Pollyanna must have believed in Silver Linings

Today I am ever so grateful for the precious gift of time.  Today I’m reminded that time is a bright light in this cancer cloud I live in.  I just read a FB post by Dan’s cousin whose husband suddenly passed away four months ago. Her post, written to her husband, included Diamond Rio’s One More Day.  I thank her for sharing both her grief and her healing.   She often includes a song she’s connected to in this aspect of life’s journey that she was thrust into.  I listen to the lyrics and feel the joy of their love.  I know she will  feel that love every day of her life here on earth and beyond. I know she feels too the love, prayers, and support of those who read her post and are thinking of her, not just today, but every day.

And so I think how lucky I am to be living, living in a time and place that genomic testing is done on lung cancer tumors.  That researchers have developed more than one drug to attack this ROS1 cancer I have, even though only 1to 2% of lung cancer patients have this cell mutation.  Time for the second drug (lorlatinib) to be available when the first (crizotinib) could not protect my brain.  Every minute of time is one minute closer to the next targeted therapy drug being available if I should need it.  The gift of time to make more precious memories.  Time to understand why I shouldn’t shy away from that camera. Given time to say, “You know, I’ll always be with you”.

Does EVERY cloud have a silver lining? Well, I say yes, if you’re open to it, and maybe even determined to search for it.  But sometimes it seems you have to work so hard getting through the darkness of the cloud that you do get lost in your search. Everyone does, I think, at times.  Even those strong of faith.  Those with great support systems around them.  That’s where my thought about Pollyanna comes in.  Her brain, heart, soul must have all been “wired” for optimism.  We need to be optimists in life so to be prepared. I think we can train our minds to be optimists.  You shouldn’t ever miss a silver lining.  They’re the joy I find every day in the everyday.  In the “little things” are the most beautiful of silver linings: love, peace, a new day, strength, life.  Not little at all.

In case you’re wondering-

In thinking about this concept of silver linings I learned that  ‘silver lining’  was coined by John Milton in Comus: A Mask Presented at Ludlow Castle, 1634

“I see ye visibly, and now believe
That he, the Supreme Good, to whom all things ill
Are but as slavish officers of vengeance,
Would send a glistering guardian, if need were
To keep my life and honour unassailed.
Was I deceived, or did a sable cloud
Turn forth her silver lining on the night?
I did not err; there does a sable cloud
Turn forth her silver lining on the night,
And casts a gleam over this tufted grove. ” phrases.org

And Pollyanna, the ever optimistic child in Eleanor Porter’s 1913 novel.  Also in the 1960 Disney movie.  I think it’s a compliment to be called a Pollyanna .

The tiniest thread of silver lining grows into something quite magnificent before you know.  This happens to me.  I’m learning more each day, especially since I’ve been given this gift of time. Finding joy in the everyday every day.

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Still busy, no pickles!

The hum of the dehydrator reminded me of finding joy in the everyday EVERY day. That reminded me it’s time to share what’s new in my world.

Lying very still, palms out,  light dimmed,  music playing, I glance down to peek at the eighteen needles just before my body relaxes and I feel the energy flowing to my fingertips and toes.  Yup, acupuncture.  Before I know it the half hour is up, Dr. Z is back in the room pulling out the teeny needles, and I have to make my reentry to this world.  My body responds well to acupuncture.  Many years ago it “cured” my chronic migraines.  Eight treatments over four weeks.  Headaches gone, just like that, after years of torment.

When I read that neuropathy is treated with acupuncture, I called Dr. Z. to schedule a visit.  A side effect of my targeted therapy, neuropathy is the mini beast I’m dealing with now.  Fingers, hands, toes, and left foot. None of the descriptions I read prepared me for how it would affect me. Wow.  Much tougher than daily diarrhea was while on crizotinib.  We already reduced my med dosage, so that’s not an option.  Out of my research came  two possible remedies for relief: acupuncture and topical cannabis essential oil.  The oil provides temporary relief. After two sessions of eight scheduled, I can see marked improvement from the acupuncture.  It’s going to work.

