I didn't want another cat. Mark was in an impossible position. Our current count was four and Squeaky would put us at five. To be fair, I didn't even really know her. For some reason I'd drawn the arbitrary Crazy Cat Lady line at a six-pack and in my head five would put us precariously close to going over the edge. Mark's dad had passed away, his mom was moving and she wasn't taking Squeaky. Squeaky would either be relegated to becoming the neighbor's full time outdoor barn cat at thirteen years of age or we would take her. I was pissed. Mark envisioned coyotes, cars, cold.... and knew it wouldn't end well. He fought for her. So she came.
Showing off her vocabulary
Napping buddies before she came to us
Upon arrival it became clear, nobody puts Squeaky in a corner. In the assimilation process we started her out in the fifth wheel. We figured she'd find comfort in something familiar as it was the very fifth wheel previously owned by Mark's parents and she seemed to know her way around it. The first night she shredded the screens trying to get out. She was promptly rewarded by being graduated to the large garage. There she literally swung from the rafters and, after about a week, broke out a window. Well then. In to the house she came to own the entire second floor where she had run of both our offices, the pain cave and a large bonus room. Still, in the mornings she let us know this was wholly unacceptable! By the time we moved to Oregon she'd assumed her proper place as Queen running both floors of the entire house, plus the garage while purring herself to sleep on my pillow each night.
Nobody puts Squeaky in a corner, petulant toddler edition
Swinging from the rafters
With five cats all in their teenaged years, we came to call our household "Chateau Edwards Home for Geriatric Felines." Falling in love with a thirteen year old cat made me angry all over again. Why hadn't we just taken her sooner? How much time would we actually have with her? How could we make the most of the time we did have?
Hanging out at work
She was our constant companion with a huge, sweet personality and an extensive vocabulary. In the mornings she'd come running to sit on laps for coffee and supervise workouts. In the office she hung out on my keyboard and made herself known in meetings. Sometimes if the meeting required some modicum of professionalism, maybe one that would be best without a cat licking your face, I'd try to get her to settle on my lap, aim the camera up and hope for the best. We took walks on a harness outside, she laid on my chest for foam rolling sessions and thought hanging out in the shop with Mark was absolutely the coolest thing ever.
Mark's shop buddy
Alarm bells started to go off when she started to lose weight. The diagnosis didn't seem to fit. She continued to lose weight and, after a couple of months, I pressed for a second opinion. Yep, misdiagnosis. I was pissed all over again. "I feel like the clock is ticking." I said to my mom as I watched her wither away. "The clock is always ticking." Mom said.
Stage five clinger status firmly established
We cherished every moment even more dearly. Walks on the harness eventually became walks in our arms. She took in the scenery and purred and purred and purred. She was getting the right treatment but was still slipping away. I fed her constantly like a baby bird to no avail. Then, it was clear there was no time left. The vet helped us say goodbye at home, still purring in my lap. "And poof, she's a memory." said Mark.
"Time flies over us, but leaves its shadow behind." - Nathaniel Hawthorne
Grass is good
Our next family member will be welcomed to our home, newly dubbed Squeaky's Sanctuary, with open arms, even if we do get a bit close to that Crazy Cat Lady line. Squeaky taught us that we have plenty of room in our home and in our hearts but only so much time.
Simply Begin Again. These may be the three most important words we learn in meditation: Simply Begin Again. For the uninitiated, here’s a short primer. You’re going along your merry business, you know - meditating, thinking about thinking about nothing, doing your thing, then *BAM* you’re thinking about something. D’oh! No worries, you simply begin again. It’s the cornerstone of a meditation practice that helps you clear your mind and feel a sense of stillness.
Progress? Stillness, however is something I’m decidedly NOT good at. After the highest of highs and the lowest of lows that capped off 2016, we spent most of 2017 wrapping up the remodel of my chest and getting back to normalcy. Late in 2017 our time was gladly invested in some family matters that put training on the back burner. Even so, the swim, bike and run fun seemed to be progressing along nicely. Well, progressing nicely save for continuing to baby an Achilles problem that has oscillated from a niggle to a sidelining injury for several years.
A Team Win! By March 2018 we had a nice solid win in the books for #TeamEdwards. I took third place female amateur overall at the Olympic distance Lavaman and Mark also had a super fun race. There we also had a good visit with my brother. He jokes that if we come 3,000 miles, at a minimum he can come 200 and had made the trip over from Oahu to join us. All in all - good times and things were looking up.
*** A Team Edwards Win **
Turning a Page? We headed home from the Big Island ready for the next chapter…. except this one seemed to never end. Family concerns continued - they were by far and easily our priority. The Achilles seemed to throw up a flag with any sort of distance, speed or trail work that could lead to building to an Ironman marathon. I kicked the can down the road on a couple of Ironman registrations and registered the first DNS (Did Not Start) in my IM career. Sigh. Perspective.
Checking the Boxes. Summertime came and I started really making sure I’d checked all the boxes on getting my foot right for running:
I ran slower and slower and less and less. It got worse. Dangit!
