Freddie Kreuger’s Handiwork, Beheading Medusa and Making Like Flat Stanley

Freddie Kreuger’s HandiworkBeheading Medusa and Making Like Flat Stanley 

Luckily very few people in our lives have experienced breast cancer.   Even fewer have had a “double mastectomy with delayed immediate reconstruction” as the process we are in the middle of is referred to. Uh, does that mean it’s delayed or immediate?  One of 10,000 questions we’ve explored.

If only it were elbow cancer, we could pull it out and show it to anyone who asked.   Alas, it’s breast cancer and sometimes people are weird about breasts.   Whipping them out in the middle of Costco is generally frowned upon, though it has almost happened. Twice.   In spite of that, almost without exception each kind soul in our world actually DOES seem keen to know more about what’s going on under the hood, if only from a place of understanding and empathy.

Your pectoralis muscle went where?  

You have the equivalent of two small deflated basketballs stitched to your chest wall why?  

You're STILL relegated to lying flat as much as possible?  

Medical Stuff Alert: Yep, this is my blog, it’s what we are experiencing and a lot of it isn’t pretty. Clearly the level of detail is what I’m comfortable sharing publicly… moreover I actually find it cathartic. In this post are a couple of photos of stuff that’s a lot less fun than triathlon.  Don’t worry, there aren’t any full-on shots of my nekkid breasts, but there are some close-ups of where the drains came out with some red fluid, an incision, etc.  If gory details aren’t your thing, please, by all means pass on this one! The last thing we need to do is scare people away - we need all the mojo we can get!

 Rest assured, you can’t offend us with your mojo proclivity. 

It’s gladly accepted in all forms including smoke signals, wizardry, drunk texts and karma points. 

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FREDDIE KREUGER’S HANDIWORK: DECONSTRUCTION

The “Deconstruction Surgeon” is a fabricated title created early in this adventure when we came to realize there would be two surgeons involved at the initial surgery.  More than one of a thing and I tend to get confused.  Then we learned there could potentially be an additional or several additional surgeries.  We now know there will be at least one more surgery, hopefully the final reconstruction in a couple of months.  The deconstruction surgeon’s official paying title is a “Surgical Oncologist” which essentially means she has a shit ton of education and specializes in hacking out cancers. I see her “one job” as simply: Help me live.  You know, little things.

To begin, an incision was made at my rib cage in a 180 degree semi-circle on each side. Then, the surgeon went to work carefully scooping out the breast tissue and a few lymph nodes for testing. The nerves and blood vessels to the skin were severed in the process.   Although the nerves are not expected to regenerate, if all goes well the blood vessels will.   As she explains it, the tricky part was scooping out as much breast tissue as she could, especially on the right side.  That's the side where the cancer was found, lest it harbor a rogue cell with a wild hair up it’s bum.  The surgeon balanced the precise scooping with leaving enough fat on the skin that blood vessels would have a place to regenerate.

These ain’t no augmentation incisions, Toto. Sixteen days post-op.

With all the deconstruction complete, my thin, fragile breast skin was handed over to the “Reconstruction Surgeon”.  Her official title is a “Board Certified Plastic Surgeon” and by all accounts she wasn’t given a lot to work with.  I can only imagine the stink-eye from across the operating table.  Her “one job” as I see is is to take what’s left and make it as pretty as possible.

Placing a final breast implant at this surgery, our “Plan A”, went out the window pretty quickly.  Stretching the thin skin over an implant and hoping for the blood vessels to regenerate would be an exercise in futility and a recipe for necrosis.  Google “necrosis” with care - barf.   Instead, she lifted and reorganized my pectoralis muscle and placed “tissue expanders” where the final implants will go.  Think of these as small deflated basketballs that are tacked to my chest wall with sutures at 3, 6 and 9 o’clock. The expanders will be inflated in a series of saline injections to stretch the muscle and skin such that it can accommodate the (modestly sized!!!) implant.  This is our new Plan A, formerly Plan B.

For those in the back of the class: This means my PECTORALIS MUSCLE WILL BE IN FRONT OF MY BREASTS!  Nutbar. A "Something About Mary" reference comes to mind.  How did you get the frank above the beans?  I can definitely already see and feel the difference and am still getting my head around that.

