April Fools

jester

Just a quick jog here and hope it make some sun sense to you! Many of us are sun worshippers and hooray, here comes the sun again! We love the tan, we love the warmth, the beach or boat or outdoor adventure- our happy place. Plants grow and it’s proven that light makes us happy. All good, right?

Yes, it is, even for metastatic melanoma patients like myself. I’d like to help you avoid the medical scene that is now incorporated into our lives. Yes, we absolutely live our lives with hope, courage, and the inspiration that each breaking dawn brings. How happy I am to be here!

Inside Joke

Mistakes were made no doubt, though I also will give those of us that are older sun cancer patients the excuse that we didn’t know better. I also know many people don’t realize that skin cancer can be deadly. Yes, it’s not always as simple as removing a basal cell. I feel a bit foolish in hindsight to think of how little I knew…until I had to learn a lot in order to live. Don’t choose to ignore today’s knowledge.

Sun damage holds its history in the folds of your skin; those searing burns  where your nose was always peeling, it hurt to put on a bra, or you had blisters from a trip to warmer climes and intense sun are all stored history. Remember the Coppertone logo with the white butt baby with tan skin in the very brown container? We all craved that tan and now we have that potential melanoma history, both of us.

april fool 2

For years, sunscreen was not even a viable option; sunscreen was non-existent for many of us. Over time, I did use it on my nose which had seen so much burning and used it on my kids moderately. As years went by, I wore hats, covered up after a certain amount of sun time, and I felt good about the protection. After all, we all looked better tan and healthy, right?

Did you use tanning beds to give you that healthy tan OR as I use to do, tan before a warm weather trip? My logic was that I would use tanning beds so I wouldn’t burn on the trip…a base tan so that I would be able to be out and soaking up the sun on our vacation adventures. I truly was careful with non-excessive tanning and believed it was the safest way to not burn when traveling about. It now sounds so UNreasonable and whatever your reason it’s time to reconsider because next time it could be a radiation table as part of  adjuvant treatment.

The Joke’s On You (Or Pay Attention To Medical Information)

Knowledge about all cancers is developing faster than we can imagine. Is there a cure-all? No, but today, in relation to melanoma, the medical cancer research is finding more options for surgery, radiation, infusion, and each step is one closer to cure. Melanoma patients have a chance to live longer where at one time it was a certain death sentence. Those of us with metastatic melanoma now walk a tight rope, finding balance in our lives and hope in our cancer treatment.

a fool

I consider all that I’ve learned about this disease to be necessary to my life and truth be told, I would not have paid attention because it wasn’t relevant to me. Now, it stares me in the face every time I look in the mirror, my freckle face, pale and cancer free (we hope). I also have facial scars, I no longer remember how many, 6 perhaps, that serve as a road map to the land of the living. Never ashamed of those lines, I simply consider them my road to healing.

Practical (Joking Aside)

Beyond the medical knowledge that keeps me alive, is the desire to create a new culture of sun safety. I’m not going to be hiding inside and here are some sensible things to do as the warmer days come along:

  1.  Stay away from tanning beds-super dangerous
  2. Wear sunscreen
  3. Wear SPF clothing or layers
  4. Bring and wear the sunglasses
  5. Create shade areas whether at the beach or at home-use them
  6. Limit your time in deep sun
  7. Check the UV ratings every day
  8. Use umbrellas and sun tents some, glare from water and sand add to your sun exposure
  9. Create a list of your sun gear and have it at the ready so when the next sun adventure happens you can be ready
  10. Adventure after dark
  11. Promote this sun culture with others, sign up, and share my blog;)
  12. Have #sunsmarts fun, be practical, andlaugh neon light signage turned on

No Joke

The sun is strong this time of year and stronger yet to come. For winter adventures, sun screen matters and so it does now, RIGHT NOW! Cloudy days, it matters. Think your dark skin means you won’t get melanoma, talk to me about the people of all colors in the melanoma waiting room at Dana Farber Melanoma Center.  Create habits, remind loved ones, and develop a culture of sun safety.

Every single one of us has the possibility of melanoma in our skin history,right this moment. We also have options to be #sunsmart365 right this moment. We need to change the culture of what beauty is, how to love and enjoy our sun time, and to spread the word on how we can avoid being #AprilFools .    #melanomatheskin   #naturalskinrocks #MondayMorning  #sunsmarts #melanoma

ducks
Happy April Fool’s Day! “Make Way for Ducklings” in their Spring bonnets! Remember to learn from your mistakes and carry the knowledge of today with you (while wearing a hat, of course! xo

We can-cer vive!

