Melanoma #5

Those of you who know me, or have followed this blog, know that my husband and I have had recurring melanomas. I started it, with a melanoma (stage 1, .9mm) on my ankle in June, 2003. That followed with one on my shoulder (stage 1, .8 mm) in 2013.

My husband has Parkinson’s, and astonishing as it may sound, those with Parkinson’s are 4-7 times more likely to have melanoma. His first was on the back of his neck (stage 1, .2mm) in 2015. Another followed in his ear (stage 1, .2mm) in 2018. This year, it was on his face.

WARNING! GRAPHIC SURGICAL PHOTOS FOLLOW!!

I post these photos and these blogs because when I was first diagnosed, I obsessively looked at photos of melanomas on the internet. Turns out, it was a good thing I educated myself like that, because I found the one on my shoulder, and all three of my husband’s.  Well, I didn’t like the look of them, so flagged them for his annual dermatologist visit. It is in that spirit that I post the following pictures of Al’s most recent diagnosis and surgery, because melanoma is a real thing. It is deadly, and you (every one of you) ought to have a thorough, annual skin check by a dermatologist. Just in case. 

Melanoma next to right eye

This was the melanoma as of January, 2019. I had seen it, and photographed it the previous year, because I didn’t like the look of it. (Just so I don’t run to the dermatologist every other day, when I see something weird, I photograph it and put it on my calendar to photograph again six weeks later, for comparison. Most things have resolved by then. This got darker and a little larger.) The dermatologist at the VA initially said it was nothing. A year later, I insisted he look at it again, and he scraped it for a biopsy. A scrape should never be done on a suspected melanoma. A punch biopsy is what’s called for, so just in case it is a melanoma, we can get an accurate depth of the tumor. Still, he scraped, so we have no depth. Still, melanoma.

Wisely, the VA declined to do the surgery so close to his eye, so he sent us to a fantastic oncology dermatologist/surgeon. She held a black light to the lesion, and this is the area that glowed.

The melanoma, including in-situ

Then she mapped out a 5mm margin. It looks all puffy in the photo below because she had already injected the anesthetic before I snapped the picture. (Interesting detail: When I asked her if it was all right that I took photos, and told her why, she said that most people do.)

Surgical lines with 5 mm margins

Then she cut.

She was doing what they call “Slow MOHS.” In normal MOHS surgery (for basal cell and squamous cell carcinomas) they cut with a tiny margin, then examine it right in the office to make sure they got it all. If the margins aren’t clear, they cut a little more, put a bandage on it and have the patient return to the waiting room while they test to see if they got it all this time. When they have clear margins, they stitch it up and send the patient on their way. Melanoma is a little different and they don’t have the capacity to test it in the office. They have to send it out to a pathologist.

Melanoma surgery

So they took the skin and sent it to pathology, put a bandage on his open wound and sent him home.

Fortunately, the pathologist said she got clean margins, so we went back the next day to be stitched up. I have to say, she was a master at it.

After melanoma surgery

This is how he looked when we left there, but bandaged, of course. A week later, the stitches came out and they put tape on it, which they said would fall off in a week to ten days. Right on schedule the tape fell off in the shower, and this is how it looks, 18 days after surgery.

18 days after melanoma surgery

Know your ABCDEs of melanoma:

A: Asymmetric. One half does not match the other half.

B: Border. Melanoma is unorganized. It does not grow in a uniform way. Borders have a “notched” appearance.

C: Color. Al’s melanoma had no particular color, but many times moles turn bad, and they can look pretty colorful. Al’s lesion (not a mole) just got darker. (Interesting point: most people don’t get new moles after they’re 30 years old.  In fact, most moles begin to regress as people get older. If you are middle aged or older and suddenly have a new mole, have it checked.)

D: Diameter. Any mole or suspicious lesion that is larger than a pencil eraser needs to be looked at.

E. Evolution. Melanoma is cancer. Cancer grows, changes. That’s why I take photographs for comparison. I would add to this Elevation. My first melanoma was a standard flat mole that grew tall.

