My cancer journey so far (written for ROS1der Feature Friday)

 On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro.  April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs.  By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015.  Guess again.  I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well.  The FNP saved my life by doing an x-ray.  How simple was that.

After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston.  They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon).  Testing for a gene alteration was done despite initial insurance denial.  Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI  doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel.  Dana-Farber is a place of hope, caring, and expertise.  While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group.  I am so very grateful for this forum.

I began taking crizotinib March 2, 2016.  After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well.  Within a week I was breathing easily.  While never NED, everything was greatly reduced and remained stable.  By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.

In March 2017 I began having odd headaches.  A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.)   Again DFCI offered hope.  I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier.  I stayed on crizotinib until one week before beginning lorlatinib in July 2017.  I gave up teaching to make keeping my body strong and healthy my priority.  Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable.  My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks.  Twenty-nine months so far!

My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s  college graduation.  I recently hiked (slow-walked) a small mountain.  I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed.  I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K.  I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others.  My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time.  Always, always have hope.59233457353__C7F9845D-C46E-45CE-9B6B-667E849E2D3A

Extraordinary!

IMG_3932Tonight my feet hurt and I don’t mind. Even though I searched all year for the best hiking boots for neuropathic feet, I expected my feet would hurt some.  It was worth it.  My tolerance for what cancer and my meds are doing to my body has certainly changed over the 3.5 years in this journey.  Especially  with the neuropathy, fatigue, and “huffing and puffing”.  Funny what you can get used to. So too has my overall outlook toward expectations of myself.  I’m much more accepting of this change in abilities now, even as I continue to challenge myself to stay strong and healthy, body and mind.

In 2012 when we climbed Mt. Kilimanjaro, we did so because of a documentary in which they said that climbing the tallest freestanding mountain in the world is an extraordinary thing that ordinary people can do.  It is, we are and we did! I’ve never forgotten that concept.

Today I felt like an extraordinary person doing an ordinary (for most people) thing.  The cancer in my body is found in only 1-2% of lung cancer patients.  Remarkable (definition of extraordinary).  I have lived extraordinarily happily for 2.5 years since ROS1 entered my brain meninges.  Remarkable, given the (now ancient, but considered current) statistics on leptomeningeal carcinomatosis.  This morning I took this extraordinary body of mine on a walk through the field and forest to the top of a mountain. Not up “our” side of the mountain.  But up the “other” side of the mountain, the one with views of ocean, ponds, and the village.  Blue Hill Mountain.  Remarkable!

Much thanks to my daughter Mandy for doing this slow walk with me.  It was a beautiful day in every way.  Extraordinary!  See for yourself, and thanks for reading and caring.IMG_3953

 

 

Finding Joy in the Everyday

Sometimes I know people think it isn’t possible to find something to be joyful about every day.  And it’s likely some think that even more impossible for people living with Stage IV Lung (or any) cancer or with a serious, chronic condition.

I’m here to show you that’s just not so.  My belief is that everyone can find or make some joy in their day.  I hope to help others believe this is so.

Here’s some  info from my latest stable (since being on Lorlatinib 26 months) scans and MRI.  You can see I do have some challenges (not to mention side effect challenges), but also so very much to be grateful for:

In my lung from radiation: Unchanged left paramediastinal radiation fibrosis with ground glass opacity, bronchiectasis and architectural distortion.  No new or enlarging pulmonary nodule.
In my meninges (brain lining): Small posterior foci enhancement in the left occipital lobe with associated SWI foci again noted unchanged.
In my liver: Stable treated metastasis in segment 5
Okay, enough of that! My point is that it does not get in the way of finding and making joy in my day  Now here’s a look at my morning, just an hour of my morning yesterday.
 An hour filled with just a few of things I find such joy in.

Hope for the Journey

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I talk a lot about hope. I often suggest it is something really important, essential even, to have when living in any type of difficult or troubling times.  (And I’m sorry to say that when you think about it, we are all living in troubling times.)  But while I know hope’s importance to me (and I think to everyone) and I can give examples of hope, I’m not really sure how to explain it.

