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

 

 

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!

DSC01202
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.

slip.jpg

 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

 

 

 

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).

scoops

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

Feel the Heat

Riding the Wave

Wow! The Northeast has soared to places no New Englander has ever been…or at least in my neck of the woods. With mercury hitting 93 degrees in the shade on July 4th, it gave even the most avid sun lover reason to find relief! Finding parade shade in the morning was excellent, followed by some time hiding out in the almost-cool cellar, and then, choosing to be inside at the neighbor’s barbecue versus on the hot deck overlooking the ocean.

heatwave 1.jpg

Those in the south would think a temp of 93 is nothing, though we in the North tend to melt with anything about 75 degrees! How do you deal with heatwaves? I now head into warmer days with a plan. I pay attention to the UV Index most days because with melanoma, it’s just what you do.  There’s also a Heat Index chart and other heat safety information at http://www.weather.gov, all of which is very relevant right now.

Heat Seeking Miss

I use to love heat, the more the better as long as I had plenty of water…to drink and to jump into for relief! Beach days for sure, I’d find it tough to have work or other commitments on serious heat days.  Water adventures, be it lake or ocean, brought me to my mecca and the hotter the better. I always loved the approach of summer solstice and the sun days of summer.

 

I chose to never complain on scorchers because I wasn’t crazy about the deep freeze of winter; if I am going to complain, it will be about that snow crunching, nostril-hair freezing, #nodesiretobeoutside winter weather. I’m still not going to complain about the heat but phew, I am glad that today’s storms will clear the air.

Intense Sense

So, what’s changed so that I can’t take the heat? For me, a lot, though I hadn’t really noticed the trend. I’m a bit older so my body seems to stress a bit with temperature extremes. The clinical trial that I am on through Dana Farber Cancer Institute leaves me fatigued; I wake up fatigued, I go to bed fatigued. Lastly, I spend less time in the hot sun so it feels brighter, hotter, and takes very little to wear me down!

heatwave watering

Throw heat and humidity together, and for any cancer patient, elderly person, or others with no reserve, it means no way to re-charge. I’ll always love summer and the gorgeous weather that allows me to be out and about-living and breathing. Mindfulness is important when planning for fun in the sun; it makes summer celebrations wonderful when you keep options open for all!

Thanks for signing up for my blog and remember that sun safety! #melanoma #melanomatheskin #heatwave #sunsmarts #skincancer

We can-cer vive!

Janis

Red, White, and You

Red, White, and You!

The 4 B’s of Independence Day

Happy 4th of July! Celebrate your independence in breaking from the stereotype that a dark tan is healthy. Independence Day in the United States is a time for boating, barbecues, and beaches. Oh, yeah…it’s also a time for some of the best burns, sunburns that is.

Laughingly, in the past, I couldn’t understand why people went to the beach or barbecue if they wore all those clothes or hid under an umbrella. My sister and I called beach umbrellas “the impalers”, because of their potential to let loose and hurt someone (as well as those pale people sitting under them).

Open Minds, Open Umbrellas

abstract art background decoration

Now, I am one of those people. I even have a small umbrella that clips to my chair-perfect for those situations where there is no shade and I find myself caught in the sun. I keep it in the car. Sound extreme? Try having your head snapped down to a radiation table day after day to (hopefully) rid yourself of metastatic melanoma (to name just one treatment phase for melanoma cancer patients)…now that’s extreme. Suddenly, the idea of sun safety makes sense.

It’s great to be white, brown, or whatever your natural skin color is. In Victorian times, women wanted to whiten their skin as described on Women of the World’s site. The idea was that white skin indicated you were an aristocrat and not out working in the fields. While the extreme and unhealthy measures such as bathing in arsenic springs were prevalent, we know better now about whitening the skin. Today, we also know about reddening the skin and skin damage.

Burn Baby, Burn

Contemporary culture has given us more leisure. A less agrarian society (unfortunately), people enjoy free time. For generations, we’ve viewed darkening our skin as a sign of beauty. Media continues to depict tanned bodies as the beautiful, healthy look we crave. This needs to change because I’m just not craving my next immunotherapy. Are you?

