6 Things You May Not Know About Melanoma

Breaking News

Some of you may remember a time when breaking news meant something intensely serious was happening. When J.F.K. died I was watching some morning show while my Mother ironed (another concept that dates many of us!). I remember it vaguely as I was young; my mother was crying and that felt like breaking news, like something had broken because it had.

Breaking news today, well that’s an occurrence that we no longer pay attention to as it has lost it’s earnestness. Breaking news is everywhere, everyday and no longer has any significant value. That leaves each of us to determine what to watch, what not. Like the friend who is never quite honest, I’ve tired with the uncertainty of the news and the shortage of information, and the lunacy is abundant.

BUT…

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Watch for spots

There are things you may not know about metastatic melanoma, a type of skin cancer, and I feel it is breaking news to inform you with a few short hits on what we know at this point. I save the most interesting for last so keep reading! There are many misconceptions about melanoma, so here’s a basic list of health information:

  1. Melanoma is deadly so be sure to be aware of the abcde’s of melanoma. Do skin checks and be #sunsmart.
  2.  Basal cell and squamous cell carcinoma are considered non-melanoma skin cancers. Read about them here at Web MD. While they are skin cancers, they do not turn into melanoma.
  3. Cancer resources for skin related disease can be found in online resources such as the American Academy of Dermatology Association. The photos may help but don’t let that be your guide. Like the shirt that you bought online that turned out to be a completely different color, your skin cancer may not look like digital photos.Be wise and see a dermatologist in person.
  4.  Depending on the staging, melanoma is not a quick surgical removal. Possibilities include excision, plastic surgery, nuclear dyes (the most painful thing ever) to find lymph node drainage, radiation, and a plethora of scans and tests.
  5. Pay attention to the UV Index – the sun is powerful!

And Here It Is…The REAL Breaking News!

   6. Melanoma does NOT react positively in chemo treatment.

Yeah, that’s the big news. it may be used to relieve symptoms of this aggressive disease, most commonly for Stage IV patients. Cancer treatment is equated to chemotherapy and guess what? That’s not always true! I’ve had people say things like:

  • “Wow! You must be getting a light dose. You haven’t lost your hair”
  • “You look really healthy compared to other people I know who’ve been on chemo”
  • “Why are you fatigued if you’re not receiving chemotherapy?”

My cancer-related fatigue is from a clinical trial that I participate in and I receive the drug Yervoy. The study compares Yervoy to other drugs such as Keytruda used for metastatic melanoma. At this time, there is no cure for melanoma and I hope that in participating in this immunotherapy research, that someday there will be a drug or series of drugs that can reduce the death rate for others, and not be filled with risks and side effects.

Visually, I do look like myself and I believe I will heal. Fatigue is intense at times; not that I need to nap but I feel like the a horse pulling thousand pound weights most days. Aches are challenging me more over time, and I’ve been offered steroids to alleviate the pain. I’m not ready to put more drugs into this soupy/saucy mix but I’m close.

Every day is a great day. I only mention some of the melanoma cancer tips because there are many misconceptions. There’s a lot going on inside some of us though it may not show! I’ve learned to not judge a book by it’s cover in a medical sense now that I have medical turmoil within. Inspiration also comes from within, so look beyond all the cancer craziness, find your courage, and bring that to the surface and let it shine! #melanomatheskin #getnaked #melanoma #cancer #yervoy

Thanks for signing up and please do share your thoughts as this is how we learn, grow, and find hope!

We can-cer vive!

Janis

 

 

Heir Apparent

Battle Royal

Yes, I sometimes think in dark places.  I mean with metastatic melanoma, scars on my face from excisions, radiation treatment, and now a clinical trial, it’s not all that hard to find your mind go murky. At times, I feel like the next in my family, riddled with cancer, to wear the crown of cancer.

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A person of our American royalty, former First Lady Eleanor Roosevelt is the central figure to a fictional account of her life in the book, White Houses by Amy Bloom. I enjoyed reading this novel that imagines the life between Eleanor and Lorena Hickok though it blurred the lines for me between historical information and an invented story. I devoured the book knowing I prefer more factual portrayals of people of ER’s stature.

