Where it all began: redheaded in Hawaii, without hat or sunscreen
Skin offerings to the sun god, as I call my adventures with skin cancer, began early for me.
I was born in the sixties (before the invention of sunscreen) I grew up in Hawaii, and I had red hair—the “trifecta of doom,” as the first of my many dermatologists called it. I remember Mom, tanned and brunette, smelling of coconut oil in her crocheted bikini, slathering PABA from the health food store on my peeling nose and shoulders as I ran around in nothing but a pair of homemade bottoms. When my grandmother visited, she always fussed about it and bought hats for me: ruffled, fisherman style, straw, or baseball hats.
I hated them all. They made my head hot, and interfered with my vision. I was a busy kid, interested in everything and always moving: running, climbing, digging in the sand, riding, surfing, snorkeling.
And getting sunburned.
My first inkling something wasn’t right was when, as a young married with small kids, we’d moved to Indiana to go to college. I was paler than I’d ever been after months indoors, milky-white with freckles like nutmeg on buttermilk—except for some persistent red spots on my shoulders and back. We had no health insurance at the time, so I went to the town’s low-income clinic.
“These are AKs,” the doctor said. “Actinic keratosis. Pre-cancers. I don’t believe in all those unnecessary biopsies. We’ll just freeze them off.” And the man, maned in crazy white hair like an eighty-year-old Einstein, pulled out a container of liquid nitrogen, dipped a Q-tip in the stuff, and went to town. I quickly became familiar with the hiss and sizzle of skin melting under a cold so intense it felt searing.
I was twenty-six.
I returned to that doctor the whole seven years we were in the Midwest, not realizing that his non-biopsy, “just burn it again if it’s not gone the first time” wasn’t typical dermatological care–but he never charged me more than fifty dollars for the office visit.
After we returned to Hawaii, I stayed out of the sun as best I could, but it was too late. The real damage began emerging in my thirties. I joked that the price of living in paradise was annual skin offerings to the sun god as I experienced new unpleasantness: the removal of a basal cancer on my chest that left a gapped scar, like I’d dated a drug dealer who liked a little knife play. Another near my hairline, pulling one eyebrow up and hurting like hell. But the doozy was the surgery to deal with thirty summers of a sunburned nose.
I had no idea what a nightmare of pain and psychological stress I was embarking on the morning I had Moh’s surgery on my nose. It was a long, endless day of having layers of tissue cut off the top of my shocked proboscis to be analyzed for cancer. Between bouts, medicated with nothing but novocaine, I stared out the window of the clinic with several other shell-shocked patients, all much older than me.
The window was a perfect square, bisected by the angled plane of the next roof. There was nothing beyond it but the ruthless blue sky and its exacting ball of fire whose price I hadn’t known I’d have to pay. Somehow, though, the minimalist shapes and the deep blue color soothed me. That memory is etched deeper than any other from the day.
I used to have a cute bobbin of a nose. It now had a dip where it had had a bulge, and the gory sight made me want to vomit when the nurse let me have a look. “I just have to stop now. I can’t take any more off,” the haughty, impatient surgeon said, and proceeded to cut an inch or so of tissue off from next to my ear and sew it onto the cancer site.
I was still hopeful and trusting back then. I lay on the table with tears trickling out of my eyes, trying not to be a baby as the man stitched a soft, fuzzy cheek skin circle to the top of my mutilated nose. The kind nurse dabbed my streaming tears with a cotton ball on a stick so they wouldn’t get into the surgery area.
I didn’t know I was used to being attractive until I was someone people wouldn’t make eye contact with, wouldn’t look at with a smile. The experience of being ugly was a shock, and added to the trauma of the skin graft’s failure as the hopeful little circle of cheek flesh dried up, turned black, and fell off, leaving more scars.
I’d taken a few weeks off from work, but had to return to my junior high counseling job, where the kids were dying to know what had happened. I looked like I’d lost a fight with a garbage disposal.
“Wear hats and sunscreen, kids,” I said, over-hearty with bravado. “I’m a cautionary tale. Listen to your mamas.” Whenever I saw a redheaded kid, I wanted to cry for the tender pearly pink whiteness and sweet freckles that would brutally cost them later.
Time went on and so did the indignities. I submitted to scorching, cutting, freezing, acid black goo from a health food store, and caustic creams from head to toe. One day my doctor, a kind little Japanese woman who always laughed at my nervous jokes and had a hands like a butterfly, found something new.