No, acupuncture  doesn’t hurt.  Don’t like needles?  Don’t look!  These are just tiny, thin as a piece of hair, and they get poked into your skin.  Okay,  how about gently inserted?  I had to count as he gently inserted them to even know how many there were.  Two on the inside of each elbow, one near each thumb, three on the inside of each knee, two on each ankle, and one in each foot.  I think.  I know I counted 18.  Well really I counted nine, on each side.  Maybe I’ll ask for a phone pic.  That’s taking up two mornings per week for a month.  Then the weather will be warmer and my foot will feel well enough for walking, maybe hiking.

Got the dehydrator for Christmas, a little bigger than the one we lost to the fire, still sits nicely on the counter. So nowadays instead of pickle-making, it’s jerky, venison jerky, and applesauce leather, and best of all? Dried apple peel for naughty Dottie and sweet Matilda.  Who knew goats prefer their apple dried?  Won’t touch a fresh apple, but they go crazy for their apple snacks.  Now Dan has to eat applesauce, apple leather, apple crisp…  You get the picture.  And, Matilda now stomps her foot on her bowl when there’s no apple.  Can’t say “poor Dan” though, he gave me the dehydrator.  Just lucky for him that the grandchildren like jerky.

A few years ago I took a dehydrator to my preschool classroom to dry starfruit.  Shortly after we filled it, one of the students lined all the chairs up facing the dehydrator.  Her plan was to watch it.  Huh.  I must have missed a step in my explanation.  I learned from that day that I would need something to do while the dehydrator was humming along.  I have found a great new hobby.  Combines many things I love and I can do it whenever I want while sitting with my feet up and my dachshunds by my side.  Online classes that are either free or cheap!  There’s all kinds of photography ones, and I’ve always wanted to learn more about my camera and lenses.  Other topics of interest such as drawing and writing are available too.  Why, I might even brush-up (relearn) on French or learn a new language.  All while the dehydrator is humming.

Winter has been wonderful for me.  Dan’s been home most days, working on lobster gear in his basement shop. Our first winter of being home together most of the time.  Really nice.  Soon he’ll be back on the water more, and before we know it, it will be time to move to our Salt Pond camp.

Headed to Dana Farber for my brain MRI, CT scans of chest and abdomen, blood draw, EKG, and doctor appointment on March 1.  It’s been nine weeks, the longest between scans since diagnosis.  If all goes well, appointments will stay at nine weeks.  Thinking positively. I’m grateful for research, genomic testing, and targeted therapy drugs in clinical trials.

That’s me.  Finding joy in the everyday every day here in our winter home on the mountainside with Dan, the three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

HAPPY cancer-VERSARY to ME!

Two years of LIVING life to the fullest, enveloped and supported by those who love me.  Cause for celebration for anyone, anytime! For sure for me when you flip the pages of my story back two years.

What date to choose for the start of this journey?  Hmmm… When I first felt ill, or maybe when I developed that cough, cough?  Nope, not then…I didn’t know then.  Okay, so maybe the Sunday I had the life-saving X-ray, or  the Tuesday I got the call (while at lunch with my granddaughter) that I needed a CT scan because of “something” the radiologist saw on that X-ray.  Could be then, but nope.  Must be pneumonia or something. Ah ha!  Got it!  Not just the date, but the exact moment.

The day this journey began was Thursday, January 7, 2016.  Dan and I were sitting in an exam room, and my PCP knocked and entered slowly, too slowly.  It was a surreal moment.  The expression on her face showed everything I didn’t want to know.  It was kind of like in the movies whenever the doctor says there’s no hope, only sadder, and real; too sad, too real.  Her sad voice broke as she explained that I had a mass in my left lung hilum.  I asked if it could be anything other than cancer, even before she said it was.  She slowly shook her head,  and not wanting to give me false hope said, “No, not really.  There really isn’t anything else it could be.”  And then, after processing the news for just a few seconds, we went on to lay out a plan to first get a diagnosis.  That’s it.  Yup.  That’s the day.  Thursday, January 7, 2016, approximately 9:50 AM.

And thanks to medical researchers, research doctors, the incredible staff at Dana-Farber Cancer Institute (go there the second there is a cancer diagnosis), the prayers, well wishes, and positive thinking of many, and the support of those who love me, HERE I am!! Not just alive, but living!!

