Hopeful Health Update!

“Everything looks good!” said the “new to me” oncologist.  “You’ve been doing well for a LONG time.”  Okay friend, knock on wood, find a four leaf clover, and thank God when you make a statement like that.  It IS the truth.  I HAVE been doing very well on Lorlatinib.  In metastatic cancer world, it HAS been a long time. 546 days on Loralatinib  on that appointment day.  I am grateful to the doctors, nurses, researchers, and all who send positive energy and prayers.  Hope, I always have hope.

My appointment was great!  This doctor was very interested in my health and in the work of the ROS1ders.  He raved about how impressed he is with the ROS1ders advocacy work.  And, it is always nice to see Dawn, the clinical trial nurse.

It was a different trip though because Dan couldn’t go.  He recently had a total hip replacement and no long rides for him just now.  My sister drove me, while the “children” helped Dan with chores, etc.  My sister began this Dana-Farber relationship with us nearly three years ago, traveling with us as a note-taker and support when we first started our cancer journey.  I’m glad she was able to hear, “Everything looks good!”  Even my labs were all good.

So.  Well, my 3 year “cancerversary” just passed.  While I seldom really stop thinking about how fragile this string I’m hanging onto is, I think we’ve made a very wonderful new life for ourselves. And, this winter for the very first time ever, we are both at home every day.  And yes, it IS a good thing we love each other.  We are loving being together.  I’ve been busy caring for the goats and dogs, filling the wood stove, and keeping the ice and snow off the doorstep.

A new hobby is is also keeping me busy and happy.  I’ve spent my adult life simply knowing I couldn’t draw, paint, etc.  While I see myself as creative minded, I don’t see myself as an artist for sure.  Well, to my surprise – like most things – if you put your mind to it and practice, even I can learn to draw, paint, make fun art with mixed media, and Zentangle.  Yes, it’s true.  I’m having great fun – not just crafting, but learning to draw, learning to use watercolors, learning lots of mixed media techniques.  And, I’m no longer afraid to pick up a pen and use it for something other than writing.  Who knew this would be so much fun.  I don’t even mind sharing it, no matter what it looks like.  I’m having fun and learning, while playing and practicing.  Seems crazy, but it’s true.

One more fun thing has happened.  Years ago, as part of a senior thesis project at Goddard College, I wrote a children’s story.  At the time Dan really wanted me to see if I could get it published, but the one place I sent it to rejected it.  I tucked it away for the someday grandkids.  Well, welcome to the world of self-publishing!  I’ve worked with a publishing company and illustrator, and will soon be the published author of a children’s book.  (Further details when it actually comes out!)  I wasn’t sure I’d live to see it done.  Seriously.  In May, it was to take 3 months, and here we are in January.  Long time for someone living with metastatic lung cancer.   Looking hopeful though.  Good thing.  It’s on my life list to get done.  (You can smile now.  I am.)

Finally, if all goes well I won’t need to go to Boston until early April.  Twelve weeks!  You can find me here in our winter home on the mountainside, finding joy in the everyday every day. (It’s easy to do!)  Feeling grateful, joyful, peaceful, and as always – hopeful.

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Another year

Another year gone by.  That’s how many people say it I think.  Another year.  Me?  ANOTHER YEAR!!! YES!  We did it!  I’m really here to see ANOTHER YEAR begin!!! Here I am, LIVING with metastatic (here, there, everywhere) lung cancer. Since that awful diagnosis I’ve celebrated not one, not two, but three, yes THREE New Years.  How amazing is that?! Well, I can tell you.  Very.  Very amazing.

New Year’s Eve 2012, Moshi, Tanzania, Africa.  New Year’s Eve 2012, Amsterdam, Netherlands, Europe.  New Year’s Eve 2012, Massachusetts, United States, North America.  That was an amazing New Year’s Eve for sure.  Got on a plane in Africa on New Year’s Eve, landed in Europe for another flight still New Year’s Eve, and finally made it to Boston, MA in the United States on New Year’s Eve.  Three continents.  Not likely to have another New Year’s Eve like that one.  If our flight had not been cancelled the day before we wouldn’t have had that one.  Lucky I guess.  Not that we felt that way at the time.  But it is kinda cool to say we celebrated New Year’s Eve in/on three continents.

