Vote Early, Vote Often

Feeling the Blow

I’m already breaking a political promise; I vowed this blog wouldn’t get into my political beliefs. So like all those running for office, not all promises are kept! You see sometimes life changes our platforms, whether we approve or not! I’ve voted and hope you participate on November 6th if not before. I’d love to hear your thoughts on politics, voting, or cancer. Comments are encouraged and discussion most welcome!

boxer

After years of great health, I was dealt the first melanoma blow in 2015.  Determined not to have it be a knock out, I came back fighting. Until things didn’t feel right to me again, a facial excision left an area tender; my old boxing injury I joked. Except  something wasn’t right and I needed to believe in myself, to fight.

The Main Event (Round Two)

ring 2

Doctors didn’t believe me and so time went by; we cancer patients have a love-hate relationship with time. (We want more of it, though hate it when it means waiting on test results). Finally, I requested a biopsy; metastatic melanoma again and recommendations that we now go to the medical epi-center of Boston, Dana Farber Cancer Institute being our choice. I was in the big ring now.

I’ve mentioned my cancer before and will again, but not in the context of politics. I could be the poster child for pre-existing conditions. My skin, like yours, holds onto its history; its damage, whether it be sun or other sources is pre-existing. My metastatic melanoma could have happened as a child, or just a few years ago. It’s been two hard punches to the left side of my face.

So, my pre-existing condition just may have been lurking for years, waiting for the optimum conditions to let cancer, medical diagnosis, doctors and dermatologists, become the new normal in my life. I’ve always listened to my physical being, but we cancer patients feel we’re caught cold when going another round. Pre-existing, why yes I am!

boxing 1

Saved By The Bell

Think pre-existing conditions aren’t relevant to you? Yes, I gratefully thought that previous to 2015. I agree that we want to cultivate hope and inspiration, not worry about the what-ifs that can drag us down with a one-two punch.  And any given day, you may be in a bout for your life, for your medical treatment.

Insurance discussion is a constant in our home, at our table now. I’m the lucky one because we have insurance to cover my clinical trial drug for now. At some point, we are going to make a decision on insurance expenses and/or treatment. Decisions are regularly made by people who can’t afford insurance premiums. Long before my health issues, I was deeply affected by those I love making tough life choices based on medical expense.

We Are The Champions

So, yeah! Vote early, vote often, but whatever you do vote! We’ve all fallen to the canvas a few times, all taken a few sucker punches. Life is like that. However you vote, at least you’re making a decision to participate, to get up and fight for what you believe in. An outcome, the decision, will be heard; if you vote, you’ve put it out there, given it your best shot!

Contenders, all of us, with our concerns and passions. Believe in yourself, have courage, and stay in the ring. There has never been a more important time to fill out a ballot. Voting is super easy and vitally important. I’ve taken to voting absentee; bringing the ballot home to research the questions and candidates more closely. Vote, vote, vote for what matters to you on November 6th (and wear your sunscreen;).

Next time, I promise not to talk politics. “And if you believe that, I’ve got a bridge…”!

#melanomatheskin #vote #melanoma #cancer #sunsavvy365 #Tuesdaythoughts

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.

courage 1

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.

phone-old-year-built-1955-bakelite-163007

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

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

 

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