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.

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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.

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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!

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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.

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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

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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

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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.

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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

“Garden as Though…

You Will Live Forever”-William Kent

Wow! Where did that week go? My intent to write twice each week has been lost this week. Reminds me of  the lyrics to My Poor Meatball “that rolled right out the door”! I meant to write, I intended to write, and it all slipped out of my hands and right out the door!

Gardening is one of my passions. This year, with the clinical trial for recurring melanoma, I chose to focus on healing, well-being, gardening, and finding balance within the cancer life. The middle of last week found me starting to disassemble my garden beds…bittersweet, for sure.

“If you have a garden…

and a library, you have everything you need”- Marcus Tullius Cicero

Veggies are growing, the Three Sister Garden has had some success and some failure (I’ll talk about this in another post), and my glorious sunflowers are now bending and bowing with the weight of shorter days. Fatigue gets the best of me so my dreams of preserving, drying flowers, saving seeds, and more are not realistic. Healing comes in the form of watching and nurturing the garden, the self.

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Wonder and wonderful beyond words for me this past weekend was the visit from three very dear librarian friends. Adrenaline got me through the basic preparation for this easy gang. Because of the incredible dynamic among this former work team, each of us jumped in and as always, things went as smooth as butter (with lobster, of course)!

Dancing to the Salsa

Tomato season is here, right? I have a lot of sweet cherry tomatoes. Company brought some of the most amazing, BIG tomatoes, peppers, corn, etc. Conversation rambled about fresh salsa ingredients, issues in the world, food choices, mutual friends, healthy diet ideas, and books, so much so that I need to make a list with the titles reviewed. I’ll be sure to share it!

full frame shot of red tomatoes

Amazing Vermont produce, two seaside dinners, and chocolate humus were just the side dishes for me. Nourishment of the soul came around those meals. Laughter, love, and life made our time replete. Sated by friendship, deep and strong, I will remember to carry this soul-fullness on more challenging melanoma treatment days. #melanomatheskinwerein #cancer #laughteristhebestmedicine  #melanoma #naturalskinrocks  #thankyouforbeingyou

We can-cer vive!

Janis

 

 

Heroes Among Us

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An American Hero

 

With the passing of John McCain, many of us are reminded of the fragility of life and the opportunity we have while living. Disconnected politically, I admired McCain for his service to the United States, for his integrity of character, and for his clear, well defined opinions. He was a fighter and we cancer patients and caregivers know about that.

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“Nothing in life is more liberating than to fight for a cause larger than yourself, something that encompasses you but is not defined by your existence alone.” 

“Courage is not the absence of fear, but the capacity to act despite our fears.” 

I could talk about his melanoma or his glioblastoma. I could talk about his side of the isle versus the one I favor, I could say how meaningful his thumbs down was on the Senate floor in an effort to span party lines and vote to keep the Affordable Care Act that so many Americans need.

All of it matters, his list of accomplishments extensive. Inspiration comes to us in snippets of life, people, and example. Disease is an equalizer and McCain taught us to live each moment to the best, to carry our courage close by, and to find the strength to carry on.

R-E-S-P-E-C-T

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We lost Aretha Franklin recently as well. Not one to follow the celebrity life and finding it caustic for the most part, I admire those in the limelight who are exceptionally talented, use their status to work toward the common good, and have integrity of character. Hmmm….integrity really is key to a life well lived!

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“We all require and want respect, man or woman, black or white. It’s our basic human right.”                                                                                                                                                                                                                                 

“Every birthday is a gift. Every day is a gift.”

“Sometimes, what you’re looking for is already there.”

Lover of life, lover of people, we lost Aretha to pancreatic cancer. I consider her a hero as she was far more than the Queen of Soul. Aretha fought many personal challenges, aided in the promotion of civil and women’s rights, and had the courage to hold her head high. She taught us what respect truly means.

If You Could Spend an Hour with One Person

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Who would that be? Ben Franklin comes to mind (though I’ve others such as Eleanor Roosevelt, Indira Gandhi, Susan B. Anthony, Rosa Parks, Virginia Woolf, Dalai Lama, Vincent Van Gogh, Martin Luther King, Stephen Hawking…).

Ben Franklin, a founding Father and inventor, was also a man of his word, literally. He wrote often and started a “lending library” in 1731. I find his integrity of character to include: being a person of action, in service to his country, and peppered with great wit and humor. He taught us to be true to ourselves, to be real.

“What you seem to be, be really.”

“Wish not so much to live long as to live well.”