Lucky we were in 2012 and lucky we are today.  Blessed.  Fortunate.  Grateful.  Joyful.  Loved. Content. Hopeful. Those are some of my words I carry with me from 2018 into 2019.  They may sound “soft”, yet they come from, and give to me, strength, courage, and peace.  I am excited to see what things our family will celebrate in 2019.  Graduations, family gatherings and outings.  Every day a gift.  I know Dan and I have much to look forward to, beginning with our winter on the mountainside, cozy in our home with the three little dachshunds, and the goats nearby in their little barn.

May 2019 be a year of joy and health for you.

Another year!

Stay Focused on HOPE

“It is what it is. Life is what you make it.  When life give you lemons…”  You get the idea.  Don’t offer me any more of them right now.   Please.  And, thank you.

Today I had a meltdown, a rather big one.  I share this because sometimes I think I make this living with lung cancer stuff seem much easier than it is.  And that’s not fair to all those living with lung cancer or their caregivers.   I have so many things that are going right on this journey and so many blessings every day.  The reality is that many are really suffering and over 400 Americans die of lung cancer every. single. day.

It began quietly, building throughout the day.  Dan and I were both aware it was happening.  He tried to steer it in a more positive direction.  I could do nothing but let it go.  Every little thing throughout the day reminded me of what I cannot do because of lung cancer.  (Not my usual self.)  By the time I realized that my somewhat crazed state was likely my medication doing it’s job in my brain, I was in tears.  Sobbing, I said over and over, aloud and in my head, “I don’t want this lung cancer anymore.  I don’t want this lung cancer medicine anymore.”  Well there.  Okay then.  Now that’s wishful thinking.  Because really? Really, for me there is no choice.  I can’t just wish this cancer away.  Anymore than there’s a choice about aging.  What’s the alternative?  Death.  That thought knocked some sense into me.  I’m not ready to give up on life yet.  I’m still a healthy, young woman, just with lung cancer – my first brilliant oncologist Dr. Gandhi told me so!   I wiped my tears, apologized to Dan, who held me through it all (as he always does), and moved on with my day.

Tonight I’m back to normal, my normal.  Living well with lung cancer.  And I know my medicine, the fair Lady Lorlatinib, is reaching and working in my brain.  I don’t mind that my fingers and hands feel prickly as I touch the keys.  Neuropathy, it’s a brain thing.  It’s like I told my oncologist about my odd headaches, vision flashes, and messy speech – it means the medicine is working in my brain.  Lady Lorlatinib is working very hard to contain and control that nasty little ROS1 riding around in his sports car throughout my body.  I am grateful for this powerful drug and the research teams that identified ROS1 and treatments to slow down that speedster.  Tonight, why, I even laughed when I put my cup into the cupboard to warm instead of the microwave.  Huh, no buttons to push.  Oops!  (And no, everyone doesn’t always do that – I never did…)

My purpose in sharing this post  is why I share my journey at all – to help people understand the metastatic cancer journey.  To inform people who are well, so they may reach out to others with compassion.  To inform others with cancer about the importance of finding excellent treatment, keeping your body healthy, and living with peace and hope.  For me today was just a blip on the screen.  Kind of like those teenage PMS days. The real me – I am at peace with my life,  filled with hope, and surrounded by love.  I pray for that same state of being for all who travel this road.

This is Lung cancer Awareness Month.  Beware!  And BE AWARE.  If you have lungs, you are at risk for lung cancer.  Early detection can mean possibly being cured, saving a life.  Detection and genomic testing can mean a targeted treatment, saving a life.   Research funding is needed so that the heroes can do their work, finding treatments, causes and preventions, and cures.

Me.  Finding joy in the everyday every day, in the barn with the goats, snuggled on the couch with the three little dachshunds, just being here with Dan, in our home on the side of the mountain.  Thanks for listening.  Your prayers and thoughts of strength and positive energy for all who have lung cancer are needed and appreciated. Love to all.