Loving LIFE with Dan, our family, the three little dachshunds, and Dottie and Matilda, the Nigerian Dwarf Goats.  Finding (and spreading I hope) JOY in the everyday, every day.  Content. Happy.  Satisfied.  A meaningful life, filled with HOPE.

Climb Every Mountain

Warning: long post, somewhat rambling!

Time flies! There’s never enough time… Where did the time go?  Or, maybe, just maybe, there really is no such thing as time.  That’s what physicist Julian Barbour thinks.  Instead of time as a measure of change, Barbour sees each individual moment as a whole, complete and existing in its own right. He calls these moments “Nows.” And our lives are a succession of Nows.  There is only now.  Huh.  Go figure.  Now I begin to understand a conversation I had over ice cream a few months ago.  This post is about a succession of Nows over the past what I thought was time period called a decade.

When I turned 50 I announced that maybe, just maybe I had reached middle-age.  My plan was to surpass 100 and I felt that was a reasonable goal.  My true goal, which has not changed, is to stay young forever, however long that may be for me.  The decade since that announcement has been filled with highs and lows, as I suspect everyone’s life probably is between 50 and 60.  Both of our mothers died, a year apart, expected someday maybe, but still ever so painful when it comes, and so sad, still.  Something countless others can relate to.  We had two beautiful grand-babies born between those deaths, totaling five. Our heart hero grandson had surgeries and grew stronger, and “time” went on.  Suddenly, it seemed, all the grandchildren were in school, and our oldest grand-daughter entered high school. She’s now a nursing student, 3rd year – wow!

During most of those years, I worked, learned, and played with the most wonderful people.  My relationships with some are still strong and wonderful today.  Somewhere in those years, I was privileged to be invited to work with some extraordinary teachers to develop and implement learning adventures for students that were like no others; traveling to Alaska to volunteer at a remote Iditarod checkpoint, and a ranger-led backpacking expedition to the bottom of the Grand Canyon.  Both times students worked to raise funds, and studied and trained for the adventure.  Amazing can’t begin to describe this opportunity.

Dan and I went on some very exciting hunting trips in Saskatchewan.  There is nothing like 10 hours of sitting in a tree stand surrounded by Saskatchewan nature.  From the tiniest snowflake to the majestic whitetail bucks, I captured it all with my Canon and in my mind – the wildlife, the snow, the sunlight through the trees, the quiet like nothing at home.  And yes, one buck per hunt, most years, with my Browning lever action 7 mm-08 to take home to the freezer.  The best times were when Dan and I sat together in a stand, sometimes during a snowstorm, spending hours waiting for just the right snowflake to fall on our hat to “shoot”!  And, reviewing those pics over tea in the cabin that night.

We renovated our Salt Pond camp near the start of this decade. Camp Gramma evolved, I’m not sure how long we’ve done it. I’ve mentioned it before, and it deserves a post of its own, with pics.  Every Gramma should have the opportunity to spend her summers playing in the outdoors with her grandchildren.  Talk about joy!

I left the job I loved rather than compromise my integrity and go along with things I believed were wrong in 2013.  But every cloud does have a silver lining if you look or pursue it, and my job transition to my “beginnings” as an educator in early childhood allowed me to pursue a passion – nature and nature-based education.  A course taught by The Maine Master Naturalists opened my eyes and minds to the world around me in ways I never imagined.  This passion feeds me now, bringing me joy and comfort, and always an interest to pursue.

Dan and I found hiking during these years.  Our goal became to climb every mountain we found, or maybe that was Dan’s goal!  I like hiking.  Hike we did! At 55 I was the most fit I’d been in my life.  We climbed Katahdin, Mt. Washington, Cadillac, Big Spencer, and Blue Hill Mountain (over and over and …)  Climb every mountain you can while you can!  The view is always unique.  We went on crazy adventures to Tanzania to climb Kilimanjaro and go on a photo safari, and back country backpacking down and up the Grand Canyon with my sister and her husband.  At almost 58, I was the baby on that trip!

