Posts Tagged ‘brca gene’

Super hero name: Acronym Girl. This week’s episode: BRCA, MS, ER, UTI, BS

In Uncategorized on December 3, 2012 at 2:13 pm

Since I began this blog over a year ago, I have tried to maintain a certain sense of levity- even positivity.  I have refrained from doing an entry post surgery because I didn’t want to let down readers who feel that a positive attitude is what makes this blog readable amidst all of the other crap that goes wrong.  But I’m almost three weeks post op and the truth is, the tide isn’t turning yet, so I am going to lay out what has happened so that those who are tracking this for medical purposes can proceed, and so that I won’t have to rehash all of this at the point at which I’m feeling more myself.  But mainly, because once I get it down on paper, it doesn’t eat away at me quite so much.

First and foremost, the change out surgery was a success.  The surgery took about 5 1/2 hours and although I was good and sore, it was NOTHING compared to the big surgery last June and I was able to head home the day of the surgery.  I did have an adverse reaction to the pain meds- a new thing for me- but the pain was manageable without them so I simply went without.  While I am not completely satisfied with the final version of my new breasts, this has more to do with aesthetics than with my surgeon’s expertise.  He did a wonderful job creating something from nothing and at their completion they will be as close to the real thing as you can get.  More on why I’m not completely happy about that later.

For some unknowable reason, menopause, which had been lurking around hit full blown a couple of days prior to this surgery and then moved in and took over following it.  I was a mess, crying constantly, pissed off at the entire world and furious that I had to deal with recovery and menopause all at once.  My doctors did get me the hormone patch and started me on low dose blood thinners to handle any clots that could occur.  Then My MS decided to make an appearance.  Since the surgery two and half weeks ago, my MS has been flaring like, well, a mother fucker, and while I thought it was beginning to calm down it made a dramatic curtain call on Saturday night.  After something that I can only describe as lightening effects in my arms and legs, I suddenly felt like I couldn’t walk or speak correctly and that I was likely going to pass out so in a split decision I called 911 and was taken to the hospital.  And here’s the joke.  All of these MS symptoms, which it turns out are quite common by the way, just not common to my MS, were the result of an undetected urinary tract infection most likely caused by the catheter I had during my surgery a couple of weeks ago.

So here I am, in the ER, finally lucid enough to talk to the ER doctors after being taken to one hospital, then transported to UCLA and there is SO FUCKING MUCH information that I lose my patience with them as well.  I cannot understand why they don’t know a single thing about me as my entire medical history is on the UCLA system.  Yes, I know my lesions are in a strange place for MS (ER docs always want to think I was misdiagnosed and they are going to figure it ALL out)- moving on, NO for the 10th time, I did not have cancer, I am BRCA 1 and 2 positive so I had a prophylactic mastectomy and hysterectomy.  No, this flare is NOT from the June surgery, it’s from two weeks ago, the small surgery for the trade out.  There were a team of neurologists, all very nice and very capable, who insisted on repeating a test where I am thrown back on a table and my head is turned to the side.  No matter how many times I repeated that I had surgical incisions covering my chest that are rather fresh, they just kept flinging me back.  I don’t know what it is about ER neurologists, none of my regular team EVER subject me to that and I must have had three doctors put me through it on Saturday night/Sunday morning.

So the upshot- I’m home again, on a major dose of antibiotics to knock out the infection and my MS symptoms are back in the realm of severe vertigo, my MS comfort zone as it were.

I have officially cried ‘uncle’ on everything.  I feel as though I’ve been too cocky with my MS and that I should have been far more conservative in regards to my approach to these surgeries.  I also wish, in retrospect, that I would have consulted more with my neurologist prior to surgery because I think this is what I would have heard.  Reconstruction is an unnecessary step in all of this.  If the goal was to simply change the odds of getting cancer, that could have been achieved with a bilateral mastectomy and complete hysterectomy, end of story.  The complications, including the length of the surgeries, which have wrecked havoc on my already fragile nervous system, were all part of the reconstruction process.

I somehow thought I was going to come through all of this as though none of it had happened at all, and that simply isn’t realistic when you battle an auto immune disease.  Shit, it’s not even realistic if you don’t have any other mitigating factors.  MS gets bitchy when you have a bad cold, or the flu- I knew this going in, and I proceeded this way anyway.  I was also riding high on the fact that my MS had been under control thanks to a clinical trial I was on for two years, but that ended prior to all of this as well, so I was fighting another strike against me right there.

