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

 

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

 

 

 

Scary Masks

Radiation mask 2017
Radiation mask 2017

And Other Melanoma Frights

This blog idea has been a long time coming. There are hard parts with cancer treatment; there are parts that are nearly as tough as our mind makes them! It’s that balance idea and also, I’ve learned to not suppose, guess, or imagine how things will be.

This is written not to frighten, but to inform. It’s a brief description of my radiation experience in 2017. It’s taken some time to process this part of the healing. I’ve kept my mask in the basement, stumbling on it every now and then reminds me of how challenging this was and hopefully, how life saving it is. The pictures were taken the other day, just to show what the mask looks like. If you are considering radiation, remember each experience is unique. Ask me a question if you’d like!

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

Learning takes on many forms, and this treatment taught me that I don’t always know how I will react, that I am human, and that I am braver than I think. One piece of my metastatic melanoma treatment was radiation. After multiple excisions and healing, the time came for radiation. Conferring with radiation oncologists at Dana Farber, a local team was most sensible as treatment is Monday through Friday.

Mask Making

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As a Mom and librarian, I’ve always enjoyed projects with children and teens. Mask making was a favorite, whether paper mache or natural construction. I’d never really thought I’d have my own face sculpted, much less my own personal mask!

This took place at yet another location; the measurements, the warm towels, the casting of my mask. Precision and professional knowledge are key; the medical staff of two worked well together, and in no time at all the drape of some mesh, fishnet substance formed a likeness of me.

Well, not really. My mask fit me but there was little likeness to the flesh and bones person that was to wear it. The real me had another lesson ahead!

Lock Down

Mentioned earlier, there are parts of treatment that we cancer patients don’t quite anticipate. Questions are asked, caregivers take notes and listen hard, but no oncologist, medical person, counselors, or others are able to understand the human reaction, the emotional element. Humans are unique individuals!

assorted color metal keys

Claustrophobic tendencies are not me; I endure scans, MRIs, small closets, and tiny spaces with no concerns. On the first day with the local radiation team, more measurements were noted, the irradiation location exposed on the mask, and equations exchanged. No problem.

Turn of the Screw (by Henry James)

And then, while I lay on the platform they screwed my head to the table. I knew this was coming, I knew the process. Momentary, solitary panic only known to me ensued. Tense body parts, mind wondering how I could ever escape if need be, and a foreboding feeling in every inch of my body.

Fear was trying to drown me. to hold me down, so I pushed back with courage, the desire to heal, and hope beyond this damn radiation. The staff was professional, moving through their routines with more measurements, a warm blanket, and conversation to access my level of comfort.  What great acting I did! This was the greatest mask of a lifetime, the emotional one!

Radiation treatments to my left cheek continued for weeks, 5 times each week. A friend had mentioned that he had found waiting room comaraderie in his Boston radiation treatment; my more rural setting meant less of that, though two of us passed each other daily, bestowing sincere well wishes on each other, smiles robust with empathy.

That Healthy Glow

Ironically, my face, the same one that has had multiple melanoma excisions most likely do to sun damage, was brilliantly red after just a few treatments. This “hot spot” focused most of the controlled dose very specifically. My mask provided boundaries for the radiation staff, a way to zero in.

Risks are many when considering radiation. For me, the lack of alternatives meant this was the next step in my path to being disease free. Side effects vary depending on the course of radiation; each situation requires different radiation calculations.

Treatment left me exhausted as it has a cumulative effect. My face was, and still is, super sensitive to the sun. I also have dental trays made with my dentist. Radiation damages salivary glands which helps protect teeth so daily use of the trays with fluoride may protect my teeth. Hearing is questionable as something has changed in that regard.

Radiant, Just Like Wilbur!

Would I do it again? Absolutely! I’ve always been one to shy away from various drug solutions and to work through to a healthier me. Cancer is different and fights back with vengeance, learning new ways to work around medical treatment. This time I’ve chosen to try all options that make sense for my metastatic melanoma because I need to kick this thing called cancer.

radiant
RADIANT!

Radiation treatment was trickier for me than any other part of this process and I surprised myself with the emotional challenge of being so helpless (and literally stuck!) while the immobility was essential to safe treatment. Each day, each moment I knew it to be the right decision. I learned that each of us reacts differently and that I’m stronger than I think!

Inspiration came when treatment was over, my body whooped, my face fried, and my grandson gave me a hug. Sometimes that is why we go through the scary stuff.  It’s really ALL about the hug!

#melanomatheskin #cancer #melanoma #FlashbackFriday #Halloween #maskmaking #scarystuff

We can-cer vive!

Janis

 

Nobel Prize for Immunotherapy Pioneers; The Long and Winding Road

black car on road near mountains

The Road to a Cure

This past Monday, James P. Allison, PhD and Tasuku Honjo won the 2018 Nobel Prize in Physiology or Medicine for their work in cancer immunotherapy. For those of us cancer patients who live because of immunotherapy, this cancer research is critical and the award brings some sort of personal satisfaction.