Me: "Doc, how will this impact my swim stroke?"

Doc: Blank look.  Blinked twice.  Moved on.

Finally, the plastic surgeon stitched me back up and placed a “surgical drain” on each side.  These drains went from inside breast area down and out my side at the rib cage.  Freddie Kreuger would have been proud!  The drains soon became known as my “Medusa tubes” and the loathing commenced almost immediately.

Cranky.  That’s how I felt swinging those dang Medusa tubes around the house all day.  

Oh and desperate for a shower.  

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BEHEADING MEDUSA

Once the drug-induced fog lifted I became keenly aware of the gross-factor and the practical implications of the surgical drains.  Seeing and feeling them all day and all night provided no mental respite from being in recovery.  The surgeon didn’t want anything even close to tight-fitting on my skin, including the specially designed camisole with pockets to hold the drain bulbs. Getting dressed for the rare “public” appearance for a doctor’s appointment produced a tear-fest of clothing changes and tube wrangling.

Kinda like this but only one per side. And not smiling.  

The timeframe estimates for the drains to come out varied wildly and ultimately depended on the output of fluid.  It needed to be below a certain level for three consecutive days and luckily there is an app for recording that!   I found myself carefully squeezing fluid out of the bulbs over the bathroom sink channeling a low output,  fantasizing about being able to shower and longing to wear a simple oversized t-shirt.  In the end after all that obsessing and measuring, they came out rather abruptly.  A bandage had become askew and a semi-urgent trip to the doctor resulted in a surprise beheading of the Medusa tubes.  She didn’t even see it coming - oh happy day!  Mark videoed the retrieval and when I finally got the nerve to watch I was seriously impressed with how much tubing came out from under the skin.  And seriously glad I didn't watch. Ewe.

Woulda been nice to actually get to wear that camisole that's scrunched around my waist properly.  

Just sayin’.

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MAKING LIKE FLAT STANLEY: LAY FLAT.  LAY FLAT A LOT

Standing nekkid in front of the reconstructive surgeon at the first post-op appointment I knew right away she didn’t like what she saw.  The right breast was much more swollen and red than the left.  “How long has it been that red?” she asked with a wrinkled forehead.  “Uh, since I first saw them… maybe day two.” I offered.  She poked suspiciously at every bit of skin, watching the capillary reflex with skepticism.  Her assessment?  “It’s struggling.”  Gah.

It’s not bedrest, but for now gravity is not my friend. The basic physics of it is my breasts will feel gravity whether I’m standing in the kitchen or sitting in bed.  That gravity will cause fluid to pool, increasing swelling,  thus pressure and thus less blood vessel regeneration mojo. The right side is probably struggling a lot more because it got scooped out a bit more thinly.  The resolution is to lay flat.  A lot.  I get it, in the big picture I’d much rather forgo training right now then face skin grafts. I'd love to lose more weight off my butt, but not that way!

Making like Flat Stanley looks pretty much as unexciting as it sounds.  

Like this ^. Or this ^. Or this ^.  

I do feel that the Kona Cervelo T-Shirt plus two cats should count as extra mojo!   

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CURRENT STATS: BECAUSE LIFE WITHOUT STATS IS NO FUN!

Days Post Deconstruction: 16

Mojo Level:  3/10 - Already hit what I hope is rock bottom and on the way back up!

Gratitude Level: 10/10 - Where to begin.  Clearly there will need to be an entire post on this.

Perspective Mantra: Thankful to be battling to get back in the saddle instead of fighting for my life.

Restrictions:  Lay flat a lot.  Permission for "gentle stretching" but not to raise the heart rate above elderly couple stroll level.  Don’t sweat.  Don’t get incisions wet for more than a 5’ shower.  Don’t go disco dancing on New Year's Eve.  Most importantly, don’t whip ‘em out at Costco.

The permitted "gentle stretching" in cat pajamas while Mark generates mojo.  

Good times!  

