And my world goes 'round again....

So, how am I?  How was the surgery?  How is the recovery?  Is it what I expected?

I am just now writing after a week...that should be your first clue.

But, I suppose that I should begin with my expectations.  Based on my research, and advice from friends, I really didn't know what exactly to expect, because as we know in this house, all too well, "Everyone is different...it all depends."  Some warned me to be prepared for 2 days to generally recover, some 2 weeks.   All, however, advised me to keep ahead of the pain with narcotics.  Okey dokey.

I sort of expected that I would feel pretty crappy over the weekend, and I was not disappointed.  I have had four children, and have bounced back well from each of these deliveries, so I thought that I would recover from this pretty quickly with this too.  I gave myself until Monday for drugs. 

Monday, I took less drugs, but as I got tired, and started feeling crappy, I took another Percocet and went to bed, which seemed like a sound decision.  I was still sore, but my incisions were looking good...the bruises had become green and yellow, a vast improvement over the black that they were. I knew that each day would be better. This part was pretty much to my expectations.

My concern though, was the headaches that I kept getting.  Over the weekend, I thought maybe I was getting a sinus infection. As the week began with the same headache, I became concerned that it was perhaps narcotic withdrawal. I should mention that despite the fact that this is more than the 10th surgery in 2 years in this household, we do not have a lot of experience with narcotics.  My kids just don't take them outside of the hospital setting. Hell, Brent hardly takes them outside of the OR anymore, tough cookie that he is.

My sister actually said to me in the hospital, "Don't try to be Brent...take the drugs!" Okey dokey.

But these screaming headaches, that Tylenol didn't begin to touch, this is not what Percocet was prescribed for.  By today, I called my OB's office, assured them that I had no concerns about infection, explained that my abdominal tenderness was improving, but inquired about the headaches.  I was hurting pretty bad.  Like an ice pick in the eyeball kind of bad.  I thought about amputation...at the neck.

My choices per my OB were:

1. Go to the ER for evaluation. (ummm...I cannot drive yet because of that surgery thing last week, and I was fairly certain that I was not looking an aneurism, or brain tumor, although with LFS, weird things do happen.  For example, I personally know 2 different people who are left with half a pancreas.  TWO. How many do you know? With LFS, nothing is beyond the realm of possibility, and I would not presume to know the limits of Gods sense of irony with regard to our family.)

2.  I could wait 2 hours and then take 2 more Percocet, to try to knock out the headache completely, as though it were a migraine. Stay in the dark, keep it quiet.  I have never had migraines, but thought this might be hormone, or lack of hormone driven change.  Also a contender.

3. Or, I could try coffee.

Clouds part, the sun shines, angels sing in jubilation.

If my brain were firing on all synapses, I would have figured this out sooner.  I drink coffee every day. Truth be told, quite a bit of coffee.  I hadn't had but half a cup since last Thursday because my stomach is queasy, which coffee would aggravate. And, I keep taking drugs that make me only want to nap, because my head hurts so much.  You are noticing the vicious cycle too?

I brewed up a pot, took some Zofran, washed it down with a cup of Joe, and Bob's your uncle.  I feel like a million bucks.  It wasn't narcotic withdrawal, or surgery, but caffeine withdrawal that was kicking my butt.  Yes, I am done with the Percocet now.  :)

All of the questions I had to answer about vitamins, prior experience with anesthesia, health history, cancer...blah, blah...nothing about my caffeine intake, which is probably not medically relevant generally speaking.  But, I think that the last time I 'quit' coffee was when I was pregnant with Olivia.  She is 5.  Both she and coffee make my world go 'round.

So, the moral of the story, boys and girls, is that you should call your doc right away if things seem at all wonky.

And drink lots of coffee. 




I

Figuring it all out

Well, I will finally know the answer.  The doctors always ask the same questions.  You would think that I would be better prepared.

"What is the first day of your last period?"   Today.  7/31.  I always had to guess at the doctors office before, not really sure, and make something kind of plausible up.  Unless Mother Nature has a surprise, this is the definitive answer.  For all time.  My ovaries come out 8/29.

On the one hand, this is a very good thing.  An end to discomfort and inconvenience, both physical and emotional.   I joked with my LFS friends that I am trading up in a way...cranky and irritable only every 3 months for scans, rather than the more traditional waxing and waning of my emotions on a monthly basis.  

