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Pendulous is a euphemism…

In Uncategorized on June 11, 2012 at 5:16 pm

For SAGGY!  When a plastic surgeon tells you your breasts are quite pendulous, do not think for a moment that he is speaking of small objects suspended by sinewy strings- he means your boobs need a boost.  Now, in the man’s defense, he speaks the truth.  Gravity dictates that after 40 years, DD breasts, in fact all size breasts, head south for the winter and ultimately, like all old things, just move to Florida and call it a day.  Although I think mine have migrated all the way to South America.  But, out with the old and in with the new I say, and today Dr. Tseng and I decided just what the new will look like.

So today was my final pre-op appointment with the plastic surgeon and as we had moved on from the FLAP procedure (see 2 posts ago if you don’t know what I’m referring to) I had to decide whether to have ‘expanders’ put in as initial reconstruction, or to go straight to the implant which meant picking a size and living with it.  In either case I am most likely going to have to have at least two surgeries to get them right.  With expanders, they essentially put in a pouch filled with saline, that will begin at about 50% capacity.  Then, after three weeks of recovery post surgery, you go in weekly to have more saline injected into the pouch until they are exactly the size you want.  Then they do a follow up surgery where the expanders are replaced with an implant the same size you’ve chosen.  It’s like one of those choose your own adventure stories with boobs!

Now, most of you know that I was not thrilled about having to forgo the FLAP procedure but here’s what is ideal about this scenario for me.  My weight is currently going down because I finally bit the bullet and got off sugar and flour again.  So with that change, I am more apt to lean toward a smaller breast size, but my plastic surgeon is still set on a C.  So, this is a perfect way for us to find a happy medium 10 cc’s at a time.  Yes, I know, I have mastered the art of finding the silver lining.  I told my cousins that at this point I can find a silver lining on a pile of shit.  Who would have thought that facing down something this big would make me more optimistic- or maybe I’m just completely losing it.  Well, as long as I’m not depressed, who cares?

So, I signed my informed consent, I finalized the procedure decision with the surgeon and he walked me through the whole thing once more.  First, the breast surgeon will remove my BRCA breasts as they are unaffectionately referred to, then my plastic surgeon will place in the expanders and do the first step of reconstruction so I will wake up with roughly a B cup.  Then my Gynecologic oncology surgeon will remove my uterus, fallopian tubes and ovaries as well as taking numerous samples to verify that the BRCA gene hasn’t already worked it’s magic in that general area.  They will in fact biopsy breast tissue as well to check for the same thing.  If they find something, as my ex-husband always said, we’ll burn that bridge when we get to it.

So we are now at T minus two weeks.  (can someone please explain to me what T minus means?) I have managed to fill every single day leading up to the surgery- some days with pre op appointments and tests, and some, like last Saturday, with play going and picnicking with my favorite pal.  This weekend we are off to a gorgeous beach house that my sister rented so she’d have something great to do post treatment.  I am a lucky beneficiary of that reward.

One last thing that happened in the waiting room for a scheduled mammogram today.  A very nice woman struck up a conversation with me, mentioned she had had breast cancer and was having a recheck, and asked if mine was routine, etc. because I’m so young.  I explained that I was actually having this test as part of completing the Estriol trial for MS but proceeded to tell her about the BRCA genes and upcoming surgery.  She said to me, “I’m so glad when I meet people like you because it makes it impossible for me to feel sorry for myself.”  Now, of course the subtext there is “thank god I’m not as fucked as you are” but with that, was such a genuine gratitude that I had told her about my situation and it made her load feel lighter.  And for me, it’s no skin off my back to give her this boost, so I’m happy to offer up my story if it helps someone else see their own story with clearer eyes.   Perspective should never be underestimated- and mine is roaring like a lioness ready for battle.  Out with the pendulous and in with the perky!

