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.

Be your own Advocate

Today I went to my PCP.  I’ve had a hard lump on the bottom of my foot that appeared as part of dealing with neuropathy.  Dr. PCP seems to think it is unrelated to my neuropathy.  She/he also thinks the nodules on and inflammation of my finger tendons is also unrelated.  Funny coincidence, both are caused by trauma, both involve inflammation, and both happened shortly after the neuropathy began in those appendages.  I know better, but at least today  Dr. PCP confirmed for me that it isn’t something more serious.  It wasn’t worth trying to convince Dr. PCP or to argue the point.  I will share my observations with my clinical trial team.

What was more traumatic was that I was in the room where I first was told I had a mass in my left lung hilum.  Sitting there waiting today was unpleasant, thinking back to January 7, 2016.  I’m not sure Dr. PCP knew what the hilum was that day.  If she/he did know then, she/he couldn’t explain it, having to look it up.  The hilum is the point of entry and exit to the lung.  KenHub explanation of hilum “Functionally, this means that the hilum aids the lung roots by anchoring the lungs to the heart, trachea, and surrounding structures.”  Left hilum, near the heart in addition to having an important job.

But, that was then and I’m here now.  And, I made the choice to stay with the PCP who missed my illness totally, despite my visits, calls, and pleas for help that fall. I am so grateful to the walk-in clinic FNP who had the good sense to do the x-ray that saved my life.  I stayed with Dr. PCP because of convenience.   I would not have stayed for my treatment, choosing to go to Dana-Farber saved my life.  I have hoped that this experience would help inform Dr. PCP about lung cancer symptoms, that she/he might listen more carefully to patients, that she/he would believe the patient when they are clear that what’s going on isn’t a long lasting cold.

But, today for the first time I felt angry.  Not because of the lack of, or misdiagnosis.  That’s every Stage IV diagnosed lung cancer patient’s story.  I forgave him/her that day he/she had to give me the news.  Today really started last week when I called to try to  see Dr. PCP.  I explained why I needed to be seen, and was told that Dr. PCP was booked into July.  Hmm, I thought.  Then I laughed.  It does seem like a funny situation for someone who is already past their statistical expiration.  (I inherited my mom’s sense of humor.) The receptionist must have been confused by my response, but then she did tell me that if I called at 7:30 AM any day I might get in to see my doctor or another.  So, I weighed my options and decided to call this morning.

So after waiting in the room with the unpleasant memory playing over and over for 15 minutes, Dr. PCP came in.  Once we completed the purpose for the visit, Dr. PCP asked how I was doing.  Since I hadn’t been in for quite a while I explained (as succinctly as I could) about the  leptomeningeal cancer progression, entering the clinical trial, and the success (80% reduction) of the new drug Lorlatinib.  Then came the part that I felt angry about (and is already forgiven and soon to be forgotten).  My PCP, the one who seemed interested, said, “Well, I think they send reports to us so why don’t we just schedule an appointment in six months to check in.”   He/she didn’t even know if Dana-Farber sent reports, hadn’t even peeked at my chart to see what was up before coming in to the room, had no process in which he/she checked on his/her patients with metastatic cancer, and he/she thought it would be nice to check in in six months.  And me?  Silly me.  I stopped at checkout and scheduled that appointment.

Recently I saw FB posts singing the praises of Dr. PCP.  Before cancer I would have said to anyone asking about this doctor that you’d have to do your own follow-up, that Dr. PCP doesn’t always call promptly with lab results, mammography reports, etc.  Now I would add that if he/she doesn’t care about my case enough to know if Dana-Farber has sent reports (of which there have been dozens in 2 years), then it seems unlikely that he/she is very attuned to the needs of his/her patients.

As we all know, but don’t always remember – you know your own body.  Pay attention to what it’s telling you, and advocate for yourself.  Ask questions, ask for explanations of test results and treatment options, ask for expert opinion, and if you don’t feel confident about any of it, seek another expert opinion. I feel blessed that we made the right choice for us by going to Dana-Farber .   They fill us with confidence in their work and with hope.  Even when the news is not so good, there’s no doom and gloom, and always hope.

Spring seems slow in coming here on the mountainside.  The goldfinches are now bright in color, and tom turkeys are in full strut, dancing for the hens.  Dan and our son are now over in the field daily working on getting the lobster traps ready for another season.  I am truly finding joy in the everyday every day with Dan, the family, our three little dachshunds, and Dottie and Matilda, our spoiled Nigerian Dwarf goats.  And, tomorrow night my children and grandchildren are taking me to see the Wizard of Oz.  Blessed.

 

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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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.

March 1, 2018 Health Update

The good news is IT’S ALL GREAT NEWS!  No, I’m not cured.  No, I’m not NED (no evidence of disease).  Don’t waste your time worrying about those things.  According to “my” oncologist at Dana-Farber, my brain MRI, CT scans of my chest and abdomen, EKG, and blood-work all look GREAT.  I won’t see the reports myself until next week for details, but GREAT will do.

Our morning started with a blood draw and IV at 6:30 AM at Dana- Farber. (Sent a pic of IV to our granddaughter in nursing school  who just successfully inserted her first IV) Then, after a brisk walk across the bridge, I had the brain MRI and the CT scans at Brigham and Women’s.  After those, it was a race back to Dana to the 10th floor for an EKG, vitals check, and appointment with the doctor and the clinical trial nurse. We finished all this at 9:55 AM. Record time I’d say, thanks to a new patient coordinator who booked my appointments overlapping one another.  Oops!  Everyone made it work just fine.

After the appointments we waited 45 minutes for my wonder drug Lorlatinib.  It is she who is in there day after day tracking down that nasty ROS1.  Lorlatinib is relentless in her work.  I am grateful to those who developed Lorlatinib.  With each drug developed we get closer to the time when lung cancer is managed as a chronic disease, until there is a cure.  I’m grateful to all the brave patients in the first trials of this and other drugs being developed for ROS1.

I continue to work on my part of the deal with Lorlatinib, keeping myself healthy.  This work includes: acupuncture for neuropathy, paleo diet for the nonstop weight gain (now stopped),  immune system support (advised by acupuncturist, approved by oncologist – some supplements were nixed by oncologist due to unknowns of drug interaction), and energy healing meditation/practices. Soon will be increased time outside.  It’s a full time job, staying healthy, but it’s paying off.  I’m not just alive, just surviving, I’m thriving, and feel well – all things considered.

So, after a whirlwind trip to the city (traveled there yesterday), we arrived home at 4:30 PM.  Dan does a lot of driving and waiting.  It can’t be easy.  We’re a team, he says.  He’s a wonderful man.  And now here we are, back to finding joy in the everyday every day with the family, three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

 

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.