Janis

 

 

Happy Happy Day

hello spring handwritten paper

Yes, it’s been forever and no, you don’t need to worry. My focus continues to be on being healthy and finding balance as a cancer patient. Metastatic melanoma is just one of my many interests in life. If you feel a lag, know that I am just not writing, nothing less, nothing more! Or be in touch!

Spring is Here!

The first day of Spring! Hooray and the sun speaks of things to come; it may only be a whisper but those of us who disparage winter’s worth can feel the change-a comin’. Subtle and yet, as bold and brash as a billboard, Spring shows itself. I’ve noticed a few green shoots popping through, daffodils undoubtedly. I’ve scoured the scrub brush out back for the snowdrops, but think I’m over zealous. Not everyone jumps for the joy of a plant you forgot about or that you thought you lost!!!

Seeds are here, too! I planted a few things and look forward to doing more. Dahlia seeds are already popping up…of course, this is all indoor adventure to keep me smiling through the rain and snow that inevitably comes this time of year!

Happy Days

Today is also International Day of Happiness according to the United Nations. Nothing better than a day to declare happiness. Well, yeah, except why not try our best every day? Great to recognize that feeling of happiness with a special day; after all you and I have our own special day each year. How about making the effort to make every day one of happiness?

nature woman feet legs

If you are challenged by disease, relationship, finance..whatever it may be, do you feel better for all your sadness, self pity, and sorrow? The best serum is courage; courage to drop your sorrows and make room for love and hope. Easier said than done when you are wallowing in your misery, but happiness is really not hard to come by.

Open up to let it in, grab for the positive, and see how happiness curls into every corner of your life. I firmly believe that each of us has only so much room for sorrow and pain before it takes us down and conversely, I believe that positive feelings of love, doing for others, and having fun can grow and multiply infinitely. And is contagious…catch some!

Misery Loves Company

Of course, I want to bring reading in to this post. As a librarian, I’ve always loved children’s books. I read everything but with all the amazing children’s authors out there, I return to what is dearest to my heart. Happiness is around every corner, every page if you choose to find it.

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The 2017 Newbery winner was The Girl Who Drank the Moon by Kelly Barnhill. What an amazing novel with many accolades, and add my thoughts to the collection of positive reviews.  Recommended for children in grades 4-6, I would expand that target to any reader in 4th grade or older. This could be a particularly pertinent read for a 13th birthday or a coming of age event. Adults, read it!

Not a big fantasy reader, I couldn’t wait to pore over each chapter, most of which are reasonably short in length. With magic, a tiny dragon, missing babies, and a town drowning in sorrow, who wouldn’t want to keep reading to see which witch is witch? The real magic comes in Barnhill’s words; she will have your children clamoring for more with the richness of plot, descriptiveness of place, and the authenticity of characters.

two yellow plushtoy on brown bench

And no, I don’t want to give a spoiler but the sorrow that consumes the community in this book…well let’s just say some thrive on  that sorrow and self-pity, while others work hard to bring happiness in to their lives. Oh yes, this is a children’s book but if you read deeper, I know Barnhill shares a message we all can find if we so choose. #melanomatheskin #cancer #happyday #happyspring #wecancervive #melanoma #Wednesdaythoughts #review #choosehappiness

Happy Day! Happy Life!

We can-cer vive!

Janis

 

 

 

 

14 GroundHog Day Facts And Why You Need to Celebrate This Underground Movement

See the Light

shine light
Quoting an author I love, Paulo Coelho.

Those who know me, know my favorite day of the year is Ground Hog Day. Life is short so sometimes it’s a wonderful thing to be silly! For many years, I have advocated for this holiday which is severely underrated and under promoted. You might even say it’s an underground movement!

Ironically,  the days I am most interested in celebrating are sun related, kind of a strange one for the melanoma cancer patient, right? Winter solstice, Fourth of July, and yes, Ground Hog Day being tops on my list! So why do I love GH day? It’s a low maintenance holiday: no major gift giving, no seasonal decorations needed, and no pressure to get it all done! It’s our time to wish each other a Happy Ground Hog Day, to consider and talk about Spring (YAHOO, it is possibly happening again!!!!), and to see the light at the end of the proverbial tunnel (literally).

give light

I’ve taken to some subversive tactics over the years. My love of literacy has afforded me that annual opportunity to propagandize Ground Hog Day at my libraries, surely tainting those young minds and developing an unsuspecting following. Why, sometimes even elders understand this devotion; I  hear from a grandmother every year as we exchange Ground-Hoggedly Greetings!

