Today I went to the Cancer Genetics Program at Fancy Hospital to start finding out if I have either of the
BRCA gene mutations, more common among us
Ashkenazim than the general population. The mutations increase a person's risk for both breast and ovarian cancer. If I have the mutation, I'll send my right ovary into storage. (The left has already gone to its final reward.) I was the only patient in the office, which just had three chairs in the waiting room. It was so odd and quiet compared to the vast waiting area of Chemolandia. A chirpy intern had interviewed me on the phone already to gather all the information about cancer in the family. (Yes, we have cancer, we have many kinds of cancer: colon, endometrial, breast, stomach, lung, skin, parotid gland. Not to mention leukemia and
Waldenström’s macroglobulinemia.) The intern came out to get me and I joined her and the genetic counselor, who was tall and blond and said, Someone's been writing on your head. The intern explained everything to me via diagrams in a book. She did a good job. Based on my family history, I have an 18 percent chance of having a BRCA mutation. I decided I wanted the blood test for it, and I also agreed to participate in some research, so four tubes of my blood were collected.
The blonde measured my head to see if it was big. It's not. It's normal. I always thought it was big, but that's because of the bulkiness of my former hair. There's a rare syndrome,
Cowden, which is caused by a genetic mutation and makes you more likely to develop breast, thyroid, uterine and maybe colon cancer. I may be tested for that mutation, too. Besides a big head, other symptoms of Cowden syndrome are awkward gait, skin tags and bumps, what sounded like "
hammertoes" in your colon, and
lipomas. I've had a couple of random bumps removed and also a lipoma (which grew back). A lipoma is a fatty (lipos=Greek for fat; think liposuction...and My Big Fat Greek Wedding) tumor under your skin. I have one on my upper arm that grew to replace the one that was cut out. At the time of the surgery, I asked the surgeon to show it to me, and he did. It was yellow like chicken fat. So now my homework is to get the pathology reports from the bump- and lipoma-ectomies and my colonoscopy. The Counseling gal said tongue and mouth bumps can be part of the syndrome, and she checked out a tongue bump I've had for about 15-20 years. She looked around my mouth and gums. I felt like we were checking for ticks. (My friend D asks: What's considered foreplay in the Ozarks? Checking for deer ticks.)
I have to fill out a form to help researchers looking at another mutation. The counselor said there is follow-up for that study every two years. So people will call you up and ask, Do you have breast cancer? I asked, picking up an invisible phone. I picked it up again, Do you have cancer? Do you have cancer? Are you dead?
It was that kind of atmosphere, where I felt I could do that. If those two are any indication, genetic counselors are a load of fun.
Today was the first time in five days that I was happy. I didn't feel like crying. I could laugh. It made me realize how miserable I'd been feeling.
I'll get the results in about four to five weeks. If I have BRCA1 or 2, then I'll have to think about getting my right breast removed, too. L and I have been saying that the mastectomy was nothing compared to the chemo, but still the mastectomy was
something. And those fucking drains stuck inside my body! At least if I do have to get the second breast removed, I'll be grateful that I haven't had reconstruction yet. I could get both breasts filled up at the same time.
Years ago I was friends with a genetic counselor. We met when we were docents for the Chicago Architecture Foundation. When she gave tours of
Glessner House, she'd say: See that cabinet over there? It's 100 years old...
and it's never been opened. Her father gave Jewish tours in New York, and gave us a private one once of the Lower East Side. Our friend had breast cancer. And then
she died.
The blonde measured my head to see if it was big. It's not. It's normal. I always thought it was big, but that's because of the bulkiness of my former hair. There's a rare syndrome, Cowden, which is caused by a genetic mutation and makes you more likely to develop breast, thyroid, uterine and maybe colon cancer. I may be tested for that mutation, too. Besides a big head, other symptoms of Cowden syndrome are awkward gait, skin tags and bumps, what sounded like " hammertoes" in your colon, and lipomas. I've had a couple of random bumps removed and also a lipoma (which grew back). A lipoma is a fatty (lipos=Greek for fat; think liposuction...and My Big Fat Greek Wedding) tumor under your skin. I have one on my upper arm that grew to replace the one that was cut out. At the time of the surgery, I asked the surgeon to show it to me, and he did. It was yellow like chicken fat. So now my homework is to get the pathology reports from the bump- and lipoma-ectomies and my colonoscopy. The Counseling gal said tongue and mouth bumps can be part of the syndrome, and she checked out a tongue bump I've had for about 15-20 years. She looked around my mouth and gums. I felt like we were checking for ticks. (My friend D asks: What's considered foreplay in the Ozarks? Checking for deer ticks.)
I have to fill out a form to help researchers looking at another mutation. The counselor said there is follow-up for that study every two years. So people will call you up and ask, Do you have breast cancer? I asked, picking up an invisible phone. I picked it up again, Do you have cancer? Do you have cancer? Are you dead?
It was that kind of atmosphere, where I felt I could do that. If those two are any indication, genetic counselors are a load of fun.
Today was the first time in five days that I was happy. I didn't feel like crying. I could laugh. It made me realize how miserable I'd been feeling.
I'll get the results in about four to five weeks. If I have BRCA1 or 2, then I'll have to think about getting my right breast removed, too. L and I have been saying that the mastectomy was nothing compared to the chemo, but still the mastectomy was something. And those fucking drains stuck inside my body! At least if I do have to get the second breast removed, I'll be grateful that I haven't had reconstruction yet. I could get both breasts filled up at the same time.
Years ago I was friends with a genetic counselor. We met when we were docents for the Chicago Architecture Foundation. When she gave tours of Glessner House, she'd say: See that cabinet over there? It's 100 years old... and it's never been opened. Her father gave Jewish tours in New York, and gave us a private one once of the Lower East Side. Our friend had breast cancer. And then she died.