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Okay- now I’m REALLY pissed.

In Uncategorized on February 13, 2012 at 5:05 pm

First- updates on weight loss and workouts.  I am managing 5 workouts a week and I am down 10lbs.  Although this week has challenged my food resolve as the BRCA gene makes a new appearance.

Thus far in my effort to reach out and muddle through all of this BRCA information and the subsequent processes, I have failed to mention the origins of my BRCA1 and BRCA2 genes and how they have effected my dad- lovingly titled the BRCA king by me- although his super hero name is Cancer Man.  His father- my paternal grandfather, died quite young from pancreatic cancer.  His mom, my paternal grandmother, died from ovarian cancer.  They are both BRCA indicated cancers, for those who haven’t been taking notes, that means they are both on the list of cancers caused by the gene mutations carried by me, my sister and my dad.  The widely held belief that the BRCA gene only indicates a genetic disposition for breast or ovarian cancer is in fact too narrow a view of these insidious little mutated fuckers.  So if we go back to 7th or 8th grade biology, we all recall the gene matching, dominant, recessive, blah, blah, blah.  Well clearly, these are dominant, because my dad has been juggling this gene since his first cancer diagnosis- prostrate cancer- in the early nineties.  Since that time he has had colon cancer with a pre-cancerous recurrence, bladder cancer which by its very nature recurs, and as of last Thursday, a new addition of ureter cancer, most likely a stray group of cells thrown from the bladder, but he’s undergoing tests and will have another surgery to have the cancer taken out.  My dad put it best when he said that upon hearing the news he was disappointed but not surprised.

So this is where we stand.  The knowledge of these mutated genes causes us to be surprised when there is a benign result.  What shocked me about this most recent wave of news on the cancer front was this:  I am in a barely containable rage.  I have managed each blow dealt thus far with relative grace.  Although anxious at times, and worried when my sister heads in for her chemo rounds (which, p.s., last one is this coming Thursday- yay for that) I have approached my own challenges by doing everything humanly possible to get stronger, thinner, more focused.  My work, child rearing, workout, and health care regiment leave little time for self-pity, but I managed to find time for it yesterday- on a mad fluctuation between bone crushing depression and head splitting rage.  And there’s no where to put it.  My ex-husband is concerned, he says he has rarely heard me sound despondent and maybe I should speak to a professional but blogging is way cheaper and I always get to be right.  Truth is, I am angry because my dad has to have another surgery, because as my sister says we will most likely all have to face an onslaught of cancers in the coming years, and no matter how much precaution is taken or how diligent we remain, our genetic makeup is such that our bodies will incline toward the big C.

Now, when I am calmer, or speaking to my sister regarding these matters, I take a different position.  I have known for 7 years that I have Multiple Sclerosis, but I don’t harp on the fact that there may be a wheelchair in my future, or that my optic nerve could crap out and cause blindness, or even that my vertigo could increase to a point of making it impossible for me to work, drive, even stand.  I NEVER worry about these things- upon my life I swear this is true.  They are not inevitable outcomes in my view.  Are the chances higher for me than for others that these things may come to pass- yes.  But if you think I’m going to waste the time I have for walking, seeing, living without the dizzy’s- on worrying about what may be down the road- then you are as crazy as I am genetically mutated.

So I realized that my anger, my truly blinding rage that has seeped in, is not about our inevitable outcomes- my dad’s, my sister’s or my own, but rather it is about watching those I love struggle under the weight of medical tests, surgeries, treatments and recurrences that make our lives harder than they would be were these genes not dominant in the Levinson line.  I am far more comfortable inside of my own illness than I am as the outsider watching the people I love muddle through their own version of the story I’m telling you here.

It must be said that BRCA1&2 genes are not the only genes I share with my pop, King BRCA.    The very fact that I can write this and share it with you is the most dominant gene he passed to me.   And as I round out the last paragraph, I am less angry than when I began because my ability to process through writing it down is saving my sanity these days.  I am not in denial, nor am I Pollyanna- I am simply trying to make a bad situation better by keeping my loved ones laughing and reminding myself that at least I have my health…oh shit…

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And in my spare time…

In Uncategorized on January 28, 2012 at 9:50 pm

Things are about to get nutty- like five day a week workout nutty with very little frivolity in between.   It’s an interesting notion, getting into shape for surgery.  I suppose I’ve never really thought about it because usually when people are having surgery it’s either emergent, or the people I have known have been in good enough shape not to have to concern themselves with weight loss and muscle toning.  Yeah, fuck those guys.   I, instead, begin a regiment with physical therapists, hydro-trainers and pilates instructors who will now join my lovely yoga instructor in an effort to make chicken salad out of chicken shit.  I managed an 8 lbs. weight loss this month, 2 less than necessary to stay on track, but looking at my new workout schedule, it’s unlikely I’ll have time to eat so next month will hopefully show me better results.

