Nice to be Loved!

IMG_2869 2

On November 5, 2017 in the very early morning my sister Nada was one of several family members and friends to make a two hour drive to participate in the annual Save Your Breath 5K Save Your Breath 5K FaceBook, a run to support Free ME from Lung Cancer.  It was her birthday.

A few weeks earlier Nada and her daughter Betsy had decided to get together a team in my honor.  Pretty nice!  The team was named for this blog, Team polepole.  And then, t-shirts were made for all eleven team members.  Not just any t-shirts, but hand tie-dyed t-shirts with polepolebreathe.blog ironed on each by Nada. Even nicer!

So on that brisk Sunday morning some of us ran and some walked a shorter distance.  While we were raising funds for Free ME from Lung Cancer, we were also showing support for the lung cancer community; those living with lung cancer, survivors of lung cancer, and also honoring lives lost.  It felt special, much like our family participating in the Komen run in my mom’s memory.  Only different.  Different for a few reasons.  First, our team was participating in my honor.  Wow. Second, while there were quite a few runners, there simply is not the same kind of societal support for the lung cancer community.  Humbling. Next year I’ll ask that we run/walk in memory of my dad too. We can now see beyond the stigma and understand.   It’s important that we try to teach others.  Too many are dying (433 Americans per day) because of that stigma.  Another reason that day was special?  My sister’s birthday of course!  I felt honored she chose to spend it in this way.  And honored that so many others did so too.

After the race Team polepole had breakfast together.  The busy restaurant was perfect for our noisy group.  The birthday girl polished off a large platter of strawberry crepes.  We’re in the business of making memories these days, and I’ve great memories of that day from seeing Team polepole and cheering on the runners to the breakfast chatting.

A final note – At the SaveYour Breath 5K I met Dave Eid, sportscaster at WGME in Maine. Dave’s wife Lisa is a fellow ROS1der, and Dave is on the Free ME from Lung Cancer Board.   Just after my grandson finished the race (beating his mom!), Dave had arranged for us to be interviewed: News interview

 

 

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.

 

Advocacy and some ways YOU can help!

There are some great minds and dedicated people advocating on behalf of lung cancer patients. We need them and I’m thankful for the work they do.  Many times they’ve been directly impacted by the disease, like these senators have:  Bipartisan legislation introduced to study lung cancer in women

You can help by calling, emailing, or writing  your Senators and Representatives.

Truth is, until recently there were very few lung cancer patients able to advocate for themselves as most were simply fighting for their life physically and in the moment, with no ability to fight in other ways. (433 Americans die daily from LUNG cancer.) With such dismal survival rates, few saw a future past that initial shock stage, and had no opportunity to reach a point where they even could consider advocacy.  But thankfully there are those survivors such as Bonnie Addario and Debbie Violette who not only survived and thrived, but took on the challenge of advocacy. I’m grateful to Bonnie (Bonnie Addario Lung Cancer Foundation), Debbie Violette (Free ME from lung cancer ), other survivor advocates, family member advocates, and others who take up this challenge on our behalf. ROS1cancer research is being conducted through the Bonnie Addario Lung Cancer Foundation

You can help by learning about lung cancer and sharing your knowledge with others.  Knowledge is power. Education is key.

And then, the elephant in the room.  Why, if so many more die of lung cancer than other cancers, is the funding so low?  It’s a sad, but easy answer.   There is the huge stigma associated with lung cancer – the thought that it is a smoker’s disease and we can simply eliminate it by not smoking.  Heart disease is also often caused by smoking – do we blame those with COPD for their condition and deny them research funding dollars?  Do we not help others with disease caused by addiction? And, come on folks, we all know that ALL YOU NEED TO GET LUNG cANCER would be… drum roll please… LUNGS, JUST LUNGS. We all have them, and even if you think you take care of them, you can get lung cancer.  I know.  And, we’re learning that more and more nonsmoking women are learning this the hard way – with a Stage IV lung cancer diagnosis.  So many are not lucky like me, and there is no targeted therapy drug for them that keeps the beast at bay while the next drug is being developed.  No cure  in sight, but great hope for lung cancer being a managed chronic disease in the not so distant future.

You can help by ending the stigma.  If you learn someone has lung cancer, DO NOT ask if he/she smoked please.  They have LUNG cancer.  Why should it matter to you if they smoked?  They have LUNG cancer.  Would you ask someone with breast cancer what they did to cause it?  Of course not.  A little compassion goes a long ways, please.  And chances are, sadly, if they are a nonsmoker they’ll be quick to tell you so, either because they’re still surprised or because of the stigma.  I know I did.  It’s really so weird when here you are dying and you think you have to defend yourself in some way.  Now, after two years, I can either say nothing, note that all you need (LUNGS), or share that radon is the second leading cause of lung cancer.