Wear sunscreen and long sleeves in the sun.

Be safe out there. 

 

Adventures in Vegetarianism

Make no mistake: I’m a born carnivore. My diet has always been reasonably balanced, meaning meat, starch and vegetables with a big glass of milk. That’s the Mid-western way I was raised.

Then I had lunch with my son and his wife, and they had just taken a 7-day juice fast, and told me about a great movie, Fat, Sick, and Nearly Dead. I got the movie from Netflix. Loved it. Very inspirational. Got my juicer out of cold storage, cleaned it up and started juicing.  I mentioned it to a friend, and she said, “If you enjoyed that, you’d enjoy “Forks Over Knives.” Got that from Netflix, too. watched it, loved it.  I was convinced at that point that meat was not all that healthy for me, but what really knocked me out was that my husband, at the end of the film, said, “Let’s talk about our diets.” I’m a lightweight carnivore compared to Al, who hunts and fishes and brings home the well, not bacon, but goose, duck, salmon, and the occasional elk, venison and bison steak, roast and/or sausage.  If he wanted to make a change to his meat-eating ways, then maybe I ought to listen.

Then a trip to the doctor dealt the final blow. High cholesterol, high blood pressure, big number on the scale. What? I’d always been so healthy. Whoa. Not any more. I’m a little older now, though it’s hard to imagine, and apparently, things change.

So we went meatless. I went completely meatless, having seen the light in the doctor’s office, Al, almost so. Cooking became an adventure. I bought vegetarian cookbooks, consulted vegetarian friends, started frequenting vegetarian and vegan restaurants. Discovered the joys of miso. Discovered tempeh. Discovered seitan. Did not miss meat at all. Bought a treadmill.

Then, in my musings, I came across The China Study, purported to be the most comprehensive study of human nutrition ever conducted. I read it on the treadmill. Every day after I’d read a chapter, I’d run to Al, working on his fishing baits, and read the chapter to him. The one on heart disease. The one on diabetes. The one on nervous system breakdowns. The one on cancer. The proof is indisputable.

And suddenly, I was no longer just a vegetarian, I was a vegan. No more milk, cheese, or yogurt for me. Yikes. I’d always wondered why we drank so much milk, when no other mammals did after weaning. My cat used to like it, but then she’d puke it up fifteen minutes later. Cow’s milk causes those horrible ear infections in children…and more. Lots more. Milk no more. I bought a soymilk maker. Now instead of paying $4 for a quart of soymilk, I pay about $.29 for a quart of fresh soymilk.

Five months later, we’ve both lost over 20 pounds, fairly effortlessly. My cholesterol is down 30 points, so is Al’s. I’m a believer, and I feel great. I buy local, or eat fresh from the garden. The food we eat is beautiful on the plate and delicious on the tongue.

The other night on the news we watched a story about how some pork right now is infected with something or other. We just looked at each other and smiled.

About Melanoma

It occurs to me that this could be a teaching moment about melanoma.

My first melanoma began as a large freckle on my left ankle, the size of a dime, with a small flat black mole on the bottom edge of it. The pair had been there since I was a teenaged sun worshipper in the Hawaiian Islands, slathering on baby oil to gently sauté my skin to a golden brown in the tropical sun.

Fast forward thirty-some years to a Jazzercise class in Eugene, Oregon. At the first spring class, I put away my leggings and wore shorts. At the end of class, we were stretching, and I had my face down by my ankle for a close view. The freckle was puffed and pink, now the size of a quarter, the flat black mole was raised up tall, and at the top of the freckle was a little pink nodule with a vein clearly visible in it.

Not to my liking.

The next morning, the freckle was as brown and flat as ever, but the mole was still tall, and the little nodule still there.  When I scratched lightly on the freckle, it puffed up pink.

