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How One’s Life is Defined

In Uncategorized on December 17, 2012 at 10:00 pm

My troubles, bad genetics, difficult recoveries, even difficult diagnoses, these are all things that will pass.  While I am inside of a difficult year in regards to my health, this is not a permanent condition and I am not defined by these difficulties unless I choose to be.  But I have a choice.  The events of this past week have been a glaring reminder that what has befallen me does not even near the category of tragedy.  My troubles are temporary, and at most they are difficult inconveniences.

An entire town of people will forever be defined by the masacre that was visited upon their children.  And in this, they had no choice.  There will never be a day where the loss and emptiness of their missing children will not ring in their ears and tear at the very seams that hold human beings together.  They are broken, and no amount of national grief, gun control laws or heightened security can change this.  They are defined by their loss, by tragedy.

I am not suggesting that from this point forward that all of our troubles should be compared to the most horrific event in recent history.  I have already complained about mundane matters over the weekend.  But for my own part, I am reminded that difficult things are not tragic things.  Tragedy moves in and takes over whomever it touches.  Were I to die from these bad genetics, my life would not be defined by that death- it would simply be a sad end to a happy story.  Tragedy is a story cut short, a group of children who, as my eight year old son pointed out, were too small to defend themselves.  And I don’t seek out meaning in these events- I don’t believe that everything happens for a reason or that God needed angels- tragedy has no meaning, and even if it did, who really cares as they bury six year olds.

I am grateful for health care, for doctors and nurses who have seen to my care, for my mother who stayed with me after surgery, for my sister and my father who share my genetic anomalies and have fought their own ‘difficult inconveniences’ as a result.  I am grateful that my life is not defined by tragic events and wish with my whole heart that I could carry an ounce of the burden that those bereaved parents must feel tonight.  But mostly I am grateful that my son is sleeping soundly down the hall.  May my life always be enriched by his presence and never defined by his absence.

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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.

 

T Minus one day

In Uncategorized on November 13, 2012 at 10:16 pm

So the trade out surgery is happening on Thursday and I am grateful and relieved.  After much debate there were a number of issues settled as we approached the trade out of the expanders for the ‘permanent’ implants.  I use quotes on permanent because truly, there’s no such thing, implants have to be traded out every 10-15 years.  But that’s ages away, hopefully by then I’ll be living in a small village in England or Iceland or Alaska, happily putting my son through college or graduate school and not really giving a rat’s ass if my fake boobs are perky or not.  And who am I kidding, they’ll always be perky.

But these were the issues under debate:

1) Silicone or Saline.  Silicone is preferred by my surgeons.  They are more durable in terms of how long they last and they have a more natural look and feel.  But my neurology team had concerns, quite valid ones, as to whether silicone might trigger my MS should a leak occur.  After much consideration, we were at a stalemate.  With no conclusive evidence that one poses any more risk than another, my GP broke the tie and we are going with the silicone.

2) I was not as forceful as I needed to be with my surgeon about my breast size.  I know I joke endlessly about it, but the truth is I have had DD breasts for 20 years and I don’t want large breasts anymore.  My plastic surgeon, with concerns about proportion, was determined to maintain the size but god help me, I really hope I’m not overweight for the rest of my life and then what happens, I lose weight and still have giant breasts.  No, thank you.  So I wrote him a note saying that I have really been turning this over and over in my head and that I want C cups.  So, as of Thursday I will have silicone C’s if all goes as planned.

3) As you may recall, my doctors had made the decree that hormones were off the table in terms of dealing with menopause which came on fast and furious post surgery.  There were a myriad of concerns about hormone replacement, the worst risk being an increase in blood clots that I had developed after my last surgery.  But those concerns paled in comparison to the weeping mess my gynecologic surgeon was faced with last week.  I, who run a notoriously low blood pressure, was running at 191//119 and when the nurse asked me to close my eyes and imagine the ocean, all I could see was me drowning in waves that wouldn’t stop crashing toward me.  I reminded my doctor, I am one who swims, not one who drowns.  So he reversed the hormone decision, said I was in the throes of a seismic hormonal shift, and that clots be damned, he is giving me a low dose hormone replacement therapy as soon as I am finished with the next round of recovery.   It will mean I will have to also stay on a blood thinner for as long as I take the hormone, a trade off with which I can live.

