When IS the cure worse than the illness?

It’s a real question to consider – when IS the cure worse than the illness?  Medically or scientifically, it is all about the net result.  If the net result from the treatment is worse than the illness (or potentially so), then the cure is worse than the illness.  But how do you measure things like quality of life or the long term (years into the future) effects of treatment when you’re just trying to breathe or when you have goals that require staying on earth until the time specific goal is achieved?  Most of us would take our chances I bet.

Over the past month three people I know through life, not because cancer, have died either from lung cancer or perhaps from the long term toll that lung cancer treatment takes on the body.  Their lung cancer journeys were all different.  None were elderly. All lived life to fullest until that was simply no longer possible.  My thoughts of healing and strength and prayers are with their families.

So how do we know what to do when faced with unknown options?  No one can say for sure what the longterm effect of some of these treatments will be.  That’s one reason we have clinical trials,  and research studies over many years.  Well, for me personally in my situation the answer is easy.  Unless the quality of life with treatment makes it impossible to find joy in the everyday on most days, then I choose life here for a while longer.  And that means treatment.  We had a little glimpse of what life without treatment was like.  We know I wouldn’t have been able to sustain that for long.

We know too that this treatment  comes with a price, not just a monetary one. I think it is impossible to avoid it changing many lives forever.   I say “we” often because this journey is our journey, mine and Dan’s, along with our family.  I don’t want to make decisions alone as they are not just for me.  That’s not how we do life.  And seriously, I wouldn’t last long on my own.  It is wanting to be part of “we” that keeps me going.  But the price is high, for everyone.  Maybe it’s just what families do, but I sure wish it wasn’t something they have to do, and I think it shouldn’t have to be.

Last fall I met a woman who chose treatment for a cancer many years ago.  It was successful – she’s here, decades later!  She described to me the longterm effects on her body.  It was impressive, not in a good way.  She has had multiple medical procedures and has some serious health issues related to that treatment long ago.  But she also described many of the things she has accomplished in the time “given” to her by treatment.  A trade-off, I guess.

We all have to choose our own paths.  My heart goes out to the loved ones of lung cancer patients.  Whether it is a stage IV diagnosis caught too late, or an early diagnosis that can be cured, the journey is tough.  I know.  We traveled it with my grandfather and my father.  Whether it is months of caregiving or years, the primary focus is on the patient while often caregivers are working, filling the household role of the patient, and doing the caregiving.  There is not an appropriate framework of support for them, and with the focus on the patient, caregivers often don’t advocate for themselves.

Maybe someday not so far off treatment will be available for lung cancer to be considered a chronic, manageable disease instead of the deadly one it is now.  Not a cure, but safe treatment for a managed disease.

There are things we can all do(regardless of treatment choice):

Reach out to some of those caregivers. (I can think of many times with other friends or family members when I wish now I’d done more, hadn’t thought I was too busy or someone else was doing it or it wasn’t needed.  I can do better going forward.) Just knowing you are thinking about the caregiver helps.  Maybe see if you can drop off a meal, offer to hang out with the patient so they have time for themselves, offer to do some “chores”.  Just the offer may really help.

Support increased lung cancer research by contacting your representatives.  We can change this for future generations.  There are exciting things happening in the fields of targeted therapy and immunotherapy.  If you want to help with a donation, please consider supporting ROS1 cancer research  https://www.lungcancerfoundation.org/patients/ros1/contribute-ros1/

HOPE, always have hope.

As you can see below, we are at our Salt Pond camp, enjoying the everyday every day.   And yes, even Dottie and Matilda, our two Nigerian dwarf goats, are here and loving the oak leaves.  We had a wonderful family weekend at Spencer Pond Camps.  I’m looking forward to the start of “Camp Gramma” next week, when I’ll get eased back into the fun with 2 of the four “campers”.  I’m working hard at staying healthy in every way I can, mind and body, and reading everything from Winnie the Pooh to Radical Remission (both inspirational!).   I plan to enjoy every minute of the grandchildren’s fun.  A busy summer ahead with many more opportunities for making memories.

