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Cancer type (NET):Carcinoid
How I survive cancer:
Right after I was diagnosed, the first and last thoughts on my mind every day had to do with having cancer. Something as simple as renewing a magazine subscription gave me pause: one year or two? When we went on a Caribbean cruise eight weeks after my surgery, I couldn't keep from wondering if it would be my last trip.
I felt like I had fallen and couldn't get back up. Even though I had put on my red dress and high heels and gone to a party before my incision had fully healed, I still felt as if I'd misplaced the "spunky" woman that I had always been. Occasionally I would have a moment of near-panic: this couldn't possibly be happening to me!
But as time passed more and more things crowded in: not only did I have to deal with decisions about a course of treatment, my only sibling had been diagnosed with lung cancer one month before my own diagnosis. Nine months later I watched him take his last breath, and I became responsible for my 91 year old mother who has mild dementia.
Gradually I stopped wondering if every headache had something to do with carcinoid—stopped wondering about time or the lack of it—and just got on with living. I'm definitely no superwoman, but I have learned that you play the hand that you've been dealt.
What I know for sure is that I don't want to waste any more of my time than necessary dwelling on my fate. It's a fact: I have cancer. But it's not who I am.
I'm still me. I'm busy working on a novel, I'm looking forward to a Christmas cruise down the Danube River, I'm going to that Noid conference in Norfolk in September, and I'm still killing innocent rosebushes with my brown thumb. There are dogs to be hugged, a Maine Coon kitten that makes me laugh, a wonderful, supportive husband to be told that I love him, friends to meet for a latte, and a million other things that make up the day to day moments of my life. I'm going to wring out every drop of living that I can, for as long as I can.
When my brother died I was reminded of something: in the end, I will win. Even if "the beast" eventually steals my life, it can't survive without a host. So if I go, it goes. I have plans to kill it off long before that time—with the help of some good research—but I will definitely destroy this carcinoid monster inside of me eventually, one way or the other.
How I fight for a cure:
We buy the stock of companies who are working on a cure.
I have written letters to my congressmen, governor and other politicians asking for support for carcinoid research, and I have asked numerous friends to do the same.
I am learning all that I can about this disease, and I have shared my newfound knowledge with anyone who expresses an interest. Several local doctors and nurses are more aware of carcinoid because my regular doc, GYN, surgeon, etc. have all studied up on the disease because of my diagnosis.
I belong to a listserv for support in my fight with this cancer. It helps me to listen to others who are further along the road than I am and to offer support to the new patients.
My caring words of encouragement:
Live, love, laugh. Each day is a gift, whether you're a carcinoid fighter or not. Fill those days with what you most enjoy. Don't put off doing things that you've always wanted to do—cheesecake is no more fattening at the beginning of the meal than it is at the end.
Many regular oncologists have no experience with this disease, so find yourself a carcinoid specialist to help manage your care. Some people with this type of cancer live for decades, so you'll probably be around for a long, long time. Educate yourself, make sure that you have tests and scans as scheduled, and take care of problems as they arise.
Someone teasingly asked me if I had taken a ride yet on a "bull named Fu Man Chu," and I was bewildered, since I rarely listen to country music. It turned out that she was referring to a song called "Live Like You Are Dying," which I thought was pretty good advice as well as a very nice compliment from her.
Actually, I never have ridden a bull—but I did ride an elephant, and I went swimming with dolphins. Do either of those things count?