4)  My MS, lest it be completely ignored, has reacted to medication shifts, menopause, metal and plastic body parts and high blood pressure with relative calm, with these few exceptions.  Nerve pain in my arms, fatigue and vertigo that may or may not have contributed to me falling last week, hitting my head on the sidewalk and getting a concussion.  If my health wasn’t already a comedy of errors, this thrust it into that category without any question.  The two best quotes from my doctor.  “Amy, it’s a good thing there’s bad luck or you’d have no luck at all.”  and, “I might just have to make you wear a helmet.”  For the record, at the end of my visit with him, my blood pressure was back to a normal 115/80.  Most likely because I laughed uproariously at my misfortune and thanked the universe for giving me such great doctors.

So hopefully Thursday will bring an end to the hardest parts of this journey.  There will be two small follow up procedures which should be complete by June.  If you think of it, throw a thought into the ether for my old friend Jeff who is having surgery tomorrow, and another for me on Thursday.  Hopefully we will all be at our Thanksgiving tables next week with scads to be thankful for.

 

 

Hell yes to saline!!

In Uncategorized on October 30, 2012 at 3:50 pm

This is a lesson in talking to your doctors.  And talking, and talking…

After my last post in which I described my disappointment at being unable to proceed with the removal of the expanders for another three months, I decided to follow up with my general practitioner and express my frustration.  It turns out, he had forgotten that I still had the expanders in.  Now before you respond with horror at this oversight, cut him some slack.  I am a walking medical chart with so many problems there is no way he could track each one at all times and still manage other patients.   He asked me to come to talk about options and promptly referred me to a vascular surgeon to see what might be done to resolve the remaining blood clot.

I saw the vascular surgeon today and he said that the chances of the clot clearing the next three months are slim but as we know the cause (the theory is the IV from the initial surgery caused the clotting) and the location of the clot (in my mid-arm) is not all that dangerous, that I can go ahead and have the surgery as planned on the 15th of November.

Now, it may seem strange to jump up and down over getting to have surgery- but just to recap, this means the hard metal and plastic expanders that have been serving as my breasts for the last four months are coming out and being replaced by some soft, let’s call it breast-adjacent- substance.  So in my near future I can look forward to sleeping on my stomach, not being frisked at airport security, not wincing every time I have to reach behind me, and most of all, not having to anticipate another big surgery.  The two biggies will be behind me, and maybe I’ll be able to move forward in a way I haven’t been able to yet.  Maybe I will be able to really focus on the future and not think of it as something at which I am simply trying to arrive.

I think that we all have a tendency to put our lives on hold when we are staring down major medical obstacles.  How often have I heard, “”just get through this first and then you can deal with x y & z.”   But I recently realized that I have been treating my entire life as though I am…done.  The book has been written and sealed and that’s the end of it.  As though my future was simply something to be held steady.  Fuck that.  Having made it through , the last thing I want is anything to be held steady.  As Missie keeps reminding me- “as long as we’re going to live we may as well…”

So send suggestions.  I have a big wish list but the world is a huge place and I guarantee there are things I have never even thought of that I know I’d love to do.  In the meantime, I am going to try to stay calm, to do what my doctors say, to remember that menopause is temporary and most of all, to make plans, toss them aside if need be, and make some more plans…

Update Shmupdate

In Uncategorized on October 15, 2012 at 9:40 pm

So I have been waiting to write a post until I felt better as I hate to go all negative Nellie when I write, but shit just keeps hitting the fan.  So I’ll do a brief update now and hope that when next I write things are a bit sunnier.