So Friday I met with a physical therapist who after hearing what’s on the horizon, came up with a battle plan that involves, as she calls it, endurance.  Beginning Monday I will do pilates two times a week and hydro-training one time per week.  Yoga will remain on Tuesdays and at least one hike will have to be implemented for cardio balance.  In the midst of this training I will have weekly check ins with my physical therapist to make sure that I am on track with my weight loss and strength training to get me ready for my July surgery.   And the cost to me- well I am basically getting the deal of the century because these activities have been deemed medically necessary by my neurologist, my GP and my surgeon dream team.

What is REALLY inconvenient about all of this though, is that it is time consuming, and the rest of my life is not being very accommodating  in regards to stopping to make room.  I still need to help plan a season at the theater, I still need to do some research into academic options for my son who seems to need a change from his current situation, I still need to be on my A game in terms of love, affection, devotion, attention, discipline and compromise.  I still need to manage the larger illness that keeps peeking around the corner because it loves nothing more than a big dose of stress.  But I suppose this is true for all people who face sudden illness, surgery or anything that interferes with life as we know it.  Missie has had to take off five days after every dose of chemo- that’s certainly not her choice.  There are adjustments to be made and favored situations to be sacrificed.  Missie has wisely started planning vacations to look forward to after her chemo and radiation are complete, and that seems like a perfect way to plan for the future.  But I’m not there yet- I am in that uncomfortable place where possibilities seem limited and nothing but the most basic needs of my life can be met, and that is a state I detest.  I have always said that life without something to look forward to can hardly be a life worth living.   But management of one’s health does end up trumping all other matters so that with the exception of my child, my work, and my strategic plan leading up to July, I am more inclined to barrel through than I am to look forward.

My next appointment with the surgeons is at the beginning of April, and hopefully they will be pleased with whatever progress has been made.  Until then I’ll try to post in a greater state of positivity, or rather I’ll try to exist in one- and if not then I’ll just bitch and moan and fling myself around as my mom would say.  Wish me luck on this endeavor- I feel like I’ve set out to climb a huge mountain and it will only lead me to base camp for the real climb.  But here I go- up, up, up…

 

Not nearly as fun as it sounds.

In Uncategorized on January 13, 2012 at 4:24 pm

I am clearly not the most mature person in the world because I initially found my breast MRI rather hilarious.   For the record, the MRI and Mammogram came back clear- so I can stay on my clinical trial until its completion and the surgery will be set for the beginning of July and I won’t have to see any more doctors on that front until late March or early April.  But this MRI  is really one of the most awkwardly funny things I have ever undergone.  And trust me- I’ve had tests from my top to my toes and every private bit in between.

For those of you who have yet have the pleasure of a breast MRI, allow me to explain.  Unlike a mammogram where you stand up and they adjust the boob smasher to fit you for imaging- and seriously- they flatten those suckers out to the point where I am pleasantly surprised when they regain their natural appearance- but with an MRI you lay face down on the machine in which there are two large cut out squares where your boobs hang through.  Just try placing these pendulous masses into the squares and not immediately breaking into “do your boobs hang low, do they wobble to and fro:, etc..”.  But as I was at the very classy women’s imaging center at UCLA, I thought it unwise to be a smart ass.  Now- the not so nice part of this MRI- and again, keep in mind, I am VERY comfortable in an MRI machine.  I have a minimum of one per year to track my MS progression and while undergoing the Estriol clinical trial I have been having them as often as  every three months- so I’m all good with the banging, siren blaring, enclosed tube of torture.  I usually fall asleep after an initial period of anxiety which I get through by imagining Santiago laughing hysterically at something.  It works like a charm.

But there was something about the body position on this MRI and the fact that to keep my arms in place, the technician strapped them in, so it was rather like laying face down in a straitjacket that had cutouts for my boobs.  I could also feel my breath quicken as I was lying on my stomach and so each inhale raised my body away from the table slightly.  I was anxious in a way that is unusual for me and of course, being who I am, I analyzed the hell out of it once I left the doctor’s office.  Over the week that followed, there were numerous events that skirted around the periphery of the upcoming surgeries, and I allowed each thing to make me more and more anxious.   The MRI- which seemed like a funny story to tell, settled in as the first of a long line of things that made me uneasy.