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With much gratitude.  - Jenn

Plan B

PLAN B

“If things start happening, don’t worry, don’t stew,
 just go right along and you’ll start happening too.” - Dr. Seuss

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OFF WE GO

The big day came on fast!   I was glad not to have too much time to dwell on things and we got underway quickly. I hit up a fast food joint at 2 AM hoping that nice juicy burger would hold me for the eight hours ‘till surgery.  Next stop was yoga at 6 AM and yes, that burger was still there.  A little too much still there but we made it.  From yoga we went directly to our first stop of the day: Nuclear Medicine. This is where they inject you with nuclear medicine dye.  The dye would create markers in lymph nodes the surgeons could see and subsequently pull for study.  The shitter of it is, they inject that dye via eight injections into the nipples.  Seriously, you can’t make this stuff up.

Meltdown #1 of the day and haven’t even made it past Nuclear Medicine!

The next two hours passed quickly as we got set up in the pre-op room, Tricia joined us and the nurses got busy hooking everything up. It appeared the 11 AM “go time” was right on track.  The last thing I remember is them offering me a “cocktail” that would help me relax and then it was “lights out” to leave all the worrying to someone else!

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LUCIDITY AND PLAN B

Waking up in a hospital is not as straightforward as you might think.   Apparently six hours had passed since I’d been wheeled into surgery, yet it felt like the snap of a finger.  I was placed in a recovery room where I was allowed visitors one at a time. I wasn’t quite lucid, often cranky and certainly wasn't rational.   First Mark, followed by Tricia, Heidi, then Michelle.  Poor Mark, he got the brunt of it.  He delivered the news that they were not able to do the one-step procedure and had to place the expanders. When all the scooping was said and done there wasn’t enough fat left under the skin for the vessels to rebuild if it was stretched too tightly.  This put me at risk for losing some of the skin which would have slid us waaaaayyy down to plan D, E, or F.   Apparently I went through a speed round of all five stages of grief including a long pause to wallow in the anger stage.   Luckily I don’t remember that and as far as I know my head didn’t spin around and spew green stuff. Or maybe it did, and they’re just nice enough not to tell me.

General mood in the recovery room.

In any event, this means I will have to have at least one more surgery to swap out the expanders for the implants.    This will likely be two or three months down the line… right about the time I’m finally healing from the first surgery.  Boooo.  Oh and I’ll need to go in for weekly “fills” to bring things up to size.  Still…. perspective:  it’s better than weekly radiation or chemotherapy.

We are on for Plan B. 

This will require at least one additional surgery in a couple of months.  

Woe.

Eventually the whole party was moved to our room for the night.  I wobbled in and out of consciousness and continued to asked the same questions over and over again. It hurt.  Actually it hurt quite a lot.  It hurt across my chest and especially under my armpits where they’d pulled the muscle off the rib cage poking around for lymph nodes to biopsy. I tried to be brave for Mark and our friends.  I tried to be polite to the nurses.  

It was time for Tricia to go - she’d been there all day and managed to keep Mark thoroughly entertained. Heidi and Michelle made their way out too and we were alone for the night.    Once I was more lucid, I started to get my head around Plan B and the silver lining of being able to control the outcome a bit more. Mark and I settled in for the night though inevitably we we woken for vitals shortly after falling asleep. Conversely it seemed to take forever to round up a nurse when more morphine was needed.  We did get breakfast in bed though and it wasn't even half bad!

Tricia’s daughter offered a loan of her “wubba” which turned out to be the best blanket in the whole hospital!

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GETTING OUTTA THIS JOINT!

The next day I awoke with a peek-a-boo view of Mark through all the hospital apparatus. What a Trooper.  I’m a lucky girl indeed.  We got ourselves ready for an “imminent” discharge according to the nurses,. Turns out “imminent”at a hospital means like 3-4 hours.  Gah.

Mark’s lovely accommodation for the evening.

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THE NEW NORMAL

We are still trying to figure out what the new normal looks like around our place. So far it seems to be lots of naps and lots of meds!

Naps and Kittehs Cure Everything

The new normal?

My mom set my ORIGINAL blankie. Tricia approves.  AND it works.

Yes, there’s an app for managing all that…

It wasn’t quite a shower but it was close and I felt like a new woman!

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GRATITUDE AND WHAT’S NEXT

The support we have received has been overwhelming. To each person who sent a little mojo in their own way: THANK YOU!  To anyone who has said “Let me know what I can do…. Here’s a list.  Hey, life is better with lists!

1 - Get a mammogram, have your wife get a mammogram or have your best friend get a mammogram. Guys can substitute a prostate exam. Then send us a card and tell us how much fun it was!   NOT KIDDING about the exams, fun optional.  :-)  Can you imagine the joy of catching something early for someone that wouldn't have gone otherwise?  No better Christmas present!

2 - Folks insisting on buying something that makes us feel warm and fuzzy:  We always appreciate donations of time or money to local animal charities. It has absolutely nothing to do with cancer and that's the point. :-)

3 - Folks insisting on buying something and/or food: Pre-Made Paleo offers gift cards and they deliver meals that are already cooked and can go straight to the microwave or the freezer. That would be perfect for us.



Thanks to those that have offered to stop by and visit.   At the moment imagine I am not up for visitors.

  Imagine a Medussa-esque zombie with bloody tubes waving wildly about attached to a semi-lucid patient.  Not gonna end well. I have my first post-op appointment early next week and may open up for visitors then if anyone still cares to drop by. 

 

Of note, we have already received the gift of THREE mammograms.  Early detection saves lives. THANK YOU!!

On Adversity, Boobs and Silver Linings

ON ADVERSITY, BOOBS AND SILVER LININGS

DECEMBER 2016

Kona is a solid two months behind us and I’m still over the moon from the experience.  To have Mark, PLUS my family PLUS my closest friends there AND nail the race?!?  Finishing my tenth Ironman with a personal best IN Kona?!?  I...   Can’t...   Even...

A sage teammate with years of experience advised something to the effect of “package that experience and that moment up in your head, put it on a shelf and pull it out when you need it.”  I did not realize I would need it so soon.

This image represents my “moment” to draw strength from sometime in the future.  

I mentally packaged it up, put a bow on it, and placed on a shelf for safekeeping. 

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POST RACE REFLECTION AND MOVING FORWARD

Reflection: An assessment of our life and lifestyle brought me to a couple of things very quickly:

1 - I love to swim, bike, run and do yoga. Therefore, I continue to swim, bike, run and do yoga.  Not too complicated, really!

2 - I like the Ironman distance and want to continue to race it. And I do mean RACE it.  I want to continue to improve even as age inevitably begins to change the definition of “faster” to “faster in my age group”.

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TUNE UPS

With training at a manageable volume, a more sensible normalcy resumed in the Edwards household. The focus shifted towards Mark and getting him up and running (literally!) for Lavaman.  With a cracked toptube relegating his P2 to the trainer, a second P5 joined our stable. We fussed around with bike fits, crank lengths, and other tweaks.  I scheduled all those tune up appointments that get pushed out when you’re in the middle of something awesome.

Dentist: Check!  AND no cavities.

Optometrist: Check!  Still no official “correction” needed but this 42 year old gets to start wearing reading glasses.

Blood Work: Check!  What havoc has all this racing done to the system?  NONE.  Lipids all still silly low, cortisol within a reasonable range, hormones all normal.  Phew.

De-Lumpify: Check!  Random (benign) lumpy thing hacked out of head.  Glad I waited on that one… staples in the noggin are NOT conducive to swimming!

Mammogram #1: Check!  Just the simple screening mammogram. I’d had one at 38 and one last year at 41.  But then… a call back.

Result of Mammogram #1

Mammogram #2: Check!  This time a “diagnostic” mammogram.  Hmmmm. It showed some “microcalcifications” that weren’t there last year. Google assured me these were almost certainly nothing of interest and started popping off on the ethics of too many mammograms, false alarms… yadda yadda.   And then…  another call back.

Apparently that little constellation of white specks is less than ideal.

Biopsy: Check!  Surely I was one of the statistics that would undergo another “unnecessary” biopsy.   It wasn’t “simple” and it wasn’t anything close to “painless”. Apparently small boobs and a perplexing immunity to anesthetic doesn’t bode well.  I left the biopsy bruised and irritated at the unnecessary indignity of it all.   And then… the call.

Hello Jennifer? 

Can you speak privately about your biopsy results?  

Your result came back.  

It tested positive for breast cancer.

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HOW TO BECOME A FULL TIME MEDICAL STUDENT AT 42 YEARS OF AGE

DCIS (ductal carcinoma in situ) is a non-invasive breast cancer. Left untreated, as many as 50 percent of DCIS cases progress to invasive breast cancer.  What that means to us is: I have a breast cancer that isn’t scary now, but could turn into something scary if I don't hack it out.

What followed was a whirlwind of appointments, exams, tests, research and consultations.  We ended up exploring two full paths and treatment options all the way to the point of scheduling what I’m calling the big “deconstruction and reconstruction” surgery.  For simplicity, I’ll call one the “Valley” path (referencing Valley Medical Center in Renton) and one “Good Sam” (referencing Good Samaritan Hospital in Puyallup) which includes providers that work nearby or often with Good Sam.

These paper gowns are NOT flattering.

Exploring two full treatment paths means meeting with two intake nurses, two “nurse navigators” (now that’s quite the title!) two oncologists, two deconstruction surgeons, two reconstruction surgeons….  and on and on.  I believe approximately 3,188 appointments were attended with 333 providers and I’m only half joking.   I wised up and brought a sheet of return address labels to slap on the top of intake forms and save my fingers from writer's cramp.  I also learned to carry my own records (some on disk) including mammograms, the MRI and pathology reports.

Anatomy of a meltdown seven hours into a multi-disciplinary appointment at Valley.  

I felt like I was on a conveyor belt with a bar code stamped to my forehead.  

We should have been headed home to get to bed and they had NO SNACKS!  

To be clear, the best possible lifetime prognosis is the number one goal.  All decisions were made with that in mind and the path we have chosen has the best odds of survival and the lowest odds of recurrence.   That being said, of the providers we met with, exactly ZERO were endurance athletes.  Most of them didn’t even know what that meant or care to know for that matter. I was often the youngest person in the waiting room by twenty years.  It.Was.MADDENING.

To the rescue, may I introduce to you: The Oncology Charter of Team Edwards and my own personal Boob Dream Team!  Sadly, not THAT kind of dream… but the team you want in your corner nonetheless.   Team Edwards' advocacy and support has been invaluable, especially when I was upset or simply vulnerable in a chilly paper gown.  We learned quickly that some providers don’t like to be challenged. When they quote a statistic and we ask for the supporting study, they are often genuinely offended.

I reached out to anyone I knew of or knew somebody that knew somebody that was an athlete with breast cancer.  I learned about what surgery and reconstruction could look like. I learned what it was like to be on anti-cancer drugs for five or more years while trying to run at all, let alone compete.  I learned what recovery from major chest surgery could be like.  A care package arrived all the way from Wisconsin from a teammate’s wife who had a similar diagnosis complete with undergarments and research books.

Care package all the way from Wisconsin. Verklempt.

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DECISIONS: TREATMENT AND PROVIDER PATHS

The choice of provider path ultimately came down to these questions: Did I want to be a number or a person? Did I have options for how reconstruction was done? Would I have a relationship with the oncologist that will be my partner in health until I pass the ten-year survival mark?    It wasn’t always perfectly clear.  Typically I left Good Sam appointments with the provider's personal cell phone number programmed into my phone, the ability to FaceTime when Mark couldn’t attend, and options. I left Valley appointments with copious mimeographed handouts, a barcode slapped on top and a side of fries.

Typical Good Sam Experience on the Left, Valley on the Right

The best treatment option for me is the one with the highest odds of survival and the lowest odds of recurrence. In my case, that is a bilateral prophylactic mastectomy, or BPM, with reconstruction. This path offers a survival rate of over 98% and the lowest odds of recurrence.  I guess that means for the time being, BPM is going to stand for both this surgery AND the athletic reference for heartbeats per minute.

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DECONSTRUCTION, RECONSTRUCTION AND SILVER LININGS


Deconstruction: 

At first pass, deconstruction seems like a fairly straightforward affair, right?  After all, tons of women undergo breast enhancement or reductions and pop back to work and normal activities with a few weeks. Unfortunately, this is not breast enhancement for aesthetic purposes.  Not to get too graphic, but all the blood vessels and nerves in that area will be scooped out along with the bad stuff.  It’s takes skill and patience in recovery to keep the skin healthy and avoid complications.

