pairofgenes

All this and heaven too?

In Uncategorized on December 8, 2011 at 12:37 pm

There are quite a few things to cover post Thanksgiving and pre Hannukah and Christmas so bear with me if you would.

First, this week began my month of doctor visits- the breast surgeon first, followed by the Gynecologist on the team of doctors on the MS study at the end of the week.  Then next week we have the oncologist who will hopefully be able to connect some of these dots, and connect Missie and me with other people who have been identified as having both BRCA genes.  Then, the week following are the two neurologists on the clinical trial who will help me assess if there  are now additional dangers with the drug I’m currently ingesting (enough estriol to make my body think that I’m pregnant)  seriously, I’m not being funny -MS goes into remission when women are pregnant so they have turned us into ovens with no buns. Added to that, based on my visit to the breast surgeon, is a mammogram and a breast MRI.    The consensus seems to be that if all my exams are currently clear that I can complete the clinical trial which runs another 6 months, and prepare for surgery sometime in July or August because it turns out there’s a lot to prepare for and a 6-8 week recovery time.   So that’s pretty much December.  And how are you?

Meanwhile, Missie has finished her second round of chemo which seems to have been a bit harder this month.  She’s lost her hair, and bought an array of fabulous hats which look spectacular on her array of wigs, but I have found that I already don’t notice the baldness when we are hanging out around the house and she doesn’t bother to cover it.  I do worry about her head getting chilly, but otherwise my mom and I agree that she has the head shape and ears for baldness, so that’s a positive.  But it is hard this month.  Her stress level has skyrocketed as she is consistently disappointed with a lack of support from her longtime partner (both business and personal) who doesn’t know how to set aside the difficult nature of their relationship and just treat her gently while she navigates this shitty set of circumstances.

But there are things that can be managed in the immediate, and things that must be shelved for now.   What Missie and I both need to do is make a list of things in our lives that are detrimental to our health- either physical or emotional.    I have heard people talk about making lists of the things for which one is grateful, and I’m all for that, but right now we need to rid our lives of the negative- crawl before walking- and this is definitely a crawl.  Unfortunately, the worst thing that Missie and I do to ourselves involves food which is my FAVORITE thing on earth.  It is my poison and my elixir, but I have just been given an ultimatum in the food department, get this.

In meeting with the breast surgeon, Dr. Foster, it was apparent from the get-go that surgery was going to be on the table- no pun intended.  She began with the hysterectomy, explaining that because the BRCA1 and 2 are indicators for ovarian cancer, and because ovarian cancer is so difficult to detect early, that this was the first order of business.  We discussed a laproscopic option, which normally would be in the cards, but then we got to the breast part of the appointment.  It’s not nearly as fun as it sounds.  Because of my age and because this is a prophylactic procedure, meaning to prevent cancer from developing, the recommendation for reconstruction is a flap procedure.  They need to work on these names- seriously.  Your breasts are removed, then tissue is taken from your stomach and used to make new breasts.  Because it is your own tissue, this procedure is a permanent solution, often requiring very little follow-up surgery with the exception of nipple replacement.   It’s okay, cringe if you must, the details can be a bit gruesome for those with weaker constitutions–  wimps…

With implants, it is necessary to replace them every 10 years or so- who knew?  And because my MS will react negatively to any surgery- MS flares at anything it perceives as trauma- I don’t want to deal with this every decade.  Further, I like the idea of having something real- something that changes with my body as my body changes.  With the flap surgery though, there is a large opening in the abdomen to gather tissue, hip bone to hip bone, so I asked, as long as it’s open for business, might we combine the hysterectomy and the breast surgery.  Although the recovery might be more severe- I think my MS will prefer one large surgery as opposed to two large surgeries.  So the next stop is the gynecological oncologist who would do the surgery with Dr. Foster and a plastic surgeon.  Three surgeons- that’s a lot of people fussing with my lady parts.

But here’s the hiccup.  The flap surgery cannot be done on someone who is overweight or underweight.  Too overweight and it increases the chance of infection too much, too underweight, and well, you don’t have enough fat cells with which to make nice new boobies.  So I confessed to Dr. Foster that I know I’m rather large at this time, between my sister getting sick, my own heap of medical news and my beloved boss of 13 years dying suddenly, I have basically consumed every morsel of food that has crossed my path.  You might say, “but that doesn’t solve anything!”  Maybe not, but it sure soothed my aching heart and my anxiety ridden mind.  Nothing like xanax with a moose tracks chaser.  If you are unfamiliar with Moose Tracks- go look it up, buy it and consume it.  You’ll see what I mean.  Dr. Foster said that seven months should give me enough time to get to what the plastic surgeon views as the ideal weight for the procedure.  I laughed to myself thinking, a plastic surgeon’s idea of ‘ideal’- that’s pretty fucking scary.  But I am willing to give it a shot- and I am dragging the women in my office through it with me, because I cannot get to an ideal surgery weight without a team of people keeping me off the tracks created by the aforementioned moose.