Since I’m a writer, research is my middle name, and my skin full of moles (I’ve had over a dozen small squamous cell carcinomas cut or frozen off my chest, face and forearms over the years), I went to the internet to look at photos of melanoma. (If you want to see some real nightmare stuff, Google melanoma photos. Good lord!) Mine didn’t look anything like that. But, I reasoned, could it eventually.

Yes.

I went to my family doctor who said he was certain it was nothing, but biopsied not only the tall black mole, but the little nodule. In doing so, he cut right through the freckle. The mole came back malignant melanoma, Breslow’s .9mm, Clark’s level IV. The nodule came back melanoma insitu. No clear margins.

I had a Wide Local Excision with a 3” in diameter skin graft and a sentinel node biopsy. This is where they inject blue dye into the tumor to see what lymph basins it will drain to. Mildly interesting. Made me pee blue for two days.

The freckle was all melanoma. They took out two lymph nodes, both negative for tumor. “What’s next?” I ask.

“If you start coughing blood or have a seizure, give us a call,” was the response from the surgeon.

“Really? No skin checks? No admonition to stay out of the sun?”

“That ship has sailed,” he said.

“Am I cured?”

“We only consider a melanoma patient to be cured of melanoma when they die of something else.” (Note to self: Keep a journal of jarring things that doctors say.)

Well, thanks to the internet, the Melanoma Patients’ Information Page (www.melanoma.org), and a lot more research, I am far more knowledgeable about melanoma than either my general physician or that surgeon. I have taken it upon myself to stay abreast of treatments and my own body. Eighteen months after my WLE, I found an oncologist and argued my way into a brain MRI and a body CT scan, all with negative results. He told me that from here on out, call if I had any symptoms (like what? A seizure or coughing blood?), but it wouldn’t matter if it happened in June or in November, by that time I would be Stage IV and quality of life, blah blah blah.  Meantime, he reiterated that they caught my tumor early, and my chances were good.

Amazing.

Fast forward again, 9 years later. The cloud of a recurrence or a metastasis has slowly dissolved over the years. I was in the clear.

But wait. What’s that weird mole on my shoulder? Has it always looked like that?

I’ve learned over the years that if I run to the dermatologist every time something weird pops up on my skin, I’d be going once a week. (One dermatologist told me that I had ruined my skin in Hawaii and skin cancers would be popping up on me like mushrooms some day.) So I took a photo of this mole and wrote on my calendar to check it again in forty days. I read somewhere once that nodular melanoma doubled in size every forty days.

After forty days, I took another picture and compared them.

And another.

And another. By now, I could see a significant difference. I had it biopsied, as melanoma is a cancer that becomes lethal in increments of tenths of a millimeter.

Sure enough. Melanoma. Dammit. .8 mm. The storm clouds that had just dissipated came roaring back.

Another wide local excision. This surgeon looked over my moles on my arm, the back of my arm and my back and said: “You are a melanoma waiting to happen, aren’t you?” (I guess I have made a memory journal of jarring things that doctors say.)

After the first melanoma, my chances of getting a second one were 8% higher than the normal population. After the second, my chances of getting a third zoom to 33% higher. Now I’m hyper vigilant.

And I need you to be, too.

First: if you have moles, know them. Be familiar with them. Notice any changes in them, and if you find one that’s crusty or bleeding, get thee to a dermatologist.

Secondly: Know the A, B, C, D, E signs of melanoma.

• A – Asymmetrical. Most moles are symmetrical. Melanoma pushes a mole out of its normal boundaries.
• B – Borders. Cancer is not organized, so it grows haphazardly as the immune system is trying to suppress it, resulting in notched borders.
• C – Color. Melanoma can be many colors, including amelanotic, meaning no color at all (skin color). Blue, red, pink, brown, black, pale… check into it.
• D – Diameter. If you have a mole bigger in diameter than a pencil eraser, it has potential. Be aware.
• E – Evolving. Anything suspicious that changes.

Melanoma kills. Don’t be afraid, be aware. Get skin checks. Wear sunscreen. Wear a hat.