I will be limiting my cancer risk.  But more important to me, by having these various tissues sampled and studied, I will hopefully discover what that overall risk actually is.  Less organs, more information. Information is good, and these organs can only go bad.

These answers might, in a way, provide some guidance with regard to our children.  Should I have mutation in my breast tissue, for example, but have not developed breast cancer, this could suggest that our mutation isn't one that runs aggressively in breast cancer.  Each LFS family mutation is different, and some families run brain tumors, or are rife with breast cancer, always with the sprinkling of other malignancies, of course. Of course.  

We are fortunate to have a short LFS story, because we haven't had a lot of cancer up our family tree, which would be difficult in obvious ways. But the flip side of that is that we have no family history.  Many screenings are slated to begin a few years before the earliest family onset of a particular cancer.  We have a giant question mark, which is its own challenge.  

I am a giant question mark, unto myself.

So, this surgery is a good thing.  

However.

I am not an automaton, devoid of emotions about this.  I did look up menopause to figure out what I will be abruptly jumping into. Plunging into that change will be no picnic. It doesn't alter my thinking about this, but it does pinch at my heart a bit.  How could it not?

I had Olivia just before I turned 39.  I felt comfortable playing volleyball and hanging out with friends much younger than me who also had little ones.  While much of the past few years have been a nightmarish blur for me, this surgery seems to be fast forwarding me to 50.  What the hell happened to my 40's? 

There is something about my corporeal identity that my girl parts seem to represent.  I am a wife and mother.  This is what I am, and what I do.  Somehow, as irrational as it sounds, I feel like this identity is somehow threatened, evidenced by the fact that my uterus and ovaries are now unnecessary, and are in fact a problem worthy of such effort, to eliminate them.

I have mentioned that there is often a disconnect between my head and my heart.  My head always wins, but my heart usually makes a good showing. This would be a prime example. 

It is my choice to have this surgery.  But among my menu options, while this seems to be the best one, it still is complicated.  Everything with LFS is more complicated.

What is simple (and obvious) is that I won't look different as a result.  Brent will always have giant scars and a limp, having lost his entire right hip bone. Lauren has a special part in her hair, one that most other girls do not have, a scar from ear to ear.  This is reminder of her losing a piece of her mind, literally, while I was losing mine in a more figurative sense. It occurs to me most of my closest friends with LFS have had mastectomies. 

These losses are externally apparent and naturally bring identity challenges in all sorts of areas, complete with looks, and questions.   I won't have those sorts of challenges. However, while I might not look different, I do know that I will feel different.

When I got my tubes tied, I felt 'broken' for a while,  understanding that again, I chose to do it, and the broken part, in fact was the whole point.  We didn't want more children.  I didn't want more children. (Hello?!! We were already a Nation, as things stood. I was no spring chicken).  But it was still difficult, somehow.  I chalked it up to postpartum hormones back then.

And maybe I should just chalk up this current mental battle to my ovaries giving me one last hurrah of hormones, simply because they can. A parting gift to remind me that there are always good things to be found with the bad.   It all in where you focus.  Sometimes, it is just hard to focus at all.

Like before tomorrow's scans.  

Next month, I will be done with PMS, in order to be in a better position with LFS.

Trust from dizzying heights

Greetings from 7,000 feet.  It is beautiful today and Brent and I are on our way to NYC, courtesy of Angel Flight.  I cannot say enough how blessed we are to have this kind of help.  We are going to change planes in Williamsport rather than in University Park, so that another patient can get a ride home.  It is amazing to me, the coordinated generosity of so many pilots.   

With this bit of time, I thought that I might tell you about my plans.  I met with my OB on Thursday to talk about surgery.  He is putting in for pre approval from my insurance company, which I am hopeful will go through. (Although, if it doesn't, I have programmed my case manager's phone number into my phone...I have someone on the inside who might help me with the appeals process if need be). If denied, I will appeal.

I really, really like my OB, who delivered Lauren and Livvy.  I actually have a piece that I wrote some time ago, that I will post later about picking doctors.  I feel like I have to run it by both Drs. OB and and Ortho before I do, as I refer to them by name, and out of deep respect, would like their permission before I post it. But I digress.  

My point is, that I would really, really, really like to use my OB for the surgery...it would be our last hurrah together, as I will have no parts left for him to annually check when it is done.  I trust him, and well, he is my guy for such things.  Should insurance deny coverage, I would need to have surgery at UH, where incidentally, my guy does not have privileges.  I would have to use someone else.