So, if I had to do it all over again, these are the choices I’d make.  I would still have had the prophylactic surgeries, the cancer risk was too high to be ignored.  But I would have forgone reconstruction altogether.  The size of my new breasts was a constant battle with the plastic surgeon and ultimately they are still larger than I wanted- so better to have had nothing at all and to have skipped this MS flare up and a trip to the ER that is probably going to bankrupt me right before the holidays.  Better to have skipped a nightmare episode where I had to deal with some kind of body break down that I was convinced was threatening my life- how much do I wish I would have just ignored it and gone to bed and hoped for the best- but in case the written account hasn’t been clear, the best is often not the outcome.

I thought that I was pissed at my surgeon because he had gone against my request and made my breasts too large and in doing so, had taken away the only choice I had in all of this shit.  But the truth is, the choice was mine to make, at the very beginning, and I have no idea why I opted for what I did.  There was some idea, I think, floating around in everyone’s head that I could go through all of this and then look great at the end and maybe my life would turn around and be better- maybe I’d write a book, or fall in love or simply be high off the fumes of having done something difficult and survived unscathed.  Somehow, it would have all been worth it.  And people keep saying, “wait and see how you feel, you aren’t at the end of this yet.”  My profound response to that is unfortunately, “yeah, whatever.”  A new rack is not now, nor was it ever, the answer to all that ails me.

Tonight I’m missing Jackson Browne play an acoustic show at the Geffen.  Tomorrow night I’m missing Bruce Springsteen which my friend Cara jumped through hoops to score me and Missie tickets to.  I am arguing with my mom about holding on to throwing a Chanukah party because, damn it- I don’t want to miss everything- but the truth is, I am afraid of what’s around the next corner and that’s just not like me at all.  I’ve lived with the unpredictability of MS for eight years, but this is the first time I feel like it has the upper hand, and that is no way to handle a chronic condition.  So consider this my public decree- I’m not going to ignore my MS anymore.  It is the permanent condition among all of these other things that have gone wrong this year and clearly, attention must be paid.  With that said, I still can’t let it run my life, but it needs to have a place at the table in regards to all of my other medical care- it’s as simple as that.  I need to remember that it can drive me to a midnight call to 911 if it so desires.  In one major stroke of luck, this was a Saturday night where my son was with his dad- small favors…

So for those who follow this blog for the BRCA part of it, I’m sorry I’ve veered off into auto-immune disease land, but I suppose the truth is, cancer- and cancer genes- don’t skip over those of us who have other medical matters to manage.  It’s an equal opportunity kind of disease.  The blog was always meant to chronicle the journey and while I thought the journey was going to be much easier then it turned out to be, I’m still glad that other people who have these tough decisions to make will see all sides of the decision making process.  As I said in the very beginning, knowledge is power.  It’s one of the only platitudes that I can still stomach.


New Year’s Resolutions

In Uncategorized on January 1, 2012 at 7:36 pm

I am an optimist by nature.  It follows then that every year prior to this one, when the clock would strike midnight on New Year’s Eve, I would renew my hope, fill my coffers with positivity and bank on the year ahead of me.  The last few years, I have been happy to see the years wrap up- it’s been a rough road, some rougher than others, but I would step into the new day convincing myself that whatever was ahead would surely be better than what I had just left behind.  This year is a bit strange in that regard.  When 2011 began, I didn’t know what a BRCA gene was, my sister hadn’t found her ‘lump’ yet and all July meant to me was that camping in Yosemite was in the cards.  This year, Missie still has half of her chemo to complete and her radiation.  We both have to fight the weight loss battle for the sake of healthy surgeries yet to come, and I have to be essentially taken apart and rebuilt in the beginning of July.  So this New Year’s I felt myself not resolving to improve my life, but rather resolving to get through it- to stay focused on well-being, to make my body as strong as possible between now and July, and to remain cautiously optimistic that all will be well when 2013 rolls around.  I will hence forth refer to 2012 as the year stumbled through gracefully.

A quick overview of my week of doctor visits- which introduced me to the ‘dream team’ of surgeons, and not just because they are all total babes.  I had already met the breast surgeon, Dr. Foster, who referred me to Dr. Tseng, the Plastic Surgeon and Dr. Karam, the gynecologic Surgeon.  The Plastic Surgeon spent a good hour with me, going over my options but ultimately agreeing with Dr. Foster’s assessment of a bilateral mastectomy and flap reconstruction.  As you may recall, this is the surgery for which one needs to be an optimal weight, so I also started that conversation and I have a good 35-65lbs. to lose prior to July.  I’ve done it before, and although I don’t love the idea of not having food to fall back on in a time of stress, I am very keen to have boobies made of my own tissue- so if choosing between food and boobies, I’ll go for the latter.  I know the peanut gallery agrees.

