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!

DSC01608
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

This slideshow requires JavaScript.

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

 

Heroes Among Us

kapow-1601675_960_720.png

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.

John_McCain,_official_photo_portrait,_111th_Congress

“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

Aretha_Franklin_on_January_20,_2009_(cropped_2).jpg

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!

integrity.jpg

“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

ben f.jpg

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.

hero 1.jpg

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…

integ.jpg

“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

Immunotherapy and Playing For The Win

Deal Me In

poker magician deck gamble
Some days we feel lost in the shuffle.

Wondering about immunotherapy? Some days, I wonder myself and I am participating! Dana Farber Cancer Institute is where I go for treatment of melanoma and the online library gives a good overview of immunotherapy.  Whether a cancer patient or caregiver, the amount of  health information out there is overwhelming. Take a good look at your hand, figure out a strategy, and play to win!

When first learning of the suggested path for my recurrent metastatic melanoma, I cringed. Never having interest in medical science, it all felt like one grand experiment. And now, one year in to the clinical trial, I would say “yes, yes it is one grand experiment”, and how lucky I am to be here to say that! It’s not luck really as there is a tremendous amount of scientific data and staff backing our choices.

cards casino chance close up
Chances

Knowing nothing about clinical trials (and why would I?), I did some research and felt that I “would like” to be on pembrolizumab (Keytruda) though there were three drug options in this study.  It seemed that there were some successes with this immunotherapy and the treatment period was shorter and more do-able as we traveled to Boston. Wow, was I surprised to realize I had not even paid attention to the fact that the study randomizes. In other words, I would get whatever drug the computer randomly chose.

ball casino chance gamble
Taking a chance in the game of life!

And The Winner Is…

Ipilimumab (Yervoy) which I will take for 3 years if all goes well.  Initially, there is an induction phase. Basically, for me, this meant going to Dana Farber every 3 weeks for a few months last Fall. At that time, blood work, scans, appointments, all lead the way to getting an infusion. Some times I was refused due to poor lab results or questionable health. Heading back north without the treatment was tough, a quiet ride with uncertainty about our game plan, wondering how to play this hand, and knowing there is no clear win.

Let’s ace this!

And then, to turn around and say, yes! Yes to trying another trip soon after because of the time constraints of the clinical trial. After the induction phase, visits are now every 3 months, a holiday in retrospect to the intensity of the earlier months. Basically, the same drill: blood tests, scans, appointments, which all lead to the last part of the arduous day, the infusion.

Infusion time varies. Mine is 1.5 hours and I am always relieved to start the infusion, knowing I have passed the tests for this time, anted up with hope. It all starts with an IV port for various tests and at the end of the day amazing infusion nurses check and re-check everything, hook me up, and I take it all in, every drop of hope. By the way, this immunotherapy is not a personal cocktail but is prepared based on my weight for that day.

Parameters of this drug research frequently remind me that this is about finding answers, about learning from the 1,300+ candidates and there will be winners and losers. This clinical trial is for 3 years though I can drop out at any time. The medical team will continue to evaluate me based on the length of time I did the infusions. So far, I march forward or should I say drag forward celebrating one year of immunotherapy next month! The side effects are tough for me and feel heavier this time. How are you doing with your treatment? Please comment on your challenges!

As I mentioned in an earlier blog, immunotherapy is not chemotherapy.  A Cancer Today blogpost writes that immunotherapy is progressive treatment though the side effects are relevant and more tangible than previously known. There are many options depending on the type of cancer and the study.

Yippi for Ipi, Playing the Hand You’re Dealt

Research shows that Ipilimumab has success with melanoma. The website also states “YERVOY will not work for every patient. Individual results may vary.”-I get it, the disclaimer, and I choose this clinical trial for a couple of reasons:

  • I’ve got things I want to do
  • I hope this research will help another melanoma patient
  • I’ve always believed in paying it forward
  • I think I may be more able than others to tolerate the side effects
  • I will be followed and watched for several years

I could just skip the trial at Dana Farber because Ipi is approved for some stages of melanoma (meaning I could receive treatment closer to home). When randomized I chose to continue because yes, selfishly I want to live and think I have the best team in the world, but also because I want to participate in the study. There’s nothing pretty or glorious about this and some days the deck feels stacked. Bottom line is I want to keep playing. While some see this as a gamble, I know it’s a chance to win!

cards casino chance chip
Play for the Win!

#melanomatheskin #melanoma #naturalskinrocks #yippiforipi #cancer #Thursdaythoughts #playforthewin #immunotherapy

We can-cer vive!

Janis

 

 

Birds of a Feather

Cancer patients or is that cancer patience? Ah, I’ve learned a lot about patience as I plod along hoping that each day on this clinical trial brings me closer to healing. Rather than live in fear, I have the belief that in being patient with the immunotherapy drug that potentially treats melanoma and kicks my butt, that I have a chance.

robin 3.jpg

Hope and inspiration might just come from odd places as we fight cancer and look for balance in our lives. I find that living in the moment is a good place for me to reside! Simple pleasures come and go, as do the trickier moments of scans, tests, and infusions. The natural world bestows the greatest moments of a-ha and reminds me of what really matters.

Life on the Wing

And so it is with the birds. Living where nature abounds, panoramic views gives ample opportunity for viewing. A plethora of shore birds arrive seasonally, while the hardier sparrows, blue jays, and gulls will tough it out with the rest of us year rounders.