Then came what was to be a very strange year – 2015.  It certainly had its highs, beginning with that trip to the Grand Canyon in April, four big kids on a once in a lifetime adventure.  Another high was the naturalist course that I use the learning from every day as I find joy in the everyday.  And Camp Gramma that summer was sensational!  But a strange “series of unfortunate events” took place that year, big events for us, life-changers really.  First our oldest dachshund died.  He had truly been Dan’s faithful companion.  Shortly after losing Rocky, Dan nearly lost his boat and his life when his lobster boat filled with water and he raced “time” to run it aground before it sank.  Scary, something that stays with you, life-changing REALLY.  And then, 3 months later, August 17, 2015, we had a house fire.  No one was home.  From the outside our home looked as if nothing had been harmed.  In reality, the house would be gutted and rebuilt inside, and we would lose all of the contents, forty years of our life’s “stuff”.  Life-changing REALLY.  And then, while working to inventory all of our things, oversee the work at the house, and teach, I got sick – cancer crept in while I was otherwise occupied…  Weird year, that 2015.  Life-changing REALLY.  Some silver linings?  Always.  We winterized camp and lived in the most beautiful natural setting.  We adopted Ruby Jean the dachshund.  We deepened relationships with those close to us who understood that support is needed even if not asked for when life-changing is your NOW.

2016 was the year we learned about lung cancer.  And brought Dottie and Matilda, the Nigerian dwarf goats, into our lives.  It was the year I think that our 44 year relationship deepened and we reconnected with renewed and strengthened love as we stopped reeling from our life-changing events, all the while beginning to deal with cancer.  We’d gotten mighty comfortable in our roles over the years, if not taking each other for granted, then maybe taking life for granted, and then, we couldn’t anymore.  Life changed.  When cancer creeps in, so can fear.  But Dan,  my best friend, my true love, my partner in life since I was 15, has faced these new challenges with such courage and strength. Together, like we’ve done since we were teens, we’ll face this one together too.

2017 was the year we learned to live with lung cancer.  We’ve had a marvelous year, especially since I was able to stop working in May. (A silver lining?)   We gardened, enjoyed our annual trip to Spencer Pond Camps with all our children and grandchildren, played at Camp Gramma, loved our 3 little dachshunds and the “girls” Dottie and Matilda.    While Dan works, I do what I feel like doing!  And that’s okay with him.  I volunteer in my dear friend Kathy’s classroom, go on outings with my free-ranging sister and a friend, play cribbage with my son, go on walks with my daughter, read, or whatever I may feel up to doing.  This time of year there’s alway a basketball game to go to with four grands playing and Dan coaching.  Finding joy in the everyday every day.

And don’t forget!  Climb every mountain you can while you can.  The climb and the view are always unique.

Welcome 2018!  (If you even exist since you are a measure of “time”!)

cancer Stinks!

There are words I intensely dislike, and so I don’t use them.  But, that’s not what’s happening here in this title.  What I really mean to say is that cancer stinks, yup it smells really bad. When I was the most ill, everything that came out of me (in any way) smelled REALLY awful.  My breath, my sweat, my flatulence, … everything.  Not that body odors are usually sweet smelling, but I’ve never been a particularly stinky person.  (Well, the me before cancer I mean.)

This all came rushing back to me this weekend when I was ill.  I’m much better now, but I had some virus going around with everything from body aches to diarrhea.  And back came the stink full force!  I know it wasn’t my imagination, it was the same odor, the cancer stink.  Now I’m not saying my illness this weekend was cancer related, but it smelled the same.  Probably no research on this and now that I’m better I smell better!

One cancer stink doesn’t really go away – the flatulence one.  I know everyone’s toots stink, but cancer toots top ’em all.  Don’t believe me?  You could ask Dan or my grandkids, but they might be too polite or kindhearted to answer (even though we joke about it). Just ask my dogs.  Especially the two that sleep under the covers, against me.  You get the picture.  My dogs are very forgiving.  cancer stinks.

When I was first diagnosed I remember apologizing to Dr. Gandhi for my exceptionally stinky sweat.  She was the one who confirmed for me that it was cancer stink.  On that day I was too busy trying to stay alive to spend more time on the topic with her, but I wish I could.  (She has since left Dana Farber.)

I know I’ve read that dogs have smelled their owner’s cancer before diagnosis.  I’m quite sure my dog Rusty diagnosed me way before anyone else – he knew how sick I was before we realized it – maybe it was the cancer stink.  He was very attentive this weekend, so maybe he smelled the cancer stink too.

All I know for sure on this one is that cancer STINKS!