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Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime.   I wrote a letter to the editor earlier this year.  I wrote again and it was published this time.  There’s a limit to the number of words, so I didn’t include everything I wish I could have.  Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement.  Testing your home is easy and cheap.  Abatement is done professionally and may be easy and inexpensive or it may be $5000.  Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

Neither here nor there

Neither here nor there, but where?  Not complaining, just explaining! This struck me when I saw two photos recently.  One from when I was very ill, but starting to improve after two months on crizotinib (targeted therapy drug for ROS1+ lung cancer).  The second, looking quite healthy, taken recently in the beautifully painted walkway, the Bridge of Hope that connects Dana-Farber with Brigham and Women’s.

It’s weird – this state of limbo (not the “place “Limbo!) that we Stage IV lung cancer patients live in.  It’s just so different from my mindset or life in general before cancer.  You see, lucky stage IV cancer patients are informed their disease cannot be cured, but can be treated, thus prolonging their life. (Some may just be told that it’s time to get their affairs in order.)  In my case when I initially asked if I could take my first targeted therapy drug crizotinib forever, my oncologist thought I meant that I thought I would now go on to live a normal life and die of old age at 100 as planned. So she felt obligated to say no and went on to say that some patients had extended their lives by more than a year on this drug.  (I know someone that just celebrated six years on crizotinib!)  Also in my case though, and I’d guess most, just to know you might be given the time you need to think about all the things you should have already done to prepare for the inevitable gives you hope.  Hope = Time, but does Time = Hope?  Probably. I’ll think about that.

But as I said, “It’s weird.”  I mean, really.  People thought I was a goner for sure two years and four months ago. I looked like I was and everyone knows the stats are dismal for Stage IV lung cancer.  And here I am now looking quite healthy.  I wonder what people think – cured? Nope, I wish.  Do you do like the song says and “live like you were dying”?  What’s that look like anyway?  I wouldn’t want to live the way I was during the few months we thought I was dying.  Now if it means do all the things on your life list – well, now that would be great if one is physically able to.  What’d we do?  Got two Nigerian Dwarf goats (complete with a barn at home and at camp), modified Camp Gramma by having a mom there to help Gramma, and tried to get back to a normal life.  Eventually I stopped teaching to focus on my health.  Not on my life list, not even the goats.  Alpacas were though.  I’m so glad we got our goats!  They are just wonderful, fun, loving, and very entertaining.  Alpacas are much more work.

Another weird thing – clothes.  I was just starting to replace things from the fire when I got sick.  Now I don’t want to invest a lot in things I either won’t be able to use or won’t get good use of.  Silly?  Maybe.  (For example instead of replacing my Marmot down jacket I bought a White Sierra one that will keep me warm for the short time I’m out in the cold.)  And then there’s the fact that since radiation I can’t stand certain clothes.  Or that when my tummy bloats I just want my comfy pants.  I’ve solved pretty much all of it by buying a few of a few things that are comfortable and presentable enough, and have no metal so I can wear them around and even to appointments and leave them on for scans.  Footwear is a challenge.  Still working on that.  Weird, right?  Being challenged by knowing what to buy for footwear when you’ve been wearing the same size shoe for 50 years? Whether it is meds or cancer, my feet are not what they were, and that’s weird.

Yup, weird.  Like being stuck.  Feeling ready to get back to really living, but not feeling quite well enough to.  Just when you think you know what this life can look like, something changes. I know that happens from time to time for everyone, but it is a way of life for Stage IV lung cancer patients.  And all the while life goes on normally around you as it should be and as you want for it to.

There are more examples, but you get the point. Neither here in the present fully, nor there in my past where I lived fully for 58 years.  Not really knowing how to think about the future (except to be hopeful), living for the present, but differently.  Yet I am grateful to be here, to have hope, to be able to enjoy the everyday every day.  I’ve had so many firsts since my diagnosis  – I think I’m more aware of them now. A recent first is watching a family of fox kits.  But I’ve had many others.  Things that being given the gift of time, the gift of being able to be home, and the gift of being “well enough” have made possible.   Some people, many really, with this disease are not so lucky as to be able to ponder its weirdness or to be given this gift of time.  And yes, TIME=HOPE.  Always, always have hope.

Oh, yes!  I have checked something off my life list that I bet I never would have if cancer hadn’t shifted my focus.  I’m in the midst of publishing a children’s book that I wrote in 1991.   Very fun to think about.  Written in my past life, being illustrated (not by me – ha!) in the present, it will be ready in the future!

Here I am enjoying the everyday every day with Dan and the family, and feeling ever so hopeful about the future.

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”!)