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One of my favorite quotes by Eleanor Roosevelt hangs on my fridge!

 

Royal Treatment

Why mention White Houses? Author Amy Bloom uses a description about saplings in the woods (forgive me for not having the wording handy). In comparing shaded saplings to people, the author relates the smaller trees will be stunted by those towering trees that relish the canopy, thriving on the light well fought for by competing trees.

An analogy that works eloquently for those of us with skin cancer. Do we now hide in the recesses of  dingy corners of our world? Should we resign ourselves to a tenebrous existence far from the beckoning sun? Are we relegated to be lowly saplings who never benefit from the light?

Those that reach for the light grow!

Hell, no! Shadowy thoughts like that are the last thing we need. Acknowledge those cancer moments, grab your cancer crown (a large brimmed hat for me!) and sun screen, and seek the light, seek the positive.

Use sun-safe habits and your #sunsmarts. Enjoy the things you love and keep solar mindfulness with you at all times. Take your vitamin D and find the courage to get out there! Light is metaphorical for illuminating the positive and also offers physical improvement when sensibly enjoyed. That doesn’t mean ignore your doctors!

Some People are…Well…A Royal Pain

Where did the light come for this blog? I just read a blog post where the writer stated we need direct sun and that sun screen is not good for us. Really? I know that the sun is essential to life; I get that in a big way, but really, no sun safety? Yes, that statement angers me because I GO TO THE DOCTORS, I GO THROUGH THE PAIN, I FIGHT FOR MY LIFE. I commented on that blog! The response explained that melanoma is a blessing. Really? No words here.

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Stand Tall!

Reach for the light every day. Open your mind, open your heart, and you will leave the gloomy thoughts and the darkness in the undergrowth. Don’t read trivial stuff. Do what you love and grow strong; become the tall tree.  #melanomatheskin #cancer #melanoma #readingmatters #becomethetalltree

We can-cer vive!

Janis

 

Sun Worship Part III

Time’s Up…We Know Better

Yeah, I’ve written about my childhood days in the sun and my days as a naive adult, too. But how did I manage to continue this sun worship until I became another cancer statistic? Those of you who are still sun junkies will want to read this I hope.This sun habit is no longer sensible. It kills.

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With adult children with lives of their own, my time beyond work was…well, mine! A novel idea, I readily choose more warm weather vacations in the Spring, sought out time at the beach, and did a lot more mucking about with boats. For me, life has always been best when on, in, or near water.

My sun-safe habits were moderate. Because of sun damage at a young age, I applied sunscreen to my nose regularly. Super solar days, I’d put on a baseball cap and bring a long sleeve shirt for the end-of-the day sunburn. If at the beach, I’d turn my chair away from the late day sun. On a boat, I’d be sure to cover up my skin as the day floated along. I started wearing sun glasses more…I mean who had heard of ocular melamona?

Feel the Burn

For those warm weather Spring vacations, I did something that I felt was very smart. I went to tanning beds. Being a logical person, I wanted to not burn on vacation and be able to participate in whatever sand, sun, sea adventure that came along. By tanning, my skin had a base of tan allowing me to be out and about without worrying about frying. I wouldn’t call myself a frequent flyer for tanning, but felt better for going. Perhaps it was a vitamin D boost or perhaps it was feeling warm?

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Whatever my source of sun, mindfulness had a different spin. At the end of the day, using lotion to prevent sun damage was part of the routine. Some days, a soak in an oil bath rejuvenated my dry skin. Different home remedies might include using a vinegar soaked wash cloth or a cold compress for sunburn. What sunburn remedies do you know of? I’d like to include them in a future blog listing so let me know!

The BIG Burn

The result of my sun-safe habits?  Metastatic melanoma. Hear my sarcasm? I wasn’t protecting myself. For the most part, I was doing “after: sun damage care. In my lifetime, our culture had no fear of the sun. We worship tan bodies, warm heat, and the relaxation of the hazy, lazy days of summer. My logic on how to have that healthy glow was actually setting me up for the big burn, the burn of fighting for my life.

