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

 

Tolkinesque Cancer Trek within The Great American Read

ring

Passion Between the Pages

Are you loving the PBS Great American Read? I am. All right, so I forgot to watch last Tuesday at  8 pm but other than that I’m loving it! Gazillions of book talks, promotions, displays, and story times later in my professional life, this librarian is truly loving this event.

Why you ask? I mean, there’s not a lot of bling, blang, or blood, so what’s so enchanting? How often do we have people read us excerpts, promote the words and authors they love, and remind us to read those books on “the someday list”? Interviewees are enthralled with the books they’ve read or voted for on the PBS list of 100; in hearing their thoughts, I’m excited about what to read next.

Inspiration comes from that which we know soothes our soul, and in reading books, that inspiration also comes from a story unfolding, though we don’t know where the reading will lead us. It’s a gamble as to whether the story will take us places we want to go. I’d love to hear your favorite book of all time and where it takes you!

Really? Another Reading List?

owen

The first book on the PBS list that I’m reading is A Prayer for Owen Meany which I’ve picked up from the library. Author John Irving completely captivated me with Cider House Rules so this is the next of his I’ve wanted to read. It’s proving to be a challenge as the clinical trial I’m on for metastatic melanoma leaves me too tired to read! With over 500 pages, I am laughing at myself with the 5 pages or so I read a night!!!!

BUT (that’s a big but!), the writing is rich, the characters I am getting to know intimately, and I’m finding the writing takes me to another time, another place. What better way to escape the world of cancer treatment, than to let the words take me away. Besides,  little Owen Meany has captivated my heart and I am sorry to think of his battles ahead.

Journeys Versus Battles

The Lord of the Rings trilogy is on the PBS Great American Read list. I read the first, enough to recommend it to patrons, and with so many books out there, this is my standard philosophy on book series: read one and move on! I loved the journeys Tolkien took us on but found the battles to be arduous, violent, and senseless at times.

I recently had communication with an acquaintance who mentioned the idea of journeys versus battles as we discussed the challenges of cancer. He wrote “I remember being part of a group working on a program for people living with cancer and the doctor who led this said he preferred to refer to this as a ‘journey’ rather than a ‘fight.'” Thought provoking.

tolkien road

This captured me; the concept almost alien but I wanted to love the idea of a cancer journey, or life as a journey with cancer being one of those bumps on the road. Somehow I was feeling Tolkienesque, maybe the accidental adventurer like Bilbo Baggins, on this cancer journey, working through incredible, mythical landscapes with help from some amazingly, magical medical staff. I love to travel so this sounded great!

Uphill Battles

 

BUT (this is a bigger but still!) I don’t agree! The idea of cancer as a journey is upbeat and positive; that works for me! The reality is we cancer patients do battle each and every day. We fight back the demons in our minds. We warriors do surgeries, radiation, clinical trials, and defeat the evil darklord, cancer. This is OUR fight against evil!

Like Tolkien’s epic series, we cancer patients are never sure what is around the next corner. We learn to enjoy the time between peril, we battle our Smaug dragons, and fight for our treasure (not a mere golden ring), but time. Some of us lose our battles to time, some of us continue the fight.

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Yes, the analogy of a journey is a reasonable one, just fraught with battles to be won! We do our best to not get stranded in the battles, and must prepare with courage for each assault. Our journey may be a bit more dangerous than some but we all have our demons to fight, dragons to slay. Working through this idea, I’m going with life is a journey, and cancer patients the warriors against disease!

Watch the amazing Great Amercian Read on PBS. MY very favorite book on the #GreatReadPBS list? It’s not the ones I’ve mentioned in this blog. Tell me yours in the comments and I’ll tell you mine!

#melanomatheskin #cancer #GreatReadPBS #melanoma #TuesdayThoughts #somanybookssolittletime

We can-cer vive!

Janis

Nobel Prize for Immunotherapy Pioneers; The Long and Winding Road

black car on road near mountains

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

red stop sign

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.

Hitching a Ridearm asphalt blur close up

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

 

He Said, She Said; Finding Balance in a World of Words

This blog isn’t political though I have deeply strong thoughts about my government, the direction I’d like to see the country move, and the lack of integrity everywhere. Instead of talking about Kavanuagh or Ford and others in today’s hearing, I want to discuss language. The use of language in medical scenarios, such as melanoma cancer as described my Mayo Clinic.

Cold Calling

Health information is critical to making sense of a frightening diagnosis, mine was a second cancer diagnosis in 2017. The first time the biopsy came back positive for melanoma, my dermatologist left a terrifying message on my phone, the second time the same. I appreciated knowing up front that I have metastatic melanoma, and each time returned his call for more details.