To begin, menopause is really beating me up at the moment.  Today I described it to my doctor as feeling like my mood is the equivalent of nails down a black board.  I do everything I can think of to combat it.  If I am restless at home, I go out.  If my concentration is for shit, I change my method of working.  If I am eager to punch someone in the face, I make a point to find someone I really detest and then I just go ahead and do it- for Christ sake, I have to blow off steam somehow.  I asked if there was ANYTHING that can be done to stabilize what feels like constant, full blown PMS and my doctor said we might try Wellbutrin, an anti-depressant that can be used in conjunction with Cymbalta, the other anti-depressant I take for MS nerve pain, but I remembered that my neurologist told me that Wellbutrin wasn’t allowed for MS patients as it has possible seizure side effects.  So- back to the drawing board, or the black board as it were.

And it’s not enough to be a depressed, painfully impatient hag with metal and plastic boobs without nipples- you know, reminiscent of barbie’s boobs.  To add insult to injury, life has to continue to go on.  And this state doesn’t allow me to take things in stride.  This week forced me to contend with the sudden viral death of my son’s new kitten, the imminent feeling of powerlessness that comes with the exit of people I love, and news that my blood clots are not clearing up.  So what does this mean in the grand scheme of the BRCA battle.

Until the clots clear I cannot go off of the blood thinners, which were supposed to be complete on the 20th of this month leaving me cleared for surgery on November 15th.  Due to this recent development, I will not be able to have the expanders removed until February, assuming the clots decide to clear after 6 months.  Which means that my reconstruction will now not be complete until September of 2013.  It will be more than a year of treatments, surgeries, blood thinners, and menopause with no hormone replacement therapy and let me tell you- I am not Miss Mary fucking sunshine about these developments.

But what can I do.  A friend suggested primrose oil for my menopausal symptoms- I’ll ask the team if that’s an okay alternative therapy and pray it calms my nerves a bit.  I’ll look into acupuncture and acupressure for treatment of blood clots.  I’ll continue to work, to write, to take care of my son as he mourns the death of his sweet little cat, and I will probably get him a new one before the year is out, after he has had a chance to process this in his 8 year old manner.

I’ll also take painkillers when the expanders hurt- because I’ve lifted too much, walked too much, travelled too much or done anything else that normal people do everyday.  And I’ll wait, impatiently most likely, but I’ll wait to have these pieces of metal and plastic changed out for something that resembles real breasts.

When I started on this journey, I had no idea how hard and long it was going to be.  I know it’s a means to an end- I see the bigger picture and all of that crap that I have been saying to keep myself afloat since this all began, but right now I’d just like to lie on my stomach- or even my side- and not be deterred by the pain inherent in having robot parts instead of body parts.

I know this isn’t the end of the world,  I get that.  I have still reduced my cancer risk from 97% to 4% at least where breast cancer is concerned, but I have begun to wonder at what point things might ease up a bit.  I could use some joy, some pain free days, some relief from worry and someone to tell me it’s all going to be okay and for me to actually believe them.

I feel like a living version of “you couldn’t make this shit up if you tried.”  That isn’t the slogan I’m going for, so I guess I’ll just have to keep moving until the reality of my life and the hope I have for it meet somewhere in the middle.

I found her- the upbeat woman I mentioned…

In Uncategorized on September 5, 2012 at 12:39 am

It turns out she was at work.  Once I got there, and rejoined the land of the living, much of my navel gazing pessimism wore off and was replaced by true gratitude to have a job I love and that gives me a sense of purpose.  On two occasions during my first week back in the office, my colleagues asked me if i was taking large doses of painkillers as I seemed to have a euphoric expression much of the time.  No, the percocet is at a minimum at this point, I was just that happy to be back at my desk, beginning rehearsals on a new play, and finally accepting the fact that the worst of this is behind me.  The next few surgeries are far less invasive and by May I should be all put back together.  I have assurances from all the kings horses and all the kings men.