Are you thinking you won’t get skin cancer? Or that if you have a little area removed, that life is good so grab that beach chair? There are different types of skin cancer, all of them are scary and melanoma is deadly. You don’t want to hear this but neither did I when I got that biopsy result that changed my life. Please think again!

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Thanks for following me and please let me know how you are changing the sun worship culture in your life. #Sunsmarts are in! Love being outside and  being sun shy is where it is at now that we know better! Save a life-yours! Be practical and learn sun-safe habits. #melanoma #melanomatheskin #naturalskinrocks #cancer #mindfulness

We can-cer vive!

Janis

 

I Scream, You Scream

Get Out!

National Ice Cream Day is celebrated annually the 3rd Sunday of July.  Perfect time to go out and have an ice cream! For those of you who are lactose intolerant, this post may not interest you, and for those who have skin cancer and fear the sun, I say, get out!

It’s tricky to have melanoma or other skin cancers because, well the sun is with us every day. Does it make you want to scream, having the deadly melanoma and having to be mindful of the sun? It’s about new sun-safe habits and creating easy routines.

Everyone should be using sunscreen, every day. Do you struggle with being outside? Does fear keep you from living in the moment? How many of your friends go with the belief that skin cancer won’t happen to them?

#EverydayisaSUNday

Recently handed an ad from the American Society for Dermatlogic Surgery, I was reminded just how much sunscreen matters. While I don’t know the ASDS personally,  promotion of sun safety is so important and I was pleased to see their reminder.

The sun is with us every day. Every, every, every day! With gray and dreary weather that solar reach is coming down to earth. Late in the day sunset viewing those rays are streaming at you. Middle of a cold winter day out snowshoeing that reflection off the snow is…well, a killer actually.

Skin cancer can make one very sun shy.  Don’t let melanoma and other skin cancers push you into the corner. You don’t need to live life in the dark either. Create sun-safe habits and have the courage to get out there and live your life! Wear sunscreen, clothing, and bring along your umbrella.

Favor a Flavor?

Oh, the options! My grandgirl and I have a few favorites at the top of our list though we love it all! Sugar cone and the very smallest size, because in America smallest still is a super size! Creamees just don’t cut it for us and we skip the condiments like sprinkles. It’s really about going out for an ice cream…together! Let’s talk ice cream..what’s your scoop?

And hey, did you see this?  U.S News has a listing of some free and discounted options for National Ice Cream Day. I think I might just google some ice cream shoppes local to me and get this mission going! I mean, National Ice Cream Day may be a gimmick and come only one day a year, but hey, why not? (I’ll write about sunscreen “flavors” another day).

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None of us knows what lies ahead in life (except death). Gather up that weary immunotherapy body or whatever your cancer is giving you today. Go out for National Ice Cream Day this Sunday.  Take a hike. Swim in the ocean. Mindfulness of sun days matters as does mindfulness of each and every day.  This day is the one that you have so put on your sunscreen and lather up with hope.

#EverydayisaSUNday #Nationalicecreamday #takeahike #melanomatheskin #melanoma #sunsmarts #favoriteflavor

We can-cer vive!

Janis

Seeing Spots

In the Beginning

Start, stop, start, stop. I began this blog post two months ago and basically, haven’t been able to get past the title. Melanoma is a game changer for sure. All types of skin cancer are formidable foes, and how do you do skin checks without letting it rule your life and your mind? I’m delving in to a bit of my cancer history here…the beginning and a tougher place to bring myself than I realized.

My first diagnosis was in 2015, after noticing and watching an area on my left cheek for a few months. It didn’t look particularly “stand-out, hey I’m different” and comparing my spot with online photos, well, don’t bother is my advice. Use your sunsmarts and get screened for anything worrisome; digital diagnosis is virtual, not real.

Another day, I’ll talk more about surgeries, treatments, radiation, clinical trials, and all that “fun” that is how we live now.  Today’s blog is about looking for unusual spots. That little area on my cheek wasn’t all that different than all the other spots. I mean, we all have our spots, right?