Fighting Cancer

That’s the phrase: Fighting Cancer. We call ourselves “warriors.” But is it really the cancer we fight? Sure, there’s an element of that, and I can’t speak to the whole range of waging war from first diagnosis to final dying breath. I’ve been lucky. But I’ve had cancer twice now, and I can speak to the war that I wage.

I fight fear.

I don’t want to live my life in fear. I want to live in love and light and joy. I don’t want melanoma to rob me of that. It may, sometime in the future, but not now. Now I am only Stage 1, for the second time, and still the fears begin to collect in the wee hours of the morning. And believe me, there is enough to fear.

With each thing I read, with each conversation I have with those who have only the finest of intentions, with every glance at the tumor on my shoulder, and soon the scar where the tumor used to be, the fear nibbles at my consciousness. People who love me say all the right things, but even “Good that you caught it so early,” sparks fears that I didn’t catch it early enough. “You’ll be fine,” translates to a slow, steady march toward an ugly black death.

It’s nothing to make a doctor’s appointment, to get an injection, an excision, an infusion. It’s nothing to get a scan and wait for the results. That is medicine battling cancer. My war is much different.

A wise person said to me not long ago: “The only struggles you will ever have are with yourself.” I have found that to be true then, and true every day since then. And so it is with fighting cancer. This is a struggle between me and me. Between my heart and my soul. What cancer does to my body I can do little about except hope to make the all the proper decisions at the appropriate moments.

Meanwhile, I wait for my surgery appointment and work hard not to torture myself or others. I try to educate people about sunscreen and sun protection and checking their moles regularly for changes. I want people to be screened regularly by their dermatologists. The problem is, the best way to get the attention of others is by revving up their fears. I show them the scar on my ankle (a 3” diameter skin graft), and catch myself saying, “Aren’t you glad that’s not on your face?” And I’m ashamed of myself for working so hard to keep the fear from my own mind while pouring it onto others.

Be kind to those who are fighting cancer, for their enemies are legion. For me, for today, I’ll let the doctors fight my cancer, and I’ll concentrate on fighting my fears.

Evan Engstrom – 1942-2010

Heaven is richer today for the presence of my former husband and one of my best friends of all time. Evan Emil Engstrom died yesterday after a 26-year battle with cancer. The man was a warrior. 

I first met Evan when we were both struggling to get sober. I knew his sister and she was everything I wanted to be. Shortly thereafter, I met his mom and his kids, and knew this was the family for me. We married, I adopted his two wonderful children, and we set out to have a full life together. Evan was incredibly smart, the master of the one-line zingers, handy and clever, but most of all, he cared. Deeply. About everything, all the time. He wanted to do the right thing in all situations. My honorary Uncle Paul told me to marry “a man I could live up to.” Evan was just such a man, and he provided a moral compass for me from the moment we met, as well as everyone with whom he came into contact.

It wasn’t long after we married that Evan’s dentist found a small lump under his tongue. The surgery to eradicate this squamous cell carcinoma took the floor of his mouth, all the lymph nodes and big muscle on the left side of his neck, and required a skin graft from his thigh. The doctor told me: “The chances of his being here in two years are slim and none.” Well, they didn’t know Evan.

We moved from Maui to Oregon to provide a broader perspective of life for the kids, began to eat organically, raising most of our own food, and for a long time life was good. Eventually, however, we began to see that while we were really good friends, we did not make good mates. We discussed the fact that friendship is eternal while marriages are likely not, and we were in danger of losing our friendship as we toiled to maintain a broken marriage. So we separated, and eventually divorced, still committed to one another, still connected to one another via the heart, forever, in this world and throughout the next.

When I married Al, Evan came to our wedding. His classic comment: “I’ll come to all of your weddings, Liz, if there’s a meal in it for me.” Al had to know that my commitment to Evan was part of my family unit. And when Evan and Sharon discovered each other in a new way, we all became one big happy weird family, impossible to describe, but precious in every way.

