To Boob or Not To Boob?

To Boob or Not To Boob?

By Kathy Reschini Sweeney, who has been puzzling on the question

I have breast cancer.  I can say that now without cringing.  The cringy part - what to do about it - has kept me in a state of consternation since the diagnosis in May.  

I have invasive lobular carcinoma.  It does not form tumors with clean edges.  It hides.  It spreads like a river delta running over big rocks - no discernible pattern.  It does not "image well" which means, no shit - they can't see it on most tests, including the new 3D Mammograms.  What showed up as an 8mm tumor ended up exceeding 5.6 CM and they still didn't get it all. It is, as my wonderful surgeon said "Our Nemesis."  I know from Nemeses.  They can't be trusted - they require the big guns.  So I got them all out.

I read studies; I researched; I spoke with Survivor Warriors and Fighting Warriors and medical experts of all kinds.  I got some information about survival and infection rates and other important information in ways both direct and sneaky.  My cancer is sneaky so I figured it was fair.

I had surgery in June - a partial mastectomy with sentinel node biopsies.  Lymph nodes were clean. The margins were not.  What that means is that there is more cancer in there - at least at the edges of where the existing cancer was removed.  How do they get close but not get it all?  I am quoting the Docs: "Pure Luck".  That's right.  They can't SEE the cancer in there.  They can't TRACK the cancer in there.  They just hack out part of your boob and hope for the best.  I know that sounds terrible but it's the truth and I am telling it.  THEY DO NOT KNOW.  This is perhaps the toughest thing about The CANcer (you need to whisper it that way when you say it ;)).  You have to accept that you will never know what caused it.  You will never know why it picked you.  You will never know where else it is lurking.  For someone like me, who counts on finding answers and ways to FIX things via research, clinical thinking and brainpower, this is the ultimate nightmare scenario.

But at least I knew more about my enemy, so I set about learning as much as I could, given the meta limitations.

I had genetic testing done - my grove of family trees is full of cancer branches.  But - HURRAY - I don't have either of the BRCA genes.  Neither does one of my sisters - which is kickass news for the rest of the family including our daughters.

I had tests - lots of tests.  I volunteered for every research project and clinical trial in the tri-state area - and I signed a consent for all of them back in May.  One called.  I ended up in a clinical trial for breast imaging - they are trying to find a better (and less expensive and less terrifying) option than MRIs, which tend to produce false positives.  MRIs, in case you've never had the pleasure, are huge machines with a hole down the center - like a round coffin, closed and without the cushy lining.  Okay - maybe that's a bit much - how about a water slide tube, except you can't move and there is nothing fun about it.  Once they shove you in there, they proceed to bombard you with every irritating sound you can imagine.  The sounds change, you can't anticipate what will come next, and if they had asked me to give up state secrets to make it stop, I would have.

The new technology is better - there is a new application of the 3-D mammogram imaging called contrast enhanced breast tomosynthesis.  They inject a dye so they can better discern how different cells react.  I also did a study using a machine designed for nuclear brain scans and bone scans.  Fascinating - I was injected with radioactive isotopes designed specifically to react with breast tissue and then did extended mammogram images (10 minutes per image) from different angles.

The results came back: more cancer in my right breast.  Nothing on the left.  Okay. Knowledge is power.

In case you don't know me and haven't been following this, let me insert at this point that I went into this wanted a bi-lateral mastectomy.  Because when there is something inside you trying to kill you, you want it OUT.  GONE.  OBLITERATED.  Moderation?  Screw that.  Get that shit OUT.

My surgeon, Dr. Bonaventura, was patient with me.  She told me from the beginning she would respect my decision.  Then she showed me the studies, and the test results and the long-term survival rates.  Over the course of the next couple of months, I came to agree with her motto: there is no reason to remove healthy tissue.  One of the ways I finally got there was the grim realization that boobs are not just for feeding babies and sexing.  They're not accessories that you can just pop off when you don't want them any more.  They are part of your body and they contain lots of things that support the systematic operation of the whole shebang.  In other words - they are not legos that can be removed and replaced with no problem.

Not everyone is lucky enough to have the options I have.  Some of my dear ones really had no choice - if the cancer is a certain type, or has spread, or if your genetic tests come back positive, it's a no brainer - everything has got to go in order to prolong your life.  

Does it infuriate me that - in all the years we've spent allegedly focused on breast cancer research that butchering ourselves is still the only option in some cases?  You bet your ass it does.  And the other treatment option - after ALL THIS TIME?  Still poison (aka chemotherapy)  - for some people that's worse than the butchering.  But that is a blog for another day.