#naturalskinrocks

#Naturalskinrocks, whatever your color-love you, love hue! Dana Farber Cancer Institute dedicates the 6th floor to melanoma and other skin cancers.  That’s where I go for the clinical trial that I participate in on a regular basis.  We’re all there together, terrified and seeking resolution, seeking life; every person with every skin color imaginable, seeking hope and answers.

Scan Versus Tan

Skin cancer and in particular, melanoma knows no color barrier, no discrimination here.  Think your genes are meant for sunbathing, and that you are not going to get cancer because your genetic makeup is to have dark skin? We all think we are safe until we find ourselves on the 6th floor of Dana Farber. Now I scan (MRI, CAT, etc) instead of tan. I’m not wanting to scare you, I’m wanting you to help change our culture away from the solar genuflection that kills. Avoid the red, avoid the burn.

Happy 4th of July

Celebrate Independence! Celebrate the red, white, and blue! Celebrate creating a culture of #sunsmarts.  #melanomatheskin #melanoma #skincancer #naturalskinrocks #avoidtheburn #Happyfourthofjuly

We Can-cer vive!

Janis

 

 

Sun Worship, Part II

Or why didn’t I get this as an adult?

An earlier blog speaks of some basic sun worship mistakes from my childhood.  The culture of the times was all about that healthy glow and rich tan skin. Really, there was nothing to get; sun bathing was the norm. Don’t let the guilt get the best of you.  Change begins today, never yesterday.

In my young adult years, say in my 20’s and 30’s, I continued to seek sun whenever possible.  My young family  enjoyed walking, hiking, playing sports,riding bikes, gardening, camping, boating, and best of all, the beach, whether lake or ocean. We were active, happy, and brown.

beauty and light
My new version of light!

Time Out

My son was, and is, feral. He seeks the wild places and “needs” to be outdoors. He was lucky enough to have that most of the time as a child and to create his life around that need as an adult. For our family, outdoor adventure made us feel alive and the best times were “out”.  Dear children-I hope that your past sun history never becomes what mine has.  If I only had known and I hope skin cancer never comes in to your life.

I love being a librarian but sometimes felt work got in the way on a gorgeous summer or winter day, when the natural world beckoned.  I chuckled while doing a mid-February story time about the beach and felt like I was in heaven when I plunked down into my beach chair to read with families.  Summer reading brought the enticement of story time and programs anywhere outside; the pool, the library garden, the bookmobile at the ball field, the free lunch program all lured me in for reading in the great outdoors!

My sisters, brother, and all of our families loved our family reunions.  Sun meant fun as we spent a whole weekend together in the warmer months, traipsing kids, babies, and parents to the beach, on boats, up gorges, to outdoor fairs, through campgrounds.  See the theme in our lives?  Best days were often the maximum time out, just out.

Scoodic Peninsula, Maine!

 

I Took A Walk in the Woods And Came Out Taller Than the Trees (Henry David Thoreau)

I don’t intend to give up on my life alfresco; I intend to be #sunsmart. Wow!  This is a complete lifestyle change.  We know the drill of sunscreen, SPF clothing, and avoiding peak sun times.  There is no way, I repeat NO WAY, I will give up on fresh air and that wonderful feeling it brings.

How do you deal with the sun?  What are you learning to modify your life without giving up your outdoor adventures? I’d love to hear from you because we all have much to learn, not so much to give up. It’s that idea of balance that comes into play so much with all of us, but particularly with cancer patients. It’s easy to tip the scale.

moonshine
Enjoy the moonshine!

I am super pleased that I am wrapping my head around getting on and getting out there. Have courage, bring mindfulness into your adventure.  Don’t let melanoma rule.  Find inspiration in the new, different way that you live. Sun safety matters and so does the adventure we call life!

Here’s one easy example-Get out there and enjoy a bit of moonshine this week. Life is full and so is the East coast moon on Thursday! It might be a cloud-covered evening but hey, there’s always tomorrow!  #melanomatheskin #melanoma #thursdaythoughts #melanomamoonshine

mooshine.jpg

We can-cer vive!

Janis