“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

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…

Melanoma_Awareness_Ribbon_alternative
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

 

 

Flag Day and Looking for My Delete Button

sky flags usa blue sky

Old Glory

We all know Betsy Ross may have made the first American flag, and that the current flag represents the 13 original colonies in its blue and white stripes with 50 stars symbolizing the states. Proudly display the American flag on#flagday June 14th.

So Where Is That Delete Button?

But…how many of you know that the U.S. Flag Day is also Julie Petrowski’s birthday? I met Julie the year we moved back to Minnesota. I was in 6th grade and honestly,  I don’t know if she was in my grade, what she looked like, or anything much.  We were neighbors and friends; my first ever snowmobile ride was with Julie and her Dad, she was in my Girl Scout troop. That’s the full sum of what I remember about Julie Petrowski, in part because being a military family we again transferred after a 9 month stint in the Midwest.

Julie is a brief snapshot of my past and non-essential information. So, tell me why can’t I purge Julie from my database of useless information? No offense, Julie, but you probably don’t even remember me at all! I don’t have #bigdata space in my brain and there seems to be a lot of stuff that could go.

The Mystery of History

Sure, we remember our global history, our medical history, our career history, our family history.  I try not to dwell on the cancer “stuff”, but often need to retrieve it for medical professionals.  Again, this is a great time to refer to my medical notebook.  I have the ability to put some of the important stuff in the back of my mind.  It seems like a great storage closet until I need it again and then, whoa, where is that?

Thoughts can be wonderful, thoughts can be detrimental. Like I don’t need to ponder my melanoma history, that exact moment that the sun niched out a few facial cells to wait, in hiding.  Consideration of whether this happened as a child, a teen, or an adult is irrelevant.  More importantly, what am I doing to be present, right now? Scurry the counter-productive thoughts away!

The Evils of Retrieval

Working with family literacy initiatives for most of my adult life, I’ve got a fascination with how brains work, what we keep and why.  How amazing is it that young children understand so much vocabulary long before they are developmentally ready to speak?  Or that teens have all these brain connections made in their short lives, of which many will be un-wired because they are not needed or used. And Alzheimer’s -what happens to people with that tragic, memory depriving disease?

A-Maze!

Exercise that brain! Stimulate your mind. Work if you are able. Play scrabble or cribbage, listen to music and sing along, discuss current events and issues that matter to you, write a note to an old friend or fellow cancer patient. Meditation brings mindfulness! Between those moments of cancer-related fatigue, pain, treatment, or whatever cancer brings your way, be open to mind exercise and positive thoughts.  Cancer tips (life tips) are quite simple cues to jog your memory. Leave yourself notes, set the oven timer, put a reminder in your phone -do what you need to for information retrieval and be patient with yourself.  Give yourself the gift of inspiration…you can only go up from there!

How do you clear out the cobwebs?

Julie Petroski seems to be with me for life, and like my cancer thoughts, I incorporate her into life and move forward. I’d still love to better understand how to do a bit of brain housekeeping, clean out the cobwebs and useless information. Maybe then I might remember where I left my eyeglasses or that bit of important information that is quietly, tiptoeing though my head, but not forthcoming…until the middle of the night!

Friendly reminder – put out your American flag on June 14th! #melanoma  #melanomatheskinwerein  #oldglory #deletebutton #Thursdaythoughts #mindfulness

Happy Flag Day, America! And please wish Julie a Happy Birthday if you see her!

We can-cer vive!

Janis

Under the Influence; Cancer-Related Fatigue

exhaustion smileyCancer-related fatigue, a consistent plague for cancer patients, is pulling hard on me today.  Writing while I am deeply under the fatigue curse is not my typical mode for writing or working.  Today I choose to write under the influence; to put the feeling of fatigue in to black and white space with a side of fuzzy gray. Walk a straight line-what?  I’m zigzagging through this day!

Currently on a clinical trial through Dana Farber Cancer Institute, I am grateful for the medical chance to rid myself of melanoma, AND feel empowered to help other skin cancer patients in the future.  I’ll delve into the trial more in another writing, but today I want to share with you one of the side effects that I struggle with every single day, cancer-related fatigue.

Intrigue of Fatigue

No, I’m not necessarily tired.  How about you?  Tired is a time for napping or “The Big Sleep” at night after physical and/or mental activity.  Fatigue and tiredness are not interchangeable.  We all have our moments of tiredness or that mid-afternoon slump.

So, then, what is fatigue?  Here are a few examples to consider:

  • Waking up in the morning and surmising that you are dragging
  • Knowing that there is no energy reserve, the tank is empty
  • Finding that you need to take breaks throughout the day
  • Deciding that paying the bills is beyond you right now
  • Feeling frustration for what you long to do
  • Pushing yourself one day, only to have zero to give the next dayanimal cat face close up feline

 

“Men weary as much of not doing the things they want to do as of doing the things they do not want to” –Author Eric Hoffer

Physical and emotional, fatigue is real and real grueling.  The American Cancer Society’s post about cancer fatigue is worth exploring. When asked, I explain that it feels like I’m dragging cement weights through my day with a side of brain fog. Let me know how you get through your fatigue. Here are a few fatigue cancer tips that work for me:

  • Drink coffee (I just started last summer…not sure if it helps but it tastes wonderful as I pysch myself UP for the day)
  • Exercise or move (let your body know you’re up for the challenge!)
  • Yoga (found this awesome class last Fall-brings together restorative poses and meditation)
  • Pause and give yourself time to re-set as needed

     

  • Eat Well!
  • Push through the fatigue when you have to (ie. work)
  • Watch for the bigger waves of fatigue, ride them out with what works for you, and also ride the waves of feeling okay
  • Free yourself from the headset that you are fatigued because the cancer is winning-be positive when you can
  • Incorporate fatigue into your life; this may be the new you so get on with living!
  • Laugh and smile – you’re doing the best you can!

 

Chin up, even when lying down!

Cancer and treatments are just one piece of our lives.  With a 3 year infusion course, my clinical trial is a long haul, and no guarantee that once the immunotherapy is over that the cancer-related fatigue will be gone.  Let’s choose a path of courage and hope.  We all need to carry that inspiration with us for life, no matter how heavy. And smiles carry no weight! #melanomatheskinwerein  #melanoma  #cancer-relatedfatigue #cancer Phew, time for a break!

We can-cer vive!

Janis