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

 

Fear and Reading-“The Emperor of All Maladies”

Warning: Dangerous Curve Ahead

Librarian and literacy advocate-gotta love a career like that. I find my melanoma takes away from what I want to do, how I thought my life played out. It’s changed my course in life and how dare those cancer cells take my greatest passions from me. Okay, I said it. Now, it’s time to get on with the life I never envisioned! Here’s one great book and one tiny, little reason not to read it, FEAR!

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Many of us get thrown curves in life and the big one for me right now happens to be cancer. I’ve always loved my profession and especially, the possibilities for connecting people with books, materials, resources, and education to empower them.  So it’s bound to overflow into my blog!

Avenue of Escape

My librarian/mentor and best bud long ago taught me that quite often the kids reading sports books are not the ones out playing sports…they just want to read about it.  The kids reading about abuse and tough family situations are quite often not living that at home, they just want to read about.  Often, our reading is about escape, about learning about what we don’t experience. We might just learn something!

I want to share a book about cancer. Now, why would we cancer patients want to read The Emperor of All Maladies by Siddhartha Mukherjee? Initially, I had no idea it was about cancer and as a lover of non-fiction (okay, I confess…I am a multi-genre lover who keeps multiple titles on the nightstand!), I made a mental note years ago that I wanted to check out that book some day.

In 2011, it won the Pulitzer Prize which reminded me again that someday I would read it. Then a few years later, I learned the subtitle :A Biography of Cancer. Shit! How does one read this book when already drowning in words like biopsy, cancer diagnosis, treatment, stress..that list is long so just suffice to say c-word stuff?

Mukherjee’s book was first published in 2010, so by 2017 with another melanoma diagnosis, it was time. I mean, the book’s information was no longer hot off the press and I knew I wanted to read it. Fear, fear, fear that it would bring me to places I didn’t want to go had held me back.

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The Road is Long

Goodreads.com offers relevant reviews and varied thoughts on this book, but I’d like to share a few thoughts as well. Non-fiction, in the contemporary publishing market, tends to weave facts with interesting story lines. The Emperor of All Maladies:A Biography of Cancer traces cancer from thousands of years ago to the 21st century, interweaving science, history, and human experience. Cancer has not taken the express lane!

Rather than feeling chaffed reading this title, I felt soothed. The Dana Farber Cancer Institute connection added another layer of confidence with my already swelling assurance of my skin cancer team. Secondly, I gained tremendous respect for the scientists, oncologists, and other professionals who have led and continue to advance toward cures; this journey has been far longer than I realized.

 

Lastly (though I could go on and on about this book!), it humbled me. People talk of the cancer club, yet this title manifests how each cancer patient has their own brave battle, and that together each of our unique roads leads forward together, be it caregiver,  healthcare staff, or patients. Thank you to ALL of those who came before us on this journey.

Fellow blogger and cancer patient, Melanoma in Me, writes about this amazing book and an opportunity to meet the author. I’ve met many authors in my life and hearing Mukherjee discuss cancer and what’s next would be even more inspirational. I hope to have that opportunity knowing how quickly the knowledge-base about cancer has expanded in the last decade.

In reading The Emperor of All Maladies, I am reminded that knowledge breaks down fear. Fear is a detour, a roadblock, and this post, a small example of how to leave it behind before it leaves you behind. Try this book, and let me know what you think! Thanks for signing up for my blog, too! #nofear #readingrisk #cancer #mindfulness #melanomatheskin #melanoma

We Can-cer vive!

Janis

PS I just realized PBS made a documentary (Ken Burns) about this in 2015 so I will watch it perhaps someday!

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

Matters of Life and Death…and Books, Of Course!

Immortality is not something I seek. How about you? Life is so amazing, and so challenging, too. It’s that balance thing which we live with every day. Live beyond fear and just live!

Sudden Death

My grandfather was run over and died, a best friend died far too young and wrongfully, a child died in a terrible accident. Unexpected death is tragic, shocking, and contorts the mind to make sense of it. Emotions are exposed, raw and beyond painful. Pieces never quite fit together again. Trauma and tragedy envelope the unexpected loss.

The one thing we know is that there is only one way out of this life. Is death more palatable for those who know they have only so much time? Would my grandfather have played his hand differently if he knew when his last day was? Would you?

A Fate Worse Than Death

Cancer patients live with the fragility of it all; diagnosis, stages, treatments, and even, survival rates. With my melanoma biopsies, options in life changed: is this deadly?, what is the prognosis?, and projects like getting my “things in order” floated through my mind. Some days, meeting an untimely death might sound easier, but then, you still have today!

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I recently read The Time Traveler’s Wife by Audrey Niffenegger. My husband has loved this book for some time; I have at last read it. The beginning was a bit slow and confusing, but I always like to give a book 50-100 pages to develop. And develop it does as Niffenegger creates a story, both intricate and believable. This title offers deep possibilities for discussion.Would I want to know what is ahead?  Would you? Is it better that we don’t know?

In reading this book, it reminded me of Natalie Babbit’s  Tuck Everlasting, a riveting children’s book that explores the idea of living forever. A town wide read for our small Vermont community many years ago, concepts of eternal life, the benefits of NOT living forever, and avoiding the process of aging were exposed with prolific conversation for all ages.  Read it with your child or on your own; maybe it is okay that we have an end to this journey we call life!

“Now Is Eternity;

Now is The Immortal Life” (Richard Jefferies). Find courage in the day that you have; be present now!  Human nature seeks hope:  in life and in living, in treatments and cures, in one day or one year. Courage lies in the belief of a tomorrow. Find your inspiration to keep moving forward and balance that with what you have right now.  Cancer steals time-give yourself what quality you can through meditation, creating positive moments, and making the best of this day. Easier said than done, but make the most of this instant.

On  my reading list- The Immortalists by Chloe Benjamin. Yikes! Another book about living and dying. What if we did know what day we would die? Fascinating to consider, how would you live knowing your exact moment of passing?  This is one of the titles that made Jimmy Fallon’s summer reading list suggestions and subsequent vote. It’s had rave reviews and will offer another window on life/death debates.

Windows into our future may not be the best idea.  These 3 titles glimpse into what “might” be, given that crystal ball. For me, it’s intriguing to play with the possibilities, but I’m a realist. I’m definitely going to read The Immortalists but for now, I intend to pause from ideas of time travel, death, and immortality. It’s not about fear today, it’s just about today, this moment, and about what is. #whatareyoureading #melanomatheskin #melanoma #Tuesdaythoughts #cancer #reading

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!

heatwave watering

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