And here’s what I came to.  I am not comfortable being afraid or being perceived as fearful or trepidatious when it comes to medical tests- or anything medical for that matter.  I want everyone to look at me and say, “wow- she’s so tough and none of this seems to phase her and isn’t she superwoman?”  Most of all, I want to believe it of myself.  But I get to the end of a week like this one that began with the bondage MRI and will end with setting dates to sign consents, choosing who holds my power of attorney and  figuring out my will and I think that the title of superwoman is something I might have achieved once upon a time, but for now I’m just going to have to settle with anxious lady with less than average resolve.

And suddenly I feel relief.  The guard slips a bit, I tell my friend Rachel  that I’m afraid- that this might complicate my MS in an irreversible way, and that the idea of menopause at 40 totally blows because my doctor said I might find I don’t have the same sex drive- and sorry mom and dad who are reading this- but that happens to be something of which I am a HUGE fan.  And once I say it out loud- pass it on to someone who will love me even if all of these things are true- it makes it less potent, less painful.  Less of the whole truth and more just another side of all of the aspects that come into play with something of this magnitude.  So I post this because sometimes I have to admit that it’s not a walk in the park, so that someone reading this who is dealing with the same thing doesn’t feel like they have to be superwoman, so I don’t have to be superwoman and instead I can ask for a cup of tea, a kiss on the forehead and a reminder that it’s okay to not always find the humor in a shitty situation.  But come on- how can one not giggle at “do your boobs hang low?”

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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.

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…

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.

The Frankenstein Factor- as promised…

In Uncategorized on November 27, 2011 at 8:03 am

So the other night my sister and I went to see Breaking Dawn at 12:15am- opening night.  That’s right, we are 40 and 44 respectively, and we are not immune to the powers of Edward Cullen- he’s a hot, basically underage vampire who sulks.  What could be better?  But I digress- we can talk Edward later- we were there with a couple of friends, one of whom was making inquiries about the BRCA gene and what the positive test meant in my case, not having been diagnosed with cancer.  I explained that based on the fact that I had tested positive for both BRCA genes, just like my Cullen loving sister, and because I was already battling an auto-immune disease, and my family history, and an immediate sibling was battling cancer- that all of these factors lead the geneticist and my other doctors, to strongly recommend a prophylactic double mastectomy and hysterectomy.  This sent him into a half-hour tirade about self-mutilation, and why would I opt to butcher myself when other treatments are available, and don’t I know what I’ll be doing to my body and how I will suffer because of it- all of this, mind you, while my recently operated on sister stood by and tried to remind him, albeit gently, that she was standing there with no boobs- and HELLO!  IS THIS ON?.

Now, here’s the thing.  I know that there are plenty of people who are going to have this kind of reaction- I understand that to someone who hasn’t faced down this difficult decision, or studied up on what this gene means, that this seems like an extreme way to handle this problem.  But, in fact, it is not.  They are just boobs, people.  Oh, and ovaries, and well, there’s that uterus in there too- and well shit, I guess it’s a lot of stuff that I have been rather attached to for some time.  Okay- so what if it is mutilation?  What then?

The way that I see it, I have two choices.  I either do this now, under very controlled conditions with a known outcome, and I decrease my chances of developing cancer by a significant amount OR  I wait until cancer develops- and there is an 87% chance that these previously referred to boobs will grow cancer cells, and then have the very same procedure under much less controlled circumstances followed by chemotherapy and radiation.  Now, there will be some out there who will ask- “but what about that 13% chance you won’t get it”.  And to them I say I have had frighteningly bad results in the health department- I am more likely to bank on winning the fucking lottery than I am to bet on that 13% chance that I won’t get cancer.  Further- these two surgeries only lower my risk of two of the five cancers that the BRCA gene leaves me vulnerable to- I’m not working with thrilling odds here.

So- mutilation it is.  And here’s the thing.  I have never been that attached to my breasts- I haven’t ever seen them as an asset, as it were, or a part of me that is particularly attractive.  They’re big- and some guys dig that.  One of their fans proposed a pre-surgery play-date with them, a last hurrah as it were.  The term play-date made me giggle.  But at this point in my life- they just really get in the way when trying to do downward facing dog.  I end up in a half-assed downward dog with a mouth full of mammary.  I know, charming visual.  But whether I have liked them or not- they are mine-and I don’t delight in the idea of having pieces of me taken.  I don’t know what will happen to my body when I am thrust into menopause at the ripe old age of 40.  These are not choices I make lightly.  On the contrary- with the exception of having a child, these are the most profound choices I have ever made.

