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

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We can-cer vive!

Janis

 

 

Creepers and Stalkers and Trolls, Oh My!

troll-1916370_960_720.jpgWriting today is mostly therapeutic and I apologize in advance for my anxious thoughts. You see, I’m on a clinical trial for metastatic melanoma and due up for my next visit at Dana Farber Cancer Institute. I’ve done well to get on with life, take breaks as needed, and think like my pre-cancer self.

Without Exception

Today the thoughts creep in, a bit more than the usual cancer stuff. It’s always there, the c-word stuff, but I believe I’m exceptional! Exceptional at keeping thoughts at bay, exceptional at ignoring thoughts, and exceptionally exceptional at creating an aura of life is good. Other cancer patients can relate to this!

Three months without my melanoma team, free to push myself through fatigue heavy days and achy joint night. Samplings of joy, love, and life finely sift through my new colander of life. Every moment is rich, alive, and mine for the living.

Whither Shall I Wander?

Prisoner in my own mind, my desire to stay in-the-now wanders down the path of next up. Next up means scans, tests, appointments with oncologists, dermatologists, and the infusion staff. These thoughts are like stalkers in my mind, no longer allowing me the freedom to be.

Plans for the trip to Dana Farber unfold, questions to be asked are written in THE notebook, the medical backpack is unpacked and repacked. Stalker thoughts are unavoidable and while this is not the travel adventure we anticipate, having the blue print in place becomes the norm.

Lost in Thought

Inching closer to the big medical day, it’s more of a challenge to ensure that my health information is current, that all pieces are in place. Racing toward a date that I’d rather avoid, troll-like nasties invade my head space. Ugly, worrisome thoughts greedily take up residence, regardless of how I attempt to evict them.

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Stay the course!

Feelings of balance and ideas of inspiration are mislaid; moments of hope are obscured as medical melee overrules. The unknown of the next medical segment may leave us feeling lost and filled with fear. Forsake those feelings as best you can as solace comes from love and understanding.

In The Know

The best cancer tip I can offer is that being organized helps. It may not sound like much but a medical backpack, a notebook, a caregiver…any or all provide cancer support. Know your schedule and print it. You will learn how to find all the offices, labs, and treatment areas; though it sounds odd, there is comfort in having a routine for your cancer trips.

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Words of encouragement found on my fridge magnet from Dana Farber Cancer Institute.

Days and hours leading up to your next appointments may be fraught with worry. Organize ahead of your appointments, shoo away thoughts of the unknown to make room for thoughts of courage. #braverthanyoubelieve  #melanomatheskin #melanoma #cancer

We can-cervive,

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

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