Then onto Dr. Karam, the gynecologic surgeon, who in fact gave me a lot of information- I’d even go so far as to call it good news- in the midst of this steep learning curve.  He is the first doctor with whom I’ve met who has actually had other patients who have both the BRCA1 and the BRCA2 genes.  He explained that this is most likely due to the fact that he practiced medicine in New York City and at Cedars Sinai in Los Angeles which both have much larger Ashkenazi populations.  That accounts for the high number of BRCA patients.  He said that although having both isn’t ideal- that the percentages are not added on to one another.  In other words, if the BRCA1 leaves me at an 87% risk for breast cancer and the BRCA2 leaves me at a 75% chance risk, that doesn’t mean that I have a 162% chance of getting cancer.  (yeah, maybe I had to use a calculator to add those numbers- shut up).  With that said, he cannot say definitely what my chances are but he would put them about 10% higher than average- which still makes it 97% that I’ll develop breast cancer.  BUT, of course, that’s why I’m opting for the surgery.  And here’s where even more good news comes into play.

Because women have historically had difficulties with hernias post hysterectomy, they began performing them laproscopically.  This way, they do not cut through the muscle and weaken the abdomen.  I had assumed, since they were cutting into my abdomen to take out what I think we should now call my “useful paunch”, that they would just go through the abdomen for all of the surgeries.  But, it turns out that during the flap surgery, they just take the mushy part of the tummy- the “useful paunch”- and they don’t cut into the muscle at all.  So although having both the double mastectomy and hysterectomy all at once seems daunting it isn’t nearly as invasive as I had feared.

The surgery does have a 4-6 week recovery time, but that is actually based on the reconstruction of the breasts, it takes time for them to make a nice new home and evolve from the useful paunch into the perky rack.  Yeah, you heard me, PERKY RACK!  At this point I think the only disagreement that Dr. Tseng and I will have will be about cup size- he’s all about proportions and I’m all about not having to wear a bra if I so desire.   I’ve had one on for the last twenty-nine years, enough already.   We agreed to figure that out once I lose some weight.  I’ll meet with him again 8 weeks before the surgery to assess size etc.  One last cool thing on the boobie front.  It turns out that they have to build nipples and that this is actually done in a separate procedure.  There are two follow up surgeries, one for nipple building- you know you wish you got to write that and say it- and one for making final adjustments and tattooing pigment onto the nipple.  And when this came up- I thought JACKPOT!

I have always wanted a tattoo- so of course because I have no shame or scruples I immediately asked Dr. Tseng if I could get something besides the standard pink pigment.  He was completely nonplussed.  Have I mentioned I love this dude.  He said that the choice of what to have in place of my original breasts is a totally personal one and it can look like and be anything I wish.  This is the first scenario in all of this where I actually felt like I was being given a choice and so I have begun considering what this might look like.   Dr. Karam- the genius gynecologic surgeon suggested one-eyed happy faces.  I have something a bit more subtle in mind- more on that later.

So armed with all of this info. and having begun the process of signing consent forms and blocking out July for recovery purposes- I head into 2012 knowing that it’s going to be difficult.  But recently Missie and I were wrapping presents for the kids of some of her employees and she commented on the fact that neither one of us have ever really wanted for anything.  Yes, we’ve had a rough go of it in the health arena, but really, she said, we’re very lucky.  Totally offhanded- and with absolutely no irony, she referred to us as lucky.  And I thought of that again as she and I ran around Las Vegas last week gambling and hanging out with the family.  I thought about it again as we sat last Thursday seeing the touring production of Wicked with our mom and our Cousin Sarah, laughing and crying and abandoning every sense of cynicism to be enveloped in the pure joy of a big, fat musical.  But mostly we are lucky because we are not sitting around waiting to die.  Waiting for the elusive cancer to come and get us and take us away from all of this luck.  I have known healthy people who seem to spend their lives waiting to die- I’d much rather be “healthy challenged” (I don’t care for the word sick) and enjoy the hell out of everything.  So while 2012 may not be easy- based on Missie’s assessment, I’m thinking it may be lucky.

Happy New Year to all.  Wishing you happiness, love, good health and good luck in the coming year.