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.

 

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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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.

 

 

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.

 

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.

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