“You have to come in for this one,” she said gently.
“Oh, for goodness sake. You’re always so cautious. I wish you’d just zap it like my first doctor used to.” I really missed my wacky old doc with his canister of liquid nitrogen. Those were the good ol’ days.
“No. We have to talk in person.”
I went in, and she told me I had melanoma.
The Big M.
This killer looks like nothing much, just an odd little mole, but it can break off and migrate throughout the body like few other cancers. It’s mobile, spreading like a rhizome. I’d been living with this fear so long that I burst into tears in a potent combination of terror and relief.
I’d leveled up to the big boss in Skin Cancer Wars, Version 10.0.
“It’s small, still. I think I can get it all and you won’t have to have more treatment,” she said. “I hope. We’ll know after we examine all the margins of what we remove.”
“Get it off me. Get if off me now, or I’ll go home and have my husband cut it off,” I said, dead serious. My woodworker husband was a real craftsman, and his skills included drills, box cutters and soldering irons. I’d trust him to cut this shit off me with an exacto knife in a heartbeat, no anesthesia needed. My overactive mind imagined the cancer as a poisonous plant, sending down fragile, toxic, breakable roots to try to take up residence in me. I wanted it weeded out, NOW.
“I’ll move some stuff around and get you in tomorrow morning,” my doctor said, and I almost kissed her in gratitude. I had to go back to work, though, and I cried the whole way in the car, asking God for the courage not to be a total basket case. He did show up a bit, getting me through that day and the next. My doctor with her butterfly hands shot up my back with novocaine, took out a chunk of meat the size of a baby’s fist, and stitched me up efficiently.
I needed no further treatment, and I call it the scar on my back my “saber wound.” It doesn’t bother me like the dented, corrugated remains of my nose does. I won that round.
But life is long, and so is the reach of the sun. I’ve taken to having every three month checkups at a different doctor, one who owns his own Photodynamic Light Therapy machine, a deadly combination of chemicals and laser light that zaps the skin preventatively. Not a pleasant process, I assure you, but better than many alternatives.
Still, in spite of vigilant and periodic frying, I had to have another surgery on my face, removing a basal next to my nose, just yesterday.
This surgeon, kind and bluff with a loud voice, cut out a piece of my upper lip the size of a dime, pulled my cheek over it, and sewed the cheek skin to the corner of my nose.
“Hid that cut right in the fold next to your nose,” he boomed proudly, holding up a mirror so I could see the hideousness. I looked properly Bride of Frankenstein: swollen as if I’d gone a few rounds in the ring, decorated with a blasphemous black row of stitches that echoed the curve of my nostril. The real bummer was that this wasn’t even plastic surgery to make me look better. It was cancer surgery, and made me look worse.
“Awesome,” I mumbled through puffy, numb lips. “That was about as fun as my last root canal, and I expected much worse.”
He laughed. They all do. It’s how I get them to like me. “But you have to get that eyelid done next. And I’m sending you to Oahu for that. I can’t be responsible for wrecking a pretty girl’s looks.”
A pretty girl. I used to be one, once upon a time, when I was too young to appreciate what that meant. And now, I’ve got a lesion on the tender wet edge of my eyelid, where my tears collect, and I get to look forward to that further adventure.
Driving myself home, loopy from novocaine, a pressure bandage cocking my sunglasses up at a weird angle, I counted my blessings.
- I have health insurance, in spite of being self-employed and having this as a pre-existing condition. (Thank you, Obama!)
- So far, I haven’t had “real cancer” and had to do chemo and radiation.
- I figured out how to manage my fear and anxiety during the procedures using self-hypnosis recordings. That made me so relaxed this time that the doctor thought I was falling asleep during the procedure, when I used to get so anxious I had to resort to medication.
- Maybe, when I go to Oahu to get my lower eyelid cut off, I can go to Bishop Museum and see the exhibits and do some book research.
I wish I had some nugget of wisdom from my adventures with skin cancer. I have nothing to offer but my own story of struggling on in the fight. I’m not going to let it get me down. I’ve still got a sense of humor. I’m grateful, happy and productive. I’m learning to manage myself and have courage, something I’ve always admired in others.
Yeah, sometimes I cry, but those tears, loaded with hormones and cortisol, carry off the bad stuff and help heal. Maybe, if you looked at my tears, you’d see cancer cells in them—cancer cells that aren’t in my body any more.
