pairofgenes

Posts Tagged ‘flap reconstruction’

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.

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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.