By stimulating the inherent ability of our immune system to attack tumor cells this year’s Nobel Laureates have established an entirely new principle for cancer treatment.  Metastatic melanoma is the skin cancer that I have. I participate in a clinical trial and was randomized to receive Yervoy (ipilimumab) which works with T-cells to improve the body’s ability to fight cancers such as melanoma.

Accelerators and Brakes

red stop sign

James P. Allison studied a known protein that functions as a brake on the immune system. He realized the potential of releasing the brake and thereby unleashing our immune cells to attack tumors. He then developed this concept into a brand new approach for treating patients.

In parallel, Tasuku Honjo discovered a protein on immune cells and, after careful exploration of its function, eventually revealed that it also operates as a brake, but with a different mechanism of action. Therapies based on his discovery proved to be strikingly effective in the fight against cancer.

Allison and Honjo showed how different strategies for inhibiting the brakes on the immune system can be used in the treatment of cancer. Different strategies, but both accelerating toward a healthy future for cancer healing. I may be just a small mile marker with immunotherapy, but I offer GINORMOUS thanks to Allison, Honjo, and others who have advanced the cause, set us on a path. Here is the scientific background of their work.

Hitching a Ridearm asphalt blur close up

So how does any of this relate to me? Us? I’m thrilled because in doing my clinical trial, my primary goal has been to improve the study of cancer. I’m not sure how it works or not for me, but perhaps in working with the staff at Dana Farber Cancer Institute I’m helping someone else down the road as the cancer research continues to move forward.

 

Yeah, I want to rid myself of cancer but I passionately want to participate in scientific research. Medical “stuff” is not my thing but through this trial, my T-cells are being driven, hitchin’ a ride toward a cure. Maybe not my cure, maybe not yours, but somehow I feel a bit “noble” for being on the right road toward a cure!

monopoly

#melanomatheskin #cancer #nobelprize #melanoma #wecan-cervive  #nakedskinrocks #yippiforipi #Thursdaythoughts

We can-cervive!

Janis

 

“Educated” by Tara Westover and My Cancer Education

I’m here now!

I am one of the lucky ones, metastatic melanoma and all. Tomorrow is just that, beyond our reach.  The past is something to learn from and move forward.  Being present, a gift for us all, is part of my cancer education. I’m learning to find peace in this moment.

My yoga class delved into one of the seven chakras this week, the Muladhara chakra or the root chakra. We walked, feeling the earth beneath our feet. We talked, sharing the sense of strength found in our foundation. We sat, finding our sitting spot and bringing motion to that area. We meditated, feeling the support and depth that we call earth. Balance and stability ensued.

Yoga centers me, and as a fairly new student, each pose requires my attention. This week’s class reminded me of a quality that I cherish in myself, a quality of being a realist. In feeling lucky to be here, I also reminded myself to be here now. It’s so easy to get caught in what medical treatment is next, what my health insurance will look like in the future, the fact that some nights sleep is hard to come by, even though fatigue rides my back daily, like the backpack I can’t seem to lose!

Instruction is sensitive to different needs of this restorative/gentle yoga class. Some challenges are physically apparent in this welcoming group, some not obvious. Being the youngest in this group, my clinical trial aches and pains, and other side effects are not evident. Our individual spiritual and emotional challenges find bearing,  find roots as class continues.

I Am Therefore I Exist, I Exist Therefore I Am

This all reminds me that being grounded reaches deeply beyond having our feet on the ground; it reaches into our very being to remind us to be here now, to leave the past and the future to other place markers in our personal timeline. Appreciate what is good, what is right, what is now.

person rolling green gym mat

Being safe in that moment was mentioned in yoga class. Simple enough, right? Not necessarily and touching on that reminded me of those who live in unsafe circumstance. Having just read Educated by Kara Westover,  the book challenged me with the abuse she endured, that being safe is unattainable for some. Disease and suffering comes from many paths.

Education of Little Me

Educated, a difficult book for me, depicts family dysfunction, abuse, and a rise above the squalor. Intended to be inspirational, each reading left a bad taste in my mouth, a sorrow for those who know no safe moment, who carry the burdens of the past. Reading through to the end of this memoir, I felt pride in Tara’s accomplishments BUT a deep sadness for struggles within that will be with her forever, that are with many forever.

What resonates between reading Educated and pushing myself to go to yoga is the feeling. Cancer and all that comes with it is arduous, something that is now part of my life forever. I thought I wanted to read this book and in the process, I learned that healing for me isn’t learning of someone else’s pain and misfortune. Yes, it is a story of rising from the ashes and I admire Tara. The feeling of her story remained one of sadness.

Healing is about finding hope and courage; for me it’s about being here now. I came home from yoga, captured a moment with the wild asters, bees, and monarchs in the garden, feeling the foundation of who I’ve become, in spite of disease. Feeling positive joy in that moment providing me with strength to get to the next moment, and the next moment, and the next….

#melanomatheskin  #cancer #melanoma #naturalskinrocks #Thursdaythoughts #thisonesforlindacherylsusann

We can-cer vive!

Janis