Reading Round Robin by Jack Kent is a fun picture book and always a reading rite of Spring  bringing lots of laughs! Three robins nests in the rafters at our house this year and I’ve learned a lot from the National Audubon about the American Robin! What better way to be reminded of the hope of tomorrow than with watching life unfold.

Rule the Roost

Nest #1 appeared in May, and we barely noticed it nicely tucked in to the far end of the deck…not sure how many eggs there were, but if you look closely at the pictures above you will see two young birds. Flights ensued the day after this picture and they were on their own shortly thereafter.

Nest #2
Nest #2

Nest #2 came immediately after #1 on the busy, walkway under our deck. Long strands of grass and nest making material had me keen to this busy pair of robins. Four blue eggs later, we waited. With a 12-14 day incubation that felt far longer, we finally had one robin. I’ve been told that 50% hatch is normal. My grand-girl caught this baby bird on video early on, and I’ve watched this video several times. Life is amazing, right?

To Every Season

Nest #3 is in the middle rafters and contains 3 eggs. It’s another high traffic area so we put a flower planter over it to provide a privacy screen. One robin hatched the other day, one egg is cracked, and one looks to be losing its robin’s egg blue.

This slideshow requires JavaScript.

This will be the last of the robins for this year. The weather will cool, the birds will leave, the landscape will change. I’ve taken the time to watch life, to have the patience to let it unfold. Meditation comes in many forms and be sure to take a moment to pause, find courage in your good moments, and let those positive thoughts take flight.

Thank you for signing up for my blog and let me know what you do to find those cancer-free moments. Stay tuned to learn about the empty nests!

#myhusbandwantsthedeckback #melanoma #cancer #Thursdaythoughts #melanomatheskin

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.

sungl.jpg

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?

suns.png

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!

sunshy.jpg

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

 

Fear and Reading-“The Emperor of All Maladies”

Warning: Dangerous Curve Ahead

Librarian and literacy advocate-gotta love a career like that. I find my melanoma takes away from what I want to do, how I thought my life played out. It’s changed my course in life and how dare those cancer cells take my greatest passions from me. Okay, I said it. Now, it’s time to get on with the life I never envisioned! Here’s one great book and one tiny, little reason not to read it, FEAR!

curve.png

Many of us get thrown curves in life and the big one for me right now happens to be cancer. I’ve always loved my profession and especially, the possibilities for connecting people with books, materials, resources, and education to empower them.  So it’s bound to overflow into my blog!

Avenue of Escape

My librarian/mentor and best bud long ago taught me that quite often the kids reading sports books are not the ones out playing sports…they just want to read about it.  The kids reading about abuse and tough family situations are quite often not living that at home, they just want to read about.  Often, our reading is about escape, about learning about what we don’t experience. We might just learn something!

I want to share a book about cancer. Now, why would we cancer patients want to read The Emperor of All Maladies by Siddhartha Mukherjee? Initially, I had no idea it was about cancer and as a lover of non-fiction (okay, I confess…I am a multi-genre lover who keeps multiple titles on the nightstand!), I made a mental note years ago that I wanted to check out that book some day.

In 2011, it won the Pulitzer Prize which reminded me again that someday I would read it. Then a few years later, I learned the subtitle :A Biography of Cancer. Shit! How does one read this book when already drowning in words like biopsy, cancer diagnosis, treatment, stress..that list is long so just suffice to say c-word stuff?

Mukherjee’s book was first published in 2010, so by 2017 with another melanoma diagnosis, it was time. I mean, the book’s information was no longer hot off the press and I knew I wanted to read it. Fear, fear, fear that it would bring me to places I didn’t want to go had held me back.

detour.jpg

The Road is Long

Goodreads.com offers relevant reviews and varied thoughts on this book, but I’d like to share a few thoughts as well. Non-fiction, in the contemporary publishing market, tends to weave facts with interesting story lines. The Emperor of All Maladies:A Biography of Cancer traces cancer from thousands of years ago to the 21st century, interweaving science, history, and human experience. Cancer has not taken the express lane!

Rather than feeling chaffed reading this title, I felt soothed. The Dana Farber Cancer Institute connection added another layer of confidence with my already swelling assurance of my skin cancer team. Secondly, I gained tremendous respect for the scientists, oncologists, and other professionals who have led and continue to advance toward cures; this journey has been far longer than I realized.

 

Lastly (though I could go on and on about this book!), it humbled me. People talk of the cancer club, yet this title manifests how each cancer patient has their own brave battle, and that together each of our unique roads leads forward together, be it caregiver,  healthcare staff, or patients. Thank you to ALL of those who came before us on this journey.

Fellow blogger and cancer patient, Melanoma in Me, writes about this amazing book and an opportunity to meet the author. I’ve met many authors in my life and hearing Mukherjee discuss cancer and what’s next would be even more inspirational. I hope to have that opportunity knowing how quickly the knowledge-base about cancer has expanded in the last decade.

In reading The Emperor of All Maladies, I am reminded that knowledge breaks down fear. Fear is a detour, a roadblock, and this post, a small example of how to leave it behind before it leaves you behind. Try this book, and let me know what you think! Thanks for signing up for my blog, too! #nofear #readingrisk #cancer #mindfulness #melanomatheskin #melanoma

We Can-cer vive!

Janis

PS I just realized PBS made a documentary (Ken Burns) about this in 2015 so I will watch it perhaps someday!

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