In addition, my research into breast cancer has stressed again and again that fat cells are very popular with the cancer crowd.  If regular cells are a tunnel through which cancer can travel and end up in other parts of your body, then fat cells are the equivalent of a water slide in which the cancer cells raise their arms and yell WHEEEEEE!!! as they move around your body.  You’d think with all this crappy news that we deserved something like, “it turns out ice cream and chile dogs scare the cancer cells to death.”  Nope- totally screwed in the the fatty arena, too.

Now, the good news.  This procedure comes with a free tummy tuck!  No extra charge!  The irony is not lost on me that I have always been someone who said that I would never have plastic surgery and now I’m going to end up like a Mrs. potato head with one part being moved to another, to another, maybe I’ll just ask them to use my nose in place of one of my nipples.  OH COME ON AMY, that’s just gross.  Sorry.  Wimps.

So, that’s what’s what for now.  The last thing.  I did ask this world renowned breast surgeon if she has ever had a patient with both BRCA1 and BRCA2- she hasn’t.  She doesn’t even know how to calculate the increased risk of the five BRCA identified cancers in percentages.  Also, she has never done this procedure on a patient with MS.  So I implore you all again, get this blog out to anyone who might know someone with both genetic mutations- Missie and I would love some data that isn’t ours, and clearly based on my extensive talk of nipples, we ‘ll have no problem sharing our info.

Merry Christmas- if that’s your thing

Happy Chanukkah- if that’s your thing

And much love, happiness and good health in the coming year.

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  1. I laughed way more than I cried when I read this one. I really wish you guys didn’t have to deal with this, but it sounds like you have some good people to work with. Love love love you all!

  2. Amy,
    I don’t know what kind of exercise regimen you currently have or are planning to implement (morning yoga with the staff here?) but if you want to do weekly walks during lunch or end of day, I would love to join you. Even if it’s tackling the Hilgard hill at lunch a few times a week. You’re a proven great walker and Andy has inspired me to continue my walking work-outs to gear up for an early spring 2nd half marathon. Let me know if you’re at all interested.
    xoxo Karen

    PS. You rock.

    • Yes, Karen- absolutely. Shannon and Allison are making walking dates with me too so if I can keep up the yoga and walk 3 days a week that would be a huge help. Thanks for the support and love!

  3. “…Three surgeons- that’s a lot of people fussing with my lady parts.” really? I’ve never heard you complain about it before.
    I’ll be here all week.

    i heart you levinson.
    c

    • This made me laugh out loud- I heart you too, Craigy. Come over and see the dogs, oh and Santiago, oh, and me. Maybe you and Jade can come for dinner one night?
      xoxo

  4. Grrrrl,

    I just sat up after having to put my head between my legs (not in the fun way), and have smelling salts waved in front of my face (always fun) being that I am one of the wimps. Seriously–I can’t see my kid wiggle his tooth without getting dizzy. So much for your bod to go through.

    I am happy to hear that you seem to be getting the comprehensive care that you need on all of this. Not that I know what it is like to live with MS, but it sounds like a good call to have the surgeries all in one fell swoop. And I love the idea that you can use your own fat to make your new perky boobies. It’s a new way to love all of you! It seems like it would be enough time for you to lose some weight so that might be an option. I am familiar with the Moose Tracks. And although I will never betray my true love, NY Super Fudge Chunk, I do have to admit Moose Tracks comes in a sweet second. In lieu of that kale and quinoa is a different kind of fabulous! I have been doing eliptical lately–have you ever tried that thing? It’s pretty good cause you can watch Anderson Cooper and read important publications like In Touch to keep up with who is schtupping Cameron Diaz (slut).

    I also think that you and Missie taking the inventory of all the stressful/emotionally draining parts of your lives is great self-care if not super difficult taking honest self-reflection. I am sorry to hear that Missie is struggling right now–please send her my best. Do you remember that blue wig I had in North Hampton? She would look so good in that.

    BTW, get ready for a visit from this bitch post surgery.

    Love, Rachie

  5. Rachie! I didn’t expect you to be one of the weak stomached ones- but I confess, the wiggly tooth gets me too- what is that?

    And you and Aimee post surgery- I’m very concerned about the excess of laughter with an incision the size of a cadillac, but oh well! I’d rather have laughter 🙂 I love ya.
    TL

  6. You make me laugh, you make me cry…We are women hear us roar…we will get through this on top!!! I love you…

  7. Amy: Your blog is wonderful! I’ve been keeping up to date on you and Missy through your mom! You are talented, funny and courageous and I will be passing on the blog info to my patients! Love to both of you! Diane Lipson,Ph.D.

    • Thank you Diane,
      I hope it proves to be of interest to your patients- I figure the more people we reach, the more information gathering we can do.
      Love,
      Amy

  8. “Nothing like xanax with a moose tracks chaser”

    On many occasions, Ive done moose tracks with vicodin… wondering which is better… Regarding Chili Dogs, check Tommy’s on Roscoe or Beverly and Rampart. Im sure they will say differently!

    I love you!

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