3 weeks I have until surgery I will do what I can to make myself as strong as possible, physically and mentally. I decided to buy an amulet from a local indian store this week. I don't believe in mystical powers or that they will cure what ails me. But as I looked at each stone and the power that the writer had assigned to them I began to pick up stones that I thought would remind me to think certain thoughts. One to remind me to be strong, one to remember healthy thought, the power of the earth, to remember to calm my spirit. So each time I look at it I remind myself to breathe, to think positive, to do something healthy.
If they find cancer in my uterus then I'll have to deal with it. I send a prayer up now that they will not. I do not have any symptoms. If they do not, then I will be able to step one step forward and begin a year that I can feel free. Free from cancer. I think that will be the only way I can live happily. Get the tests then close my eyes and breathe for another year. That's my idea anyway.
Steve & I start morning bike rides tomorrow....
Thursday, July 7, 2011
Sunday, July 3, 2011
Positive for Lynch Syndrome
So. Five weeks ago I decided to have a blood test done for Lynch Syndrome. I decided to do that because my 50 year old cousin was diagnosed with colon cancer and because many, many of my mother's relatives have been diagnosed with one form of cancer or another, mostly in the digestive tract. I did the obligatory genetic counseling through Karmanos before they would do the test. Problem was, I didn't really think I had Lynch. My mom was 65 when she was diagnosed with lung cancer, no colon. My sister & brother are both early 60's and no colon cancer. So as the genetic counselor talked and flipped the pages of his 4" binder I listened from a distance. Thinking I could help other members of my family if they were positive. Wanting to understand from a distance how this had affected my family.
Then, the diagnosis. The nurse called and said I had to come into the office to get the test results. I had already waited 4 weeks for the results and was still busy with finals at school. She had the doctor call me back & he was willing to give me the results over the phone.
That is when he said "your test was positive"......................
I am remembering now what I felt like at that moment. It was as if everything, at least my universe, stopped...tipped...for just a moment. I tried to breathe. And I tried to listen...really listen...to what my fate was. He said "I'm sorry to give you this bad news over the phone" to which I replied "well, it is what it is" as my head spun. All I can remember clearly even now is that he called it "bad news".
It has been two weeks and I have scheduled a colonoscopy because my last one was 15 months ago and I did not know at that time that I had Lynch Syndrome. An upper endoscopy. And a full hysterectomy & oofrectomy in 3 weeks. I've had a double exposure in my uterus because my mother took DES when she was carrying me, so time for all non-essential parts to come out. I am 52.
I've decided on a blog as a way to put all of this in some kind of perspective. A month ago this was happening to someone else. Today I feel as if I have no control over my health. That there is a monster waiting to grab me at its leisure, again & again if it chooses.
But...I have always tried to live a really healthy life. I AM really healthy right now. Something in me is refusing to take this lying down. I need to take my head and heart and spirit to a place where I can live happy & healthy even with this disease. With this blog I will try to document this journey...from surgery to recovery to nurturing my spirit...in a way that can bring together other people who have Lynch and so we can learn how to navigate this new information. This testing is new. Knowing what might "get you in the end" (hmmm, the end haha) is a new idea to me. So I'm taking step number one right now.......
Please share your thoughts, your fears, your passions, your ideas and I will try to bring them together. Check out www.lynchcancers.com or "Like" Lynch Syndrome International on FB, there is a lot of good information. And let me know how you've told your children...my next hurdle.
Then, the diagnosis. The nurse called and said I had to come into the office to get the test results. I had already waited 4 weeks for the results and was still busy with finals at school. She had the doctor call me back & he was willing to give me the results over the phone.
That is when he said "your test was positive"......................
I am remembering now what I felt like at that moment. It was as if everything, at least my universe, stopped...tipped...for just a moment. I tried to breathe. And I tried to listen...really listen...to what my fate was. He said "I'm sorry to give you this bad news over the phone" to which I replied "well, it is what it is" as my head spun. All I can remember clearly even now is that he called it "bad news".
It has been two weeks and I have scheduled a colonoscopy because my last one was 15 months ago and I did not know at that time that I had Lynch Syndrome. An upper endoscopy. And a full hysterectomy & oofrectomy in 3 weeks. I've had a double exposure in my uterus because my mother took DES when she was carrying me, so time for all non-essential parts to come out. I am 52.
I've decided on a blog as a way to put all of this in some kind of perspective. A month ago this was happening to someone else. Today I feel as if I have no control over my health. That there is a monster waiting to grab me at its leisure, again & again if it chooses.
But...I have always tried to live a really healthy life. I AM really healthy right now. Something in me is refusing to take this lying down. I need to take my head and heart and spirit to a place where I can live happy & healthy even with this disease. With this blog I will try to document this journey...from surgery to recovery to nurturing my spirit...in a way that can bring together other people who have Lynch and so we can learn how to navigate this new information. This testing is new. Knowing what might "get you in the end" (hmmm, the end haha) is a new idea to me. So I'm taking step number one right now.......
Please share your thoughts, your fears, your passions, your ideas and I will try to bring them together. Check out www.lynchcancers.com or "Like" Lynch Syndrome International on FB, there is a lot of good information. And let me know how you've told your children...my next hurdle.
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