I could have more tissue taken from my right boob in an effort to get 'clean margins' - which means no traces of cancer outside the area they cut out.  I ONLY have this option because I have big boobs.  But then I would be looking at living through this every year because I KNOW -from the scans and the biology of this type of cancer - that there is more in there.  We just don't know where it is yet.

So I am having a mastectomy on Tuesday morning.  I am having it at the same surgical center as all of my other procedures - on an out-patient basis.  My surgeon and anesthesiologist (who have been with me since this all started back in 2012) agreed that I am healthy and strong enough to try it this way.  If there are complications, they will transport me to Magee.  But I don't want to spend any more time in the hospital than I have to.  Which is also another blog - or if you happen to know a nurse, just ask them.  I will have a tube draining stuff post-op, which for some reason scares me more than anything.  Another blog.

I keep looking at my boobs.  They are in good shape, considering.  Even the reconstructive surgeon was impressed.  Told them I used to be a stripper.  Which is NOT true.  I cannot deny, however, any number of wet t-shirt victories I may have experienced.

They are real, and I have to admit, back in the day, they were, in fact, spectacular.

And now one of them has to go.  This makes me very sad.  Which is odd - because it's just a boob.  It's not an eye or a brain or any of the things that operate the five senses or my ability to walk or talk or write or hit people in the face if necessary.  Plus, I still have one that works.  The right one doesn't work any more.  And I am told by other Warriors that it probably never will.  The previous surgery wrecked up the muscles and the nerves in there.  So really - if it doesn't work, and it already resembles a road map of scars, what's the big whoop?

I don't know.  But it's a whoop.  It's an enraging, crying, cursing whoop that makes me unfit for human company right now.  In a couple of days, the girls are going to be split up for good.  But me?  I will still be me.  I am a better me than at any other point in my life.  I endured a lot to stay me.  I enjoyed a lot and laughed a lot and fought a lot and fixed a lot and gave a lot and took a lot from my family and friends to stay me.

When I was in my 20s, I was physically beautiful.  If you didn't know me then, ask for a photo.  I didn't really understand the potential of being physically beautiful - which is just as well - because that is some shallow stuff, using looks to get what you want.  But in my 20s, I was a mess inside. Lots of reasons - nature, nurture, criminals, weaknesses - a zillion reasons.

Now, I am not beautiful on the outside.  I am fat and scarred up and my hair is no longer long and glamorous - I have to wear glasses which I hate, I wear crocs and big shirts instead of FMPs and corsets and I haven't worn make up in a decade.  But ME - inside me - where the important things are - compassion and love and fortitude and gratitude and sympathy and empathy and the ability to give?  By the Grace of God, I am stunning.  I am a beacon and a source of great love.

And no damn cancer is going to take ANY of that from ME.

I need to thank everyone for all of their prayers and support and implore you to keep it coming.  Because without all of you, I would be in the fetal position under my desk. ;)  Especially to other Warriors out there - whether you are in the Fight, or years out - remember - we fight together; we win together.

xo

Kathy

 Someone did ask for photos and I tried to put them in a comment but it didn't work.  So here is me circa 1980-1988 - I don't have very many on my computer but this should give you the general idea! :)

 

Comments

[Gaylin]

Yes you are still beautiful, inside and out. And yes, you will get through this because the other option sucks.

[Hank Phillippi Ryan]

You are amazing. ll I an say. No, I can also say you are an inspiration. And that I love you.

[Karen in Ohio]

Kathy, you are not only beautiful inside and out, but you are one damned amazing woman.

Visualize clean margins, and radiant health. I'm helping you with that from my end.

[A Facebook User]

You are a Warrior Queen and, believe me, the drains are no big deal. They just hang off your body just like little fluid filled grenades. You will empty them and keep track of the amount of fluid and bring this info to your next appointment with your surgeon. You will kick ass, girl. You can depend on me for support and prayers. XOXO

[Storyteller Mary]

I think I'll put this on my wall of aspirations: I am a beacon and a source of great love.
You truly are. I love you and am so honored to know you. Healing hugs.
. . . and yes, I would love to see that younger photo, just because . . . <3

[Tom Barclay]

I'm thinking about what Mary Lynn would say to you right now. It would be something like this:

"You've done really, really well. You have stacked the odds in your favor in every way you can. You have great medical support. Being less fearful than most, you can go forward with courage, knowledge, serenity and belief in a good outcome. Your friends and family are pouring strength and the power of life into you. Failure is unthinkable."

She would then say, "The fucking granchi have messed with the wrong Mary K. They will not survive the experience."

Much love and many more years, bambina.