It turns out that with these hormonal surges due to menopause, the worst thing for me was having too much time on my hands.  I began a downward spiral of focusing on what I didn’t have.  With my return to work, I am far more inclined to focus on what I do have.  I have a colleague who was recently laid off from the theater and it has been brutal for her and for many of us who love and respect her as a co-worker.  She too has had numerous health problems over the past few years and I worry that without the theater on which to focus, she will slide into the place in which I had found myself- questioning everything and cursing the missing pieces of my life.  While I believe that there is something better out there for her, that another theater or not for profit will snatch her up for her expertise in her field, I think of her every day and how difficult it must be to keep calm and carry on without the job upon which she depended for so many years.  This is so sharply in focus for me as I move as quickly as possible from task to task at the office in order to try and get through the very long list of things I need to accomplish before 6:00 everyday.  I have two great loves in my life- my son and my career and they have lead me back to my optimism even as I combat the raging hormonal hag within me who wants me sobbing over a thousand piece puzzle and questioning what the future holds in terms of my health, in terms of my ability to move beyond what is unattainable, and mostly in terms of losing more than I have gained in the past few years.

But the optimist- who will not be denied her say, rises from the ashes and reminds me that the future isn’t set in stone.  I am doing everything I can to live a long and healthy life and I am hopefully going to have many people continuing on this journey as I move through it.  Tonight I had dinner with my sister and my cousin to celebrate that my cousin, with whom I share my BRCA grandparents, is negative for both genes.  In addition we celebrated my sister’s remission and my having gotten though the worst of the procedures to protect my future.  We are celebrating having moments that most people take for granted everyday.  An opportunity to live without fear of what’s next on the cancer front.  Instead, we chatted about work and future vacations and sex, just like normal people with normal problems that don’t involve genetic anomalies.

This is the woman I know- the one who can laugh at misfortune while taking steps to change the path.  And this path can lead me anywhere as long as I continue to turn on the ghost light on stage instead of cursing the darkness.

 

Where is that upbeat woman? I know I left her here somewhere…

In Uncategorized on August 18, 2012 at 7:57 pm

So, it turns out menopause blows, just in case anyone wasn’t completely clear on that fact.  So if this post seems shaded by an unusual amount of cynicism, keep in mind that my hormones could compete in the trampoline jumping event at the olympics.  And really?  Trampoline jumping as an olympic event- please…

But the updates are all good.  I am just shy of eight weeks post surgery, seven weeks post blood clot, and  while I am not up to normal speed, I can do most of my daily stuff on my own and I can manage the remaining pain and fatigue.  The pain, surprisingly, is still primarily from the breast expanders which will not be removed until the end of November, when I am safely off of blood thinners and can undergo surgery again.  That should be outpatient, a procedure of simply having the expanders replaced by something soft and malleable- words that have never sounded so good as they do at this moment.  The expanders have made it impossible to sleep comfortably on my side and because of the blood thinners my breasts, or whatever we want to call these funny nipple-less mounds currently, are bruised as hell.  With that said, I can tell that the expanders are settling into a good shape and I am pleased with how my would-be breasts look under clothes so that’s a plus.

Downstairs, I am completely healed.  My gynecologic surgeon was thrilled to sign off on resuming all normal activity which I said was a relief because there is a line forming around the block of men who want to have sex with me.  Nothing hotter than a woman who is in too much pain to have her breasts even looked at sideways and who might burst into tears if you confuse there and they’re.  Well really people- it’s basic grammar.

There have been some developments with the other members of team BRCA.  My sister had a scare this week when her surgeon felt something abnormal at her tumor site but an ultrasound confirmed that it is only fluid that wasn’t reabsorbed.  Yes again, I realized I had held my breath for five days waiting to hear this news- and when I finally started breathing again I could feel the anxiety that had built up over the week.  My dad- who as you recall had one ureter and kidney removed due to a tumor has been having difficulty as his remaining kidney does not seem to be functioning at the level it should be.  He will undergo outpatient surgery next week in an attempt to solve this problem with a stent.  Hopefully that will be the end of the kidney chapter but it’s yet another surgery my dad has to go through.  At this point we’ve started treating outpatient procedures as though we’re picking up at a drive through, but the truth is, surgery is surgery and it’s always anxiety provoking.