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It’s what I describe as a cold call, learning that something is seriously wrong but needing to call to find out the details. Somehow, it would be more fitting to do this in person, but keep in mind time is of the essence when fighting cancer. After each of these calls, life went in to hyper-mode to learn what was next. The power of words, right?

Words can be critical to how we feel, our perspective on healing, and where we find our hope and courage. I want to hear what words have brought challenge to your life, what words have brought joy? Something as simple as clean scans are ginormous in a cancer patient’s life.

Them’s Fightin’ Words

Medically speaking, I’ve had some curiously frustrating situations. For example, in talking to my first local oncologist when I felt my cancer was back, she told me not to overreact. My local dermatologist made an illustration of how my excision was done and described the healing process. Unfortunately, I believed what they said, there words the gospel of medical belief.

cancer tablet

Except I pushed for a biopsy, except something felt wrong, except I needed to believe in myself because metastatic melanoma was in another area of my face. No blame as these medical professionals felt they were right, but jeez the time lost while I am feeling the he said she said of medical mistakes. Meanwhile, time had gone by….

My Hearing – No, I’m Not Up for SCOTUS!

Working with Dana Farber has been an incredible experience, the level of knowledge, the cancer research done there, and the integrity of the staff is amazing. Though my local radiation doctor didn’t feel I would have hearing loss, one of my Dana Farber oncologists, said it was very probable. Another he said, she said…I am going with what I know: my hearing is poor, I no longer have ear wax (just what you needed to know, right?),  and my left ear just feels different.

Sorry to complain, it’s not my point here at all. This writing is really a reminder to the collective we. We know our bodies, our minds, our spirits. Believe in yourself and find your inspiration. Balance is critical to our healing from disease; accurate information is essential and professional staff builds confidence.

Doctor, Doctor Give Me the News (Robert Palmer)

In August, I had a CT scan at Dana Farber that found a questionable area, and the minute I went in to see the best skin cancer oncologist ever (okay, I may be prejudiced!), he greeted my and immediately disclosed his concerns. He also let me know it was not melanoma, and that this was not his area of knowledge.

It turned out to be nothing of concern, but how reassuring to have my oncologist explain what they saw, what needed to happen, and admit that he was not the doctor for this concern. That’s integrity of words, using language to tell what is known, and what direction my medical challenges need to go.

There is no fake news and real news, no he said she said in the medical world. Find your best possible information and staff, and move toward your medical reality confident in the integrity of what is known at this point. I only wish that we could use the words integrity and government in the same phrase…that would be language I’d be hearing!

water and words

#hesaidshesaid    #melanomatheskin   #cancer   #melanoma #naturalskinrocks #medical integrity #danafarber  #scotus

We can-cer vive!

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

 

 

Metastatic Melanoma and Medical Melee

Life Lessons

We’re learning, every day, each of us in our own unique way. Think on this for a moment. What was it today that was that aha moment. Each day we are given an opportunity to take more in, to consider, and grow. Give yourself that moment to consider how to move forward, to sail on.

Melanoma and the health information available is growing, too. Cancer patients may feel overwhelmed with information, options, and cancer research which seems to grow faster than the speed of light! Some of us are lucky enough to be alive thanks to clinical trials and cancer research. Consider what you need or want to know, and then get on with living. Processing helps us to move forward.

Courage ebbs and flows; many refer to it as the medical merry go-round. Recently, one of the many scans that I have every 3 months sent me into a minor tailspin.  Cancer is such a head game! Totally expecting positive tests, my oncologist suggested further testing. No problem, I can do that, right? UGH. Everything turned out fine but below is example of that damn mind game that creeps in.

Waiting Is

Initially, confidence ruled and I knew it was no worries. And then sinking feelings, inspiration drowning, hope weighted down. That positive attitude twisting, careening in the flotsam of medical melee. Then, time ticked for an eternity as I waited to have the scan, waited for the doctor to come back from vacation, waited to know, waited. I’ve learned to negate the monsters of waiting, to keep them at bay.

Author Robert A. Heinlein wrote in Stranger in a Strange Land, “Waiting is”. Perfect, really, and the dangling of this thought encompasses the abeyance of disease, of cancer, of the abhorrence of living in a suspended state. I refuse to live as though on the bridge of the ship as it begins to sink, watching, waiting as though a bystander in my own destiny.

Navigating Your Course

How do you deal with those times, the uncertainties, the waiting? I’d love to hear how you cope with waiting, fear, and the head games. The mind knows what has been presented, fear can take us down. I choose to live, live deeply, and to fill my sails!

boat deck leisure ocean

Another lesson learned. Life with cancer is different and different forever, no doubt, but the quality of the voyage is ours to determine, to balance. Right your vessel, tighten your sheets, and carry on! #melanomatheskin  #cancer #melanoma #wecan-cervive #sailawaywithme

We can-cer vive!

Janis