Big Night, Big Week

Big Night is an amphibian phenomenon.  It’s fascinating, and I’m very glad I learned about it, and about how humans feel a responsibility to help.  On the first rainy night in April salamanders and some frogs migrate from their winter home to their breeding pools.  Often this means crossing a road, so that’s where people come in.  They help move the salamanders and frogs across the road.  Yes, on a rainy April night, way past dark, people go out to help on Big Night.

So I got to thinking about it.  I understand that they need to stay wet, so rain is needed.  I understand that they avoid sun for the long journey, so travel at night.  But why do they cross the road?  Why not find a vernal pool on their side of the road?  I mean really.  I saw the poor little guys crawling over that winter “salt sand” to even reach the road.  Why?  Simple.  They are returning to their ancestral breeding pool, not just any vernal pool.  And so that adds to why it is so wonderful that people help them.  It is our responsibility since we put the road in their way. Here’s one naturalist’s explanation (and an interesting  blog to follow).  Mary Holland’s “Big Night” explanation

I first went out on Big Night last year.  We (my sister, niece, and a friend, new to big night!) went out on a night that wasn’t so big this year.  I couldn’t go out a couple nights later on what turned out to be Big Night because I’d had a Big Week.  Either my targeted therapy drug or cancer cause me to have less energy and stamina.  But that’s okay.  It’s because of crizotinib and now lorlatinib (and so much that’s not medical) that I can think about going next year.  And, the other really wonderful thing about me learning about Big Night is that I shared it with others who love it now too.  On Big Night my phone chimed on the bedside and sure enough, there was a pic of my granddaughter holding a salamander.  The whole family was out in the rain with friends, way past bedtime, to save lives.  What a great learning adventure for the children (and their parents)!

Big Night came in a big week for me.  The night before the “night I went out searching” was certainly a big night for me.  I went to see the Wizard of Oz!  Yup.  Somewhere Over the Rainbow for me.  And not just me!  I got to enjoy the show with four of my grandchildren (the campers) and my son, daughter-in-law, and daughter.  We all rode together and went to dinner before.  Everything, even (or maybe especially) the car ride was so great.  What a treat the evening was!   There’s so much I could say about how much that evening meant to me in any life.  Yet, I can’t even think how to describe exactly what it means to me in this second life I’m in.  Just so precious and special.

To top off my big week, my sister, a friend, and I went to Bar Harbor  yesterday and walked the trail in the village that goes along the ocean , stopping of course for lunch, but too filled for Pugnuts ice cream on the way home.  I tried out my new sneakers from Ortho Feet.  Pretty good!  Roomy, well cushioned, comfortable.  Not too stylish, but luckily that’s not what I was looking for.  I was looking for something that would help with the neuropathy discomfort when walking.

Dan and our son have been working on traps in the field by the house, readying them for lobstering “season”.  How nice it is to be here to prepare lunch for them.  I’m grateful that I don’t have to struggle to try to keep working like I was last year at this time.  I’ve loved my winter at home as much as I loved my fall at our camp.  Today I made a sauce with tomatoes I froze (whole by the way) from our summer garden.  Soon we’ll be planting again.

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Enjoying the everyday every day. Me. Now.

Season of Hope

If I had a favorite season, it would be spring.  There are things I truly love about each season.   Spring just has so much to love.  Even with the ground and everything else covered with FEET of snow, I felt spring yesterday. The vernal equinox was 12:15 PM.  I was at a meeting of a Maine Lung Cancer Coalition advisory group when spring began, but two hours later as we stepped outside into the sunshine, even surrounded by parking lot snowbanks, I felt spring and breathed a big sigh of relief. Phew, I made it, made it to spring.  I bet lots of animals have that thought, perhaps not at the moment , but later, when the snows melt and the trees leave.

Sigh of relief?  Made it? You see, many years ago my grandmother pointed out that more people die in winter and she said if she made it to spring, she’d go a while longer.  She nearly made it to 100.  This was my third big sigh of spring relief.  The first in 2016 I was just 18 days into my first targeted therapy treatment and knew from how I felt that it was working.  Huge sigh of relief.  I would conquer the beast inside my body certainly long enough to enjoy another spring. Today I’m feeling pretty darn good, in great shape for the shape I’m in. The beast is once again contained by the targeted therapy drug Lorlatinb.

I love all the things in nature in spring like most people do who are lucky enough to notice, from the smell of the mud to hearing new songs each morning and evening.  There’s so much to see and look forward to.  Everything seems new or renewed, just born or re-born. My babies are spring babies.  For all beings, I think it must be the season of hope, spiritually and physically.

