pairofgenes

Archive for December, 2011|Monthly archive page

Sweating the little stuff…

In Uncategorized on December 18, 2011 at 8:31 pm

In the coming week I’ll see an oncologist, a plastic surgeon, an oncology/gynecological surgeon, two neurologists from my Estriol trial and a partridge in a pear tree…but here’s what’s really bugging me.

My father has always said (you know it’s trouble when I begin a sentence this way, and often profanity is involved, though not in this case) but- he says of me that most times when I get upset about something the plug doesn’t fit the socket.  For those who don’t know the expression, it simply means that oftentimes I will lose my temper or burst into tears because I can’t loosen the top of a jar or the DVR didn’t record HOUSE.  Okay, no Hugh Laurie maybe worth shedding a tear- but you get my point.  Something small and relatively benign suddenly feels like the end of the world, and it always has to do with an event completely unrelated.

Well here’s the thing.  When you have something large and looming in your life- in my sister’s case, breast cancer and chemo, and in mine, the upcoming surgeries and recoveries, there really is only one socket.  The socket that says you are sick and scared and without choice in too many matters to name.  And somehow, that lack of choice is the thing that sticks in my craw.  It’s as though everything boils down to “do this or die”.  Well that choice sucks, frankly.

But not wanting to proceed through my life like Eeyore (shout out to A.A. Milne) I do try to put on my big girl panties and move forward.  I Recognize that there are challenges ahead that are going to kick my ass, but that I have an amazing team of doctors and a support team that rivals my current super-duper under wire bras.  But then there’s that pesky plug and socket.  I can move forward, I can have the strength of Superman- but any number of plugs show up- and it’s waterworks from the man of steel.

A few examples.  Let’s begin with the week that just went slowly into that good night.

For every show done at the theater where I am lucky enough to have worked for the past 13 years, I write an editorial piece for the program to help contextualize the play for our patrons.  For the last month or so I have been working on a retrospective about what it meant to work for my boss who died suddenly on October 31st.  This loss was huge for so many who knew and loved him, and I had hoped to chronicle what it meant to work beside him for so many years.  Many of the staff contributed to the piece- beautiful and funny stories about who he was to them and what he taught us all.  After careful consideration, it was decided that the piece was too personal to be included in the program- that it didn’t serve the play or the patrons coming to see this play and it was pulled from the program.   From a business perspective,  I can see the argument- but, my outrage and sorrow in regards to this choice could have brought the walls of my house crumbling down.  I cried and screamed like a child who had been robbed of my favorite toy.  (thankfully, I was working from home so only my dogs were privy to this outburst)- oh and my friends Shannon and Allison who I knew would understand that this in fact had nothing to do with the article itself, but rather the article’s subject.  Plug- socket…

What occurred to me, in the midst of trying to name why I was so despondent over this choice- I discovered that choice itself was the culprit.  I was not in a position to make the choice about the publication of the article, nor more to the point, did I have a choice over losing my boss.  I am not in a position to make a choice about having surgeries, I cannot choose to not have MS, for my son not to be unhappy that I don’t live with his dad,  for the man I love to love me back…I want more choices- and I simply can’t have them.  At the end of the day, it seems that this is the one big socket that all the mismatched plugs keep finding.

No one chooses for bad things to happen.  I have had so many people I love who hesitate to talk to me about their problems because they feel that my problems are so much larger.  On the contrary- like all of you- I am crying over the article, over the loss of a loved one, over the boy.  I could not possibly cry over my sister’s illness or our unlucky genetic make-up- it’s too big and too scary to warrant tears.  For the large things, we learn to push forward, to remain optimistic, to focus on others.  But, because I am not an automaton- as much as that appeals to me right now- I sweat the small stuff, get anxious over work and weight loss and finances- and then  I press on to the next Dr.’s appointment, and Missie presses on to the next round of chemo.

Maybe some day my worries will be small enough that the plugs and sockets will fit again- in the meantime if I burst into tears when next we meet I can promise you- it’s nothing you’ve said or done, it’s just the genes talking…

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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.