Advocacy: public support for a particular cause.  So please – no more stigma.  When you share that someone you know has LUNG cancer, please don’t feel embarrassed for them.  Speak up for them.  Explain that 433 Americans die every day of lung cancer.  Explain that funding is needed.  Wear LUNG cancer awareness apparel and jewelry just as you would to show support for those with any other cancer.

If you’re in the Washington D.C. area on April 26 there is a rally to promote awareness.  The hope is to have 433 people in attendance.  Life and Breath Rally info

My lung cancer advocacy work: serving on a stakeholders advisory board to Maine Lung Cancer Coalition (MLCC) as they work on education, prevention, and screening; writing to my representatives; and I’m soon to have a final interview to be a Phone Buddy for Lung Cancer Alliance (LCA Phone Buddy Program).

Finding joy in the everyday EVERY day with Dan, the family, the three little dachshunds, and of course Dottie and Matilda, our Nigerian Dwarf goats.  That’s me!

 

Sharing the Journey

I can’t imagine traveling this cancer road alone.  No one should ever, ever have to.  I’m so very grateful that I’ll never have to.  In fact, my family has grown through this journey.  This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I’ve never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+.  This family has nearly tripled since I found it, and is worldwide.

The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone’s specific information, but  I can share what makes them my “family”.   Most, but not all, have lung cancer. Most, not all, have metastasized cancer.  Most, not all, have been on the drug  Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey.  Many, maybe most, are younger than me, many with children at home.  Many have had treatments that I’ve not had.  Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders.  All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member.   Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing.  Beyond that even, there’s just such a feeling of empathy and sincere caring about one another’s well being in the group.  In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.

I’ve tried to think what it is that makes this family so very special compared to other organizations I’ve been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH.  The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family.  Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern.  It is a safe place.  This is a difficult road to travel.  Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered.   Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.

My ROS1der family, a FaceBook group. Who knew I’d find such camaraderie in such a place.  Huh.  Another of the countless blessings that have come my way on this journey.  May every human needing such a place, find theirs.

Finding joy in the everyday, every day.IMG_3189.jpg

 

 

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”!)

Thursday, December 28, 2017 Update

Great news, again!  Right up there with some of the best news I’ve had since beginning this journey.  Writing this in our hotel room, a block from the most wonderful cancer institute in the world, Dana-Farber Cancer Institute.  Wonderful: inspiring delight, pleasure, or admiration; extremely good; marvelous.  Yes, wonderful! Regardless of the news I might receive from them, they certainly have inspired admiration from me, data shows their work is extremely good, and the people we’ve met there are delightful and quite marvelous in their treatment of patients and caregivers.

Back to my news!  Stable from the neck down, AND (drum roll please) an 84% reduction of the nasty beast in my brain meninges since beginning my second wonder drug Lorlatinib in July.

Today was another long day for us.  We stayed in Portland last night to make sure we would arrive at Dana-Farber for a 10:30 AM start.  At 10:30 PM the fire alarm went off in the hall of the motel last night.  Some kid had burned his popcorn in a microwave.  We didn’t have to go outside luckily. Today began with “free” breakfast at 6:00 AM, followed by a very quick 2.5 hour drive to Boston.  No morning traffic – unlike any other day we’ve gone.  Vacation I guess. We even parked on P4 instead of P6 of the underground parking garage!

My appointments were all the “usual”:  IV in, blood draw, CT scans of chest and abdomen on L1 in the Dana Building, brain MRI and IV out on Dana 3 , grab some lunch (Yawkey 3), check vitals, EKG, Dr. appointment (Yawkey 10), and wait for medication (Yawkey 2). Done at 4:00 PM. Nothing to it!

Here’s more great news – I am scheduled to return to Dana-Farber on March 1, 2018.  Nine weeks!!  Yes, nine.  That is the longest between appointments in the 23 months I’ve been a patient at Dana-Farber.  Wow! Now, will I be nervous about that? I don’t think so.  I know my body, and the difference between symptoms and side effects pretty well now.  And, my clinical trial nurse and oncologist are just a phone call or 5 hour drive away!

Hey, I forgot something very important in my post about Procedures and Tests !  When they put the contrast dye in your IV during scans, you get the warm feeling and would think that you wet yourself if not forewarned.  Thought about that one today when…

For me, 2017 has been the year I began to learn to LIVE with metastatic lung cancer, helping to create new statistics, and bring hope to those diagnosed with this disease that still currently kills 433 Americans every day. We can, are, and will continue to do so much better. There is great hope for the newly diagnosed.

Happy New Year to all our family and friends, new and  not so new!  Your positive thoughts, love, and prayers continue to help give me the strength needed for this journey.  Please test your home for radon this year if you’ve not yet done so.

Looking forward to us going home to the dachshunds and goats, comfy and cozy for the winter, feeling grateful, and finding joy in the everyday every day!