 

 

Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

Below is a short video of my oncologist with Bonnie Addario, both heroes.  He is the head of Thoracic Cancer at Dana-Farber Cancer Institute.  She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation.  “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ”  The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)

Dr. Janne and Bonnie Addario

Whose lung cancer is this anyway?

While it is my body that is site of this chronic disease disaster, it impacts so many more in so many ways.  Even I don’t talk about it as “me”, but in a recent interview kept referring to “we”, meaning Dan and me, the “we” we’ve been since I was 16.  My body is going through the physical process and getting roughed up pretty badly by the cancer and the treatment, but the physical and emotional impact is on “us” and reaches all of our family (children, grandchildren, siblings, close friends) as well. For example,  “we” go to Boston (now every three weeks) for two days and everyone else needs to care for our dogs (3) and our goats (2), and sometimes our boats (true!). So, for us, this is “our” disease.

Throughout the early months of 2016 we were deep in learning about metastatic lung cancer.  You might think I would know about it since it is what took the lives of my father and his father.  But that was then and this is now, and now is such a better time to find yourself with this diagnosis.  We knew one thing – even though we’d never been there, for us, Dana Farber Cancer Institute is where we wanted to be treated.  So, for our family this means going to a treatment center five hours away.

On our first trip to Boston (which started at BWH due to not yet being officially diagnosed) “we” meant Dan, my sister Nada, me, and my body.  (I think I might have made hotel arrangements, but maybe Nada did – see? “We”)  After short appointment at BWH, we were referred to a next day appointment at Dana Farber. “Good, they’ll see us! Oh, now we’re staying, and what does that mean?”  Well, really it meant for me, that all the others who make up our “we” jumped into action – they already had – and just magically (to and for me) made things happen.  Mandy and children took care of two dogs, Tim and family had the other.  Thankfully, that winter was Pre-goats.  Nada took care of arrangements in Boston,  and Dan took care of me.  Me?  My head was in the game, my body was definitely not, and “we” were just trying to get me to the point/place where we could find some help and hope. Thankfully, both came quickly at Dana Farber.

I don’t know when I truly realized that our life could never be like it was before cancer.    Despite our advancing ages (ha!), WE had plans, physically active plans, and goals requiring that we be able to do things that it is unlikely my body will be able to do.  So because of our disaster that’s happening in my body, WE have adjusted those plans, set new goals.  Some of those goals have to do with treatment of course, but many are modified goals from the past.  We are ever so grateful for the things we did do together while our bodies were both healthy and strong.  Will we do backcountry backpacking in Grand Canyon again and take the grandchildren as hoped?  Nope, but my body is well enough that we could do a family trip to Grand Canyon (or anywhere we choose) and some can hike while others sightsee.

Both years since cancer became part of our family’s plans we’ve taken our family trip to Spencer Pond Camps. And for the kids I think this second year seemed pretty much like the years before cancer.  For Dan and me it is different, with more careful planning to assure that I can get the rest I need, that others do things I took care of in the past.  But, “we” are determined to do what we can while we can.

Another big way this lung cancer has changed our life is financially.  Thankfully I had very good insurance as a paid benefit through work.  But now I’m unable to work and on what in my world of  state/teacher employment is called retirement disability, and paying for that really good insurance with the very high premium while earning significantly less.  We know we will easily meet the deductible early in every year. Every time I have scans it is several thousand dollars. Our deductible and co-insurance are higher because of our choice to self-refer and go “out of network” to Dana Farber. (For us “in network” is Maine, but at least our plan will cover out of network.)    Travel, lodging, and meal expenses all add up.  Dan takes days from work as well.   We share the burden of this lung cancer in so many ways.

I am ever so grateful I have a “we” to share this burden.  I’ve met other patients who have no family close to them, who rely on friends, neighbors, or are alone.  I don’t have any understanding of what that is like.  Having this support system is what keeps me going.  I’m not going to let “us” down.  Because I know how hard everyone is working to help me,  I am determined to do everything I can both with my health and in being the best person I can be.  While I am sad, as are we all, that “we” are on this lung cancer journey, I find joy and happiness all around me everyday, and I share/spread this with the rest of “we”.  Please remember, it is essential to “give some love” to everyone on the journey, not just the patient.