My family anthem…

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

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

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

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

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

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

Bring on your wrecking ball…

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

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

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

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

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

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

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

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

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

Switcheroo…

In Uncategorized on April 20, 2012 at 1:27 pm

Maybe it’s because I posted about it, maybe it’s because I got so much love from everyone in the wake of the last post, and maybe it’s just because things never stay the same, thank god- but it all looks better today. The hurdles seem manageable, the little black rain cloud that was living about my head has moved on and I’m grateful. Very, very grateful. As my friend Gil always said, onwards and upwards…

Butchered, fat and alone. Around here we call that Tuesday…

In Uncategorized on April 17, 2012 at 3:31 pm

This whole ‘not wallowing’ thing is a lot of work, so I have taken a couple of weeks off and proceeded to feel good and sorry for myself.  There were a number of things that sparked this most recent trend.  The first is something I have been loathe to discuss but as it keeps rearing its ugly head, best to get it out on paper- or screen- whatever…

I am currently working on a play –The Pianist of Willesden Lane– about the kindertransport, children who in 1938 were taken out of Germany, Austria and other German occupied territories after a systematic attack on Jews, their homes and their businesses , known as Kristallnacht.  (Didn’t expect a history lesson here, I’m sure)  At any rate, I was writing an article about these events- and even as a Jewish studies minor with a focus on Holocaust studies- there were  so many aspects of this story that I didn’t know, and as I learned about the indifference of the Americans and the British prior to the implementation of the Kindertransport- I grew more and more despondent.

And believe it or not, this is tied into the BRCA gene- the very same BRCA gene that is most prevalent in people of Ashkenazi descent.   So the Jews survive this attempt to exterminate their people.  Granted, with higher death tolls than anyone should have to endure and which so many groups of people have.  And then, as we begin to raise families around the world, and our grandparents settle and assimilate into new lives, our desire to remain connected to our own culture begins to bite us in the ass.  And the form this so called ‘bite’ takes- effed up genes that make us prone to dying young.  Now, while I don’t believe in God enough to blame him for this cruel irony- I will point a finger at the universe and call a shitty situation a shitty situation.   I realize this is self-pity on a GRAND scale- but I wasn’t feeling sorry for myself- more for my Grandfather who died of pancreatic cancer when his son, my father, was only fourteen.  And my Grandmother, who died of ovarian cancer and spent so little time with her grandchildren.  The thing that brought this home worst of all- the woman who has created this show about the Kindertransport- her mother, Lisa Jura, was one of the children brought over from Austria.  Lisa had two daughters, and one of them was BRCA positive and died of breast cancer.  The direct line from a holocaust survivor to a BRCA victim chilled me to my very core.

So that was the first thing that depressed the shit out of me.

The second, and this is far more self involved and self-pitying- was recently my friend MK, who is also my BELOVED hairdresser, asked me how I was holding up leading into my surgery and because I didn’t pause to edit- or to find a positive lead in- I simply replied, “I’m fine with the exception that I’m about to be butchered, fat and alone.”  And then, when I would normally laugh at the drama of a statement like that, my eyes welled up with tears and I thought I was going to lose it.  Luckily, someone else walked in at that point and I pulled it together.  But the next day, I was recounting the story to another friend and the waterworks started again, and this time there was no stopping them.  My surgery is in less than two months, the juice diet was a bust, my body just basically told me to go fuck myself for starving it- and I am afraid that I am going to be unable to ever get back to a place that feels ‘normal’.  At least as ‘normal’ as my life has been in the last few years.

So I took this all to my sister- and when I told her about butchered, fat and alone she stated, “yeah, that’s pretty much how I feel”.  Of course, to me, she is none of these things.  She is strong, and surrounded by people who love her and weight is just weight and we can lose it.  But to add insult to injury, where my fear of developing cancer is sort of a vague “it might happen at some point”, she has to manage an active fear of further cancer.  She has an impending sense of doom because at 44 she has already had cancer twice and she knows she has both BRCA genes and she feels genetically screwed.  And here’s what’s really messed up.  When I pointed out to her that all of these things would be far easier to manage if we could just remove the fat part of the equation, she totally agreed.  So toss in a big dose of self-hatred and that makes everything exponentially more complicated.