And I return to work on Monday- which is both a blessing and a curse.  I love my job, my co-workers and that I’m returning right as the theater season begins.  I am thrilled that I’ll have a place to go everyday, return to a sense of purpose and not be so focused on the ins, outs, ups and downs of recovery so that’s all a definite plus.  The downside is, I’m still managing some pain, I tire out very easily and menopause really is kicking my ass right now.  Because of the blood clot I will forever be unable to take any hormones so I just need to tough this out and push through.  I’ve been told that when it comes on fast and hard from a hysterectomy, as opposed to going through it naturally, that it normally doesn’t last as long and that’s a relief because I cannot afford to be without my optimistic disposition right now.  In my normal state I could tell myself the pain is temporary, the discomfort will pass by November and all will be well by May, which will be here in a blink of an eye.  But right now I feel so bogged down by the loss of so much in such a short time.  I find that I am constantly worrying about things that haven’t troubled me for years.  I have been lonely, something that truly never happens.  I normally revel in time to myself because it is so rare in the life that I lead.  But the emotional side of these losses- they seem to have hit me like a tidal wave and while I can intellectually tell myself it’s purely a hormonal reaction, I am in a state of panic that this is the new me.  That the person who laughed through the terror of having a double mastectomy and hysterectomy and how that might affect my Multiple sclerosis is in fact truly fractured somehow now.   I was in Ikea with my mom this week, I was weak, sweating, and wanted nothing more than to escape the big blue building and simply forget all of the things we had already decided to purchase.  She made me push through it, I’m glad that I did, but jesus, a trip to Ikea shouldn’t be this traumatic.  Fucking hormones…

There have been many side effects to these surgeries.  Pain, fatigue, a loss of appetite that verges on a repulsion from food and an inability to keep calm and carry on.  But there are a few things that have suggested a light at the end of this tunnel.  As I was telling my doctor about my hormones being out of control and weeping for hours on end, I was smiling and laughing which he pointed out to me.  He assured me that at the end of this process, I’ll feel great and I’ll have far less to worry about in terms of cancer in my future.  The truth is, I prepared myself to lose my breasts, my ovaries, and all of the various accoutrements.  What I didn’t account for was the loss of my positive outlook, and that is simply something I cannot be without- not with the cards I have stacked against me.  So I’m trying- I’m reading a book that my girls recommended called “When Things Fall Apart”.  Thus far it has basically told me that to feel like hell is normal and it’s far better to deal with it in the moment.  The moment passes as does the feeling.  I’m also reading a far more escapist book called The Weird Sisters which I’m loving so I can get lost in that in my darker moments.

I have had the most intense outpouring of support in the last two weeks.  Apart from my mom getting me through Ikea with hopes of an organized office, a friend who I’ve not seen in almost 20 years skyped with me and showered me with such love for which I was so grateful.   My ex-husband dropped the myriad of things we needed to discuss and listened to me sob with no idea what had prompted the sobbing.  Another friend held my hand while I was sleeping- just because.

And my normal self- she knows better than to wallow- it’s just this bitchy hormonal hag who has moved in that tries to convince me otherwise.  So I’ll go back to work, I’ll push through whatever comes next and hope that I don’t spontaneously weep during the workday or in front of my son.  Right now, accomplishing those small feats would feel like winning the gold- in trampoline jumping.

And on a humorous side note…

In Uncategorized on July 26, 2012 at 10:56 pm

A while back I bit the bullet and decided to try online dating.  For the most part, it was a mixed experience.  Some true douche bags, but also some really nice guys with whom I failed to find a love connection but in some cases, added them to my circle of friends.  For whatever reason, maybe because I had 700 other things on my mind I forgot to cancel my account before going into surgery and suddenly, post surgery I start getting all of these messages.  I don’t know if people with similar interests joined or if the stars were aligned differently, but here I am in recovery mode trying to figure out how to answer these people who sound like perfectly nice men.  Some with terrible grammar, which is one of my deal breakers, but nice none the less.  Now, I should add that I think if someone reaches out online, it’s only polite to respond by expressing interest in starting a dialogue or by saying you seem like a nice guy, but really not what I’m looking for right now.  Sadly, my responses are frighteningly similar to what I say to playwrights when I reject their plays- but moving on.

