Tuesday, August 3, 2010

Donating my tissue to research

So my bilateral salpingo oophorectomy is now less than 72 hours away. It is time for me to make final decisions and preparations like what type of hormones I will take (no, I do not intend to go cold turkey); what I will pack for the hospital (something with no waistband); and what flavor jello I want to eat (not lime). Oh yes, and to cook and freeze some food for my husband (done). Fortunately many of my friends will be bringing meals over the next couple of weeks so we won't starve during my "vacation" from the kitchen.

Mentally, I am ready for this, although I do not look forward to it. I feel about this surgery much as I did about my mastectomies three and and half years ago: I know I am making the right decision, but I don't like it. I don't like that my BRCA2 mutation is forcing me to tinker with nature and run headlong into surgical menopause with all of its side effects at the age of 46. One of my college roommates has already been through natural menopause, which clearly happens to women my age so even though my ovaries are cranking along, I am likely only cutting short their life span by a few years. In the moments when I question the timing of my decision (not the decision to remove my ovaries, which I see as clearly the right decision, but the timing of the surgery), I remind myself that natural menopause is not far off; that I am lucky because I have not had cancer and am therefore eligible to take estrogen to ease my way through the transition; that my bones are currently healthy; and of course that I have outstanding doctors taking care of me.

My husband and I had a wonderful trip to Utah last week. We had an adult-oriented week because our children are away at summer camp for the next few weeks. This is the first time both our children have been gone from home at the same time for more than a weekend. It was truly nice to remember how much I enjoy spending time with my husband. We hiked in the beautiful mountains around Snowbird and Alta, where the wildflowers are at their peak. We learned from and were inspired by the incredible scholars at the Wexner Heritage Program's Summer Institute. And for the most part I put the reality of my upcoming surgery out of my mind.

But now that I am home, reality has set in. Yes, this is going to happen, and it is going to be very, very soon. Surgical menopause is no longer something in the future, it is happening this very week. Quite frankly, I am feeling a bit depressed and I have been somewhat moody with my husband today. And I warned him that it might get worse before it gets better as my body adjusts significantly reduced hormone levels. I am going to take some estrogen, in the form of a patch, which I hope will make the ride less bumpy.

A few days ago I received a call from the Gilda Radner Hereditary Cancer Detection Program, which I enrolled in four years ago when I discovered that I am BRCA2 positive. They wanted to know if I would be interested in donating some of the tissue removed during the surgery that would otherwise be discarded to research. For me, this was an easy decision, yes! I am a research junkie, constantly looking for new studies with better or newer information to help me make these hard decisions. If my tissue, which would otherwise be "trash" can potentially be of some benefit to future generations of women then I am happy to participate.

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  1. Hey Joi - I just want to remind you that you are perfectly normal in how you are feeling. I was terrified at the thought of 'instant menopause' - something about those words is just so ominous, so haunting! It's been 10 months for me, since my BSO-LAVH, and honestly I rarely think about it anymore. I use a .05 Climara estrogen patch (started at 1 ml though) and it helps a lot. I have occasional hot flashes, but I haven't turned into a crazy, hormonal b*tch, but I worried about that too! I worried about all of it, just like you are now. It's normal to mourn the loss of our ovaries. They gave you two beautiful children. The irony is that the organs in your body that create life, may just take yours if you don't get rid of them, and soon! I just want to wish you the best of luck, and leave you with a poem a friend of mine, Laurie Meekis, wrote for me - I used it on my invitation to my Tampon Burning Party that I had! here ya go:

    Bon Voyage My Monthly Friend

    A glad farewell to PMS woes,

    Snapping tongues, and tears that flow,

    To mood swings on a coaster ride,

    To endless trips to stores to buy,

    Supplies that fill the city dumps,

    No achy breasts or week long grumps,

    I will not worry anymore,

    That sex may bring a visiting stork,

    No more to swell up like a whale,

    Or tearful too dramatic tales,

    Soon gone the urge to punch a face.

    And lose my sweet good tempered grace,

    To never fear a sudden flush

    Then to the bathroom have to rush,

    Oh praise two miracles that you brought,

    Your existence was not there for naught,

    Your cramping bouts were not in vain,

    But I’ll be glad to feel no pain,

    Please fade away and rest in peace,

    So now the flow will be ceased,

    Come join with me in celebration,

    No monthly dance with menstruation.

    I pass the cycle on with pride,

    To those who must be Jekyll and Hyde,

    But for me I smile with glee,

    I’ll wear white pants now, worry free!

    ````` Love ya! Teri

  2. Thanks so much Teri!

    LOVE!!! the poem!


  3. Hey Joi! Awesome blog and so wonderful to share while you're going through your own "stuff".

    Don't forget the simple rules:

    pillows are my friend;
    black cherry jello; and
    "sorry boys -- I had surgery -you'll have to do it."

    I'll be thinking about you. Write when you're ready. I'll stay in touch with Linee too.

  4. Thanks so much.

    1. Pillow is packed for the car ride home
    2. Made the cherry jello today :)
    3. Boys are at camp (yeah) but will use this line on my husband!

  5. Thinking of you tonight, Joi. I got to do my menopause 'naturally,' but I wasn't a heck of a lot older than you. Good decision about the HRT. It's bad enough when it's allegedly 'gradual!' However, because I just couldn't sleep for about 4 years (just kidding -- well, not really), I used to get a lot done at 3 a.m. I got serious about making art, started entering my work into juried art shows, winning awards, even made my own website from scratch! I joined a bunch of art associations, got active on the board of directors of one of them, really got a whole bunch of things done. It was amazing. So, just remember, 'They're not hot flashes, they're power surges!' Oh, and I've saved a TON on heating oil.