pairofgenes

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.

 

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  1. … Buck up, little camper.

  2. It sucks that you have to go through all of this, and you have every right to feel the way you do. I can only hope that, once you have some time and distance, you will feel better and maybe make peace with your decisions. You’ve got people out there pulling for you!

  3. What to say aside from I love you, and I am here for you. I am glad to here you won’t be ignoring your MS sx–I think your successful trial treatment faked us all out to thinking you had some kind of ‘MS Lite”. I am sorry you have to miss the Boss and JB 😦 I don’t know if any one of us would have any easier time making a decision to have or not to have a rack. I am just throwing out random thoughts here now. Hope to speak to you later, my dear friend.

  4. Oh, and I like the acronyms. 🙂 It’s amazing how much a UTI can fuck up someone’s cognition and balance even when they don’t have MS……….

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