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.

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 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:, 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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