For me, the area felt different to the touch, an internal hmmmm that left me wondering “IF” something was going on. Going for a routine physical, I mentioned it to my doctor.  She felt it was nothing but worthy of a biopsy, so off to the local dermatologist I went.

X Marks the Spot

The call, the one we never want to get, never ever…came less than two weeks after the punch biopsy. The doctor, grave and concerned, informed me of the melanoma and that he could set up appointments with an oncologist and surgeon.

Yes, that was the start of my journey with cancer. We cancer patients all have our stories, our moment of truth, that one conversation.  The c-word that turns so many of our worlds upside down. Health information came from all directions. Phone calls and appointments were quickly scheduled. The dreaded health insurance queries ensued.

A lifetime of sun was now encapsulated in a tiny spot in my left cheek or possibly racing through my body; the belief that I would never have skin cancer stared me down in the mirror every day with a small,  purplish spot. Grateful that the carcinoma was right there staring at me, I wonder if I would have found it if it had been in a less obvious place?

Learning the Alphabet

A basic guideline, the Melanoma Research Foundation lists the ABCDE’s of melanoma with photos. Again, I would note this is not the gospel of diagnosis.  My spot looked nothing like these photos and only minor areas of note in the listing of ABCDE’s:

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I do think the guideline is just that, a guide to start your understanding of skin cancer. Cancer tips can be sketchy so go with your gut. The one thing I would note is that my first spot was purple, just a faint purple color-enough so that I noticed it was not like the freckles, skin spots, or scars. So the letter C was relevant for me.

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In hindsight, the letter C for Color and the letter E for Evolving were relevant with my first melanoma diagnosis. However, I wasn’t even aware of the guidelines.

The letter E, evolving, became present over time.  It was very slight but my spot was changing. I noticed it sometimes, again, a slight feeling in my cheek. Indescribable, something just felt different.

Blind Spot

Because I was always healthy and had no concerns. I was quite sure I didn’t have skin cancer; it really wasn’t possible. Until, it all was possible and not only did I have skin cancer, I had the deadly kind, melanoma. Courage came later.

Have a spot that looks different to you? Know that you have skin damage? Have you spent a lot of time outside? Get a skin check done by a dermatologist. Many people do this annually now. Don’t wait because melanoma is not just on the surface; it buries deeply into your tissue.  The deeper the cancer, the more challenging the treatment.

Spot On!

Ending on a positive note, a dear friend and another freckle face, was very concerned and supportive at my first diagnosis. As a retired nurse, it also turned out she was a bit concerned about her own bespeckled self. In talking one day, she confessed, “I’m looking at every friggin’ freckle and mole I have, thanks to you,  Janis. That’s a lot of work for a retired person!” Gotta love her!

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Yes, give those spots due diligence and #getnaked.  Screening and early detection matter for all skin types. Leave paranoia behind and enjoy life sensibly. I’d love to hear how often you do skin checks and what you use as your guide? #melanoma #melanomatheskin #cancer

We can-cer vive!

Janis

 

Feel the Heat

Riding the Wave

Wow! The Northeast has soared to places no New Englander has ever been…or at least in my neck of the woods. With mercury hitting 93 degrees in the shade on July 4th, it gave even the most avid sun lover reason to find relief! Finding parade shade in the morning was excellent, followed by some time hiding out in the almost-cool cellar, and then, choosing to be inside at the neighbor’s barbecue versus on the hot deck overlooking the ocean.

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Those in the south would think a temp of 93 is nothing, though we in the North tend to melt with anything about 75 degrees! How do you deal with heatwaves? I now head into warmer days with a plan. I pay attention to the UV Index most days because with melanoma, it’s just what you do.  There’s also a Heat Index chart and other heat safety information at http://www.weather.gov, all of which is very relevant right now.