[Cindy Conte]

You go girl. You have an army behind you. You are loved. As for the drains, you will be fine. Only a phone call away. love you sister in many ways.

[Kathy Reschini Sweeney]

Photos of me - from around 1980-1988 - I don't have many on my computer but these should give you an idea:
/Users/mksweeney/Desktop/sc0008ee15.jpg
/Users/mksweeney/Desktop/sc001fcd40.jpg
/Users/mksweeney/Desktop/sc001de572.jpg
/Users/mksweeney/Desktop/sc001f4aec.jpg

[Cynthia D'Alba]

You are beyond awesome. So much stronger than I might be.

Your links of photos didn't work :(

Stay strong and kick some serious cancer butt. God knows you're too stubborn to let something like cancer get to you.

Love and prayers and white light flying from Arkansas to you.

[Kathy Reschini Sweeney]

Sorry that did not work - I put some photos at the end of the blog. In the first photo, I am the second one from the left.

[Ramona DeFelice Long]

Your words are beautiful, as are you. You are the cavalry that brings humor and courage and intelligence and love.

Tuesday morning--holding you in the light, sending positive energy, crossing fingers and toes. All that good stuff.

[kris]

Did you know it's possible to pray while giving someone a standing ovation? It's true. And it's what I just did for you.

Keep us posted, hon. If ever anyone could rock a mastectomy, it's gonna be you.

[William Simon]

Though I never had the pleasure of meeting her, I do believe Tom's approximation of what Mary Lynn might say is completely accurate.

I am going to reference back to a war cry from the original TLC: BITCHSLAP CANCER!

If anyone on this earth can do that, it is you.

[Steve]

You have always been one tough little girl. The same one I first met in third grade. Still tough and still little.

[Elaine Viets]

Kathy, you are still beautiful and strong and funny and smart. As for the drains, I've had 'em -- including one in my head. It's the IDEA that's so freaking awful.
None of us look that way we did at 20. I'd like to look 20 again, but I'd rather BE the person I am now. You've bared your soul for this blog. Now show us the fighter we know you are.

[Larry and Elaine Judge]

My goodness, you should have been put in a convent back in those days.

Lately, I am getting ready for a reunion, I have talked to lots and lots of people who have shared stories with me about how they didn't know who they were or didn't feel comfortable with themselves until they added a few years. I think that confidence in who we are on the inside is a great thing.

YOU definitely know who you are. We do too, and we like you a whole big bunch "just the way you are."

Prayers from your Godmother and Uncle Larry.
Everything is going to be OK.

I'm sure "Punky and Ro" are with you too.

We all need a ride on that magic carpet.

[Dana]

The good Lord above along with an army of angels, and friends, are with you. Kick it's f'n arse Kathy - you are the ultimate warrior ! Blessings, strength, courage and prayers to you!

[Pam Purtle]

You are more beautiful on the inside than you ever were on the outside. Fight the good fight. I don't want a world without you in it~

[POM]

Loved this blog and I heard your voice in my mind while I read. You are so real and true. YOU ARE STUNNING - - - your mind, in addition to your heart's compassion, love, fortitude, gratitude, sympathy, empathy and ability to give. You have given so much to so many and we cannot thank you enough for the freakin' awesome example of awesome that you are. Through your amazing faith, feel the warm embrace enveloping you in prayer. You set a remarkable example. <3

[Nancy Martin]

I am so with you on the "if it's bad, get it OUT" decision. Jeff had prostate cancer and was given four options, none of them appealing, and he was willing to wait until a fifth showed up. No way, I said. Get it out NOW and damn the consequences. Good decision. It will be a good one for you, too, baby. We love you any way you are!

[peach]

Thinking about you and praying everyday as you, the Warrior Queen, ride into the battle of your life.

[Maryann]

I can only add to the love and prayers and healing wishes because right now I'm fighting a tear or two that your bravery is going through another test...and I know you'll come through it with flying colors because you are you...gutsy, blunt,gorgeous in any light, and indeed as Peach said, The Warrior Queen.I'm glad if any of my prayers and thoughts help, but I need you to know that you help us in more ways than you can imagine just by being who you are (see previous inadequate descriptive adjectives). Love and gentle hugs, my friend.

[Carol Williams]

Best decision, and I'm sending love and healing prayers your way Kathy! I'm really touched by your blog - you are feisty and remarkable!

[tac]

Prayers coming your way for a fast recovery and the cleanest margins ever. Spic and span clean.

[Harley]

You always, always knock me out. You are an inspiration, Kathy. I love you. This blog is the best thing I've read in a long time.