Because, given that the Ramers are sort of the goose who laid the golden egg for UH, I would be in a better position to work out something financially with them for of all things, removing my eggs.  If I didn't have irony and snark, you might as well cut out my tongue as well, because I would have nothing left to say.  You have been warned...this is going downhill from here.

So, if I get my wish and have the surgery at Southwest, which is affiliated with UH, but not in fact owned by them, I will need to get my girl parts shipped across town.  Last time that I needed to do something like this (who ever needs to do something like this?!!) Dr. Peters, my kids oncologist, was kind enough to drive across town with a box of dry ice and swing by FEDEX on his way back to UH, sending one biopsy off to Toronto.  How's that for service above and beyond the call of duty?

As my local geneticist is taking the lead on this one, having developed an essay that will detect our p53 mutation to within 2%, international shipping will not required this time, thankfully. So, I need a local medical currier...which we are thinking might end up being Dan.  "Honey, can you pick up the dry cleaning, and drop off my ovaries?"  Seriously, who makes arrangements for the transport of their own organs, outside of their body?  

I need to be sure to get a doctors note for my dear husband, in the off chance that he gets pulled over.  (I know more than a couple of doctors...which one is the best for such a thing?)  Because "What is in the box?"  could be a very awkward question to answer, when it is in fact, pieces of your wife.  Probably should rework the phrasing of that answer.

In case you missed the memo, I have a weird life.

So, the actual surgery...  You will remember that I was looking to have multiple biopsies done.  I went in to this talk with my OB with a particular idea...kind of a buffet or smorgasbord of my organs...take a little sample of each while you are in the neighborhood.  So, after a little geography lesson...there is sort of the continental divide in you belly (diaphragm) which makes loads of things out of easy reach if you happen to be doing a pelvic surgery.  Damn. 

But, there is the liver and spleen in the area (ooh, goodie!). However, given their vascular nature, they have the tendency to bleed ...and not stop.  I was advised that this was a very bad idea. Usually, such biopsies are done with CT guidance, which is a bit more than 'just taking a bit while in the neighborhood.' 

I have said that I would never presume to tell a pilot how to fly or a surgeon how to cut. (Writing of a surgeon as sit next to a pilot)  While I really am committed to finding some answers, I am not wanton.  I do in fact listen.   I may be crazy, but I am not stupid.   But I was bitterly disappointed, nonetheless.  

Bowels will be biopsied by GI in a separate procedure, the details of which I will be sure to keep to myself, and for which you will thank me, heartily.

Which leaves my tubes and uterus.  

"Are you planning on having more children?"

Umm.. No.  (Thinking, I would remind you that you are taking out my ovaries....and we talked about this you when you tied my tubes several years ago)

With extreme patience, and a hint of irony, "Do you plan on carrying a child for someone else?" (In my spare time?  with my spare energy?  With my 44 year old parts and sketchy genetics hovering around in the background?  Not likely.)

At which point he explained that really the only thing that my uterus could bring to me in the future was cervical or uterine cancer.  He could biopsy them, but really, it makes infinite sense to remove them.   

Dan will need a bigger box.

As I left to schedule it, an opening was available for Thursday.  As in this Thursday.  I feel odd, having been anxious and prepared to do this surgery for 6 months now, but Brent is doing hyperbaric oxygen treatments every day....and this would be the day after we return from New York.  Seems like a lot, and so waiting until the next slot in June makes more sense.  We go in June at this point.

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Flight number two...chatting with our pilot, I learn that he is from Maryland and works for NIH.  I kid you not.  We exchange IRB stories, naturally.  

The weather has changed dramatically, and we fly in solid clouds, which I have never done before.   I think that he said to within 800 feet of the ground, which he preferred was much higher, naturally.  I had no idea, sitting next to him, how disorienting it could be.  You must completely rely on your instruments, as instinct will help you not at all.  I have no doubt as to how JFK Jr got into trouble, because what you feel and what the instruments tell you do not jibe.  If you are accustomed to following your instincts, this sort of flying is a recipe for disaster.  

I am trusting in the experience of this pilot.  I trust the experience of my doctor, and of the doctors that we are traveling to New York to see.  Hoping that we all get on the ground soon...and safely.