More physical therapy. I find PTs are usually miracle workers, but alas, the magician was out.
Tons of massage. It didn’t fix the foot but we’re keeping it in the maintenance protocol! You know, purely for the physical benefits…
Switched to a completely whole foods plant based diet. Nope, this didn’t fix the foot either but is by far one of the best decisions I’ve made in my life. Also a keeper.
Changed shoes. This showed a glimmer of hope but ultimately wasn’t the winner.
Revisited my lab work. Yep, all good in the ‘hood.
So. Much. Yoga. Obviously keeping this one as well but nope, not a fix for the foot.
A Second Opinion. Fine. By fall of 2018 things had settled down and I finally went to a doctor for a second opinion on my foot. One x-ray and MRI later, it turns out I had been misdiagnosed several years ago and had been rehabbing the wrong injury. The doctor came out with a “you have a very interesting heel” and a genuinely surprised look as he pulled up the image. Officially I was battling a couple of things that would never go away no matter what I threw at it. These including what’s called a Haglund's Deformity on the back of the heel and what turned out to be a cyst in the bone where the tendon inserts on the outside of the foot. Yep, that spot riiiiight where it hurts most. Whelp, at least I hadn’t been imagining it. We dub thee: Frankenfoot!
*** MRI Image with the Two Main Culprits ***
A Gameplan The solution was complete remodel of of my ankle around the Achilles area. The surgeons would hack off the Haglund’s deformity making a clean path for the Achilles to move over. Additionally, they would detach the tendon from the bone at the point of the cyst and carve it out to get to some fresh, happy bone. Then they’d reattach it with threads strung through three holes drilled in my heel. Finally, they would perform a gastrocnemius release to loosen the tight calf in an effort to “future proof” it against other maladies or recurrence downstream. The surgery had a high success rate and a long recovery period. I waited for the punchline. It would be at least four months to even think about a return to running. Cue meltdown #1.
Again For some reason not being able to run AGAIN almost exactly two years since the last surgeries began was really hard for me to get my head around. I’d never made it back to the form I expect of myself or been able to race an Ironman in the interim. I was frustrated I'd been barking up the wrong tree for several years. I’d seen people come back from horrific accidents, babies, Lyme disease, etc. yet I couldn’t get out of first or second gear. And now I was about to go back into park. Again. And not be able to run for several months. Again.
*** Herb Brooks, Coach of the 1980 USA Hockey Team ***
Demolition Surgery was held in early November and by all accounts went well. Mark was, as always was a trooper and put his Super Sherpa skills to work. I was nicely drugged up but surprised, frankly at the pain level. Turns out, even though you may have been through worse, when shit hurts, it still just hurts. Especially when the nerve block doesn't work. D'oh!
*** Demolition Day! ***
I have a new friend, Scooter, that gets me around the house okay and binged watched Nurse Jackie all the way to the finale the week after the surgery. Needless to say I was doubly motivated to get off the pain meds! Meltdown #2 occurred sometime in the middle of the first week. I’d backed the foot into the dishwasher on Scooter (OUCH!), hadn’t been able to do any semblance of exercise since before the surgery and the internal workings of my digestive system had come to a standstill. Right. Off the Oxy we go. Meltdown #3 was a sneaky sucker. It crept up at the appointment where the surgical splint came off and the cast went on. I'd been hoping for a walking boot but that idea was quickly laid to rest by the doctor. And frankly, it looked and felt horrible and no where near ready for walking. Frankenfoot indeed.
*** Frankenfoot at splint removal and casting. ***
*** From Diagnosis to Surgery to Suture Removal and Casting ***
Warning: This clip contains images from the actual surgery and of the suture removal. If that isn’t your thing - give this one a pass!
Onwards. This is what training looks like for the time being. I’m swimming with a waterproof cast cover dragging “Frankenfoot” along slowly, but successfully. Much to Mark’s chagrin, I figured out I could spin gently on the bike with the cast strapped in (safety first!) to at least break a sweat and keep my mind right. And I’ve taken a stab at water running which is just as boring as it sounds. Pro tip - bring tunes! Hopefully next week more restrictions will be removed and we’ll continue to progress. My fingers are crossed to be allowed into the hot room to start making my way back to yoga, even if that means just rolling around in a puddle of sweat on the floor. Right now that sounds downright glorious! I’m taking my mom’s advice and keeping my eye on the prize, one day at a time.
*** Current "Training" Protocol ***
Gratitude. I am grateful for my health, which in the grand scheme of things is pretty darn good. I’m grateful for Mark who puts up with whatever shenanigans I may drag him through, including this episode. I’m grateful for my family who support my decisions and parents who brought kitteh presents on their visit to their housebound kid. I’m grateful for my friends, their random check-ins, humor and for the coffee dates I had almost daily for the first couple of weeks post surgery. I’m grateful that the training I able to do right now is just a glimpse of what it looks like every day for physically challenged athletes. Some day I will not be able to do these things. Today is not that day. And so we simply begin again.
