Melanoma and Self-Deceit Among Us

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Warning! Content is Meant to Scare YOU!

Skin cancer is no big deal, right? I believed this as I continued to love beach days, boat days, and time outside from the moment I was born until a few years ago. I truly thought that I would never have skin cancer and if I did, it could just be removed in the doctor office and back to the beach we go!

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Another melanoma excision, May 2017.

Metastatic melanoma is deadly; more than that, the things we cancer patients go through should be enough to scare everyone out of the sun. Multiple surgeries, embarrassing spot checks with a group of dermatologists, knowledgeable oncologists recommending radiation to live, and choosing to be part of a clinical trial as there is no known cure for this disease. Does any of that freak you out?

Ignorance is Bliss

I’m hoping it does! It’s not me wishing you any of what’s become my norm, NONE OF IT! What I’ve noticed is that ignorance is bliss when it comes to melanoma. There is some sort of selective hearing; mostly, I find the family and friends can’t deal. I never preach, I never tell others what to do. I think I might be the poster child for what can go wrong and  people don’t want to be reminded.

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I still go to the beach, I still love the beach. Sanctuary, balance, and peace are found listening to the surf, watching the waves. I do it differently now. Beyond the usual sunscreen,  I wear SPF clothing. If sitting, I keep moving position even though I’m under an umbrella. Yes, I even have a shade tent. I PACK…for the beach.

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Still my happy place but with modifications.

Sounds a bit much?  This is life with melanoma. I tend to go to the beach for walks now versus the day. Cloudy days are my favorite. I check the UV index often, not out of paranoia but I consider it knowledge for my day. My love of boating is painfully not fulfilled any more. Spot checks and clinical trial fatigue are the norm.

finger to rightMelanoma, Normal-No-Morefinger to left

Does this sound extreme?  This is nothing compared to what I and others been through at Dana Farber Cancer Institute. This is my life, no complaints as I’m so very happy to be here! Whether patient like Kevin S. Anderson who believed his melanoma was one and done, or me learning to live differently with the hope of many more years, lessons about skin cancer are costly.

Life changing forever, melanoma is now part of me. While I am disease free (YES!), cancer brings a whole new mind set and melanoma a whole new lifestyle. Please consider what you can do to incorporate sun safety into your life.  Sensible measures may save you from life altering melanoma.

Read about melanoma. Educate yourself about melanoma. Be afraid, be sun shy. Stay alive! And thanks for signing up to follow my blog! I love to hear from you in the comments!

We can-cer vive!

Janis

#melanomatheskin   #cancer  #sunsmart  #sunsavvy365 #melanoma

Vote Early, Vote Often

***I’ve decided to post this again. Infusion last week, fatigue this week. Please vote, whatever you believe in! It’s how democracy works! Elections matter!

Feeling the Blow

I’m already breaking a political promise; I vowed this blog wouldn’t get into my political beliefs. So like all those running for office, not all promises are kept! You see sometimes life changes our platforms, whether we approve or not! I’ve voted and hope you participate on November 6th if not before. I’d love to hear your thoughts on politics, voting, or cancer. Comments are encouraged and discussion most welcome!

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After years of great health, I was dealt the first melanoma blow in 2015.  Determined not to have it be a knock out, I came back fighting. Until things didn’t feel right to me again, a facial excision left an area tender; my old boxing injury I joked. Except  something wasn’t right and I needed to believe in myself, to fight.

The Main Event (Round Two)

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Doctors didn’t believe me and so time went by; we cancer patients have a love-hate relationship with time. (We want more of it, though hate it when it means waiting on test results). Finally, I requested a biopsy; metastatic melanoma again and recommendations that we now go to the medical epi-center of Boston, Dana Farber Cancer Institute being our choice. I was in the big ring now.

I’ve mentioned my cancer before and will again, but not in the context of politics. I could be the poster child for pre-existing conditions. My skin, like yours, holds onto its history; its damage, whether it be sun or other sources is pre-existing. My metastatic melanoma could have happened as a child, or just a few years ago. It’s been two hard punches to the left side of my face.

So, my pre-existing condition just may have been lurking for years, waiting for the optimum conditions to let cancer, medical diagnosis, doctors and dermatologists, become the new normal in my life. I’ve always listened to my physical being, but we cancer patients feel we’re caught cold when going another round. Pre-existing, why yes I am!