Keeping up with the Jolies...or the Joneses

After hearing what we have to do, people often say that they feel that their worries or problems are not worthy of mention. The Ramers have it way worse than they do.

I was thinking about this today as I drove home from dropping the kids off at school and Olivia was still sort of waking up, so not actively talking my ear off as she customarily does.  Without having each American flag along the route pointed out to me, I quietly said my prayers and counted my blessings, as is my habit in such rare moments. And I thought about this notion of comparing our lives to that of others. 

I remember once, shortly after we moved here, Brent went to play with a friend who lived in another neighborhood.  When he returned, he exclaimed that they had an enormous house: beautiful and so big, that he got a little lost at one point.  Would we be buying a house like that someday?

I told him that I had no intention of moving for quite some time.  Our home was perfect for our family, with room for my mom, who has since moved in with us.  We have a wonderful neighborhood and live in a fantastic school district. I pointed out that there would always be someone who had a bigger house.  There would always be those who made more money.  We cannot measure our worth on this scale.  You cannot gauge your happiness in things, or in comparative terms.

I think that this idea translates beyond material things, actually.  I think you cannot find happiness comparing your life to others, your problems, your blessings…any of it.

I wrote recently about how I felt that Angelina Jolie might help bring some understanding of genetic predispositions to the general public, which then might translate to a better understanding of LFS…a place we could start our explanation from, without going all the way to the beginning.  (This often results in looks of confusion, disbelief, or best yet, a glazed over, vacant stare.) Given her giant celebrity status, she could bring attention to genetics and cancer, the way that Michael J Fox brought a public awareness and appreciation of the challenges of Parkinson’s disease.

It was interesting to hear from my LFS friends, and my friends that are breast cancer survivors (and for the record, there is some overlap here).  I was surprised at how aggravated some were with this whole business.  To me, it was as simple as someone famous, taking a strong preventative stance and providing some good PR, for lack of a better term, in sharing her personal story about cancer and giving some attention to genetic predisposition syndromes.

I suppose that because I seldom listen to the radio and never turn on the news, I probably missed a large portion of the ignorance out there (confirming the wisdom in keeping my TV off). So, I can understand the frustration of my friends with every idiot who failed to understand Angelina Jolie’s decision, or of what breast cancer brings. And further, by the fact that they felt compelled to confirm their ignorance by opening their mouth or commenting on the internet, denouncing her decision, one that most folks in this position happen to agree with.

But even if we didn’t agree, it is her body, her health, her decision…not public domain.  That, to me, seems pretty obvious.  And I could easily understand how difficult it might be to listen to such comments, and want to defend against such nonsense…maybe in violent frustration.

But what really surprised me was the reaction of some to the facts of BRCA, and Jolie’s decision to have surgery, thus nearly eliminating her risk.  Apparently, this was received with much public support, lots of “brave” and “courageous” accolades.  I personally do not have a problem with these adjectives, but some breast cancer survivors found this objectionable, which I found curious, until I listened a bit more.

I believe it is the opportunities that Jolie has been afforded that makes it difficult for some to drape her in laurel leaves as a ‘champion.’  Because she certainly has blessings in this life:  Financial independence such that she can hire help with laundry and kids; a platform from which to speak and a voice that people pay attention to; access to the very best doctors and the money to pay them without needing to  duke it out with an insurance company; genetic knowledge in advance of a diagnosis, one that afforded her the opportunity to chose a mastectomy, and careful reconstruction, when others had the same procedure forced upon them with a diagnosis, further insult to follow in the form of a chemo and/or a radiation chaser; Angelina’s ability to overcome her ‘genetic liability,’ (the way those with LFS cannot) and likely avoid cancer altogether. 

Let’s just say that there were strong feelings about all the gushing and hoopla among some LFS friends as well.  LFS is like playing in the major leagues of cancer.  Jolie just got called up and these vets were not necessarily impressed with the rookie.  She hasn't faced a fastball, the screwball...the curve. Does she have any endurance?  She hasn't got the experience, and some out there are making her MVP.

I was bewildered. 

While Jolie is genetically cursed with a mutation (BRCA) that she was wise to both respect and address as she has done, those same genetics blessed her with extraordinary beauty, which is partly why we are still talking about this…she is in the movies and we are Americans.  Forgive me for stating the obvious. 

And that twist sort of hacks some regular people off, especially those who have the yin of crappy genetics, without that yang of that exceptional beauty…which has led to her status, her platform, her financial ease, all of which are enviable.