The definition of hope doesn’t even hint at its potential power to give one something to look toward, work toward, plan for.  Oxford: a feeling of expectation or desire for a certain thing to happen  Ho hum. Cambridge English adds to that and usually have a good reason to think it might. Better.  A google search does a little better than that – huffpost.com says “Hope is an optimistic attitude  of mind based on an expectation or desire.”  Okay, good.  Get the idea of an optimistic attitude in there.  Much more than just a feeling.  Attitude is something one has some control over.

Here’s what I think. Hope is what gives one courage.  Courage to forge ahead in the face of adversity, courage to “brave the storm”, whatever one’s storm may be.  It is believing that a positive outcome is a viable possibility, a possibility worthy of reaching, of striving for.

Okay, now for a concrete indicator of hope.  In the clinical trial I’m currently in I have to have lab work done every six weeks, both at and in between my check-ups at Dana-Farber Cancer Institute.  Recently I got a standing order from my oncologist at Dana-Farber for this blood work.  When I saw that it was a standing order and knew I just did the first of 30 times in the order, hope flooded my mind, body and soul.  Forty-five months ago I statistically had just a few months to live. Dana-Farber gave me hope at that time for greater possibilities. Now I have a standing order for over three years.  Now, maybe all standing orders have that number, but I’ve never had a standing order on this journey because things haven’t been stable enough to think longterm for the same lab work.  It doesn’t really matter even if the standing order was for someone else’s convenience – it gives me HOPE! Hope that I’ll be here for another “whatever”.  Hope that my participation in this trial will help doctors and researchers better understand how to treat ROS1 lung cancer, especially when it has metastasized to the lining of one’s brain, or maybe how to prevent it from metastasizing at all.  Hope to have the courage to brave the storm with an optimistic, joyful attittude.  Hope.

I made the “coins” in the photo above to take with me this week when I travel for my check-up at Dana-Farber.  Playing with art materials is one of the many  “gifts of time” I’ve found joy in.  My pursuit of find joy in the everyday every day is quite easy.  I know this isn’t so for everyone.  So, in this small way, I hope to bring joy, hope, and courage to others.

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Riches Aplenty

The other day I wrote to someone that I wished I was rich so I could make a purchase.  Silly me!  I am ever so rich in so many ways.  What I meant and should have said was if I could afford to I would make that purchase. This item isn’t something I want for myself, but rather something I’d like to preserve for my grandchildren.  If I was actually wealthy, I’d want to help people in need.  I have all I need and so much more.  I do wish everyone had all they need.  So many don’t.

One of the greatest riches in my life is the support and love I receive. In good times and hard times I know there will be an abundance of love, and physical and emotional support, from my closest family and friends, when needed, as needed. This has been so throughout my entire life.  I hope they always feel my love, support, and gratitude.  I do wish every being could have such a life experience.

I think wishful thinking has its place, but actions are really what make a difference.  I’ve spent much of my life playing and working with children, beginning when I was a child babysitting for younger children. My resume includes being a mom, a nursery school helper, Sunday School teacher, Brownie Scout leader, a child daycare owner, an elementary school teacher of every grade level at some time (PreK-8) and several content areas (math, reading, writing, social studies, science), an elementary school teaching principal, a school volunteer, and a Gramma.  Over that time I know that I’ve positively impacted children’s lives. I know they certainly have enriched my life.  Just yesterday I had two teens and a preteen spend the day with Gramma.  We played board games, cut branches to haul to the goats, and had a spontaneous hairstyling session – all four of us!  Another of my greatest riches, playing with children.

I’ve been married seventy-one percent of my life.  I went from my parents’ home to the home Dan built for us, the home we live in now (when we aren’t at our Salt Pond camp).  During that time we raised two children, numerous pet children (dogs, cats, guinea pigs, gerbils, horse, goats, iguana, fish, hermit crab), and all the while worked (occupation type work that is) to make our life together what we want it to be.  Our marriage has not been work.  Dr. Phil once said what hard work good marriages were, that marriage doesn’t succeed without hard work.  I disagree.  I think good marriages, happy marriages simply require attention and time. Time together mixed with love, humor, and a sense of fun and adventure.  That doesn’t sound like hard work to me.  I believe anyone who experiences a wonderful, lasting marriage has experienced what has to be one of the greatest riches of their life. I know I have.  I can’t imagine how anything here on earth could be greater.  

