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.

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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?

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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

 

6 Suggestions for Giving Tuesday

AWOL

I know, I’ve been absent for a while…longer than I want to consider

colorful costume monster mask
Melting down around 5 pm every day!

It’s been a tough run with Yervoy for the clinical trial I’m on. For whatever reason, my energy levels, which are not good, are less than non-existent. I’m putting up a great front though feel like the melting witch on the inside!

Immunotherapy would make me believe I have a super immune system, charging those T-cells to the infinite degree. I guess not because I’m coming down with a cold. Totally was hoping I was invincible, but hey, it’s good to know I’m still human even with all these chemicals racing to catch and kill cancer cells.

Upcycling Life

Enough of that. I’ve always been big on giving back, paying forward, or upcycling life. There, does that cover all the current lingo?!!!! Caring about others needs to be part of our lives every day. Kindness rules and with the crazy, scary world we live in, I truly believe that our goodness and love can win out. So do it every day, every way.

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Doing good for others brings joy to our lives.

Today is Giving Tuesday. Being the draggy person I am, I’m thinking about my donation giving for the holidays but might not get to it today. That’s okay. If you are able, do it! I actually give to two groups for our Moms; you see our Moms don’t need a lot and are incredibly hard to shop for anyway. THE Moms love donations that we make to either Camp Sunshine or the Children’s Literacy Foundation. Vicariously, they too, are paying it forward.

I’ve created a small list of organizations that are near and dear to me. I have connections with each of them so feel free to ask me about them if you want to hear from a person on what they do. I love your comments! I share this with you as I’m not working much these days and hope that you might just find one that works for you. My favs include:

  1. Camp Sunshine -an amazing retreat for families with terminally ill children offering smiles and love
  2. Children’s Literacy Foundation -an amazing literacy foundation that encourages the love of reading with children
  3. Dana Farber Cancer Institute -a world class medical facility that also cares for children with cancer
  4. Hope Lodge, Burlington, VT -one of many Hope Lodge housing options around the U.S. for cancer patients
  5. Hospitality Homes -a Boston-based program that offers housing to those requiring medical treatment
  6. Your local library -what a great way to keep on giving when you donate to your library and ask that it be used for books…it keeps on giving!

And please do ask about my connection with each of these worthy organizations!

Giving Life, An Attitude of Gratitude

If you are thinking about donating money or time somewhere, hooray to you! Money may seem a cold, callous gift but it’s not when you consider how costly medical situations can be. Cancer patients hold their heads high, but whoa, the financial strain is tough! Let me know of your favorite places to volunteer or donate money. Positive begets positive in this life! Inspiration comes in giving!

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We all do what we can. If your Giving Tuesday is as simple as opening a door, calling a friend, or smiling as you walk past a stranger, it’s all important to making this world a better place. And then make it a Giving Week which leads to a Giving Month which leads to a Giving Life. #melanoma #cancer #GivingTuesday #melanomatheskin #GivingLife #Wecancervive #volunteer #upcycling #LoveTrumpsHate

We can-cer vive!

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.

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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!

boxer

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)

ring 2

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!

boxing 1

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