But my sick, post surgery brain wanted so badly to respond as such:

Thanks for getting in touch, but there are a few things you ought to know before we proceed.  I recently got a double mastectomy and a full hysterectomy due to a genetic predisposition to cancer.  Right now, while my boobs are very perky, they are filled with what I can only describe as metal plates so I could conceivably do damage while making out with you.  Also, I nap twice a day and I can’t remember a single thing due to percocet and valium so if I sleep through said make out session and then completely forget your name please don’t take it personally.  Oh, and in case the full hysterectomy didn’t clue you in, I’m in menopause at 40 so my mood can swing like Tarzan on a fucking vine.

Now, needless to say, I didn’t post this response to these poor defenseless chaps who like the rest of us, are just looking for a nice person with whom we can spend some quality time.  But, I couldn’t get the thought out of my sick little twisted brain so I thought I’d share it with all of you- and for those of you who have been through this surgery- you most of all- I know you know of what I speak.  Maybe six months from now when my surgeries are completed- I actually have nipples again and the worst of my post-surgical angst has gone I’ll be able to face one of those sites again- but it ain’t likely.  This experience has changed far more than just my physical self, it has changed who I am.  Having made a hard choice to change in order to prolong my life, it’s only worth it if I make that life better and that will mean opening up to possibilities that I have been too afraid to even consider up until now.  I’m not knocking online dating- I know plenty of people who have met and fallen in love that way.  But you have to know what you want when you enter into that fray, and it will be some time before I reach that level of clarity.  Until then, I’ll be swinging from the vines if you need me…

If there are typos- blame the percocet…

In Uncategorized on July 20, 2012 at 3:44 pm

So first, thank you to all of you who sent me such loving words of encouragement and light as I went into surgery.  Both my family and I were overwhelmed by love, support and positivity making a daunting day a bit less so.  The night before my surgery as some real fear set in, my facebook page was covered in the quote that is to be my post surgical tattoo:

Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

that’s how the light gets in

So thank you Kristina Leach, because I know a literary idea when I see one 🙂

On the morning of the surgery, June 26th, my mom and step dad picked me up at 4:00am to have me in pre-op by 5:00.  While I thought it would be a lot of hurry up and wait, it was in fact a very busy morning with all three surgeons crossing their t’s and dotting their i’s.  I knew that most of my family wasn’t arriving at the hospital until after I had gone in for surgery, but my mom, my dad and my step dad were all there very early on.  Then, much to my surprise, my older brother showed up having decided to stop in before heading to work to which I announced, “oh shit, this must be really serious.”  Now, it’s not that my brother doesn’t show up, he’s just not one of the family members who really does hospitals, so I was both nervous and very touched that he was there to see me off.

The surgeons had anticipated an 8 hour procedure.  The sequence of events was for Dr. Foster (the oncologic breast surgeon) to remove my breasts, Dr. Tseng (the plastic surgeon aka the boob wizard as he shall hence forth be known) to do the first stage of reconstruction with breast expanders, and then Dr. Karam (the gynecologic oncologist and most gorgeous surgeon on earth) to finish off with the laparoscopic hysterectomy complete with ovaries, uterus, tubes and cervix.  Pretty cut and dry…okay, not really.

While each part of the surgery went as planned, the breast reconstruction was a far more intensive process than anticipated and the surgery took 13 1/2 hours to complete.  Now, whenever I consider this number, it is not the sore throat I suffered for weeks after based on the tube down my throat, nor the contortionist positions they had to put me into to execute part of these processes.  It is, in fact, my mother and sister waiting for word, waiting for completion, waiting for some sign that all would be well.  They diligently called our loved ones to deliver updates and while I slept through the trauma being exerted on my body, my family and friends had to sit, wide awake, awaiting word of my arrival in the recovery room.  This, when thought about too much, breaks my heart.  But here’s the good news- make it into the recovery room I did and man, was I a mess- but a mess who had come through the 13 hour procedure with flying colors.