It’s a hopeful thing to imagine, and imagining helps heal too—and I’m extra good at imagining.
What has helped you recover from the stuff life has thrown at you?
Wow Toby, This was a tough article to read. I am so sorry you have to go thru the sun related cancers. I had a basil cell removed last spring. So guess I too will be looking at sun worshiping consequences. It is a scary thing. So glad your sense of humor and self hypnosis methods can help you relax during the procedures. Hang in there.
Big Hugs !!
Thank you dear “Aunty Janet!” xoxo
I think you’re a very pretty woman but then I haven’t taken a magnifying glass to your face because I never get past that smile.
Hang in there.
Aw! Thanks for the encouragement. Looking forward to reading Rocky Bluffs, starting today!
Thanks for sharing your story, Toby. My Mom had similar experience as yours, as a freckled California girl who came to Honolulu to work at Queen’s in 1938. In the sun as much as she could, she was fine until her 70s, and then Mr. Sol caught up with her life of tanning. She lost much more nose and other skin than you have described.
I was the opposite. All through High School, I went sailing at the yacht club every Saturday, and fishing with Dad every Sunday. No hats, shirts, or blockers. I got burnt to a crisp every weekend. Monday and Tuesday were hot burning sore, started peeling in big sheets on Wednesday, a little better on Thursday, tolerable on Friday, and ready to repeat by the weekend. I have had a few small spots “burned” off the bridge of my nose and ear tips with liquid N2, but that’s all so far. At 72 now, I am much more careful, waiting for that other shoe to fall.
Same with the lungs. Mom and Dad, Doctor and Nurse, who went through Pearl harbor together, smoked heavily at home while I was growing up, and I lived in a haze of 2nd hand smoke. Mom died of lung cancer and complications, and Dad of prostate that spread to his brain. I never smoked, and I am still waiting for the effects of all that smoke I lived in as a kid. So far, so good….
Keep vigilant. So glad you’ve been more resilient, in spite of exposure!
Oh Toby. So sorry! I am glad for your list of thankfull things. We didn’t know and now we pay the price. My one daughter always wears a hat. I mean always. My other daughter doesn’t. I am going to be more vigilant with her. I am also going to go get checked myself I think. You are beautiful. I hope they will be able to do a good job on your eyelid.
Thank you. And yes on the hats!
Nothing will ever make you anything other than totally beautiful….and I don’t mean “on the inside.” You are that, of course, but you are infinitely beautiful not in spite of these surgeries but because of them. You are strong and funny and smart and a beautiful child of God. You are independent and resilient and have come so very far since our days together in SJ. I’m blown away by all you have accomplished in the past 15 years! Miss you, my friend!
Suzi, you are a bff forever. I know if we ever get together, it’s going to be like we never were parted.
THanks for the encouragement from one of the most beautiful women I know!
Dear Toby~ Wow…I was just scrolling through fb and came upon your little (big) blog post! Having just come home this afternoon from the dermatologist, feeling a weight in my heart because, yet again…another wait for results on a biopsy~ I also grew up at the beach, a freckled redhead 🙁 Those were wonderful light hearted years, but have proved to be my greatest regret! I decided a month ago to face my fears from back experiences and deal with my sun damage NOW! Today was the start! Stay strong my friend (and favorite author) Beauty is fleeting, but health is the important thing! I have 9 months of Photo Facial Light Therapy in the future on my forearms and face, once a month with a recovery of 5 days after each session. Not fun, but I feel good being “on top of it”…..Good luck, you are not alone my friend! xo
It was meant to be…both that I share, which helps me process and make sense of things, and that you get an encouraging word. Stay on top of it, avoidance just makes things grow bigger!
Thank you so much for this post. You have beautifully conveyed the anxiety and struggle of dealing with this issue. I wish I could tell my 20 – year-old self to get out of the sun! Now I get to watch and worry. Your positivity encourages me that i can deal with what comes and not be a total neurotic about it (hopefully).
I highly recommend getting a hypnosis recording done, either pre-made for general relaxation, or specifically for medical procedures. It’s made things so much more pleasant. One of my suggestions (I do my own) is that going for a procedure is taking care of myself, as “relaxing as a spa day.” It’s really helped me handle the specific unpleasantness.