With the understanding that Missie and I still have to fight the weight problem, she is doing amazingly well.  She has finished her chemo and is in the midst of radiation which seems to be going smoothly.  Her mood is good, she’s game for heading back  into a weight loss program together and starting to exercise again little by little.  Also, little fuzzy blonde hairs are making an appearance on the top of her head and that is cause for celebration.  She is fighting the good fight and taking on everything with grace and humor and although I know there are good days and bad days, there is a sense of the clouds lifting and the cancer leaving.

Meanwhile, the other BRCA triplet, my dad, is a rockstar.  He was back at work 10 days after the removal of his ureter and his kidney.  His lead surgeon has decided that he would like him to undergo chemotherapy to make sure that any traveling cells get killed before crossing any borders. They refer to it as prophylactic chemo, but I think we’d all agree that with both BRCA genes, these things are more necessary than prophylactic.  As long as they get all of the cancer out, they can refer to it any way they like.

And me- well I am still feeling less than optimistic.  I wish I had someone to lean on, but I know myself well enough to know that if someone were here, I’d avoid doing any leaning- it’s not my nature.  And I briefly thought about scrapping the nipple tattoos because I began to feel like somehow I was taking this too lightly if I turned it into an excuse for tattoos.  But truth be told, this is my way of making lemonade, so whatever gets me, and my nipples, through the night has got to be okay.  Besides, the quote I’ve chosen to tattoo is a good reminder that I will not be butchered, only changed.  I will not be fat, only on my way to healthy.  And I will not be alone because the love I have, I give, and people want love that is pure and honest and enduring.

Ring the bells that still can ring

Forget your perfect offerring

There is a crack in everything

that’s how the light gets in.

-Leonard Cohen

 

A bit more on Juicing…

In Uncategorized on April 1, 2012 at 4:28 pm

I just watched Joe Cross’ documentary FAT, SICK and NEARLY DEAD.  If you are interested in juicing- and even if you aren’t- it’s a wonderful film about how we eat and what micro-nutrients can do to improve our overall health.  It’s on Net Flix streaming and I HIGHLY recommend it.

Yeah? Juice this…

In Uncategorized on March 31, 2012 at 10:41 pm

So as the title suggests, I have begun juicing.  My friend Young Ji suggested this to me to deal with some of my chronic ailments and I thought, what the hell- nothing else seems to be working at the moment and I still have to lose all of this weight before my surgery in June, I’ll give it a shot.  It is seriously cool.  The juicer itself is like a magical machine that liquifies everything into pure nutrients and although I know there are some who think the juice can taste less like the vegetables from whence it came and more like the dirt they were grown in, I in fact like the taste of the juice.  Today I drank a batch that included brussel sprouts, spinach, carrots, cauliflower, broccoli, ginger, apples, grapes, cucumber and celery and it was pretty damn tasty.  With that said, I am drinking this juice as my breakfast and lunch, so god help you if you are in my path between four and six when hunger for dinner sets in and everyone around me becomes a steak with legs like in the old cartoons.  But I’m doing it, and then trying to stick to primarily protein in the evenings.  My physical therapist was concerned that because I’m working out six days a week and sometimes twice a day that the juice might not be enough calories, but so far it hasn’t seemed to be a problem.  The juicing is also incredibly time-consuming, mostly in terms of prep and clean up but I’m determined to stick with it for a month or so and see how my body responds- I’ll let you know.

In other news, my dad is recovering very well from the removal of his ureter and kidney.  He won’t have to have any follow-up chemo or radiation as far as he’s been told and he was home from the hospital three days after the procedure.  He looks exponentially better each time I see him and his co-workers bought him an AMAZING cake- kidney shaped with one of my dad’s writing lessons scrawled atop the cake “when in doubt, cut it out.”  Hard to top that as a get well gift. The relief that both he and my step mother are experiencing is palpable, while they both insist that they weren’t worried, the feeling that they’ve finally stopped holding their collective breath tells another story.  For the record, we are all breathing a bit easier now that he’s home and healing.

I am nearing the end of the two year clinical trial that I have been on for MS- it’s a bit nerve wracking because its completion dictates my surgery date so the shipment of my last batch of meds gave me pause.  May 28th will be my final day on the trial at which point they will ween me off of the trial meds- a pregnancy level dose of Estriol with a bit of progestin thrown in for good measure, and once it clears my system I am good to go for surgery- hence the date at the end of June.  This also means that I am counting down to the last period I will ever have.  If there is a silver lining folks, that is surely it.    Almost thirty years of this shit- it will not be missed in the slightest.