Heat Seeking Miss

I use to love heat, the more the better as long as I had plenty of water…to drink and to jump into for relief! Beach days for sure, I’d find it tough to have work or other commitments on serious heat days.  Water adventures, be it lake or ocean, brought me to my mecca and the hotter the better. I always loved the approach of summer solstice and the sun days of summer.

 

I chose to never complain on scorchers because I wasn’t crazy about the deep freeze of winter; if I am going to complain, it will be about that snow crunching, nostril-hair freezing, #nodesiretobeoutside winter weather. I’m still not going to complain about the heat but phew, I am glad that today’s storms will clear the air.

Intense Sense

So, what’s changed so that I can’t take the heat? For me, a lot, though I hadn’t really noticed the trend. I’m a bit older so my body seems to stress a bit with temperature extremes. The clinical trial that I am on through Dana Farber Cancer Institute leaves me fatigued; I wake up fatigued, I go to bed fatigued. Lastly, I spend less time in the hot sun so it feels brighter, hotter, and takes very little to wear me down!

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Throw heat and humidity together, and for any cancer patient, elderly person, or others with no reserve, it means no way to re-charge. I’ll always love summer and the gorgeous weather that allows me to be out and about-living and breathing. Mindfulness is important when planning for fun in the sun; it makes summer celebrations wonderful when you keep options open for all!

Thanks for signing up for my blog and remember that sun safety! #melanoma #melanomatheskin #heatwave #sunsmarts #skincancer

We can-cer vive!

Janis

Knee High by the Fourth of July

So whose knee are we talking here, anyway? I mean, if it’s mine the corn’s not meeting the standard. If it’s my “almost five” grandson, things are ahead of schedule! This year, gardening keeps me focused on life, on what might be if you believe.

Mary, Mary Quite Contrary

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Three Sisters Garden Early June 2018

Back in March, I was planning and planting my gardens, something I never had time for when reaching out and outreaching with literacy initiatives.  Originally, I envisioned seedlings in the cellar as the good light and extra space seemed best.  However, I learned I needed great light so plywood splayed around the living room and seeds germinated!

 

Working with all my seedlings this Spring kept me busy enough (in and around dragging through the day!), and also got me to thinking, thinking about things other than cancer.  Sunshine is for growing food, flowers, trees, and life. Flora, the goddess of flowers and nurturer of botany, needs light. Light is life.

Ironically, here I find myself dealing with metastatic melanoma and learning how to live with the sun and not directly in it. That same invaluable sunshine that gives life to us can also take it away. Each day I choose to find inspiration in the light, the power it brings to Mother Earth. Find your passion to see you through and the courage to stay out of the darkness!

Three Sisters Garden

One of four siblings, and with 3 of us females, I decided to try a Three Sisters Garden this year. Some of my seedlings included corn and winter squash.  These are two of the Three Sisters vegetables, and I later planted bean seeds directly into the garden, representing the Three Sisters. The day I planted the seedlings of corn and squash, the clouds melted into rain. At first I thought it could be sister tears though quickly realized this gentle, unexpected rain was to settle the plants, to nurture, just as my sisters always had with me.

 

Remember the book Carrots Love Tomatoes?  The Three Sisters Garden is of Native American origin and is a variation on companion planting.  Each of these 3 plants, winter squash, beans and corn, provides nutrients and growing space for the others.  I was reminded of this method last Fall when I read Braiding Sweetgrass by Robin Wall Kimmerer.  After borrowing this book from my library, I purchased a copy because it resonates with me deeply.

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Three Sisters Garden Early July 2018

My two sisters have passed, each of a different cancer, and this is my way of recognizing the hole that lost love leaves and that we all incorporate loss into life.  Nurturing ourselves, remembering others, and living the best damn life we’ve got today. My garden is definitely an experiment…in patience, in growth, and in the hope of tomorrow. But then, isn’t life an experiment as well?

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Three Sisters Garden July 2, 2018

Knee high by the Fourth of July? Hell, yeah! What are seeds of inspiration that you sow?  Please comment on how you look to the positive! #threesistersgarden #melanoma #melanomatheskin #cancer #garden

We Can-cer vive!

Janis