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Feeling Grateful for the Opportunity

Feeling grateful, again, still, always.  Yesterday was a purely nice day.  It was the day of the annual Save Your Breath 5K to benefit the work of (Free ME from Lung cancer) , an organization that more Mainers need to learn about.

On the first Sunday in November, runners gather at the Y in Augusta at 7:00 AM (only it feels like 8:00 due to time change).  Many there are running because they love running this late season race, many others because they love someone with lung cancer, have lost someone to lung cancer, or have lung cancer themselves, and some run for both the love of running and the cause.  This latter describes my grandchildren and  their mom, my daughter by marriage and heart.  They love to run and they got up at 5:00 a.m. to travel to the race in my honor, to support Free ME from Lung cancer.  And running with my grandchildren was their great-aunt, my sister.  On the sidelines with me were Dan, my son and my brother-in-law. It was so wonderful to watch Team polepolebreathe.org in their tie-dye T-shirts (over or under their warmer gear) running or watching on this crisp, clear November day, supporting the lung cancer community. Just perfect.

After the race we went to breakfast at Mulholland’s Augusta House of Pancakes.  It’s a great restaurant, we love that you can walk in with a large group (last year I think we had nine) and they will happily accommodate you.  A couple of interesting things happened there. First, a governor candidate stopped by our table, noticing the “matching” Ts and asked my granddaughter what we were up to.  Ten year old C. did an impressive job of explaining.  The candidate seemed to have no awareness of the event, despite the promoting Free ME from Lung cancer does in that region of the state (and has for the six years of the race.)  If that candidate wins, they will get a letter from me while we are still “fresh” in their mind.

And then came an opportunity, for the children and for the grown-ups as well, to understand better why we participate, why I post.  It happened as we were leaving.  Our waitress must have asked my son (walking out just in front of me) if we had a family member with lung cancer.  He replied his mom.  With eyes filled with tears, she shared that she’d just lost her mom.  He quickly said, “My mom’s right here.”  By then, while I hadn’t heard the words she’d said, I knew she’d been deeply hurt by this cancer monster that took my dad and has so changed my life.  I stepped up, and she asked if it was me who had lung cancer.  Nodding, I said, “You look like you need a hug,” and reached out to her.  Here, in the middle of the restaurant, two strangers sharing  this bond, her grief, my hope, our compassion. In that hug I could feel the love for her mother.  She asked about my health, so grateful that I’m doing well.  And even though she doesn’t know my name I know I’m on her prayer list, and she on mine.  An opportunity to understand.

The cancer journey – when you’re stage IV I think “journey” describes a healthy, forward-looking approach – is filled with wonderful opportunities.  Sometimes you need to seek them out and sometimes they find you.   Be open to them.

Lung cancer awareness can save lives.  Test your home for radon.  Know the symptoms.  Don’t ignore that persistent cough-cough.

Finding joy in the everyday every day.

Health Update July 3

Health Update July 3, 2018. “Scans look good!  Blood work is all the same.  How are you feeling?  What have you been up to?”  This is how the oncologist (one of my heroes in this journey) comes into the the room.  “Phew! I feel great now,” I think.  Moments before Scanxiety had taken a stronghold over my usually calm mind.  It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time.  Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis.  (NO. I never smoked.  Silly you, silly me.  I HAVE LUNGS!)  Okay, enough on that. Radiation to lung as palliative care.  Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable!  March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go.  But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib.  July 2017 – entered Lorlatinib trial.  Lucky to be able to do that at my treatment center.  (That’s why we travel to Boston for treatment, they’ve kept me alive.)   Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks.  Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib.  My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms.  Next up was the brain MRI.  The techs complimented me on how well I did. “Practice, lots of practice!”  I replied.  When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!”  Then I got  my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently.  After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment.  Here’s why the Scanxiety set in at that moment.  After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr.  This weirded me out big time – not my routine, not his room, what’s up?!  Nothing, it turns out.  Sorry that I scared us both.  Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday.  They  truly forgot my EKG, maybe in their excitement to go home for the holiday.  Did it after the appointment, and it was fine too.  All good, see you in September!  Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer.  I know I’m lucky to be alive.  That being said – it’s not like someone chooses to have metastatic cancer.  I can now though help others by sharing – thus bringing purpose to this experience.  So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons.  You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through.  No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes.  One is great news I think for my fellow ROS1ders.  The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48.  More lives saved!  And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition.  But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on.  It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be.  Keep in mind that before cancer I took no daily medication, and have no other health issues.  Here are the risks on the lorlatinib list that I experience:  increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!;  mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!;  swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try).  There are others that I don’t experience.  My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can.  No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year)  are doing.  Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life.  That’s it for now – I think my mood’s about to change!  And laughter, always have laughter in your life.  Maybe some children, kids, and dachshunds too!  Thank you for your thoughts, prayers, and love.  Love to all.  Enjoying the everyday, every day here, there, and everywhere – that’s me.