Depending on how you like your math, it’s been about 245 days, 36 weeks or a solid eight months since we began an unexpected adventure on Adversity, Boobs and Silver Linings. Wow, that seems like a really long time and a very short time… at the same time! We are overdue for a quick and final update. So... a brief note on how I'm feeling, what's next and what YOU can do to help stack the deck in your favor follows.
How am I feeling? Well, to really embrace the sentiment, it would be best to indulge me a tad and watch this music video, Glorious. It’s about a grandson taking his grandma out for a spin. Double dog dare ya not to smile!
As the eldest in a family of five, my mom's sister Gloria assumed the family helm when my mom was very young. Aunt Gloria had a zest for adventure and a self-deprecating sense of humor that would sneak up on you. Adventure? She drove a little RV across the country from New Jersey to visit her baby sister in Washington state. En route she'd cook dinner for her blind husband and manage the RV all by herself. Once she got here we took a Redneck Cruise Ship, otherwise known as an Alaskan State Ferry to Anchorage for more adventure. Aunt Gloria didn’t take herself too seriously, even when she started getting forgetful. Heck, she figured... there were benefits to being able to hide your own Easter eggs!
*** Boogie Boarding, Mom and Gloria, Mom in Kona and Mom on Manta Dive ***
What's next? Well, we’re off to Live Glorious, whatever that comes to mean. For now it is delightfully and purposefully undefined with a zest for life as we know it. So far the theme of the shenanigans seems to be a lot of bikes, swimming, mountains, yoga, friends and oh - more mountains, more bikes and a tad of Type II Fun. Racing? Well, that’s a tricky one. It depends on how the swim, bike and run come around. I’ve chosen to enjoy this bit of space and not even begin to consider “what’s next” until at least January of 2018. Yes, I intend to race again and most certainly am training. Only time will tell when fitness starts to become fast-ish again.
Stack the Deck in Your Favor! As a final public service announcement, consider what you are doing to get on top of anything nefarious lurking in the health of Future You. Although the last few months was certainly by no means easy, we all know it could have been a lot worse. None of the choices I had were particularly fun, but they all had a very good prognosis because it was caught EARLY. Please get on and STAY ON your preventative maintenance. Future You thanks you and I do too!
Living Glorious. So, the book is closed on Adversity, Boobs and Silver Linings. We are moving forward with enormous gratitude for the embarrassment of riches in support we received throughout this bumpy ride. The mammograms and colonoscopies especially warm the heart, if not your tender bits. I’ll do my best to honor that gratitude, the living example that is my mom and the memory of Aunt Gloria. The first few chapters of Living Glorious have been pretty darn amazing. Who knows what the turn of the page will bring!
Well hello from the other side! Thank you for the kind words and notes. Despite my attempts to will it to be so, this round has definitely not been a piece of cake. Certainly easier than the round first which benefited from a full week on 24x7 narcotics but no, not much fun at all. As I understand it this is due to the additional rearrangement of the musculature.
Nope – not quite.
They don't look perfect underneath but they don't look like Freddy Krueger got a hold of them and that's a win! Knowing that the right side got extra scooping to get rid of the bad stuff in Round I and the left got some extra rearranging under my arm in Round II, I think they're going to be just fine. Other than the surgical markings they look pretty normal in a T-shirt and they are much softer than the appliances! Phew!
Yay drugs!
Considering there's extra dressing on one side and surgical markings up top it could be worse!
Presently we are in the midst of Operation Hard Boiled Eggs. For the future reconstructive surgeons out there: We want these implants to adhere to their "pocket." This is typically not a concern for cosmetic augmentation as normal breast tissue solves for that. In my case, fluid (envision the white part of a raw egg) is the enemy. Increased heart rate = increased blood pressure = increased fluid = Jenn's eggs never set. We want them to adhere so that I can get clobbered in a future mass Ironman start and have them stay in place.
The type of implant I got is a newly approved silicone "gummy bear" cohesive gel in teardrop shape. If you cut a gummy bear and a half you'd have two pieces of gummy bear. Same idea here and thus no leaks! For now, we need those eggs to set.
Here's what they look like in motion: https://youtu.be/bjigPq-8dec
Gotta love a guy who goes to Costco the day before Valentine's Day and doesn't overpay for flowers. Plus he makes sure they are kitty approved. The only other item in his cart? Gummy bears. Because… gummy bear implants....
Always.
The Boob Dream Team continues to be AMAZING. I am forever grateful for their support and the rally of our collective tribe. I also continue to have gratitude that I'm fighting to get back in the saddle not fighting for my life. We are at over 30 mammograms now - keep them coming! The new doctor brings a ton of mojo (he's not hard on the eyes either… ) and I'm sure will provide an additional mojo infusion at my next appointment.
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.
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.
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.
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!
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.
“If things start happening, don’t worry, don’t stew, just go right along and you’ll start happening too.” - Dr. Seuss
_____________________________________
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!
_____________________________________
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!
_____________________________________
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!!
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”.
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?
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.
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.
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.
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
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!