I think it’s safe to say that I don’t think about the surgery in the most concrete of terms.  I think about things like what state I’ll be in for my son to come and see me.  I think about who I will be comfortable having in my proximity once the procedure has been completed.  I don’t think about the pain or the changes to my body or even the cancers that I can’t address with these procedures.  With most of the other cancers, I can’t even get a true sense of what my odds are of developing them because the statistics never include both BRCA1 and BRCA2.  It isn’t that I’m in denial about any or all of these things, it’s just not where my mind leads me when I begin to think about the approaching date.  It is probably my built in ‘deny’ switch that has simply engaged on its own accord and intends to stay switched on until it is absolutely necessary that I switch to ‘reality’ mode and face the fear.  Maybe I’ll get lucky and stay in denial, but that has it’s own pitfalls.

For instance, besides eating, all I can think about is shopping, reading escapist novels and making out for hours on with men who are either unavailable or uninterested.  While relatively harmless pastimes, with the exception of the eating, I do feel a bit like a silly teenage as I drift into kissing fantasies briskly followed by sharing cake with said kisser.  So sad, I can’t even be sexy and smooth in my own fantasies- I require a made-up man who appreciates my smart ass sense of humor and my love of chocolate.  What- am I asking too much?  It’s my damn fantasy- and god knows, I’m entitled to tailor make it considering the real thing (meaning my life) certainly hasn’t turned out as I planned.  But I realize, because I’ve had enough therapy to do so, that the shopping and the eating and yes, even the kissing are all the barriers I’m building to avoid what is coming down the pike.  This surgery is big, and it’s long and I’m afraid of what my MS will have to say about it when all is said and done.  Either that or I really just like making out.

But for now, I’ll stick with the escapist novels.  I’m currently wrapped up in a trilogy about a family publishing house in England in the first part of the 20th century.  It doesn’t erase what has to be faced, but it sure makes it all go down easier.

Some straight up medical info.

In Uncategorized on March 19, 2012 at 11:15 am

My best friend asked me some questions about my procedure, so I thought I’d throw down some hardcore medical literature this morning.  This article covers my DIEP flap procedure.  Please note, what isn’t explained here is nipple reconstruction which as I understand it can be done in my plastic surgeon’s office in two follow up outpatient procedures.  More on that to follow after I verify it with Dr. Tseng, my plastic surgeon.  Also, this talks about an 8 hour procedure but that doesn’t account for the hysterectomy part of the surgery, so it may be more like 9-10 hours, more on that to follow as well.  This is the best description of the surgery I could find, I found it very helpful in spelling out the micro part of the surgery which is crucial to the success of the entire procedure.  I just need to keep telling myself that knowledge is power!  Happy Monday.

Taken from http://www.breastcancer.org/treatment/surgery/reconstruction/types/diep.jsp

DIEP stands for deep inferior epigastric perforator. This is the name of the main blood vessel that runs through the tissue that will be used to reconstruct the breast. In DIEP flap reconstruction, only skin, fat, and blood vessels are removed from the lower belly (the abdomen between the waist and hips). No muscle is removed. This is one of the main differences between the DIEP flap and the TRAM flap–the TRAM flap procedure removes muscle (along with fat, skin and blood vessels) and the DIEP procedure does not.

Because no abdominal muscle is removed, most women recover more quickly from DIEP compared to TRAM and have a lower risk of losing abdominal muscle strength. There also tends to be less abdominal wall discomfort because your muscle isn’t involved.

The other main difference between the DIEP and TRAM procedures is how blood is supplied to the belly tissue once it becomes your new breast. The DIEP is a called a “free” flap because the tissue is completely detached from the belly and then reattached to the chest area. Hooking up the blood vessels from the belly tissue to chest blood vessels is delicate work. Your doctor has to use a microscope during surgery, which is why DIEP is known as microsurgery. The TRAM procedure doesn’t detach the belly tissue from the blood vessels in the belly. The belly tissue, still attached to its belly blood supply, is moved up to the chest area. No blood vessel surgery is necessary. Because of the extra time required for the blood vessel microsurgery, DIEP flap surgery takes longer than TRAM flap surgery (about 5 hours to reconstruct one breast and up to 8 hours if you’re having both breasts reconstructed).