But if I had had cancer, had this surgery thrust upon me, fought my way through chemo, through radiation, learned of my devastating genetic diagnosis which cannot be surgically mitigated, and struggled to care for my children while fighting with the insurance company like a superhero, or madman…I might not have warm and fuzzy feelings about this Johnny-come-lately who had done none of this, and who people pay attention to because of her beauty.  I can see how that would be irritating.

Well, now I get it.

From that perspective, she might not seem so much 'brave,' as logical, pragmatic and resourceful…using whatever is available to her.  And she has much available.  I do not personally begrudge her the resources.  Believe me when I say that I use whatever I can find to get through.  I count my blessings.  I know that I have many.

But ultimately, I think that it comes down to understanding the fact that there will always be those better off than you, and there will always be those worse off.  Using a dear friend’s description, LFS is 'the mother of all cancer syndromes.'   And thus, genetically, we are the top of the heap, cancer-wise.  We are the most exclusive club, but the sorority that no one rushes. No one has greater cancer risk than this small, scattered group of families from all over the world.

They struggle, anonymously for the most part, for generations, losing significant portions of their family.  They want help.  They want solutions.  They want a voice.  They want research dollars.  They want to be heard.  Mostly, they desperately want a cure. 

I am a newbie, without any sort of LFS perspective, or heavy oncological baggage in my family.  I lost my father to kidney cancer, although I have been assured that this was not LFS related.  It counts toward my cancer fear factor, this loss.  But it is not in the same league, not even close, to the stories of my friends, who have lost so many…children, siblings, cousins, parents, aunts, uncles… 

I have a different perspective.  A different story.  We all do.

I am grateful that Angelina Jolie shared her story.  She still garners my sympathy and admiration, because she seems to be a pretty private person when it comes to her family.  In sharing this, she has helped others, and I view it as a measure of generosity, this giving of her privacy, a treasure that she seems to hold dear.  The same anonymity that others find despair in, might be exactly what she craved as she went through her procedures, skulking around and hiding from the paparazzi.  You have to take the bad with the good, and we all have different challenges. 

I try not to compare my life, or situation to others.  This is simply my story.  And I try to do the best with what I have been given, and relate compassionately to those who cross my path.  I look with much gratitude to those who have helped me, which includes the insight and support from a beautiful group of strong women from all over the world, each rivaling any character that Angelina Jolie might play on the silver screen.  They are bad-ass in real life and deserve equal time, even if you do not know them and they never happen to grace the cover of People Magazine.

Just saying.

Angelina Jolie and LFS

Angelina Jolie made all kinds of news yesterday.  I am not a tabloid reader, and I have been far too busy this week to do more than a mad dash into the grocery store, where I otherwise might have stumbled across the latest Hollywood gossip while waiting in line.  

But even I, in my nearly Amish status, am aware that she had a double mastectomy, and breast reconstruction. (My FB page is littered with breast specialists and geneticists, representing every hospital and cancer organization that I am "friends" with...and there are many.  They are all talking about it.) She announced this fact in the Op Ed section of the NY Times, giving details of her family history, her genetics, and the surgical options that she selected, understanding the implications of the former two.

In my world, which has been electronically expanded to include folks with LFS from all over the world, such a drastic and radical decision is not that unusual.  I am acquainted online with many women who, given their family history, devastated by breast cancer, and their LFS status, have taken the same aggressive and strong preventative position that she has. Many more among them are contemplating this same measure. I applaud them all. It is fierce, and beautiful, regardless of common ideas about beauty and femininity. 

Angelina Jolie has a genetic predisposition to ovarian cancer (which her mother suffered with) as well as breast cancer. A  BRCA 1 mutation will significantly increase the likelihood of her developing breast cancer, somewhere between 54 and 87% over the general population, as I understand it (especially in rare disorders, numbers and studies vary, kind of a lot) and ovarian cancer between 40 and 50%.  These are some giant, scary numbers put in front of anyone. Even if you look only at the low end of that risk, it is significant.  Losing her mother to ovarian cancer makes this information much less theoretical. Given her personal experience with it, I suspect that there were some sleepless nights involved for this poor woman.

There was something in Ms. Jolie's statement that I read, that suggested to me that the double mastectomy was perhaps not the end of her medical to do list, but rather, just the beginning. She 'started' with the higher risk and more complex surgery, which sounds to me like an oophorectomy might be next, to take care of the ovarian risk.  I would love for her to get in line, right behind me.