Enough musings for today.  I just needed to correct or clarify for myself that “wish” comment.  I know I don’t have to wish for anything.  I have all I need.  Finding joy in the everyday every day, that’s me.  Everyday things like watching the sun rise.

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On to Cycle 35!

My warrior drug, the fair Lady Lorlatinib Lobrena, has proven to be strong. (Yes, she has a new surname. She has been FDA approved to treat ALK+ NSCLC -not ROS1 yet- and that is how she is now introduced.)  After two years she is still able to stay attentive, travel to the far reaches of my body, and sit on ROS1’s brake whenever or wherever he tries to take off in his shiny speedster.  We are filled with gratitude.

I waited to see the official report on my patient portal before writing this.  The report always shows up one week after my daylong appointment.  But at Dana-Farber Cancer Institute we do not need to wait and worry for a week to hear the news.  Here’s how Thursday, June 27 went –

We left home at 4:45 AM for the drive to Boston, arriving in time for Dan to have lunch before my first appointment. And then the fun begins:

1. Blood draw on Yawkey, floor two (two tubes for today, two bigger tubes for trial study)  and IV in (for scans and MRI). When the nurse flushes out the IV, I get that taste in my mouth.  I ask her how it get there so quickly, but she doesn’t really know and marvels at it with me.

2. Over and down to Dana, floor L1 to drink the nasty drink that no longer tastes so nasty – maybe because my taste buds are messed up or maybe I’m used to it now. (I take mine in water, no Crystal light lemonade for me.)

3. Dana L1 for chest CT scan and abdomen CT scan.  Yup, still get that taste in my mouth and warm flush that makes you think you’re peeing.  I ask the tech how that goes from your arm to everywhere else so quickly.  He says he doesn’t really understand it either.

4. Across the hall for brain MRI (45 minutes wearing the hockey mask, in the tube with loud noises surrounding my head) I forget, when the technician flushes my IV, to ask about that taste arriving to my mouth so quickly.  I’m sure this lady would have had an answer, but she was all business and I didn’t want to interrupt her work.  I’ll have to “google” it!  IV out when MRI is finished.

5.  Back to Yawkey, Floor 10 for EKG.  Good thing I remembered to shave my legs this time.  Those sticky things come off easier with no hair.  (Also good thing I’ve got no chest hair!)

6. Vitals taken (Yawkey 10).  No thanks, I don’t need a kilogram to pound conversion.  97% on the O2 – Yes! Way to go little lungs! Radiation fibrosis, partially collapsed lung – you are nothing in this strong body.  Must be all that hill walking to do the goat chores.

7.  Appointment with clinical trial nurse and doctor. (Yawkey 10) This is where we got the great news that Loralatinib is keeping everything stable. Even though we’ve only been there five hours, and did all of the above, they had the results.  My blood work report had even gone to my patient portal already.   With the oncologist, fellow, and nurse, we talk about the test results and the medication side effects. Even though it is the end of their work day, they take the time to ask many questions, listen thoughtfully to my responses, and try to problem-solve any issues (ongoing or new).

8.  Down to Yawkey 2 to pick up prescription.

9. Dan drives us to Seabrook, NH for the night.  It is more than $100. cheaper than staying in the city, and in the summer we can do this whole trip in the daylight.

And so it goes.  Until it doesn’t.  I am very aware of this gift of time we’ve been given.  Many with metastatic cancer do not have a specific gene fusion or mutation that researchers have found and developed a drug to target.   Even when there is a TKI like I am on, the cancer often finds a workaround very quickly.  The toll that the cancer and the medication take on my body is ever-present. We are always in the cancer world where words like “good” and “stable” take on a much greater meaning. But that is just how it is, and we move forward.  Grateful for what we do have, what we can do.  And filled with hope.  Always have hope. There is always much to be hopeful about and for.

The following morning, the day we drove home in a celebratory mood, was a day much like June 28 sixteen years ago when our son and daughter-in-law were married.  A beautiful sunny day, filled with hope for a wonderful future.  So too was it much like a day forty-four years ago.  The day Dan and I officially began our life together.

And now here I am, filled with gratitude and hope – finding joy in the everyday every day with Dan, our family, our two little dachshunds, and of course our goats.