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Saved By The Bell

Think pre-existing conditions aren’t relevant to you? Yes, I gratefully thought that previous to 2015. I agree that we want to cultivate hope and inspiration, not worry about the what-ifs that can drag us down with a one-two punch.  And any given day, you may be in a bout for your life, for your medical treatment.

Insurance discussion is a constant in our home, at our table now. I’m the lucky one because we have insurance to cover my clinical trial drug for now. At some point, we are going to make a decision on insurance expenses and/or treatment. Decisions are regularly made by people who can’t afford insurance premiums. Long before my health issues, I was deeply affected by those I love making tough life choices based on medical expense.

We Are The Champions

So, yeah! Vote early, vote often, but whatever you do vote! We’ve all fallen to the canvas a few times, all taken a few sucker punches. Life is like that. However you vote, at least you’re making a decision to participate, to get up and fight for what you believe in. An outcome, the decision, will be heard; if you vote, you’ve put it out there, given it your best shot!

Contenders, all of us, with our concerns and passions. Believe in yourself, have courage, and stay in the ring. There has never been a more important time to fill out a ballot. Voting is super easy and vitally important. I’ve taken to voting absentee; bringing the ballot home to research the questions and candidates more closely. Vote, vote, vote for what matters to you on November 6th (and wear your sunscreen;).

Next time, I promise not to talk politics. “And if you believe that, I’ve got a bridge…”!

#melanomatheskin #vote #melanoma #cancer #sunsavvy365 #Tuesdaythoughts #election

We can-cer vive!

Janis

Daylight Savings Ends Sunday; 23 Free Things To Do After Dark

Melanoma patients have to be sun shy. Does it mean I stay inside and watch the world go by? Hell, no! Modification is key to living the best life you can. Sun-safe habits are important and now integrated into my day. But have you considered night time in your plan? In the summer, that may be crucial to avoiding high noon sun time; as we fall back to end daylight savings for this year, we have a lot of darkness to consider!

Things That Go Bump In The Night

Okay so evening is not my strong suit. Immunotherapy drags me through my days and by the evening, I am weary from this new lifestyle. That being said, consider taking a rest during the day so you might be able to do a few of these things at night:

  1. Walking is great and going for an evening stroll means you don’t have to worry about UV ratings. Wear what works depending on the season.
  2. Nighttime gives us a completely different perspective. Enhance your other senses by using them! Allow your visual overload to relax, let the sounds of the night be your focus. Or your sense of smell, touch, or taste…have your bedtime snack outside by the fire!
  3. Dress for the weather, bugs, snow, or whatever!

The Skies Have It

Consider your season and what you can do to get out after dark. Weather needs to be considered.

Spring might mean:

4.  Walking in the rain.

5.  Night crawler-ing!

6. Considering the changes that come with this season but from the darkness.

7. Meditating outside.

8. Trying some yoga poses.

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 Summer has great potential with:

9. Observing the end of day flights and songs of birds.

10. Watching lightning bugs (early July here in the Northeast).

11. Moonlight bike rides or canoe paddling, often offered via community calendars.

12. Slip, slop, slap and wrap as needed and go on that sunset cruise.

13. Step out for an ice cream, theater, or movie.

14. This meteor show, the Perseid Shower is a spectacular summer show. Seeing 5 meteors before 9:30 pm reminded me what a sight this is to enjoy.

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Fall Brings Options Including:

15. Tell stories and have a bonfire. Read a passage from a favorite book.

16. Avoid light pollution when possible and actively observe the constellations changing as some such as Orion come marching back for winter viewing.

17. Space. com is a great resource for sky information and be sure to read the dates for the Geminid Meteor Shower, the brightest of the year in mid December.

18. When the moon is close to full or full, it creates a lot of light, so star viewing is not as crisp. Those naturally bright nights are a great time to find your way around outside and get adventuring.

19. Got leaves?! Make a pile away from tree, plop into your pile, and just look up. On a clear, chilly night the smells of Autumn along with night sky clarity will have you awestruck with the magnitude of beauty.

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And Then, There’s Winter:

Isn’t it easy to hunker down and avoid the brrrrrr of it all? Push yourself each day to find pleasure in the night. Winter may be the most challenging; I know it is for me. The lack of light with daylight savings is abysmal. My best remedy is to get out, so gear up and do it. The winter nights are long and breaking up the doldrums might include:

20. Shoveling-Ha, you laugh. It’s a never ending project in the winter and why not chip away at it for a bit? Aches and pains are a reality with my clinical trial but I figure moving beats the alternative.

