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

 

 

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

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

 

Sun Worship Part III

Time’s Up…We Know Better

Yeah, I’ve written about my childhood days in the sun and my days as a naive adult, too. But how did I manage to continue this sun worship until I became another cancer statistic? Those of you who are still sun junkies will want to read this I hope.This sun habit is no longer sensible. It kills.

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With adult children with lives of their own, my time beyond work was…well, mine! A novel idea, I readily choose more warm weather vacations in the Spring, sought out time at the beach, and did a lot more mucking about with boats. For me, life has always been best when on, in, or near water.

My sun-safe habits were moderate. Because of sun damage at a young age, I applied sunscreen to my nose regularly. Super solar days, I’d put on a baseball cap and bring a long sleeve shirt for the end-of-the day sunburn. If at the beach, I’d turn my chair away from the late day sun. On a boat, I’d be sure to cover up my skin as the day floated along. I started wearing sun glasses more…I mean who had heard of ocular melamona?

Feel the Burn

For those warm weather Spring vacations, I did something that I felt was very smart. I went to tanning beds. Being a logical person, I wanted to not burn on vacation and be able to participate in whatever sand, sun, sea adventure that came along. By tanning, my skin had a base of tan allowing me to be out and about without worrying about frying. I wouldn’t call myself a frequent flyer for tanning, but felt better for going. Perhaps it was a vitamin D boost or perhaps it was feeling warm?

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Whatever my source of sun, mindfulness had a different spin. At the end of the day, using lotion to prevent sun damage was part of the routine. Some days, a soak in an oil bath rejuvenated my dry skin. Different home remedies might include using a vinegar soaked wash cloth or a cold compress for sunburn. What sunburn remedies do you know of? I’d like to include them in a future blog listing so let me know!

The BIG Burn

The result of my sun-safe habits?  Metastatic melanoma. Hear my sarcasm? I wasn’t protecting myself. For the most part, I was doing “after: sun damage care. In my lifetime, our culture had no fear of the sun. We worship tan bodies, warm heat, and the relaxation of the hazy, lazy days of summer. My logic on how to have that healthy glow was actually setting me up for the big burn, the burn of fighting for my life.

Are you thinking you won’t get skin cancer? Or that if you have a little area removed, that life is good so grab that beach chair? There are different types of skin cancer, all of them are scary and melanoma is deadly. You don’t want to hear this but neither did I when I got that biopsy result that changed my life. Please think again!

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Thanks for following me and please let me know how you are changing the sun worship culture in your life. #Sunsmarts are in! Love being outside and  being sun shy is where it is at now that we know better! Save a life-yours! Be practical and learn sun-safe habits. #melanoma #melanomatheskin #naturalskinrocks #cancer #mindfulness

We can-cer vive!

Janis