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Camp 2018

Father’s Day 2018

Father’s Day 2018

Father’s Day, a special day to honor fathers.  As I write this Dan is coaching a Little League game. He is coaching with Tim, our son, who is also a father.  On the team is Tim’s 12 year old son, one of our five grandchildren.  It is the last game of the season.  This may be the last time these two fathers have the opportunity to coach LL together – with much sadness they think this is so, I’m not so sure.  Time will tell.  To me, on this day before Father’s Day, what they are doing is one day in the greatest of love stories,  This story includes not only them, father and son, but my father as well.

I shall try to tell this baseball love story through my eyes, watching it for the past nearly 40 years.  Baseball is only the vessel, or vehicle perhaps, in and through which this story unfolds.  Not that baseball isn’t one of their passions!  Believe me, they all shared a passion for the sport, especially Little League.  But passions, I think, are developed, nurtured over time, under certain conditions.  And in this story of mine, those conditions are love, time, and dedication.  Their many talents and skills, innate and learned along the way flourished under these conditions.

I don’t really remember quite how the beginning of this baseball love story all came to be – I’m sure Dan could fill in the details for me, but it’s my story, so…  When our children were young, about 7 and 5, my dad recruited Dan to help coach LL baseball when my brother was playing. We were part of the group to begin official LL in our area.  I recall many meetings before Coastal Little League was a reality.  A desire to see something done correctly, well and be sustainable brought people together, for the players – children ages 9-12 at the start.  Dad and Dan, working together, were instrumental in making that happen.  Looking back, this was the first test of the conditions of my story – love, time, and dedication.  My dad and Dan’s relationship strengthened and flourished through their shared passion for youth sports, in this case baseball.  

And so it was, before our children were old enough to play, Dan became a LL coach.  And because we always did everything together – our children grew up at the ball field.  And the baseball love story flourished – often with my dad keeping score, Dan coaching, and our son usually sitting on the bench, soaking it all in.  All-star play was especially exciting in those beginning years with Dad as official scorer, a role he kept for years, and Dan learning to become the great coach he is today. And then it came time for our children to play – first our daughter who went on after LL to play softball in middle school and high school, and then our son, where the father-son baseball love story took on a life of its own.

Dan loved coaching Tim’s team, and they were a fun bunch of kids.  Tiny, but mighty.  We lived LL baseball for four years. (Many more before and after, but four with Tim in LL.)   Regular season, all-stars, tournaments, Blue Hill Fair – they just couldn’t get enough baseball.  The summer of 1990 was maybe the pinnacle of the LL experience for many of those involved.  It was a magical summer.  Father and son lobstered together by day and played baseball at night.  If they weren’t playing baseball, they were talking baseball, strategizing and preparing for the next big game.  As a catcher, Tim became the coach on the field, able to see the game only as one with experience can – at 12.  The highlight of this summer was making it to the State Tournament.  I well remember seeing them all -grandfather (my dad), father, and son as they looked over the beautiful new field they would be playing on, as they worked together, again – scorekeeper, coach, and player over the course of the tournament.  There were so many moments lived and memories made that are truly priceless from those few days.  Not just for them of course, but my story is about them, the fathers in this love story.  Love, time, and dedication: to youth baseball, to doing things well, to one another, sustained over time, through love.