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Time for a new goal

Four years ago this spring Dan and I, with my sister and her husband, went on a backcountry backpacking trip into the Grand Canyon.  We each carried about thirty pounds on our backs, hiking from the South Rim into the canyon for a few nights of camping, and hiking back up with slightly lighter packs.  Also four years ago this spring, our granddaughter graduated from high school, ready for college and to become the nurse she’d always wanted to be.

And then(after the distraction of a house fire) came… “Oh shoot.  Metastatic lung cancer? Well this is not good.  But I have things I need to be here for. What’s the plan to keep me here?” This was my thinking, pretty much, upon hearing my diagnosis.  Even though I knew things looked grim, I needed to focus on life.

And I’ve been lucky.  Lucky to have expert care.  Lucky to have a cell fusion ROS1 that researchers have developed targeted therapies to keep “contained” (my term).  Lucky that another drug was available when the cancer found my brain.

But my being here, living, is so much more than just luck.  My outlook on life, my self care, self advocacy, the strength I draw from the love of others, believing in something bigger than myself, the joy I feel in experiencing every small part of each day, all keep me here too.  And goals – things I need to do.  Important things I so want to be here for.  Today I reached one of those goals.  In fact, it is the only tangible, stated goal in those first months  with a date that I hoped to be here for. A date that seemed so far into the future for someone with a terminal illness.  Today that granddaughter who so wanted to be a nurse graduated and I was there. Fancy that. I was there.  Wearing a bracelet that my dad gave to my mom  – I try to wear it to important family events.

And now?  Well, of course I’ve so many reasons I need to live.  I’ve even got a few mountains I want to climb.  I understand a lot more about this cancer journey I’m on than I did so long ago. And I know I’ve more to learn.  I don’t, though, feel a need to set a new goal with a date that I must reach.  If I can live well  surrounded by love for however long I’m here, I’m quite satisfied.  I will live and play and love with those who love me, finding joy in everyday things every day.  And when I turn 99 I shall dye my hair purple.  (If I have hair.)

Health Update, April 6, 2019

Still LIVING with stage IV lung cancer!  After another full day of driving five hours (I rode with my chauffeur Dan, joined by our daughter this trip!), IV in, blood draw, CT scans, brain MRI, EKG, and Dr. appointment, the tests results look great!  No progression seen in my lungs, liver, or meninges!  Twenty-one months in this clinical trial on the targeted therapy drug lorlatinib.  Wow.  Grateful beyond words.  I will share more on the ins and outs, ups and downs of living with cancer, taking a heavy duty medication that IS reaching my brain and messing up other parts of my system, and what our trip was like (nice!) later, perhaps next week when I get the reports.  But first, this:

Be on the lookout this summer  for these two, having fun while showing support and spreading awareness for the lung cancer community.

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LUNG CANCER MATTERS!  1 in 16 of us will get lung cancer.  Research is key to saving lives, if not in prevention, then in early detection and treatment.

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SPREADING AWARENESS MATTERS!  More and more young people, people with healthy lifestyles, are being diagnosed with LUNG cancer.IMG_8942

LUNG CANCER takes more lives than the other prominent cancers combined.  Know the symptoms.  Don’t ignore that little cough-cough, weight loss, chronic headache, fatigue.  If you think something is wrong, be persistent in finding answers.  Your family needs you.

FAMILY MATTERS!  I’m grateful for mine.

Always, always have hope.

Omi, sweet, sweet Omi

This is not a living with cancer story.  This is a snippet of a wonderful love story.

She came to us broken we thought.  How wrong we were.  Broken tail, scars on her hind end, weighing less than half the normal adult weight for a dachshund, left in a box outside a shelter, we hoped she could heal with us.  We wondered if our love could heal her unseen scars.   We thought we were rescuing her.  Perhaps, but truly she rescued me, that summer and time and time again for ten years.

The spring, ten years ago now, that I began looking for a rescue dachshund was part of a difficult year, filled with great sadness and more looming ahead. We didn’t “need” another dog, but somehow I did.  We found the Coast to Coast Dachshund Rescue site and we had just arranged to get our first “rescue” dachshund Rusty (He’s my good boy Rusty.).   So why was I still looking through the photos of dogs in need of safe homes?  Because it was all simply meant to be.  We knew the moment we saw the listing for the dachshund called Naomi that she had to be in our family.  And so it came to be.