Evan’s cancer came back. Again. And again. And yet again. He never gave up the fight against it, not after all the rest of us thought it might be a good idea that he just let go and let God. But he wanted to see his kids grow up. He wanted to see his grandkids grow up. And for the most part, he did. He leaves his two wonderful children, Nicole and Eron, and five grandsons, Luke, age 19, Joey, 17, Edison, 8 and Dean and Davison, both 3.

Evan left us too early. I particularly grieve that he and Sharon had such limited time together to explore their new relationship, to travel the world in happy retirement. But it is what it is, and we are all richer for knowing and loving him for as long as he was on loan to us.

Congratulations on your graduation, Evan. We all look forward to seeing you on the other side.

Farrah’s Story

I just heard that Part 2 of Farrah’s Story is in the works.

For those who didn’t watch the 2-hour documentary on NBC last Sunday night, it chronicled Farrah Fawcett’s two-year battle with cancer. She said that the purpose of filming and screening her horrendously painful treatments was to educate, but what did we learn?

Not much. We learned that Farrah is a fighter, to an astonishing degree.  The cringe factor in her treatments was extreme.

But we didn’t learn much else. We only learned the type of cancer almost as an aside (squamous cell carcinoma). We didn’t learn anything about squamous, how it grows or spreads. We didn’t learn how she discovered this tumor. We didn’t learn anything about her treatment options or why she chose the ones she did. Instead, we learned about her iconic hair, and how the doctors tried to perserve it. Good grief.

So, Ryan, if you’re not out to exploit the pain and suffering of the woman you love, use this platform to do some serious education. We all know that chemo makes people puke. That’s not the type of learning we’re after. We want to know the medical stuff of treatment. We want to know what trials are being done. There’s not a one of us who hasn’t been personally affected by cancer, and we’re after answers. Show us her scans. Have a doctor explain them. Show us alternative treatments and experimental treatments and how they work, and why they didn’t.

We all know and love Farrah, but her story has so much more potential to save lives and educate people than what we endured by watching her incredible suffering on Sunday night.

The Afterlife vs. the Afterdeath

I just finished reading a most remarkable book, Stiff: The Curious Lives of Human Cadavers.

 

Being somewhat ghoulish by nature, once I heard about the existence of this book, I couldn’t wait to read what this hilariously funny author had discovered in her research about bodies donated for medical and other research.

I was amazed.

First, I was astonished to discover how researchers treat their cadavers with tremendous respect, even if they’re subjecting them to a t-bone car crash to find out what happens to the brain when it is rattled from a side impact (this research led to side-impact airbags, by the way). Medical students are even more reverent about the cadavers they are privileged to study. Some even name them. These students know that they would never be able to learn some of this stuff by watching a video, so every cadaver helps immeasurably to educate a new medical student.

The body of knowledge that a selfless donor adds to medicine, safety, forensics… it’s quite amazing. I had no idea. And fewer and fewer people are donating their remains to research.

My husband is not crazy about the idea of me donating my body to research, but I’m filling out the forms today, and he’ll have to get used to the idea. As a cancer survivor, I can’t donate organs like kidneys, heart, corneas, bone marrow, etc.  But if someone can learn something by using this tissue after I’m finished with it, before reducing it to ash, I think this is a good thing.

We spend a lot of time talking and thinking about where our souls or identites or personalities go after death, but we hardly give a thought to whether we waste our remains or put them to good use.

Please give it some thought.

Skin cancers

Since I’ve opened this particular can of worms, instead of merely ranting, perhaps I could pass along some valuable information.

Melanoma is deadly. 75,000 people will be diagnosed with melanoma this year, and 7,500 will die. The rest will be mightily disfigured. Normally, melanoma begins in a mole, which grows, changes, bleeds, itches, or just looks funky. Know your skin. Go annually to a dermotologist for an all-over skin check, and I do mean all-over. Scalp, butt, crotch, armpits, the whole nine yards. Take photos of anything suspicious, so you can monitor it for slow changes. Bring any of those changes to your doctor’s attention.