Like the TRAM flap, you end up with a tummy tuck as a fringe benefit of DIEP surgery because fat from your abdomen is removed to reconstruct your breast and loose skin is tightened up.

Breast reconstruction using your own tissue is popular because it’s a long-lasting solution (implants usually have to be replaced after about 10 to 15 years) and the consistency of the belly tissue is very similar to natural breast tissue. But the new breast will have little, if any, sensation.

DIEP has been used since the early 1990s. Because the surgery is more complicated, it’s not offered everywhere. It’s usually done by plastic surgeons who specialize in free flap breast microsurgery. If you’re interested in DIEP, ask your breast cancer surgeon for recommendations.

The DIEP flap procedure isn’t for everyone. It’s a good choice for women who have enough tissue to reconstruct one or both breasts. In general, you can still have DIEP if you’ve had abdominal surgery (hysterectomy, c-section, appendectomy, bowel resection, liposuction, tummy tuck).

DIEP is NOT a good choice for:

  • thin women who have very little abdominal fat to spare
  • women who smoke and have blood vessels that are narrow and less flexible

How does DIEP work?

A small incision along the bikini line is made and the necessary skin, fat, and tiny blood vessels are removed. The fat and skin are shaped into a natural looking breast and sewn into place. The tiny blood vessels that feed the tissue of your new breast are matched to supplying vessels in your chest and reattached under a microscope. The procedure takes about 5 hours. Compared to women who have had TRAM flap surgery, women who have had DIEP reported less pain and more abdominal strength after surgery. But DIEP is still major surgery and you should expect to spend about 4 weeks recovering.

DIEP for double mastectomy

DIEP reconstruction can be performed after a double mastectomy, provided you have enough extra abdominal fat. Your surgeon will determine if there’s enough tissue to do both breasts. This surgery takes longer than a single reconstruction (about 8 hours).

Dancing in my living room

In Uncategorized on March 13, 2012 at 10:59 pm

Okay, so while the pre-surgery diet is not exactly on schedule, the pre-surgery workout regiment has been kicked into high gear.  I have officially become the crazy lady dancing around her living room.  I have continually told my physical therapist that I intend to do thirty minutes of cardio everyday to help kick up my metabolism.  Well, walking a seventeen year old dog, while very pleasant, was not getting the old heart rate up so I invested in a game for my wii- Just Dance 3.  Now, for those who have never played the wii, you hold a remote in your hand and a sensor bar tracks your action.  With the dance moves, it is VERY particular how your move that arm and you get scored on each move.  There is an added feature called ‘just sweat’ where the system will choose high energy songs and count your calorie burn and I have managed to burn about 2000 calories each time I fling myself around the living room.

Now, for those of you who are like me and think that working out basically blows, I am directing this at you.  For those of my friends who love their morning run, or morning yoga, or morning whatever, you can skip ahead to the next paragraph.  Okay, lazy asses like me- here is what rules about this exercise.  First, I can wear anything.  Black bra, white t-shirt?  Who cares, I’m in my living room.  Total panty line under the most unflattering, here are my thunder thighs leggings?  What, you think the dogs are judging me?  And even if they are- they can’t talk so fuck ’em.  My point it, I fling on whatever is closest, and I dance around like a silly spaz, which I fear is an insult to people who actually suffer from spasticity, and here’s the kicker- I smile and laugh through my entire workout- whilst sweating my ass of, literally, and burning up to 2000 calories.  If I can keep this up until the end of June, I may not be thin for surgery, but I’ll certainly be heading into the operating room in good physical condition.

I am still continuing with yoga, pilates and pool workouts as well, much of which focus on weight training and muscle building so if you laugh at me dancing around my living room, I can totally kick your ass.