I have very recently had my research approved by the IRB, to determine the extent of the mosaicism of the p53 mutation (LFS) in my body. It is known that the mutation is at least in my ovaries, and as they have completed their usefulness (I have four children and am over 40) I believe that it is time that they go, before they go bad, go rogue, misbehave...pick your favorite cancer euphemism.

Then, by this research, we can begin to learn if my risk is limited to germ cells or if I have a global risk.  This is an important bit of information, not just some idle curiosity about my innards. I need know if I should be screening, like my children are. It sort of matters. A lot.

I do not want to, in any way, minimize the seriousness of a BRCA mutation, but LFS is like BRCA...on crack. While LFS carries a similar elevated risk for breast cancer, we also face increased risk of brain, lung, adrenal, colon, bone...every cancer out there is fair game...every cancer out there is our game, and the odds are higher for us to play in every single one of them.  The female LFS carrier has a 90% chance of developing cancer by 60... Ninety percent.  

Stew in that for a minute.

The difference with LFS is that there are few risk reducing measures to be taken.  While BRCA patients can choose to live without breasts or ovaries in order to reduce cancer risk, (again, not minimizing the difficulty in arriving at such decision, or in taking such measures) but for LFS, bones and brain cannot be eliminated proactively.  My kids have parted with a bit of both, but that, naturally, comes after the oncological fact.  We scan, and we screen.  We do what we can to catch it early, our experience being that a small cancer is more easily managed than giant throbbing tumors (And we have had both).

So, aside from the red carpet, the international humanitarian missions, the galas, and waking up to Brad Pitt every day, Angelina really isn't so different from me.  (Ok, that is snarky). But in truth, if you peel away all of that, which really doesn't matter to me (except for the humanitarian stuff), she is a woman who knows that the genetic odds are not treating her kindly, and she really wants to be there for her 6 kids.  She is willing to go to some extraordinary lengths to take care of herself, so she can do just that. I believe that I can relate to this.

And also, I am sure, because she is a smart woman who has surrounded herself with some smart doctors, she is thinking about whether to test some of her children. Certainly, her love for them does not take into account biology...half of her children are adopted, I believe.  But while her love is blind to personal genetics, in this case, the biology does in fact matter.

And I can certainly attest to the angst that comes with wondering if you unknowingly gave your child the crappiest gift ever...and wondering if should you find out?  And what would you do about it, once you did find out? My prayer for her, or anyone who decides to test their children, is that they have the reassurance of a negative result.  Because, a positive one brings other difficult decisions...many of them.  And worries.

But also, as Angelina Jolie publicly proclaimed and demonstrated, some power. And that power to act, to decide, even when the choices are tough, that is the blessing we have in this day and age.

I return to that 90% number for ladies with LFS...and what we might do to make Lauren's life the fullest, in every way.  She has had two cancers by the tender age of 9...and while we feel that this has been more than enough, the research indicates that she might not be done.  What will Dan and I do with this information? I will let you know when we decide, but I can assure you that we have thought about things, been forced to think about things, things that the average parent of a 5th grader never contemplates, and likely cannot remotely understand.

So, with their giant stage, I am glad that the Jolie-Pitts have shared some of their story, if only because the public at large will now have some notion of what genetic predisposition syndromes like BRCA are, and consequently, might have a better chance of understanding LFS a bit better.

 

Mosaicism: A picture says a thousand words

As I have talked to many people, I have struggled to explain my research question and find a device that would appropriately illustrate the problem that I have.  Several months ago, I even google searched images of mosaics and thought that the commonly seen murals at Disney World might help, but they weren’t quite right.  So I just tried to explain it using more words…to varying degrees of failure.


The kids had given me a daily calendar in 2009, one that had a different piece of artwork for each day.  I had gathered up some of my favorites at the end of the year and I keep the stack of them on my desk, changing them periodically (I really like art).   Upon my last shuffle of the deck, I stumbled upon a Seurat, Sunday Afternoon on the Island of La Grande Jatte, that I think is common enough to be familiar to most  (It was in Ferris Bueller’s Day Off) and can help to explain my genetic issue.