Who are your heroes?  Be sure to write your comments so we can continue this conversation. My deepest feeling on this is that the hero need not be historically great, in the limelight, or a modern day patriot. Integrity is the commonality; the hero is in each of us, ready to teach.

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You Are My Hero

Unsung heroes are around us. It’s the Mom walking her hairless child through Dana Farber heading for the next treatment. It’s the cancer patient learning that the disease is terminal. Or maybe, it’s that person pushing through the next cycle of cancer uncertainty in hope of more time, another moment to enjoy life. Cancer examples, yet each of us has our own example in life, in integrity. Look at the person beside you; we all wear capes!

We’re in this thing called life together. Perhaps our hero life is small, perhaps it’s a kind gesture, a smile, a hug. Perhaps you make a positive difference today. Perhaps you model the character of integrity…

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“Do you love life? Then do not squander time, for that’s the stuff life is made of.”          Ben Franklin

#melanomatheskin #cancer #hero #wecan-cervive #naturalskinrocks #melanoma #Thursdaythoughts #respect

We can-cer vive!

Janis

Genre, Cancer, and Book Bullying

Building the reading list!

Listing

What do you read? With company visiting, this is a common conversation in our home and one that always fascinates me. Titles, electronic or hard copy, are shared. Favorite library tales are discussed and everyone returns home with new lists, fodder in consideration of future reads, not all will be read but all will be considered.

Easy reader!

Hammock Reading

We are readers, my husband and I, with rare common ground. He sometimes enjoys light reading, and Robert Parker is his favorite mindless read when looking for something comfortable and non-strenuous. He tackles other things but loves a-re-read of Parker, The Ancient Child, All the President’s Men, and others. He is voracious, I dive deep into well worded writing. One we both enjoyed and have talked about at length is A Gentleman in Moscow.

As a librarian with a huge focus on family literacy, I am passionate about picture books and will always bring home a stack from my local library. I also love children’s chapter books that I can share with my grand-girl. I find this to be an enjoyable escape from the drama of being a cancer patient and the uncertainty that melanoma brings to the mind. This is my complete area of comfort, my hammock in the library world.

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In working with young adults, I learned to love certain authors; currently I am reading Tomi Adeyemi’s Children of Blood and Bone; this title has shown itself in multiple reviews and Jimmy Fallon’s Tonight Show chose it for a summer read. Well, technically, it is the finalist of a handful suggested. With his promotion of reading and libraries, I knew it was a book to read now!

Library lover!

Reading In And Out Of The Zone

I’m out of my element with this book as I’m not a fantasy fan. It’s an allegory of the black experience, gods of color, and the belief of magic. I love it and highly recommend it! This is definitely a series in the making with movies to follow. Check out this interview with Tomi Adeyemi and I’m also loving that she encourages young writers. Thank you, Jimmy Fallon for this suggestion. Sometimes, it’s great to read out of our comfort zone.

So why blog about this and how does it relate to cancer? Reading takes on all forms; an engineer friend who reads technical matter, a non-fiction lover like me, or a light summer read that everyone loves. It’s all GOOD! Reading Matters! Recently, when getting scans at Dana Farber Cancer Institute, I asked a technician what she was reading. She joked and said she reads scans. We all have our focus and I’m grateful for that expertise. With an area in question on the CT this time, medical and professional reading is critical.

Awareness of discoveries, studies and clinical trials, and pertinent health information leads me to books and the latest in the field of cancer. AACR medical journal articles editor picks relating current cancer studies involving prostrate, breast, lymphoma, and other cancers are weighty reads, at best. For me, it’s an attempt to understand that which is not understood.

Beyond the Fantasy

But then, aren’t we all waiting for the cure; the magic beyond the fantasy, the scientific moment when healing takes place, when pain is replaced with hope, when that one child is given the reward of life for all his or her courage and efforts to be well. Cancer research is not a facile path, nor is the documentation. Reading snippets works for me; I leave the serious understanding to medical professionals!

Reading Matters!

Skip judgement and don’t be a book bully. People read for many different reasons. Escape/fantasy seems to bring more balance to me right now though next up is a non-fiction book I’ve been wanting to read by Tara Westover, Educated, another New York Times bestseller. So tell me, what are you reading and where do you find your inspiration? I’d love to add it to my list! #melanonatheskin #cancer #melanoma #bookreviews #readingmatters  #Tuesdaythoughts #whatareyoureading #librarylover #naturalskinrocks #wecan-cervive

We can-cer vive!

Janis