Today memories of “springs past”, sprang into my head.  Ha! True though.  Memories like the leaves in front of me as I crossed the Waldo-Hancock bridge for years daily, first simply appearing and then over weeks changing their shades of green . There’s really nothing else like spring green. Dan’s grandmother’s joy in attending Easter sunrise service and breakfast with her great-grandchildren, so sweet. Then there’s the Easter 55 years ago (give or take a year or two) when we camped out in the woods behind our house. Easter Bunny didn’t know what to think.  I think it really happened, my younger brother wouldn’t remember because I was the baby then. I do remember that. Or the April 42 springs ago, that my “ready to be born” daughter nearly jumped out of my body when the engine of the Patty P II, her grampa’s boat, was started for the first time ever.  A few days after that we went on a rough road to go “alewiving” (alewife the fish) to see if we might jiggle her out.  Spring memories.

In recent years a great memory maker is our now annual family weekend at  Spencer Pond Camps , off the grid  wilderness lakeside cabins in the Moosehead region of Maine.  Dan, me, our children and their spouses, and our five grandchildren fishing, hiking, bike riding, kayaking, moose spotting, toasting marshmallows and playing games in the evening, and even relaxing in the porch swing.  So many memories.  Moving to our Salt Pond camp, now even more exciting with Dottie and Matilda, the Nigerian Dwarf goats, riding along.  The year we lived at camp I saw the return of ducks and other migrating birds.  Closing my eyes, I see spring sunrises from the Salt Pond to Grand Canyon. Spectacular, all. Planting the garden, and patiently (or maybe not) waiting for something, anything to come up.  Dan working on his lobster boat and traps, readying them for another year.  Every spring for about 46 years.  Picnics at the boatyard during April vacation.  Memories.  And new spring traditions. Last year was my first spring Big Night, the first rainy evening in April when  the salamanders cross the roads and people go out and help assure their safe crossing.  Quite the phenomenon!  A fun time and I hope we helped the little guys out.  Started a phenology journal so I can follow the changes from year to year.  So many memories.

Watching the goldfinches acquire their gold today (you can almost see it happening), I think of watching Mr. and Mrs. Merganser the spring we lived at camp.  How beautiful and  how different he looked from Mama Merganser and her babies in summer. Spring memories.  Looking forward to seeing the snowshoe hares in the field soon.  And baseball and softball.  Lots of memories to make.  Looks like a busy spring for this Gramma.

Time to re-hibernate and rest up – there’s more snow on the way.   Reminds me of the April snowstorm in 1975 when I was stranded on a hill in Orland.  Out of the blinding snow appeared the dad of my best childhood friend.  Hadn’t seen him for a decade, and there he was to rescue me.

Here in our winter home on the mountainside, finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our Nigerian dwarf goats.  Dreaming of springs to come.

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It’s the little things

Every day I’m reminded of how fortunate I am to be here.  Reminded in good ways that is.  Today Dan, the three little dachshunds, and I piled into the truck and went to the store to get important storm provisions, eggs and bananas.  Dachshunds love bananas.  When  I came out of the store and climbed back in with the dachshunds and Dan, tossing my three, yes three, bags of groceries on the floor, I suddenly was overwhelmed with wonder and gratitude.  I had just gone into the store, and carried out the groceries while Dan waited in the truck.

Two short, and very long, years ago I was so sick, barely able to go up and down the stairs, spending all my time in bed, not thinking or caring about groceries.  Dan had quietly assumed all the household tasks that I had done or we had done together.  All of them, every one.   I was unable to even notice that he’d done that.  Most of my energy went to breathing. No joke. Just breathing.

So it’s the little things, the things we take for granted, that I’m filled to the brim with gratitude about tonight.  Dan knew just what I meant when I climbed in the truck and was so very, very happy.  He says it happens to him all the time too.  Our life together has always been special, now we understand how much so.

Finding joy in the everyday every day is oh so easy for me now.  Those little things, they’re always there.

Want a meaningful life? Spend time with Children

This post has little to do with living with metastatic lung cancer, and more to do with my thoughts about our world today, thoughts gathered from living a meaningful life filled with children.  It is filled with opinion, mine! I’ve never had a time in my life when it wasn’t filled with children.  Time with children will only enhance one’s life.

Now should be the best time in the history of  our country to be a child.  I think it’s not, far from it.  It’s the scariest time to be a child that I’ve seen in my lifetime.  We can change that.  We must change it.  We must change.  Spending time with children is “free” and will only enhance your life too.  Our children need us, all of us.