Dan continued to coach Tim’s team until there weren’t teams for Tim to play on that he could  coach. Tim played in high school, American Legion ball, and in college.  His dad always there to watch him.  Love, time, and dedication – most of all love – from it the others come.  But the love story had been written and couldn’t end when a boy is 12 or 14 or when there isn’t a team to coach.  There’s always a team to coach!  Because when you’ve built something correctly and well, and you nurture it through the years, it not only sustains, but thrives, flourishes.  And so started a new chapter in this love story – father and son coaching together, son as coach with father helping.  It never matters to Dan.  As much as he loved coaching Tim, he loves coaching with Tim.  He admires his son’s knowledge and skills, the way he conducts himself, his way of working with youth. Dan talks with me about the things he can contribute to their shared passion when working together.  “What love and dedication,” I think! 

Dan’s early coaching led him to coaching many other youth sports over the years with our daughter Mandy and Tim, and even with our grandchildren beginning with PeeWee basketball 14 or 15 years ago.  This year, 36 years after that first season of baseball, he coached his granddaughters’ elementary school basketball teams with Tim and Mandy both working with him.  Love, time, and dedication: to youth sports, to doing things well, to one another, sustained over time,  all through love.

Today I think of my father and how very happy, and yes – proud he would be to know how this love story has flourished. Grandfather and father coaching the son.  Giving one another love, time, and dedication.  And doing it well.  May all children experience such love.  My timeless love story, never to end…

 

And yes Dad (and all you other Coastal LL baseball fans out there), even though they are coaching and playing for what was once their rival team, they won the league championship today!

 

Camp

Camp.  It’s always really just been “camp” to me.  Not our family camp, Mom and Dad’s camp, Dan’s and my camp, the Salt Pond Camp – just camp.  An entity, evolving over generations, ready to take whatever shape or serve whatever purpose is needed at the time.  For many generations it was part of a larger tract of land owned by the paternal side of my family.  And as often happens,  the land was divided so siblings could all have a share.

My parents chose to keep the spot I refer to as camp.   It is a perfect spot, with a brook running through, tall oaks with their roots holding onto the banks while leaning toward and over the water, an ever shifting kinda maybe beach, just the right mix of sand and mud for any kind of soup or pie, a ledge popping up for gulls and ducks and children to sit atop and soak in the sun.  That’s Freddie’s rock – my grandchildren still call it that for their great-uncle Freddie, named for his (our) grandfather Freddie.  Over the years appeared first a tent site, a platform, a camp, a larger camp, a deck, a renovation or two…all the while still camp.  Cross the brook and climb the hill, and you’ll find the field – home to resting geese, monarchs, birthing does, and  to foxes hunting mice, a perfect field for flying kites or chasing bubbles.  Today it is also home to two Nigerian Dwarf goats, Dottie and Matilda, and to our  vegetable garden.

My grandchildren coming to camp to spend days with me is now Camp Gramma.  Someday I’ll write about Camp Gramma. I’m not sure I can begin to adequately describe how wonderful our summers have been, but someday I’ll try.  To share my love for this place I call camp with all my grandchildren is one of my life’s greatest blessings.  Beginning with our oldest, now 21, they’ve all spent hours and hours doing the summer work of childhood – play. Playing in, on and with the water, the sand, the mud, the ferns, the tall grass.   Exploring the brook, the leaf litter, and climbing trees, playing in the playhouse that was once their Gramma’s, brought to camp by her parents long ago, used for storage, and then once again as a place for play. Camp will remain in their hearts and minds forever, wherever their lives carry them.

Dan and I will always be grateful to my parents for entrusting us with camp.  They must have known how much we would both come to love it.  Mama got to see that that was so.  I like to think they both are here with us watching their great- grandchildren love what they loved so.

Just as our winter home with the kitchen window view of the mountain brings me joy watching the birds and deer, safe and cozy as the snow piles up throughout the winter months, camp now feeds my soul in a deep and fulfilling way  as I do my hard work of keeping my body and mind healthy.  Being in the midst of  the wonders of our natural world, sharing your love for a place with those you love, and knowing that you’re part of something much bigger, longer lasting than any of us – generations before and generations to come, is an awesome experience.  And here I am, finding joy in the wonders of the everyday, every day.  camp.