“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.

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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!

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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

 

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

Immunotherapy and Playing For The Win

Deal Me In

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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.

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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.

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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!

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Play for the Win!

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

We can-cer vive!

Janis