On transport she came, Florida to New Hampshire.  We left her brothers at home and drove the five hours to meet her.  It was love, such love from the first moment I held her. Naomi (the name her foster mom gave her),  became Nomi,  then Omi.  Omi Pert.  Even after being fostered for months, she was physically battered, scars from an unknown horrific past.  The tip of her little tail was bleeding from banging it on her transport crate  while wagging.  I first noticed it when blood spattered on the car door as she wriggled and wagged her happiness to be cuddled in my lap and loved.  She seemed not care about her tail, still wiggling it while soaking up the love we already felt for her.  So home we went.

I’ve known and deeply loved several dogs in my life, each one special in his or her own way. One that I thought I’d never find another love like his. (I have, at least twice since.)  And yet I’ve not known a dog as beautifully and wholly sweet natured as Omi.  Loving,  kind, and even optimistic, compassionate and empathetic I believe. Happy, joyful, content with life.  Not just special, unique in a very special way.  “Such a sweet soul” is how my sister describes her.  Yes, through and through.

A snippet of a love story I said, maybe just the very beginning.  I’m not ready to write the years between that spring day I we picked Omi up and today.  They’ve been filled with joy, with healing, with love. Someday I will tell Omi’s story as she is so worthy of knowing. The will of a being to overcome her past and live a purely joyful life is something worthy of sharing.  I’ve learned much from her.

This week that beautiful, big heart of our sweet Omi gave out.   Omi, my sweet, sweet Omi has left this earth. We are sad, yet filled with the joy that was Omi.  I am grateful, so grateful to have known and been loved by her.  She will be with us forever.

I encourage anyone who has the love, time, patience and space in your home, to let yourself be adopted by a rescue dog.

 

 

 

 

Still playing!

IMG_1845I’m quite certain it is impossible for me to describe how very lucky, fortunate, blessed (choose your adjective) I feel to be here on earth.  This winter, despite (or because of) “everything”, has been one of the most wonderful, wonder-filled times of my life.

“Why?” you might ask.  “Have you traveled to exotic places?” No, I did that in my other life.  “Maybe you swam with the dolphins?”  Nope, other life too.  “I know, you rescued a dachshund to add to your family.”  Other life and they’re still living the good life, one now elderly with her heart condition that requires three medications, twice daily as she reminds me.  “Well, did you get to watch the birth of a grandchild?”  Other life and one is now 22!  And me, still just a kid myself!

This winter for the first time in either life, Dan and I have both been home together most of the time every day, the exceptions being his coaching and my one (just one all winter!) trip to Boston for my clinical trial appointment.  This winter I’ve been able to get a glimpse of what our retirement might have looked like if our other life had played out as “planned”. While neither of us have been physically able (Dan due to surgery, me -due to the beast) to climb mountains together or even to snowshoe up “our” side of the mountain, we’ve had a wonderful time, simply being.  Being together.

I’ve had times when I’ve struggled about the toll the side effects have on my physical self.     Treatment, both radiation and powerful targeted therapy drugs, have had immediate and long term effects that for me are just plain hard, yet tolerable. Some do not get the chance to be given a new life as I have.  I am grateful. I embrace this drug in my brain.  I hope someday lung cancer patients will be able to have treatments that both work and have fewer, less harsh side effects.  But for now I understand that treatment is why I have this wonderful new life.   I choose life.  I cherish this new life.  And I continue to work with the treatment to keep my physical self as healthy and strong as I can.

I love this pace of no hurries, no worries we’ve grown into this winter.  It allows me to observe the world around me, truly and thoroughly.  Whether it is the birds and squirrels at the feeders, the deer passing through the backyard, the little ermine that hides (lives?) in the brush pile, the goats and dachshunds that provide endless hours of entertainment, the grandchildren, hearing my father-in-law’s stories,  the basketball stories and passion of Dan the coach, the discovery of playing with mixed media art, reading or listening to books (The Moth Snowstorm and Becoming, field guides, and more) the forsythia brought in for a spring preview, or the subtle changes of the landscape, it all fills me with wonder.  Wonderful.  Wonder-filled.  Fulfilled. Full.  A full life, well-lived.   Simple, slow-paced, yet busy enough.  One day at a time, waking each morning knowing I’ll find joy in our everyday activities, surrounded by everything and everyone we love.

Still playing, just differently.  Here’s a glimpse: