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.
__________________________________________________
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”.
__________________________________________________
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.
__________________________________________________
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.
__________________________________________________
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.
__________________________________________________
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.
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…
__________________________________________________
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
__________________________________________________
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!
__________________________________________________
