“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

Genre, Cancer, and Book Bullying

Building the reading list!

Listing

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

Easy reader!

Hammock Reading

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

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

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

Library lover!

Reading In And Out Of The Zone

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

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

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

Beyond the Fantasy

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

Reading Matters!

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

We can-cer vive!

Janis

 

Empty Nest Inspiration

DSC01619 (1)Transitions are common this time of year. Learning to adjust to your youngest going to kindergarten, your oldest packing for college, or feeling quite sure that it all can’t come soon enough or that’s it’s happening too quickly, the bottom line is late summer is a time of transition.

Bye Bye Birdie

Melanoma and clinical trial treatment has changed my life dramatically. Cancer patients know that life as we know it is gone forever; learning to live with the possibility of it’s return and enjoying every moment are what matters.

For me, it’s the literal nests this year; three robin nests, one after the other, neatly tucked in the rafters under the deck gave me ample opportunity to watch life (and death) up close and personal. Advocating for the adults by offering them some peace and a piece of the deck with each family’s similar, yet unique style.

Bird’s Eye View

It may sound silly or remedial, but watching these families afforded me an amazing opportunity, an opportunity to be in the moment. To be aware of all my senses as my almost-daily robin’s nest encounters allowed that, a meditation of sorts. A quick peak through the deck boards to count eggs, watch newborns, consider unhatched eggs, listen for the immature chirps that will someday be a strong pip, pip, pip that the adults vocalized when I grabbed a moment with the youngsters.

 

In addition to my photos, there’s an amazing baby robin video that was taken of nest #2 (along with  robin book suggestions). There were some soul-filling moments this summer, a meditation with nature that I felt privy to, up close and personal. Disappointment over unhatched eggs wasn’t quite sadness, but something near it. Just an egg, for me it reminded me of the fragile balance of life, the sorrow of loss.

Fly The Nest

I miss my robin time. Siting those that fly past, I am quite sure they are “mine” and like my grown children that have lives of their own, I miss them and wish them health and happiness. For now, the empty nests are reminders of the beauty I shared with these robins. Look at the flora starting to grow in their nests now…and so life goes!

Tomorrow is too far off for me as I have learned from nature to live in this very moment.  My empty nests sit on the deck stairs yet, I find hope and inspiration for next year when my robins will build again. Healing comes in the belief of a tomorrow.   Please do sign up for my blog and let me know where you find your courage and inspiration in the comments! #melanomatheskin #cancer #melanoma #myhusbandwantsthedeckback #wecan-cervive

We can-cer vive!

Janis

6 Things You May Not Know About Melanoma

Breaking News

Some of you may remember a time when breaking news meant something intensely serious was happening. When J.F.K. died I was watching some morning show while my Mother ironed (another concept that dates many of us!). I remember it vaguely as I was young; my mother was crying and that felt like breaking news, like something had broken because it had.

Breaking news today, well that’s an occurrence that we no longer pay attention to as it has lost it’s earnestness. Breaking news is everywhere, everyday and no longer has any significant value. That leaves each of us to determine what to watch, what not. Like the friend who is never quite honest, I’ve tired with the uncertainty of the news and the shortage of information, and the lunacy is abundant.

BUT…

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Watch for spots

There are things you may not know about metastatic melanoma, a type of skin cancer, and I feel it is breaking news to inform you with a few short hits on what we know at this point. I save the most interesting for last so keep reading! There are many misconceptions about melanoma, so here’s a basic list of health information:

  1. Melanoma is deadly so be sure to be aware of the abcde’s of melanoma. Do skin checks and be #sunsmart.
  2.  Basal cell and squamous cell carcinoma are considered non-melanoma skin cancers. Read about them here at Web MD. While they are skin cancers, they do not turn into melanoma.
  3. Cancer resources for skin related disease can be found in online resources such as the American Academy of Dermatology Association. The photos may help but don’t let that be your guide. Like the shirt that you bought online that turned out to be a completely different color, your skin cancer may not look like digital photos.Be wise and see a dermatologist in person.
  4.  Depending on the staging, melanoma is not a quick surgical removal. Possibilities include excision, plastic surgery, nuclear dyes (the most painful thing ever) to find lymph node drainage, radiation, and a plethora of scans and tests.
  5. Pay attention to the UV Index – the sun is powerful!

And Here It Is…The REAL Breaking News!