21. Reflection from the moon is intense during the coldest months. Dress for the weather, let the cold steal your breath away, and go for a walk, snowshoe, or cross country ski. It needn’t be long but that fresh air will give you inspiration!

22. Clear nights are perfect for stargazing. It’s cold out there so bundle up, grab your lounger lawn chair (it saves on neck discomfort), or lay down in a snowbank. Look up, look up!

22. Bright nights might mean building a snowman or decorating snowbanks with food coloring and water in a squirt bottle. Silly is okay because laughing is good for the soul and healing.

23. On a snowy night, step out and listen to the snow on your jacket, feel the wind, and stick your tongue out. Sometimes, it’s good to just know you are alive!

Finding Light In The Darkness

Modification is key to enjoying life when dealing with melanoma and other cancers. There are good days and bad days. There is pain, sadness, and loss. What do you do to find pleasure, even if you can’t be in the sun? What would you do if you could play after dark? Please do comment and add your suggestions!

Gift yourself moments like these; hope is found here. Build your new life knowing you have disease and create balance with the best moments. Cancer patients have challenges and those with melanoma have sun safety concerns.

After-dark adventures needn’t be long or complicated. Plan ahead, know the weather, and smile. Learn when the crickets chirp, when the moon phases are this month, and when that outdoor concert will be held.  Courage comes in small doses and moonshine provides inspiration!

We can-cer vive!

Janis

#melanomatheskin #cancer #melanoma #slipslopslapandwrap #naturalskinrocks #moonshine #daylightsavings  #timechange #Fridayfeelings

 

 

 

Harvesting the Three Sisters Garden

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Planting the Seed

This time of year we reap what we sow, right? Well, not always. Choosing to focus on gardens this year, I ambitiously planted seeds, a lot of seeds actually. Mostly started indoors, seedlings were everywhere. My husband found humor with corn growing in the living room, along with a plethora of other seedlings. Hey, that’s where the sun is most prevalent in our home! While I mask from the sun because of melanoma, life needs sun.

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The starting of garden ideas last January while poring over catalogs, morphed into purchasing Fedco seeds, and notes on what to plant when, which reminds me that I have yet to record the endgame of the garden. YIKES! This gardening thing is involved. Coming full-cycle, it’s time to consider successes, failures, and modifications.

Gardening is my thing, my husband the willing lifter and mover of that which this weak cancer body hasn’t the ommph to move. He easily accepts my need for help, though his favorite part of gardening is watching it grow! Greenery, life, and plentiful harvests remind both of us how beautiful life is, how simple things bring hope, inspiration, and balance; a meditation of sorts!

Nurturing the Sisters

One area of the garden was dedicated to the Three Sisters Garden, consisting of butternut squash, corn, and beans. The belief is that each of these plants sustain the others with needed nutrients. Additionally, the pole beans could grow up the corn stalks, the rambling squash could provide needed shade on scorching summer days. My sisters’ cancer deaths was the emotional piece driving me to create a nature garden honoring us!

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As one of three sisters (along with a wonderful brother), this was the year to try it. Everything  sounded so very easy. NOT! I had metza metz results and LOVE the concept of this type of garden. Throw in treatment, fatigue, weather, and suddenly, I have more than I realized to work on. What a great way to leave medical concerns behind. Somehow, win or lose, my soul was harvesting some sister love! The nuture was on, the experiment reminding me of my clinical trial. You win some, you lose some!

Harvest Moon

Corn was started in the house and did okay. I actually had it knee-high by the 4th of July. I grew bush green beans and Scarlett Runners to climb the corn stalks. The only trouble was the corn stopped growing! So we had tiny, inedible corn on short stalks that tipped over with the weight of the lofty Scarlett Runners! Winter squash did well though I still have many baby squash, too late to catch up to the larger, edible specimens.

Pondering the Three Sisters Garden, I know I watered faithfully, carrying buckets of water to the garden from the cistern. What I didn’t do was add much manure over the summer. The plants were close together and it seemed impossible to work anything into the soil. Wanna know what really worked with this garden? The idea of this:  the simple concept of creating something to remind me of the nurturing and love that will always carry on with The Three Sisters. What are you doing to satisfy your soul? I’d love to hear from you!

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Will I do this next year? That remains to be seen; perhaps a smaller garden ensues for 2019. But then, we did expand one area….and I’d love to see improved bounty… and the seed catalogs are coming out soon…

#melanomatheskinwerein #cancer  #melanoma  #threesistersgarden #garden #fedco #naturalskinrocks #sunsavvy365

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.

bird crane balearica regulorum royalty free

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