Know the ABCDs of Melanoma.

A: Asymetrical. Cancer is not organized, so while most moles are relatively round, cancer grows in scattered patterns. If a mole has changed so that one half of it is a different shape than the other half, that’s suspicious. Get it checked out.

B. Borders. Because cancer grows in a disorganized way, the borders of a melanoma will be notched, not smooth and round like most moles.

C. Color. Melanoma can be all colors, from blue to pink, brown, black and even skin-colored (amelanotic).

And D. Diameter. Any mole over 1/4″ in diameter (the size of a pencil eraser)ought to be looked at and monitored.

I will add to this E. Elevation. My melanoma was a mole that grew from flat to tall.

But melanoma is not the only skin cancer. There are also squamous cell and basal cell carcinomas. All of them need to be diagnosed and removed as early as possible. These are not as life-threatening as melanoma, but they should be treated as soon as they are noted.

The bottom line is: know your skin. Pay attention to changes. Don’t tan. Stay out of the direct sun. Wear sunscreen and cover up.

Read more about it at American Cancer Society.

Gratitude – and a Rant

I know I have pledged to keep this blog about gratitude for the month of November, and my gratitude knows no bounds, literally. I have a wonderful husband, family, job, dog, house, friends… every detail of my life (except one) is quite wonderful, and I am exceedingly appreciative.

The one exception is my skin. And I’m going to rant about this because I just had another biopsy (the third just this year) because I ruined my skin by sun worshipping in Hawaii for seventeen years.

The first time I had a squamous cell carcinoma cut off my chest, the dermotologist said, “Oh, yes, you’ve ruined your skin. These things will be popping up like mushrooms for the rest of your life.” He was right. I’ve had literally dozens taken off, and had a very serious bout with melanoma that will continue to haunt me. I caught it early, but as the oncologist said, “We don’t consider anyone cured of melanoma until they die of something else.”

All because I loved being tan.

Why do I bring this up now? Because I have just had what we all think is a basal cell carcinoma biopsied from the middle-finger knuckle on my left hand. Basal cell is not that big a deal; it grows and the scars are ugly when it’s removed (I might need a skin graft–my second), but it’s not life-threatening. All because I liked having that “healthy glow” from a suntan.

When they cut one off my face, I almost fainted a half hour later in a department store and had to sit on a big canister of popcorn in a display and put my head between my knees. Imagine having someone cut on your face because twenty years earlier you wanted to wear a strapless dress and not have a tan line.

My gym offers a deal when you buy multiple tanning sessions at a time. I am here to tell you, living proof with scars from my face to my ankles and a perpetual cloud hanging over my happiness, tanning is expensive.

You can’t afford it.

Thinking about prayer…

Prayer is an interesting thing.

In my spiritual program, we’re told to pray only for knowledge of God’s will in our lives and the power to carry that out. That has served me well all these years. I try not to petition for things, as I believe we all have our paths, we all have a different journey, and there’s no way I know what your journey is, so it would be impudent for me to make requests.

And yet…

My sweet ex-husband, Evan, one of my favorite people on the planet and still one of my closest and dearest friends, had devastating surgery yesterday. I found myself asking everybody to pray for him. This is his third disfiguring, life-threatening battle with cancer, and nobody expected him to be around come 1985, much less 2008. He knows he’s been living on borrowed time and that has given him a great sense of humor about it all and a fragrance of gratitude that is pleasant to be around.

Evan and I raised two stellar kids together. We were not good mates, but we are great friends. When our marriage began to crumble back in 1990, we decided to jettison the marriage before it ruined our friendship. That was a good call. We’ve both moved on to excellent relationships, and remain close with each other and our kids and grandkids. The thought of losing him makes me crazy.

And yet how much more can we expect him to endure?

So when I ask you to pray for him today, I’m asking you to pray so he has knowledge of God’s will in his life and the power to carry that out.

That’s all.

That’s enough.