There is one upside to never having been a great beauty.  I am not going from someone who has always relied on my looks to get by to someone who needs to work with other attributes.  I am cute- that’s my looks “status”. Sometimes I’m cuter than other times.  I have a tendency to eat too much ice cream and get pretty chunky- I’m not as cute then, but I ALWAYS have a good personality.  No seriously, I do.  Don’t sulky vampires go for the girls with good personalities?  In all seriousness though, I haven’t ever placed too much value on my attractiveness- I have understood that people either want some of this, or they don’t.  Sometimes I’m cool with that, sometimes it really pisses me off.  But here’s the problem- I am not comfortable with fake stuff.  Boobs that aren’t mine seem odd to me.  I wholly support other people doing whatever they please to make themselves feel good- but this isn’t that.  This is just a matter of staying healthy, and well, alive.

Whether the scars are visible or unseen due to surgery- the feeling will be the same.  I will know, as my sister does, that part of who I have always been is going and being replaced by something new, or simply replaced by an absence of- a space in me, both inside and out, that I am not as whole as I once was and that just maybe, I am not the woman who I have always been.  Now, there will be those who will jump up at this point and say, “no! of course you are- it’s about what’s on the inside.”  And maybe that’s true to some extent, but it doesn’t wash away what is true for me.  It doesn’t wash away that these genes are causing irreparable damage to me and my sister and although we might be able to rebuild (it sounds like we’ll be bionic women, which would be SO cool) we will never be able to be whole as we were.  Maybe wholeness will present itself in another way.  Maybe these spaces in us that will exist will be filled with something more profound like a greater appreciation for life, or a larger sense of empathy, or a greater focus on taking care of what remains.  We’ll have to wait and see.

But I would ask those who judge the choice to have these surgeries to keep in mind that no woman- in fact no person- willingly gives up body parts just for the hell of it- particularly parts that have defined our gender in some way.  As confident as I am that all will be okay in the end, it would be disingenuous if I didn’t admit that I am afraid of being unattractive and in that state, unwilling to leave myself open to that elusive soul mate who is wandering the world in search of me.  (that’s not overly romantic and unrealistic at all) Maybe he’s just really into women with little to no boobs- and this is the perfect opportunity for him to find me!  Here’s hoping that my Edward likes ’em flat and saucy.

The “what if” followed by the “what then”?

In Uncategorized on November 22, 2011 at 11:01 am

I was planning on writing on the Frankenstein factor tonight- something that is weighing heavily on my mind as I set up appointments with the people who are going to be removing random body parts and as I watch my sister struggle with losing her gorgeous locks, which we both know will grow back after chemo- but still- it sucks and I wish I could carry that weight for her.  BUT, something else came up in a post from my dear friend Jessie that I want to address as we head into the story of me and my sis.

When I began researching the BRCA gene it was when my sister was getting tested.  She had been diagnosed with breast cancer and surgery was a must, but the type of surgery was still under consideration.    Based on her history- she had endometrial cancer at 27, I think I was mostly seeking the argument as to why she would HAVE to have a double mastectomy and not get the lumpectomy.  I thought, if she has one of these genes, then she has to do the whole thing- no questions asked.  And selfishly, that’s what I wanted. Not for her to have the gene- I’m not that sick- but for her to have everything removed.   I was focused on not losing her, and instead of considering the fact that she might not want to have everything removed, I was secretly screaming- TAKE IT!  TAKE IT!  Just save my sister for fuck’s sake.  Now, it turns out that she has both the BRCA1 and 2 so in fact, in the end, no choice was given.  She had to have the complete mastectomy.  With that said- when I did the research, the experts didn’t all agree that prophylactic surgery is the only answer in all cases.

Some experts will say that if you are identified as having either BRCA 1 or BRCA2 that it simply means that you have to be diligent about mammograms- something we should all be diligent about to begin with.  The geneticist I met with at UCLA said that many of her patients who were identified prior to having children, opted to have their families and then get prophylactic mastectomies afterward.  She was quick to point out that having the gene is not the same as having cancer- it just gives you more information in terms of what you need to look out for in your own life.  Truth be told, with my family history, I had already begun more frequent exams at 35 at my doctor’s suggestion.