There’s unbelievable  stuff happening in our world. It makes my difficulties seem so small.  Has it always been so extreme and we didn’t have the technology to be made aware of it? History tells me yes, and no.  For a child, reading The Diary of Anne Frank or even Night by Elie Wiesel, with a trusted adult to help you process it, is quite different than that child seeing the news, possibly on her/his smart phone, as the reporter video “chats” with two young girls  in Syria, living in the midst of pure horror.  Parents, please pay attention to what your children are seeing and are watching on their own.  When  you choose to watch current events together, please point out the people who are trying to help (when you find them).

We’re on fast forward and I want someone to hit pause.  Then maybe reason could enter the picture before we move on. Yes, I’m talking about the situation we find ourselves in regarding gun violence.  Pause long enough to think reasonably.  Adults in “power”, QUIT the BLAME game! You are supposed to be our leaders.  Do so with courage.  We are in a crisis that requires action, not just reaction.  Move forward.  We need a sensible plan right here right now. Here’s a middle school tool to help called STOP: Stop, Think, Organize, Proceed.  Move forward positively please.  I don’t have answers.  I have thoughts.  We all do. Please protect our children through reasonable means.

We can all pay attention to our children.  Yes, they are OUR children.  Not just the ones you’re related to, but the ones next door, across the street, and as far beyond as you can reach.  If everyone is vigilant about paying attention to what’s happening with the children in your world, then maybe we can better support them.  We can all be children’s advocates.  We have to get involved, be there for OUR children.  Please reach out to the children in your world.  

Gun violence.  We don’t just have a gun violence problem, it’s a violence problem.  Violence has become commonplace.  New gaming systems come with very realistic gory, violent games.  People killing people.  What happened to challenging games with fun characters?  Children are  blasted with images and language of violence and hate.  It’s hard to get away from.   We can do better.  It will take all of us, well, most of us working together to support our children in steering away from this realm of our world.

I am a hunter.  It’s been a part of my life always.  I have wonderful memories of trotting along after my dad while rabbit hunting.  Wild game was a mainstay on the table for most families in  rural Maine 50 years ago.  It still is for some. We eat what we hunt.  It’s my rule.  I’ve spent hours sitting in a tree while deer hunting with a child by my side. I want my grandchildren to experience and understand what is involved in the full experience.  Climbing a tree pre-dawn, seeing and hearing the forest awaken, determining the subtle sound differences of approaching animals, and learning some of the language of the forest are all part of this experience.  So is making sure you have a good shot or not shooting, tracking the animal if necessary, and if you take a life, thanking the animal for that life.  Always be a grateful hunter. I am always sad when I take a life, but I am a meat eater and wild game is healthy and delicious.  All this, even with life taken, is so far removed from the “gun debate” that is happening now.  Many years ago I read a book entitled Know Hunting by Dr. David E. Samuel.  It really helped me think about hunters and anti-hunters.  I recommend it. But this now, this debate, in my mind at least, has nothing to do with hunting.  

Our children are dying.  People want action.  Suggestions are being made.  They need to be considered.   We need more than a bandaid.  I don’t know anyone who needs to or should own an assault rifle. (They are different than semi-automatic rifles.) Their purpose is to kill people. It’s a step.  No, I don’t think it’s a step toward taking “our” guns away.  Increasing the age to purchase a gun?  Can’t hurt, don’t see how it actually changes much. Tightening the background check system can only help I would think, and we should plan ahead for such a purchase. The lack of trust and confidence in our leadership makes it difficult to support these changes, but I think we must.

Arm teachers in every school?  PLEASE DON’T!!  If the government (that currently will not supply schools with what is needed to fulfill their mission) wants to place armed school resource officers in every school, I’m for it.  As sad as it makes me to say it, as teachers we cannot say we are providing a safe place for children to learn.  And, even with the locked doors and safety precautions, we can’t protect them. If there are personnel not directly responsible for groups of children, and the school system deems it in the best interest of children to provide rigorous training to them, then I’m not opposed to qualified staff volunteering for this.  But please don’t expect this of anyone.  No one should ever think that being armed is an expectation of their school position, except a law officer.   If knowing that someone is armed will deter attackers, I’m willing to accept it. 

Really, I just want everyone to think about how to better support the children around them and beyond.  Even if you think you’re doing a great job of this already.  Not just the ones related to you.  Reach out, please.  I know we can change the direction we’re headed in.  Spending time with children will only enhance your life.  Maybe just noticing all children, paying attention to their wellbeing will bring more joy to your life too.  We can all be children’s advocates. We can do this.

Nice to be Loved!

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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!