   6. Melanoma does NOT react positively in chemo treatment.

Yeah, that’s the big news. it may be used to relieve symptoms of this aggressive disease, most commonly for Stage IV patients. Cancer treatment is equated to chemotherapy and guess what? That’s not always true! I’ve had people say things like:

  • “Wow! You must be getting a light dose. You haven’t lost your hair”
  • “You look really healthy compared to other people I know who’ve been on chemo”
  • “Why are you fatigued if you’re not receiving chemotherapy?”

My cancer-related fatigue is from a clinical trial that I participate in and I receive the drug Yervoy. The study compares Yervoy to other drugs such as Keytruda used for metastatic melanoma. At this time, there is no cure for melanoma and I hope that in participating in this immunotherapy research, that someday there will be a drug or series of drugs that can reduce the death rate for others, and not be filled with risks and side effects.

Visually, I do look like myself and I believe I will heal. Fatigue is intense at times; not that I need to nap but I feel like the a horse pulling thousand pound weights most days. Aches are challenging me more over time, and I’ve been offered steroids to alleviate the pain. I’m not ready to put more drugs into this soupy/saucy mix but I’m close.

Every day is a great day. I only mention some of the melanoma cancer tips because there are many misconceptions. There’s a lot going on inside some of us though it may not show! I’ve learned to not judge a book by it’s cover in a medical sense now that I have medical turmoil within. Inspiration also comes from within, so look beyond all the cancer craziness, find your courage, and bring that to the surface and let it shine! #melanomatheskin #getnaked #melanoma #cancer #yervoy

Thanks for signing up and please do share your thoughts as this is how we learn, grow, and find hope!

We can-cer vive!

Janis

 

 

Melanoma Marathon

Now Racing Through My Mind…

is the appointments, no longer in the distance but hurdles to be jumped in the next few days. I honestly, don’t see a finish line in my melanoma path, primarily because beating cancer is now a way of life. This isn’t a knee scrape that we put a band aid on and all is good.

Bottom line, I’m alive and I’m in the care of world class doctors at Dana Farber, and I’m monitored on a regular basis.  Do I want to be under such scrutiny? Hell, yes! While I’d love to have no medical anything in life, I have a ginormous medical life. This is what is keeping me alive and that is how I look at it. This IS life now.

Not The Fast Track

My journey involves traveling. Weighing whether my Stage III metastatic melanoma was worthy of out-of-state cancer treatment with the recurrence, it was obvious that was the track we were on. Road trips add another layer of angst but once you get the routine down its okay.

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A folder includes changes in medicines, printed schedules, and other loose paperwork. The notebook of questions, previous notes, and dates, etc. is essential. Identification and the dreaded health insurance cards are put in my “Maggie Bag”… a gift from a friend that keeps the small essentials together. There’s also a cribbage board in there, pens, chapstick, pain relievers, and special beads from the grandkids.

DSC01632All of this goes in the backpack, along with water bottles, snacks, and perhaps some knitting or reading.  I can’t do books on Dana Farber days as my mind wanders but a good magazine is easier on the brain.  Why the backpack? These days are beyond full so we bring what we need and usually don’t have to return to the parking garage until day’s end.  Wear comfortable walking shoes as procedures are not next door! What works for you on big medical days? I’d love to hear your tips! Please comment.

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Having a caregiver, if possible, is very important. Driving, listening to medical professionals, helping to navigate floors, offices, and labs, taking notes, asking questions, and just offering support in a very anxious situation is incredibly helpful.

Start Up: A Marathon with Hurdles

Dermatologists will examine every dot and spot. Included in the day is: blood work, MRI and CT scans, skin cancer oncologists, and the infusion team if all goes well. Beyond grueling as woven in to this time of poking and prodding, is the nugget all cancer patients keep buried in the back of their thoughts…”will the tests come back clean?”.

Health information is exchanged. I let my medical team know of my fatigue challenges, what aches, any new areas in question. In return, I will get preliminary results from all the testing, and perhaps a green light for infusion of Yervoy (imilimumab), one of the drugs in the clinical trial that I started last Fall.

Train For The Hurdles

Like each day, I take the medical days moment by moment. Each appointment is important, and brings me one step closer to the end-of-the-day infusion that may be enhancing my immune system. Train your brain to seek the positive when possible. How you prepare for the next appointment matters.

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Lead into your hurdles with hope and courage; it makes for a strong landing. Life is different for each of us, and we all have our challenges, our hurdles. Take each one as they come, and work toward a solid landing. Like the track and field runner, practice finding balance and positive head space. Where does your inspiration come from? #rootingforyou #cancer #melanomatheskin #melanoma #yippyforipi #inforthewin #Tuesdaythoughts

We can-cer vive!

Janis