Thank you so much for sharing your personal struggles with us! May we all learn from you & practice caution while spending time in the sun.
Please wear hats and sunscreens! 🙂
So sorry you have to endure this. I see people in sunny places all over the world WITHOUT hats. It’s unbelievable, as I trudge around in my large, floppy, unattractive one. May you be healed 100% and live a long, happy writing-life. Best always.
Toby, I read through this with a sense of dread. Were you trying to tell us something that we really didn’t want to know? But to finally read all of your treatments have had successful outcomes made me breathe easier. Although I wish it had never happened to you, all of our life experiences make us the person we are – the traumas you have been through have made you a happy, successful author – it gives you empathy for others, and a kick-a** attitude with life.
I am a fair-haired English rose, and recently have taken to using a minimum of SPF30 or even 50 in hotter climates! My husband recently had a brown “spot” on his head, which we had checked. (He has no hair on top!) Luckily it was diagnosed as a mole, which was removed anyway, but for a few days we lived with some of those scary feelings until we were told that it was nothing more sinister.
Keep up your chin – you’re a beautiful woman who is an inspiration to many. X
Sandie, I think my roots are even further North than yours…I get my red hair from my Danish grandmother! I often think of living somewhere shadier, but am told it wouldnt’ matter at the point. Thanks for commenting and all your support over the years!
I don’t think I ever told you how much I cried when you told me about the M diagnosis. I was so scared for you.
You were one of the few who knew! Going back today for more treatments, a chest zorch…I am so glad I figured out the hypnosis thing! Thanks for being in my life!
Toby, all of these comments prove one thing: everyone here sees your true beautiful self. And they’re so right about these terrible things making us stronger people who are resilient in the face of adversity, which you certainly are. You’re my hero, sweetie, and I can’t wait to see your gorgeous face up close & personal next week.
Thanks for calling me Holly, bless you. xox
Your post has touched a lot of us who got burned as kids. i was a fair blonde, and no one had sun screen in the 1950s and 1960s. My tan in Hawaii was solid freckles. I always put on long sleeves sometimes around noon, but I still got the basal stuff. I know that you are thinking about how you present yourself as successful author, but I want you to know that you just glow. That’s what we love about you.
Thank you dear friend!
Toby, thank you for your honesty and courage in sharing this. You’re an inspiration!
Another visit to the dermatologist for me next week. Following up on the removal of some “non-threatening” lesions a few months ago. However, I’ve got one of my forearm that is beginning to blacken and the edges appear to be growing. This one has me concerned.
My elderly mother just underwent a MOHS for a squamous cell carcinoma on top of her head. She had an amazing surgeon who performed a reconstructive surgery the following day so that she would have no bald spot left on top of her head. The cancer had begun right on the part line in her hair and was a result of hour upon hour of her sitting in the sun watching us as kids while we swam. And now I’m paying the price for those years of basking in the sun and playing round after round of golf.
Unlike you, I was born with dark hair and olive skin. I can remember how we used to slather on suntan lotion to magnify the effects of the sun; seeing who could come back from Spring Break with a darker tan. I am now paying the price for the stupidity of my youth and recently have had a few surgically removed and some sprayed off with liquid nitrogen. But, as I said, this new spot has me concerned.
Thanks for sharing this. Luckily you’re still a pretty girl. When the surgeon was removing a section of my chin earlier this year, he said, “I’ll only take off what is absolutely necessary.”
I told him that it was the popular consensus that the more of my face he removed, the better it would be for society as a whole and that I had a petition stating that very fact.
Best of luck to you with your continuing procedures. And thanks for writing about such a personal subject.
Oh Toby, this about broke my heart. I can’t even imagine going through all of that – and especially being so concentrated on the face, where you can’t hide the wounds or the scars. I wish I could put my arms around you and make it all go away. Your strength and the way your keep your hope and humor will never cease to amaze and inspire me.
<3 you.
Being fair and blond and from the pre sunscreen era, i have dealt with burning off and mohs too. My daughter who did tanning beds has had melanoma which they got early, thank God. My question is, can you reccommend a good cd for general relaxation? I also have a chronic pain condition and am always searching for help from anywhere i can find it. Best luck with your upcoming procedure. You are such a strong woman!
I would just google “hypnosis for pain management.” Very common and effective support. I make my own hypnosis recordings, and they work great even when it’s my own voice working on myself!
Thanks! I will do that.