The Importance of Self Advocacy: Take Charge of Your Health
It has taken me a while to sit down and write this – for two reasons really. One I was procrastinating, but more importantly, I wanted to know that there was a happy ending. Today, I finished a half marathon (spoiler alert) four and a half weeks after having most of my right lower eyelid removed because of skin cancer. It was then reconstructed using skin from my other eye and from the affected eye. Three weeks of one eye being sewn shut, stitches, tear duct stents, and two fabulously colorful black eyes make for an awesome holiday season.
So a little backstory is in order. In September, Tri Sirena Luminary Lynsey Capone-Smith invited a bunch of us to travel to Kona to help with the Tri Sirena booth during Ironman. I’ve wanted to be at this race forever. I have friends in the competitive outrigger canoe paddling world that work it and have invited me but the timing has never worked. Coming off of a three-month trial (I am an attorney) on another island; I was tired, burned out and needed some fun. Plus, I had a little time in my schedule. I was psyched. As I was clearing my calendar, I saw the dreaded dermatologist appointment.
I’d just graduated to six-month status (from going every three months) and every fiber of my being said skip it – reschedule it – it can wait. Except…I had this little bump on my lower eyelid that looked kind of like a stye. It had been there six months before and I’d brought it to my doctor’s attention. But no one thought it was skin cancer. It didn’t fit the ‘mold’. But this little alien (as I like to call my skin cancers), was morphing. It was doing all of the things you know to look for – growing, getting scabby, not healing. And I know my body. My first skin cancers were removed when I was 19 (I’m almost 47), so I am pretty good at spotting the aliens.
With a lot of whining and pouting, I told Lynsey I could not go and help because I really needed to get my eye evaluated. So began the odyssey. Walk in the door and point to the eye – “I think it is skin cancer.”
Nurse: “Yep, looks like it.”
Doctor: “Yep, I think it is too, but because of where it is, we can’t touch it. You need to go to an eye specialist to get it biopsied. And oh, while you're here, we will take two more off of your back and shoulder.”
Off to the specialist who also agrees it looks like skin cancer. He’s confident enough that after doing the biopsy (not pleasant, with shots and later, a black eye) that he explains the Mohs Micrographic procedure and the second-day reconstruction that could be required. Wait, two days of surgery? Yep. The biopsy confirmed what we all already knew.
So two days of surgery get scheduled. Day one is Mohs. That is a wicked little procedure where they cut out what they think is cancer, freeze and quarter it, slice it thinly and verify they caught the margins. If they didn’t, they go and do it all over again. So, 45-minute procedure, an hour or two of waiting, then another procedure, and then waiting, and so on. Until they get it all. I was lucky that it only took two rounds for me. I knew we were not playing games with this little alien when they would not let me see the end result. (Mind you I am one of those freaky people that are fascinated by this stuff and watches most of my procedures when they are in locations I can see.) Compression bandages in place, I was sent home to rest comfortably in my big lounge chair (it became my bed for 5 days).
Day two came. Pouring rain. And we are off to the surgery center. This time you get to be knocked out. My reconstructive specialist performed the “Hughes” procedure for this round. This is where they stretch what skin is left on your eyelid as far as it will go, grab some skin from your other eyelid to use as a graft, and then borrow the internal part of your upper lid to pull down and become the inside of your new bottom lid. Really cool stuff – if it is not happening to you. End result? More compression bandages, eye essentially sewn shut for three weeks and sleeping upright for several days. Not much you can do to expedite the process – just take care of it, keep it clean, and try to rest. Oh, and explain to everyone and their mom why you look like you seriously lost an MMA fight.
Three weeks later, they cut open the flap and I got my eyeball back. Again, not pleasant with shots, pulling stitches and more black eyes but regaining peripheral vision was fabulous! Even more fabulous, the alien had been removed and my vision was intact.
So, why am I writing this since the description is likely making you cringe? To share a couple of things:
- You must be your own advocate. This odyssey included three appointments canceled by doctors, an admission the skin cancer had grown faster than anyone thought possible, and me having to follow up on getting the biopsy results and the procedures scheduled since the three offices involved seemed to struggle with the concept of coordination.
- Prevention. You’ve heard it before but as a poster child of Coppertone (literally ran around when I was tiny with just bikini bottoms on) and a true California 80’s child (tanning beds, baby oil, you name it), I did little to no prevention. The price is HIGH. I no longer count how many aliens I’ve had removed – I count the areas (three) that (so far) remain unscathed.
- Go beyond sunscreen and long sleeves. HATS are a must (not visors). My dad, myself and now my brother have all had large skin cancers removed from the top of our head. Natural parts in your hair or widows peaks are ideal spots for the aliens to reside. WEAR SUNGLASSES because no amount of sunscreen would have prevented this last alien.
- Know your body. Inspect your body and look for those aliens. They don’t deserve to live on you so evict them early!
Surround yourself with strong women (or men). Going through this bites. It is somewhat painful, very inconvenient, and disturbing to know you will never look the same again. Being around people who have been through it, who understand the down moments, and who remind you to be thankful make it MUCH easier.
Written by Keri Mehling
Follow Keri on Instagram! @kerionmaui
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