Life is a funny thing. Though the fault of nobody, I got the results of my genetic mutation tissue test last night, on my birthday. I knew they were coming any day now. And I knew, as soon as my genetic counselor received them she would call me, because she's great like that. She knew we were waiting. And we were. But with nearly weeks of no talking about Li Fraumeni Syndrome and cancers, I was in a different place. I was enjoying Hanukkah and my birthday and the wedding planning. But *BAM* There it is AGAIN. Something to crush my spirit - hopefully temporarily. But it's always something.I said to Sean last night: "Is this it? Is this all they can tell us? Are we waiting for any more results?" Because honestly, as soon as I'm "happy" again or beginning to move on, or at least trying to move on, we hear other news, other test results. BUT, in all fairness, we were expecting this. We were first expecting the first results, if I had the mutation at all or not. Then we were expecting my mom's results, from when she got tested. When her test came back negative about two weeks ago I was ecstatic, thinking maybe I didn't have the mutation everywhere. Maybe it was just in my blood, and NOT in my breast tissue.
But, of course, life is a funny thing and it works in funny ways. Last night my genetic counselor called to tell me the mutation was found in both my healthy breast tissue, and the tumor tissue (taken from my mastectomy on May).
Having even a mosaic (in some cells, but not all) form of Li Fraumeni Syndrome significantly increases cancer risk and alters your life. There's endless and in-depth screenings and tests. For life. But if the mutation HADN'T been in my breast tissue, I could maybe, JUST MAYBE have lived with the other breast for two or three years. We would have kids, and THEN I would get a mastectomy. But now, knowing the mutation is in my tissue, and at any moment can form another tumor in my healthy breast (whether that's how it works or not, but that's how I picture it), I want my mastectomy sooner. I don't want to live with the risk, and even moreso, the anxiety. I don't want to live with the high-risk screenings of self exams every month, mixed in with MRIs alternated with mammograms every six months. I don't want to wait for results from those tests, and think that I find a lump every time I do an exam, or WONDER if a lump is benign or not when a spot shows up on a mammogram or MRI. I don't want to live like that. So, scratch the whole kids thing right after marriage. (Life sucks, doesn't it? Because I wanted that.) Scratch that, and insert, instead, a left prophylactic mastectomy. After the honeymoon. So, late June, early July time frame. Six months. I can do that. Barely, but I can.
There's no peace of mind until the other breast is gone. I can talk with my therapist, talk with my family, talk with my friends, talk in this blog. I can talk and try to achieve some peace of mind. But the fact is that there's a mutation IN MY BREAST TISSUE and I have one breast left. GET RID OF IT.
This also opens up many other doors I wish would have stayed closed, like the higher chance this could be passed onto my children, and the fact that since this mutation is in my breast tissue, it is in ALL my tissue all over my body.
When I was diagnosed with LFS my world undoubtly changed. I knew health issues would be a part of my life forever. I knew I'd always be screened and scared and screened. But when there was a glimmer of hope the mutation wasn't in my tissue, I was managing. I held onto that, thinking it was just a fluke that I got breast cancer, that the mutation was only in my blood, and that while my chances of getting another cancer were high, they were less high than if the mutation was also in my tissue. I really had that hope. I had that belief. I was aiming for that. I almost believed it. But now, I am devestated all over again and must force myself, again, to "come out" of this whole, to come out of this slump. This little ditch. I'll have to think, again, how this affects my life, in a different way now. Not all that different, but definitely different.
That my plan for 2012 is get married, go on a honeymoon, have a mastectomy. That having kids is this whole huge, big and possibly expensive and worrisome ordeal. That my chance of cancer is HIGH.
What hasn't changed between yesterday, before I got that call, and now? I'm still going to live with the attitude that I can't control getting cancer but I CAN live my life the best way I know how, I CAN get screenings and tests, and I CAN control how I handle what happens to me.
And that's what I'm going with now.
Despite that, my birthday was amazing yesterday! I am now a thriving 27-year-old! Sean brought me two dozen BEAUTIFUL red roses, and got me my favorite dinner, which is (though simple, but always yummy) veggie sushi with brown rice. And I got SO many beautiful, amazing birthday wishes from friends and family! Thanks to everyone who helped make my day a special one!
Tonight one of my best friends, and bridesmaids - Jordanna - comes to visit for the weekend! I am so excited to spend time with her and show her State College, and to have a very Jewish Christmas Eve with her tomorrow night, consisting of a night at the movies and a Chinese food dinner! Merry Christmas to those who celebrate it!
Happy 24th birthday today to my amazing brother, Drew! Happy fourth night of Hanukkah! And happy 99 days until me and Sean TIE THAT KNOT!
No comments:
Post a Comment