Storytimes have included books such as Footprints and Shadows Shadow,   and  a reading of Stevenson’s poem My Shadow. One of my favorites is Moonbear’s Shadow and the list goes on and on. Take into consideration that the shadows we see are created by seeing the light! Projects might include: going out to measure your shadow and discussing the varying lengths at varying times, learning some basic shadow theater hand puppets, or weather activities such as painting the weather for that day or studies in black, gray, and white!

adversity

In Fact

  1. Ground Hog Day is always celebrated on February 2nd
  2. It’s half way between the official start of Winter and the official start of Spring
  3. Groundhogs are also variously referred to as woodchucks, whistle-pigs, or land-beavers.
  4. The name whistle-pig comes from the fact that, when alarmed, a groundhog will emit a high-pitched whistle as a warning to the rest of his or her colony
  5. The name woodchuck has nothing to do with wood. Or chucking. It is derived from the Algonquian name for the critters, wuchak
  6. One of the largest rodents, part of the squirrel family
  7. Lives underground with pathways and burrows, having a separate winter den
  8. Hibernates generally from October to March, depending on location
  9. Hibernation can mean their body temperature drops to about 41 degrees (normal 98.6 degrees like us)
  10. Breeding season is March-May with a 30-32 day gestation period
  11. Litter of 2- 6 young (called pups or kits) though can have more
  12. Kits stay with their Mama about two to three months after being born in mid-April to May
  13. Youngsters disperse and leave mom’s burrow by Fall. However, about  thirty five percent of females stick around until after their first birthdays, right before mom’s new litter arrives
  14. Groundhogs are super for study of hepatitis B-induced liver cancer. In fact, if infected with Woodchuck Hepatitis B virus, the animal always goes on to develop liver cancer, making them useful for the study of liver cancer and of hepatitis B.

Punxsutawney Phil Lives

So here’s my truth, rodentially speaking, I really don’t like rodents at all. NOT AT ALL! And what’s more, whatever Phil proclaims weather-wise, it NEVER has relevance in the Northeast. We are shoveling winter off our doorstep or burrowing for the next 6 weeks and more guaranteed PERIOD! We will be demonstrating squirrelly behaviors and gnawing for warmer days!

Some think I’m absolutely foolish, others have embraced my desire for some mid-winter FUN! I’ve had staff make me ground hog shaped brownies, been given donuts with a ground hog poking out the hole, and a super-tacky Ground Hog necklace. I’ve gifted others “a just because” package to brighten their mid-winter blues (though Ground Hog Day is far more than “just because” in my mind!), and found awesome Valentine’s cards with those furry not-so-little rodents on them (multi-tasking the holidays of February!).

smiles

Remember this is a no stress holiday! Wish those around you a Happy Ground Hog Day. Rejoice in the knowing that Spring will happen (it will, right?). Grab your seed catalogs or a good book, put on the tea water, and celebrate the day, celebrate you! Did you notice how late the sun set last night as the thermometer dipped to the negatives with hurricane force winds? It’s really very positive, this Ground Hog Day inspiration, the light I mean, not the shadow! #melanomatheskin  #GroundHogDay #FridayThoughts #WorldReadAloudDay #bookreview #melanoma #skincancer #followthelight #smile

Please sign up for my blog, let me know how you will celebrate in the comments,  and thanks for spreading the Good word! Happy Ground Hog Day to you and yours!

We can-cervive!

Janis

“Becoming”, by Michelle Obama…And Our Becoming

hands

Let It Be

Whoa! Amazing how time gets away from us. I’ve known I wanted to post in my blog, that I needed time to just let it be, and that other priorities had precedence. Not making excuses as it’s just the way it is! I find that I am always doing something so what the heck? Time can be such a game player!

Time seems to run from us, doesn’t it? And here I am, working on my melanoma and keeping stress to a minimum, part of a personal plan to keep life in balance while on a clinical trial drug called Yervoy. Creating space to improve my medical status has left me more challenged with time than when I raised my children, worked, and continued my education…all at the same time!

foot

Becoming

Becoming takes on different meanings for all of us but truly brings us all to a place for vision, action, reflection, and hopefully life growth through the process. It reminds me a bit of literacy grants and projects where ideas are born, nurtured and loved, to one day take flight while we evaluate the success (and failures) of such work. I’ve applied this a bit to life as it is now….becoming.

So, have you read Becoming by Michelle Obama? I am a stickler with reviews because, well, some books just don’t do it for me! However, Becoming is a book I love. In a time when life seems hard (not written to be a bummer at all, but really there are some awful things happening around the globe), this book gave me hope and was a very enjoyable read!

becoming

Divided into three parts, the reader learns first about Michelle growing up, then as a forward thinking career woman who is a wife and mother, and lastly, as the First Lady who puts all she’s got into doing everything to the best of her ability.  She is so real and so honest in her depiction that at times I cringed to think about obstacles she had to overcome and the hard work she has put in to her life.