For the first two days post-op I remember almost nothing.  My mom tells me I was basically comatose and she was concerned that I was being over medicated but the truth was, the doctors wanted my body to have time to recover from the 13 hour marathon I had just run- as they put it.  I do know that every morning when I woke up my dad was there having stopped by on his way to work to check in on me and had to help me eat apple sauce and drink juice as my arms were totally useless at that point.  Also, my multiple sclerosis was in full swing causing massive vertigo so moving wasn’t really on the agenda.

Now, I had witnessed every step of my sister’s double mastectomy so I expected certain things to be similar.  She found, although she had typical post pain surgery especially where lymph nodes had been biopsied, she didn’t really have pain from incisions or in the chest area.  Expanders are a whole other ball of wax- or rather a ball of something akin to a roman breast plate.  Because the expanders are placed beneath the muscles in the chest, the muscles are then stretched to grow accustomed to that new shape.  Normally, as explained in a previous post, the expanders are only filled partially, but in this case there was enough skin (read fat) and muscle to fill the expanders to capacity.  The great part of this is that it means far fewer post op visits to the plastic surgeon.  The tough part was, there was quite a bit of muscle expansion going on and it has made for a pretty significant amount of pain.  But percocet and valium have aided in that problem, at least to some extent.  On the other hand, my hysterectomy has caused me almost no pain at all, I walk a little more carefully, but the tiny scars are almost unnoticeable and the surgeon is very pleased with my progress.  I did start having hot flashes, which for some reason I find sort of funny, but basically I get hot and sweaty, I strip down, I cool off, I redress.  In the realm of what I’ve been through this month, they aren’t that big a bother.

I did have one set back.  I was in the hospital for four days post op, then home for three and then developed a blood clot in my arm.  I was readmitted for four more days to get the clot under control, and they are still adjusting the clotting meds to get them right but I am lucky enough to have home nursing so I don’t have to get across town every time my blood has to be drawn.  But, the bigger part of this complication is that there has always been a big debate about my going back on Estriol after my surgeries.  This was the trial drug that I was on for two years that helped my MS in such a significant way.  Well, it turns out that women who are prone to blood clots cannot take hormone replacement therapy drugs, the category under which Estriol falls, so even though I know there is a wonderful solution out there for my daily struggles with MS, it is no longer available to me.  Now, this is bad news, undoubtedly, but I am not letting it override the good news that was delivered at the same time.  Of the hundreds of biopsies that they did from my top and bottoms 🙂  there wasn’t a single malignant cell.  In fact, there were not even signs of pre-cancerous cells so if ever I needed reassurance that I was doing the right thing, it was handed to me, right there, on a silver platter.  So I take the good with the bad, it seems to have become my nature and at some point I will have a big cry over the estriol, but for the time being I’m too fucking grateful to have made it through 13 hours of surgery with no malignancies.

So once I was home and settled, my mom moved in to take care of me and as always, she was extraordinary.  She’s a nurse so she’s strict and capable of handling just about anything, but she’s also my mom- the only person who can fix my pillow so it feels exactly right, and she slept on a chaise lounge in my living room so she could be right next to me for my first few post surgery nights.  How I would have made it through all of this without her is impossible to imagine.  Then, in order to give her a bit of a break, my three best friends from college planned trips to each take care of me for anywhere from 4 to 7 days, sometimes overlapping, sometimes taking care of me on their own.  The most succinct thing I can say about this is that post surgery recovery should not be this much fun.  Not only did they pass the baton, learn to empty my drains, change my dressings, bathe me, figure out foods I could tolerate and give me laughter and love every second of every day- they also reminded me that this is just a new chapter.  My life hasn’t ended here- it has instead been prolonged and maybe, just maybe, I will allow something wonderful to happen now- even more wonderful than merely surviving being dealt a crappy genetic hand.