An update on my dad, and thanks to all of you who have emailed and asked after him.  He’s still waiting on surgery, but they are hopeful that much of it will be done laprascopically (sp?) and as I understand it, there is also a robot involved in the procedure which is pretty freakin’ cool.  But apparently, the hospital only has one of these robots, hence the waiting time.  I’ll update everyone when he is engaged in his speedy recovery- he doesn’t piss fart around with these things, he’s keen to start lapping the ‘old’ people in the halls of the hospital.

In nipple news, my friend Cara has graciously begun the design process for my new tattoos- she has, of course, already solved some design flaws- with the tattoos- not the nipples- and she is going to try and have a revised design for me when I meet with my plastic surgeon and breast surgeon in the beginning of May.  Although I am fairly married to the quote I have chosen for the tattoo- I thought it would be fun to make a contest out of it- whoever comes up with the best quote for my nipple tattoos gets a prize- I’m not sure what that is yet, but I promise to think of something great- maybe Just Dance 3!!

Last week I had to start telling colleagues that I am going on leave this summer for two months and that has been rather strange.  We’ve hit the point though where we are scheduling play readings of commissioned works and while normally I am present for any and all of these readings, I am simply going to have to miss some.  Just as I am going to have to miss our annual trip to Yosemite with the Cohen-Roberts clan, and the 50 mile MS walk that I try to do every year, and various other events that I look forward to with great anticipation.  Instead, I am grateful that I have enough vacation time and sick time saved up, from missing all of these much beloved events, that I can take two months off of work and it will not be a financial hardship.  And I know in the long run I am giving myself the possibility of a lot more of these trips in the future, by limiting my risk of cancer, but try explaining that to an eight year old.  Shit, try explaining it to a 40 year old.

The last topic, not nearly as fun as the living room dance tid bit- I did start putting my will together and I have to make decisions about who is going to hold my durable power of attorney and manage my advanced directives.  This is a tough call.  The way I see it, parents aren’t supposed to have to deal with these things with their children, that’s nature looking backward and I hate the idea of any of my four parents (that includes two steps who have always treated me as their own) having to make decisions on my behalf.  My sister seems the obvious choice but the nature of the responsibility is more than I want to ask of her in a year when she has had to examine her own mortality.  So I suppose I will just put everything in writing, as clearly as possible, and hope that these documents will be nothing more than filed papers, of little use for at least another 50 years or so.  By the way- who knew you could create a will on line for 69.00 bucks- which mind you is probably more than the value of all of my possessions.  But this is what grown ups do- we make wills to protect our children, we create advanced directives to protect our loved ones from impossible decisions, and if we are lucky, we dance around our living rooms experiencing inexplicable joy in the midst of all of life’s curve-balls.

The good, the bad and the inevitable…

In Uncategorized on February 26, 2012 at 2:04 pm

So this week can be categorized as an emotional roller coaster complete with 100 foot drops that make you hurl all over yourself and whomever might be in close proximity.  With that said, while the news isn’t stellar, it isn’t the worst news either.

To begin, papa BRCA, my dad, is going to have to undergo another surgery, he does in fact have another cancer in his ureter and so that, plus one kidney, has to go.  While the kidney does not show any signs of cancer, it’s connected to the ureter so they are basically a package deal where removal is concerned.  He’s fairly philosophical on the matter.  Although he doesn’t love the idea of having to have another large surgery and spend four or five days in the hospital, he’s glad that it’s only the kidney and the ureter that have to go.  He has always said that he not only views the glass as half empty but that someone has pissed in his- but in truth, this is some serious ‘glass half full’ perspective when you focus on the organs being left as opposed to those they are taking.  Now, it’s entirely possible that he skews the conversation so that his BRCA twin daughters (these kinds of twins don’t come with special powers, we are not taking the form of icebergs or rain clouds) don’t bemoan our fate and retreat to cells padded by layers of our own self-pity, but I don’t think that’s the case.  I think now, maybe more than ever, he’s glad they caught it, that they can get to it, and that post surgery he will be cancer free again.