Neither stuck in the politics or the travesties in life, this book speaks about all of us, about our dreams, about our hard work. Hope does spring eternal and this is the perfect time to be reminded of this.

Love, education, and determination are three of the dominant themes that I found throughout Becoming. Fascination with this book really set in when I realized that these are the same things are central to my life, to most of our lives. I’ve read several books lately (when I should have been blogging!), but this book has stayed with me because of the hope that gets us through and beyond challenges of life.

Be-autiful

Cancer is there. Even if cured, we cancer patients will always wonder, ever so slightly about that one rogue cell. For many of us, we wonder if treatment is harder than the disease!  Reading positive books might just be another variation of meditation that leads to inspiration. What books have inspired you lately? Let me know in the comments! I’m always looking for more great reads!

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Life is about becoming, the process does not end. Above is a worn piece of paper, a quote that long ago helped me through a tough time. It’s place was on the fridge and ironically, I stumbled upon it the other day buried in a bureau drawer, a beautiful reminder of earlier lessons learned. I’m not religious but it never hurts to recognize how far we’ve come. Becoming: it’s for me, it’s for you, it’s for all of us. We’re doing just fine! #becoming #bookreview #melanomatheskin #cancer #melanoma #naturalskinrocks #skincancer #wecancervive

We can-cervive!

Janis

 

Melanoma and Self-Deceit Among Us

beach

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.

bliss

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.

KONICA MINOLTA DIGITAL CAMERA
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

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.

bonfire burnt campfire fire

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.

macro photography of snowflake

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

 

 

 

What’s In Your…Backpack?

Just a quick note as I prepare for my next infusion…that alone is an assumption! There will be blood tests, spot checking, scans, and evaluations. It’s a time of mixed emotions; I always hope that I pass with flying colors and get the immunotherapy that may be saving my life, I also feel the anxiety of what might not be okay.

I’d really love comments from others on what you do when faced with challenges ahead. Do you take that nervous energy and just go out and have fun? Or do you take on a project to keep your mind and body busy, expending dark energy? Do you get lost in your worry?

And That’s Why It’s Called a Nervous “WRECK”!

A few days out from the process and it’s a rainy day. The beach walk I thought I’d squish in this morning was given a literal “rain check”. Travel bags are now packed, some small projects completed, and next up will be the cats! Wow, to the World Series but it also means no more Red Sox to keep me inspired. I prefer to have bills paid and administrative duties completed. Clean sheets are always a good thing. Diversion, good! Nervous? Hell, yes!DSC01632

All of this seems silly but in having things in order for now, I expend some tension. Doing that leaves more room for things I will need while at Dana Farber Cancer Institute; it’s my emotional backpack. We all have them and when cancer treatment is imminent,  it’s important to NOT fill my emotional backpack with negativity, nervousness, and worry.

Get Ready (by The Temptations)

Here’s a brief list of what I will put in my emotional backpack:

  • belief in a tomorrow
  • courage
  • hope
  • inspiration
  • integrity
  • love

Hokey as hell but in putting in positive feelings, there is less room for the emotions that drag one down. Sure, they are there (those scary thoughts), and yes, when I walk into the medical facility there is a pit in my stomach. Metastatic melanoma, stage III, is one deadly disease. I’m well versed in what I’m up against.

Choosing to bring all those positive emotions and desires with me gives me strength, strength to get through a long day.  I put a positive spin on something I never thought would be a part of my life; I believe that I’m part of something bigger and that satisfies my soul. Cancer research is imperative and clinical trials matter.

Balancing Act

Balance will be skewed on my medical day, no doubt. There is no way to discount the possibility of a questionable scan, bloodwork values, or other concerns. This is how those cancer cells are found, this is the chance we cancer patients have. Packing the positives in my emotional bag become the bulwark for whatever this trip brings.

Exhausting, the Yervoy infusion is only one part of the depleting feeling of cancer treatment. Finding your emotional infusion may take time, but look high and low; positive emotion may just be the reserve you need to pack. Take the time to discover what it is for you and how to pack it up for when you need it!

selective focus photography of balance rock
Balance is a building process!

We all need to have emotional reserves for challenges in life. I’d love to hear what works for you. Please share in the comments as we all will benefit from learning what to pack in life’s emotional bag! What works for you?

We can-cervive!

Janis

#melanomatheskin #wecancervive #cancer #worldserieschamps #cancer #melanoma #TuesdayThoughts