My sis comes over most evenings with dinner and works on the puzzles with which we have become obsessed so I am rarely alone in the evening and although sleep isn’t coming as easily, it does arrive eventually.

Heading into week four of recovery, I’m hopeful that my son will start spending the night again next week depending on how well my T-Rex arms cooperate.  My ex husband has been wonderful about getting him over here at least four times a week and he’s incredibly gentle and solicitous about my condition.  An 8 year old shouldn’t have to see his mom like this, but he’s been a trooper and my hope is it will make him less likely to fear illness- he’ll be a pragmatist just like the rest of his clan.

On a final note, did I mention how ridiculously good my rack looks???  For someone who was always put off by plastic surgery, I am telling you now- I understand why women do this.  They stand up, on their own!!  And they aren’t even finished yet.  I still have three more parts of reconstruction to undergo and another complication with the blood clot is that I have to wait until I am off the blood thinner to undergo more surgery- so I figure everything, including the tattooing should be complete by the holidays.  I’ll just put big red bows on my boobs and dance around.  The height of maturity, I know.  They also look incredibly natural, the part that amazes me most of all.  Dr. Tseng, UCLA.  Tuck that name away for safe keeping.

As this is a monster post it will be awhile before I do another, but I just wanted to assure everyone I am on the mend, I am as optimistic as ever about my healing and future health and I can safely say I will never live long enough to thank everyone who has helped me though this trial.  No one would think it to look at me, but I’m a very lucky girl…

I will be posting pics sometime in the next week- pre and post surgery pics and the heading will read graphic so if those types of things creep you out, please feel free to skip them.  Their sole purpose is to help other women who are facing this surgery so they have a sense of what happens along the way.

xo,

Amy

And away we go…

In Uncategorized on June 25, 2012 at 9:03 pm

So tomorrow is the surgery.  I’m ready to have it behind me, to start the healing process and to know that I have done everything in my power to combat these BRCA genes for now.  While I am not nervous about the surgeries themselves, I still find myself fixated on the ways in which I will change post surgery.  How being thrust into menopause will effect me, how it will effect the MS.  But I am trying to keep my eye on the prize.

I was speaking to a friend recently who brought up the fact that I had opted for the most aggressive treatment in regards to these genes, and it occurred to me that I was never given an alternative.  All three of my surgeons said this was what I needed to do to ensure my survival, so I’m doing it.  I asked every question imaginable, read up on these genes to the point that I could have an advanced degree in hereditary cancer genes, and I am comfortable and secure in the fact that this was the only way to proceed.  Of course, I keep trying to explain that to my boobs and my ovaries and they just look at me like I’m bat-shit crazy.  Well to hell with them, I won’t see them after tomorrow anyway…

This is the deal, to proceed in hopes of living a long, healthy, fulfilled life.  I figure with how much I am losing over the next 24 hours, I’m making lots of room for new things.  Things like Alaska and Israel with my kid, and seeing him graduate from college and med school (please, please, please).  Things like riding a mechanical bull, and working on 8 plays next season.  Things like a crazy big love which up until now I had only seen as a thing of the past- but what the hell, I mean there’s going to be LOTS of room after all.

Other than that, I haven’t much to say today, except this.  I am incredibly grateful that I have so many people who love me and who have my back.  Along the way, sitting in doctor’s offices, waiting for mammograms, MRIs and blood work I have met a lot of women who have readily shared their stories with me and some of them had no one to take care of them.  I spoke to a woman who opted not to have chemotherapy post mastectomy because she had no one to help her.  No matter how hard things have gotten I have had so many people here to pick me up, dust me off and set me right again that I feel I won’t live long enough to thank them.

And to my family–I know how hard it is to be the person in the waiting room- we have all spent more time in them than should be allotted in one lifetime, so let’s make a pact to take a break from operating rooms and waiting rooms for awhile after this go-around.  BRCA genes be damned.

This will likely be the last entry for at least two weeks, but I’m sure I’ll have plenty to report and pictures for show and tell.  Until then…