I often think about how this disease is lifelong, and how its cunning nature has the ability to walk in my shadow, wherever I go. But really, I want to convey to those who believe that this disease is "just a skin thing", that it really is not. When I say this disease feels endless, I mean that on so many levels.
So, here's my attempt to show how this disease is not simply about skin, but rather a perplexing, boundless part of life that does not end.
A few days ago, my right, big toenail area started feeling weird...a pain/pressure of sorts. I knew this sensation. And immediately I was rocketed back to a week last year that went like this...
Ya know the book The Very Hungry Caterpillar by Eric Carle ? Well, if you don't, you can watch below, as the story is read by the author:
Here is how my own Very Hungry Caterpillar week went...
FLASHBACK to last year:
On Monday, I was in yoga class, in down dog, and noticed what I thought was a piece of nail polish that had lifted off my big toe nail. Unable to stop fixating on it, I stop my practice, and inspect. It's not polish. It's my nail...half OFF my big toe. In my mind, I go straight to melanoma....I know I've read that toenails that come off may mean melanoma. Within hours, I'm in the dermatologist's office, seeing a physician's assistant. Fear goes from zero (on the yoga mat before noticing this, all zen and yogi-ish) to 10+(in a medical facility, thinking I have another melanoma). The PA goes and get some large, pliers-like tool, and cuts it off. Yes, half my toes nail, from top to bottom is gone. She examines the skin and says it looks healthy and that this is probably a result of an injury months prior. Ok. Exhale, and move on...with a missing toenail.
On Tuesday, I have a five hour eye appointment to address the pigmented cells found on my left eye (or, really, I should say...that I found). This entails meeting with many different techs and residents for dilation, pictures, exams...before being seen by the eye tumor specialist I was there to see. I spent 4 hours and 45 minutes being examined and told that everything looked good. I remember feeling so relieved and full of hope, that I had made it through this with the "all ok". And then, I was called back to see the eye tumor guy. And that's where the 4 hours and 45 minutes of good news was erased in an instant. I was told I have PAM (Primary Acquired Melanosis) and that I needed surgery to biopsy the area and freeze the surrounding cells.
On Wednesday, I went to the North Carolina General Assembly to participate in a free skin cancer screening event, where we, as survivors, were asked to speak with our legislators about the need for strengthening indoor tanning laws. It's also where I met the amazing people behind Black is the New Pink-Fight Melanoma and Melanoma Prayer Center... BEST part of the day...and week, for sure!
On Thursday, I got some vaccinations for my up and coming travels out of the country. Oh, and LOTS of time in my head (bad place), mulling over the PAM diagnosis.
On Friday, I had a follow up mammogram for calcifications found 6 months prior. When the radiologist came into the room and spouted off the words, "There have been changes; we need to do a vacuum-assisted core biopsy."...I thought I was having auditory hallucinations from all of the stress. I left there in tears, got on the phone to my surgical oncologist's office, and completely lost it when asked by the nurse on the phone, "Ok, so do you see Dr. ______ for melanoma or breast cancer?" Through my sobs, I tried to explain that I thought I was just his melanoma patient, but now I might be seen for both! [*Please note: There is a link between melanoma and breast cancer.] This day was a whirlwind of insanity, racing back and forth to the cancer center, seeing nurses, scheduling the biopsy, rushing all of it, because I was supposed to leave the country the next week.
On Saturday, I did not eat through a bunch of yummy stuff, but rather bit off all of my nails and chewed my cuticles until they bled.
On Sunday, I most definitely found myself in a cocoon, a fucked up cocoon of fear, what ifs, and panic.
On Monday, I had the breast biopsy.
On Tuesday, I waited...........all day...for results. My angel that day was my outstanding, sensitive nurse practitioner, who called me throughout the day, giving me updates on what was going on in the pathology lab. Her last call came late in the day, with her gleeful voice saying, "Have a great time in Costa Rica!" The path report was good. No breast cancer.
I did not emerge from my cocoon a beautiful butterfly, but I did come out a toughened warrior.
Photo by Robert Sturman
My point of all of this, is that melanoma is more than a simple cancer of the skin. It's a horrible disease, that can spread to your liver, lungs, brain, can increase your chances of getting breast cancer, will require a life long commitment of vigilance, and so much more...including, when you feel a strange pain/pressure in your big toenail, you are thrown back to a week of fear-filled memories.
"We live in a rainbow of chaos."