Most people, genetically speaking, would be like a living room wall….painted all one color at the P53.  You are likely red, if we choose that to represent a normal cancer defense.  Lauren and Brent, with the genetic mutation in every cell of their body, are solid blue (So we start watching for cancer everywhere…hence full body MRI).  Me?  Well that is causing some head scratching, because it is unclear.  With a mosaicism, I am kind of like this picture.

So, the painting in question uses the technique of pointillism, whereby bits of individual colors are daubed next to each other, in order to make a full picture.  Your eye, from a distance only sees a park scene from the 1800’s.  But upon closer inspection, you can an infinite number of dots of various colors.  If you consider the piece as a whole, looking for the color blue, it is obvious that there are a lot of blue dots in the lake.  But what might not be obvious, is that there are also blue dots in the brown monkey and in even in the red umbrella (or should I say ‘parasol’...it was to keep the sun off because they had a healthy respect back then for the damage of UV rays, cosmetically at least)  
If blue represents the mutation that causes an increased cancer risk in a particular cell, we know that there is a fair amount of it in my ovaries (because I had Brent and Lauren). We are trying to understand if the only blue in my body is in my ovaries (the lake), or if there is some blue in the monkey and red umbrella (skin, kidneys, liver, pancreas…) as well. 

Because if the only ‘blue’ we find is in my ovaries, I do not need to do any surveillance elsewhere, which is expensive, not at all pleasant, and pretty time consuming.  But, if I do have an increased risk generally speaking, I would certainly want to do the scans, because we have seen the benefit of early detection first hand.

So, how do we establish the location of blue dots?  You have to get up close, genetically close, which means taking samples.  So, as tissue becomes available (like those skin biopsies and the uterine biopsy from December) I am trying to forward them to my geneticist.  I had a breast lump removed a few years ago (benign) which we would like to pull out of deep freeze, and look for ‘blue’ in the cells.

And in the meantime, we have to keep a pretty close eye on the lake.  So, in December, I went to my OB/GYN to get a look at my ovaries.  All cancers are different.  I know this.  But, as my doctor explained to me, ovarian cancer is particularly difficult to screen in order to find it early, and very difficult to treat once you find it.  He advised me to consider a hysterectomy. 

Oh, and this was before he found a sketchy looking uterus with the ultrasound that precipitated that biopsy.  So, I was advised that in addition to some other medical reasons to have my ovaries out, I have an elevated, if ambiguous risk of a difficult-to-detect and horrible-to-treat cancer.  Think on it. Okey- dokey.
No wonder I had a tough time feeling the Christmas cheer.

In the meantime, Brent had another surgery, and I had two questionable skin biopsies.  I sure would like to know if there is any ‘blue’ in those monkeys. (Hence my correspondence with the IRB)  What I do know is that we are busy folk here.  I don’t want this to come across in the wrong way, but I simply do not have time to get ovarian cancer (not that anyone should block that off on their calendar)  I cannot imagine doing what we have done over the past year and a half, with a health issue of my own.

So, to the extent that I might have been a little shocked and very surprised by the conversation I had with my OB in December, I have moved past it. In fact, I came in to see him this week with a plan, and a proposal that might have surprised him a little bit. 
I am committed to oophorectomy (ovaries out) and am asking him to not necessarily use a scope, because I want a general survey of my abdomen….multiple biopsies collected of the various organs there (while he is in the neighborhood) , so that my geneticist might look for ‘blue’ while my OB drains the lake, if you will.  This was the petition that I personally made to the IRB, because on paper this sounds very much like the request of a mad scientist, completely devoid of ethics.  But, for whatever it is worth, this was my idea.  Dr. Mitchell, my geneticist, never asked me to do this.

Aside from the increased short term risk of general abdominal surgery, there is an increased risk of osteoporosis if I remove my ovaries, which, as I pointed out, implies old age.  I am quite willing to live with that (forgive the snark). And with the answers that this procedure can provide, we can begin to know how I should screen.  Science will gain something in the process, I am sure, but between you and me, that is merely a peripheral bonus.   I am being ruthlessly practical and completely self serving about this.
There will be a lot of time and effort required in order to get it done, working through insurance, the IRB, negotiating with the hospital etc...  But I have seldom been so certain of a decision and a direction.  It is a matter of how to accomplish it, rather than if I should do it.

And there is great comfort in knowing what you should do, even if it isn’t all that pleasant.  I find indecision far more disagreeable.  But maybe you should talk to me about this after I have the surgery, and see if I maintain this opinion.