Archive for May, 2012|Monthly archive page

My family anthem…

In Uncategorized on May 27, 2012 at 9:26 pm

While I recognize that it’s a stroke of bad luck that my sister, my dad and I have BRCA1 and BRCA2 genes, I had a revelation last night as I watched my entire crazy family rock out on the dance floor.  My niece had her Bat Mitzvah this weekend and it has been an absolute blast.  Her self-possessed presence at a mere 13 as she read from the Torah filled us all with such pride that I thought we’d collectively burst.  The party that followed was amazing, and there we all were, dancing our hearts out and savoring every single moment that was being handed to us.

My sister, now through her chemotherapy and radiation, was in full force, enjoying her family, having photos taken at the dress up photo booth- to look at her you would never guess that she has severe burns at the site of her radiation.  My cousin, who had lung cancer, a lung removed, and has been taking a chemo pill that has been effective for the last few years was shaking her booty to the beat.  And my mom, who has had to grit her teeth and watch her kids suffer through the year was at the center of it all, dancing with a spirit of joy that made all of those left sitting in our seats jump up and join her.  As my brother aptly put it, “sometimes having a crazy family is a handful, but nobody is better at a party.”  Amen.

And then it hit me.  This batch of genetic mishagoss with which I have been saddled is unfortunate but if wishing it away meant losing this group of loonies from whence I came- there is no way in hell I’d make that trade.  I would rather be someone faced with these challenges who can laugh, dance and dress up in funny outfits in the face of what’s coming down the pike then someone without a trouble in the world, and no ability to appreciate the ease of things.

Some might ask, “what if you could keep the family and dispel with the genes?”- well that’s a dumb-ass question!  Of course I’d get the genes taken away from me and my sis and my pop- but today I’m okay with where it all lies.  My sister is done with her treatment, my dad is in the midst of chemo but with no side effects and he looks like a million bucks, and I have a team of people cheering me on from the sidelines to such an extent that I never feel alone, I never want for love, in fact I never want for much at all.

So in the same way I revel at times in the fear of what’s to come, tonight I am reveling in the joy of what it is to be part of the Levinson/Asher clan of genetic misfits.

Bring on your wrecking ball…

Life is just a bowl of cherries- assuming that cherries suck.

In Uncategorized on May 15, 2012 at 11:27 am

So, I am going to try and make this update succinct and simply stick to the facts because my level of fragility is rather high at present and as self-pity is something I prefer to make a party of one, I shall keep the chit chat light and to the point.

I had my pre-op visit today with my breast surgeon and my plastic surgeon.  It was agreed upon that I am too overweight at this point to proceed with the flap reconstruction so I will have to opt for breast implants should I want immediate reconstruction.  My plastic surgeon suggests a C cup so that I am proportional, meaning that my boobs still exceed my belly in terms of how far each sticks out.  My choices were to put off the surgery until I lose weight, the downside of that being a game of roulette with the arrival of my cancer because as they see it, it’s a matter of when, not if, and I’m not really one for gambling with those odds.  So that leaves me with the falsies- which for most people is a perfectly fine option, but frankly, I have an immune system that is so inept it attacks it’s own perfectly healthy cells.  While there is no indication that my MS will reject implants, I have always feared that my immune system will go on the defensive with something it identifies as foreign.  Also, and certainly less significant but still a factor- I am a mess of a person in many ways but I have always prided myself on my authenticity- fake boobs do not fit this perception I have of myself.  With that said- I could opt for no reconstruction, the surgeons have left that option open for me- so that is still something to consider.  Fuck, I don’t know what to do- all I know is I wanted the flap reconstruction, it addressed all of my concerns, and I have no one to blame but myself for the fact that I am too overweight to proceed as planned.

More good news, one of my surgeons is also concerned at the prospect of my going back on Estriol as a hormone replacement therapy after my hysterectomy.  Estriol, for those who haven’t taken notes, is the trial drug that I have been on for the last two years.  MS goes into remission for women when they are pregnant so the study has had women ingest pregnancy doses of Estriol to mirror pregnancy.   Since the start of this trial, my health has improved exponentially.  Now there are concerns that taking hormones can increase my risk of developing breast cancer.  And you might ask, but aren’t your boobs taking leave of your body?  Well yes they are, thanks for asking.  But there is no way to remove all of the breast tissue, they can only decrease the chances by 90-95%, and with BRCA1 and BRCA2 they will want to be vigilant about not adding anything that could exacerbate cancer growth.  It is possible that estriol could do just that.  My wonderful breast surgeon said I will have to have a heart to heart with the lead oncologist at UCLA and assess risk vs. benefit.  I’d like them to assess if it might not be easier to just take me out back and shoot me.  Oops- is that self-pity I see before me??

So, here are the upsides of implants vs. flap reconstruction.  The surgery is about 1/2 the length- 6 hours as opposed to 12.  My hospital stay will be 3 nights as opposed to six.  I will not have an abdominal incision, therefore I’ll only have 4 drains instead of 6- can I get a woo woo!  The recovery is easier- but as I said, upkeep is required and each subsequent surgery is an opportunity for my MS to attack and possibly progress.  And I’m pissed.

But mostly, here’s why I’m pissed.  Losing weight for this damn surgery was the one thing in this whole mess that I actually had in my control.  Instead of embracing that control, I tried new diets that sent my body into some type of shock and shut down my metabolism, and I fed my unexpressed anxiety to keep it nice and contained.  And so, I have lost control of this too, and I will have to proceed in a way that is not at all in line with my larger plan.

My mother is relieved with the new course.  She was concerned that my MS was going to reject the new tissue from the FLAP procedure so she is pleased with this turn of events, and I can see why.  But this whole thing, the research, the surgery, the genetic testing, this is all about the long haul, and I don’t like the idea of a haul that requires a boob tune-up every 10 years.  But I suppose it beats cancer.

So I am focusing on the immediate.  Lowering my cancer risks, keeping my MS in check and living a long enough life to see my son do all of the things my folks got to see me do- minus the illnesses.  The weight, well I’ll just have to keep that on the list of battles I have ahead of me.  Everything I’m doing is to achieve one goal, to hang around for an eight year old who couldn’t care less if my boobs are fake.