Now, my case is somewhat complicated by the fact that I have MS- and with a compromised immune system there are fears about what I have the capacity to fight.  Further, my MS flares up when I have a cold- god only knows what kind of state Cancer would put me into.  Also, testing positive for both genes, and having a sister who has already developed cancer, all point to the conclusion that there is really only one way for me to deal with the BRCA genes.  But, even with that knowledge, and knowing that surgery is imminent, my physicians and I are doing what we can to keep me on an MS clinical trial that I began 18 months ago.  With 6 months until its completion, I would hate for all of the results to be unusable because we had to stop the study early.

All of this is a lengthy way of saying that just because you decide to uncover the “what if” part of the question, doesn’t mean that you have to leap into the “what then?” part of the equation.  We are all different in regards to mitigating factors, and it’s crucial to remember that having the gene and having cancer are not one and the same.  My sister had no option- she had to take the most aggressive course of action.  For reasons quite apart from hers, I have to do the same.  But many women opt for alternatives, and there are as many answers here as there are questions.  I’m just a big believer in knowing what I’m up against.  With that said, if given the choice to find out at 17 that I had Multiple Sclerosis, or wait until 33 when I actually learned I had it- I’d definitely opt for the latter.

For Jessie- who brought this up in her post- it is a very individual thing as to whether or not we learn about the BRCA genes in ourselves.  But just know that my sister and I are at the extreme end of the spectrum and I hope with all my heart that we remain anomalies- this is one group we don’t want anyone we love to join.

Stay tuned for the Frankenstein factor and boob shopping online in my next installment.  Until then, I hope you are all with folks you love on Thanksgiving.  My sister, in between Chemo treatments, is hosting the holiday.  Her ability to do makes me the most thankful woman on earth.

Because knowledge is power?

In Uncategorized on November 19, 2011 at 7:18 am

Last summer I was on a camping trip and privy to a conversation two women were having about something called the BRCA gene.  At the time, I had never heard of it- but they were discussing the fact that having lost their mothers to breast cancer, they were going to undergo genetic testing and if they tested positive for this gene, which as I understood it could be BRCA1 or BRCA2, they were going to have prophylactic mastectomies to significantly decrease their risk of breast cancer.  I thought to myself at the time, “these women are out of their fucking minds…why not wait until you actually have a sign of cancer?  Why not just be totally proactive and get mammograms on a regular basis?  Why take the most aggressive and physically hostile and mutilating approach”.  Be careful where you throw stones- that’s my first lesson.

It is less than six months since I overheard that conversation.  Since that time, my sister has been diagnosed with breast cancer, had a double mastectomy, is undergoing aggressive chemotherapy- as if there’s any other kind- and was identified as a genetic anomaly when she tested positive for both the BRCA1 gene and the BRCA2 gene mutations that indicate a high risk for numerous types of cancer, breast cancer just being the biggest of the threats.  So, it was suggested that I get genetic testing too.  Turns out, my sister and I are both genetic anomalies- we both carry mutations in the BRCA1 gene and the BRCA2 gene.  Those women who I thought of as nut cases- I am now considering calling to make amends because I am currently undergoing initial assessment for not only a prophylactic double mastectomy but a full hysterectomy as well.  With both genes, I have not been offered other options- but wait- this gets better- or worse- oh, you know what I mean.

I was also diagnosed with Multiple Sclerosis 7 years ago.  Now- please see pics posted in this blog- to look at me, you would not think that I am a walking time bomb- and most of the time, I don’t think of myself that way.  But this discovery, of this pair of mutated genes that have caused four cancers in my father, two cancers in my sister and the death of numerous family members, has made me feel vulnerable in a way that I have never even contemplated allowing into my daily life.  I began researching this elusive BRCA gene to see what I am up against, and I could find almost NO information on people who tested positive for both genes- hence the start of a blog.   I believe that knowing everything about what you are up against makes your odds better of surviving- or at least muddling through with a shred of sanity.  So as my team of physicians assess my risk, both in the realm of cancer and MS, and we decide how best to proceed in order to give me the healthiest, longest life possible, I am going to fill you in on the progress.  I figure this way, when another person like me comes along and wants to find out just how much it sucks to have both BRCA1 and BRCA2 positive genes,  she or he can track a journey that will have a positive outcome- because god help me- this is going to have a positive outcome.  I have a seven year old son who will accept nothing less.

Along the way I hope to include info. that will help others, stories that will make you laugh your ass off, cartoons drawn by my ex-husband who somehow captures my likeness with uncanny realism in stick figure form, and photos of a life that is being lived- at all times- to the fullest.  I don’t fuck around- I know life is short, I know self-pity is a bore, and I may forget both of those things on occasion- so please feel free to quote me.  I have always said that all a woman needs is the perfect pair of jeans.  JEANS people, not genes.  Sheesh…