This means I will lose sensation (woe!) and need to sit on my hands, potentially even on bed rest, to let those vessels heal.   Additionally, because of the challenges small boobs and strong pec muscles present, my chest muscles need to be lifted (and potentially cut) and reattached.   Pretty sure I don’t want to pull those suckers off just because I was keen to get a swim in…

Is it funny yet?  Not helpful, but funny…  

Reconstruction: 

As far as what to do after deconstruction, I do have the option of doing nothing and becoming completely flat.  A gut check (after consulting absolutely no one) quickly brought me to the decision that that wasn’t the option me, no second opinion needed.

Next, a decision had to be made as to what to fill me back up with.  The first point that threw the surgeons for a loop is I don’t want to come out of this with massively bigger boobs! I’m athletic, I’m lean and I want to be able to run.  Remember, it doesn't have to be epic to be awesome!  Typically deconstruction is completed and reconstruction starts at a first surgery, then several months later (along with weekly appointments), reconstruction is completed.  Think of the need for the “palatel expander” of our orthodontic youth… same idea but for the chest and it’s placed during the first surgery.  The second surgery is done after the  skin and muscles are stretched to the right size.  The surgeon would then swap out the palatel expander for the permanent boobs.

Anyway, staying small gives me the possibility (with surgeons that are skilled to do so), to attempt to only have one surgery and no palatel expander.  The surgeon I have chosen is capable of both options, however the decision will be made quite literally on the table.  We’ll find out when I wake up.

Silver Linings: 

So yes, news flash: Jenn may actually have some semblance of boobs when this is all said and done. Despite having several friends with significant (ahem…) endowments, elective enhancement is not something I ever considered seriously. Actually, I am solidly against it for myself and was perfectly happy as equipped.  Well, ready or not...  here they come!   The plan for now will take me from a “small A” (the reconstruction surgeon was refreshingly frank on that point…) to a “solid B”.  Hopefully that will be just right and balance out the bum while still looking true to myself.

He doesn’t seem sure what to do with this… 

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NEXT STEPS AND RECOVERY

So, what’s next?  Surgery!  It’s scheduled for December 13th at Good Samaritan in Puyallup and I’ll stay over at least one night.  Gah. Trying not to think about that too much.

The recovery restrictions and timeframe quotes have varied widely.  Ultimately, it’s the reconstruction surgeon that will make those decisions. I’m pretty sure she’s trying to scare me straight because she’s gone through every possible complication including the apocalypse.  She is quoting eight weeks to BEGIN resuming normal activities and work.  Yes, as someone who has spent ten years building a significant amount of endurance fitness, that SUCKS.

If all goes according to “Plan A”, I will have one surgery and one recovery.  I'll then be be monitored by my oncologist for five to ten years. Unless something unexpected is discovered, I won’t be recommended for chemotherapy, radiation or daily drugs.   Of course, I’ve been made keenly aware of “Plans B, C, D, E…” but won’t digress into those.

Hopefully they don’t turn out so big anyone will notice.  

I have this t-shirt in mind if they do!  

My goal first and foremost is to recover like it's my job.  Not only because for the time I'm off work it literally WILL be my job, but also because I don't want to jack up my health or results for something stupid and nearsighted.  Secondarily, my goal is to make it to the Big Island for the Lavaman trip we have booked (and paid for!) in late March and early April. No, I probably won't be competing for the podium, but I would like to be there to and enjoy the mojo, if only at the barbecue.

"Don't call it a comeback, I've been here for years. " - LL Cool J

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GRATITUDE

Yes, it’s overwhelming to try to get my head around the fact that I “have cancer” but I won’t let it define me and I’m not gonna have it for long.  Adversity builds character they say, but the potential for being sidelined from the sport I love and in all reality, our entire lifestyle for so long sucks, frankly.

At the moment, I am grateful.  I’m grateful it was caught at this stage, when my prognosis is excellent. Sheepishly, I'm grateful it was caught two months AFTER Kona instead of two months prior.  I’m grateful to have people in my life that I can count onto go to bat for me.  And most of all, I’m grateful to have Mark as my partner in crime AND life!

It's only been on the shelf for two months, but I'm pulling this moment off, untying the bow and drawing strength from it! 

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