On the good news front, Missie has finished her six rounds of chemotherapy and her last dose seemed to be easier than the one that preceded it.  She thinks this is primarily due to the fact that she was given extra fluids during her last chemo transfusion.  My former mother in law insisted that drinking a ton of water before, during and after each session of chemo made her recovery from each blast much easier, so file that away as one of the simpler rules to follow should you ever have to undergo chemo.  Now she’s going to take it easy for a bit, then do a big antique show in Texas before beginning radiation, which she is confident will not have any adverse effects.  I’m with her- I think the worst is behind her and that once this poison finishes making its way through her system her health and her new head of hair can reemerge better than ever.

And what’s new with BRCA carrier number three- that’s me.  I have begun scheduling my pre-op appointments and today when  I called to set up with two of my three surgeons, the office assistant informed me that my surgery is now scheduled for the end of June.  I was floored- I knew that sooner or later a date was going to come down the pike, but it seemed like a very far away date until she said it aloud and I put it in my calendar.  I hung up the phone and proceeded to tell my office mates that I was fine, but over and over again, I’m fine, I’m fine, I’ll be fine, it’s fine…I clearly did not appear fine.   What followed were a couple of emails, one of the most important to my ex-husband so we can begin planning how to bring my son along on all of this.  And this brings me to a larger topic.

To tell or not to tell one’s kids what the hell is going on- especially when there are genetics involved.  Let me preface this by saying that I don’t think this question is cut and dry or that any two situations can be handled in the same way, but I definitely have an approach that I live by in these matters.  One year when I was on the MS challenge walk- a walk where I have the opportunity to swap stories with lots of people dealing with the same issues I have faced, a woman suggested something to me that I have chosen to live by.  She said that because MS is such a mysterious and elusive disease by it’s very nature that she found that the more detailed information she could grant her 8 year old daughter, the more comfortable and at ease her daughter became with the struggles inherent in a chronic illness.  I decided to sit down with Santiago and explain to him what MS is and how it presents itself in my particular case.  He is clearly not afraid or even anxious about my MS.  On the contrary, he speaks about it with great authority.  Anytime someone brings up white blood cells he asks if what they are speaking of is related to MS- he is a seven year old expert in auto-immune diseases.  One might think this is too great a responsibility, but I have found he is far more at ease with knowledge than he is with secrets.  With the BRCA genes though, he has enough of an elemental understanding of genes to know that if Sabba (his grandfather), Aunt Missie and mom have something, that it means it could be passed along to him- so what to do.

I knew that the surgery was too large and would infringe too much on everyday life to not clue him in on the entire truth.  He now asks immediately what illnesses are related to the genes and which are not.  When we thought my dad simply had a kidney stone, he wanted to know if that was BRCA related and I insisted it wasn’t- looks like my seven year old has a better sense of these things than I do.  But I have found that by being frank with him, letting him know what this surgery entails and why it has to happen now, that he has settled into the idea that things will be difficult for a period, then I will be back to normal, whatever that means.  He has taken charge of things around the house that he has always allowed me to do for him, and today while at a soccer tournament two of the moms remarked that he insisted on setting up our chairs for us while I was signing in because it’s his job to help me out.

At the end of the day, even though I want desperately to protect and take care of him, I know these are good lessons and I know he is going to be a compassionate human being for having had to weather this storm.  I would take it from him if I could- just like any parent, but these are the facts, mam, and this is how I have chosen to live with them.

In terms of his asking about his own risks and DNA, and of course he did immediately because he thinks like a twenty year old as opposed to a seven year old, I assured him that if he chose to get tested, and as a man it’s not certain that he would, that he won’t do so until at least the age of thirty, so these problems can be categorized as grown up problems.  I explained as best I could that even if he has the genes, it just means he’ll have to be more diligent about check ups than most people, but that’s really the extent of it.  Knowing his Sabba’s history with cancer, he didn’t quite buy it, but he was willing to set that aside for the time being.

I’m not going to lie- these things test me as a mother and the cocktail of shitty genetics I have scare me in terms of my son’s future health and the health of his children.  But as my father has pointed out- what might he have done had he known- not had children?  That’s not an option that appeals to me, particularly.   So like all things in life, we will take the bad with the good and understand that some things are unknowable, some things are inevitable, and some things we fight with all the fight we can muster.  Thankfully, my ‘fight’ is not something I need to worry about having surgically removed.