Good news Health Update

Chest and abdomen scans, brain MRI, and blood work all look good!  Wow, that means the cancer that is there  is stable and the drug isn’t messing with my body badly enough to need to make changes.  Now, unless I become symptomatic, we can breathe a sigh of relief for another nine weeks.  That takes us through the holidays all the way to my third cancerversary!  Yup, three years since the big blindside.  Three years of figuring out how to live well with metastatic lung cancer.  Three years of living!

Below:  February 2016 and May 2016 after two months on my first targeted therapy, crizotinib.

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Yesterday at 3:30 a.m. we left home to drive to Dana-Farber Cancer Institute for the above tests  and an appointment with my oncologist and clinical trial nurse.   Big traffic jam getting in, but 6 hours later we arrived, parked, made our way to Dana L2 (I think).  I got my beverage of the day in prep for the scans.  Then blood draw (extra for the study) and IV in for scans.  Scans done and in for brain MRI.  Ear plugs, bean bags around my head, hockey mask on, and slide in for a noisy, long nap.  Did I say it was long?  Oh yeah, I did. IV out. Then back to Yawkey and up to 3 for a very quick cafeteria  lunch, and on to the 10th floor.  Vitals done (anyone wonder why the blood pressure might be up), EKG, and off we go to the patient room.  Whew!  In comes a fellow (yes, a fellow fellow) and the nicest trial nurse you can imagine.  Dr. ? (the fellow) told us the scans looked good and that Dr. J, my oncologist was waiting for the results of the MRI and would be in shortly.  We talked about my neuropathy, and my theory that the tendon inflammation I have (hands and feet) is related.  No one can explain it to me, still.  After listening to my heart and breathing (all good!), the fellow left, we talked with Nurse D, and then soon the Fellow and Dr. J were back. The brain MRI looked stable too.  So, good news all around.

Dr. J suggested I might want to reduce my dosage again to see if that helped with the neuropathy.  Early on in the trial we reduced the lorlatinib from 100mg to 75mg for that reason.  I said, “No thanks, I don’t want that nasty beast back in my brain.”  (Not that it is totally out.)  We talked about it a bit more, and Dr. J said, “So you can live with it this way?”  And of course I replied, “You used the key word there.  I choose to live. I’d rather not take a chance on it now.”  And so, I remain at 75mg.

Finally it was off to floor 2 to wait for the cancer fighter, our Lady Lorlatinib.  I imagine her dressed in white this day for Lung cancer Awareness month, riding from the heavens on Pegasus.  She is a powerful ROS1 cancer fighting targeted therapy drug – that I know.  Whenever I feel her working in my brain, I am grateful.  Grateful to ALL that make it possible for me to live.

When everything was done, it was only 2:45 p.m. We find the car in P5 and head to Seabrook (much cheaper place to stay), an hour away.  In good traffic that is.  Two hours for us yesterday…   Dinner and off to sleep. Up at 5:00 a.m., a stop for breakfast, and home before 10:00 a.m.   A whirlwind 30 hours!  For both of us – thank you Dan.

And now here I am on the couch with the dachshunds, bird feeders filled!  Finding joy in the everyday every day.IMG_0763.jpg

 

ROS1ders are raising research funds to learn more about, and to find treatments for ROS1 cancer.  If you can help us, just follow the link below.  Thank you.

Donate to ROS1 cancer research

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.

Hope, always have hope!

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Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”  Margaret Mead.  Well, I’m not sure that it is the only thing, but I believe the first statement.

We all have our burning issues or passions that we feel are the most important at any given moment in time.  For me it could be staying alive (that’s going pretty well!) or Lung Cancer Awareness month and raising fund for ROS1 research.  Always I think about family, children, education, nature.

But right now, I can’t think about any of those things.  In case you haven’t noticed, our country is in crisis.  No material gains or political beliefs can be worth what we’ve allowed to happen.   We cannot let hatred, fear, and greed take over.  We each elect officials for varied reasons, but I cannot believe that as a country this is what we want.  Hate, fear, divisiveness, violence being spread, promoted, led by the President of the United States of America.  The most respected leadership position in our country.  No concern for the people or the land, here or anywhere.  (I’ve plenty of evidence to support this statement, but I won’t do that to you.)

Where is the courage?  Where are those leading with courage and strength, hope, compassion, truth, and yes, even love?  Much like the “helpers” Mr. Rogers spoke about, they are here – look for them.  Courage IS here.  Those words from Fred Rogers about helpers, used so often, are advice for children, words to help children find hope in inexplicable, horrific situations.  We, though, are the adults.  We must be the helpers, be the models for the children of the world, our children – in Yemen, in cages in U.S. border states, in our neighbor playgrounds – our children.  No matter why we may have made the choices as individuals and as a nation that have brought us to this place, we can now effect positive change.  Each, in our daily lives, can do so in our treatment of others, and by living the life we want to model for our children.  Teaching, nurturing, and living a life of courage, hope, compassion, truthfulness.  Faith, joy, love.

We may not all consider ourselves leaders or activists, but we can all vote.  (Even that right is being made difficult for many citizens, here in our United States of America.)  Voting is not only our right (thanks to the courage and determination of many, see the 15th and 19th amendments), voting is our responsibility.  Please vote.

Our children, the children of our neighborhood, our country, our world, are looking for helpers.  Love thy neighbor – we’re all neighbors.  And, always have hope.

On a personal note – we are settled, goats and dachshunds too, in our winter home. (Yes, I understand how lucky I am to be able to say that.)  Next week I once again go to Dana-Farber Cancer Institute for a full day of tests and appointments.  Finding joy in the everyday every day.

Corinne Pert, ROS1der

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!

 

When IS the cure worse than the illness?

It’s a real question to consider – when IS the cure worse than the illness?  Medically or scientifically, it is all about the net result.  If the net result from the treatment is worse than the illness (or potentially so), then the cure is worse than the illness.  But how do you measure things like quality of life or the long term (years into the future) effects of treatment when you’re just trying to breathe or when you have goals that require staying on earth until the time specific goal is achieved?  Most of us would take our chances I bet.

Over the past month three people I know through life, not because cancer, have died either from lung cancer or perhaps from the long term toll that lung cancer treatment takes on the body.  Their lung cancer journeys were all different.  None were elderly. All lived life to fullest until that was simply no longer possible.  My thoughts of healing and strength and prayers are with their families.

So how do we know what to do when faced with unknown options?  No one can say for sure what the longterm effect of some of these treatments will be.  That’s one reason we have clinical trials,  and research studies over many years.  Well, for me personally in my situation the answer is easy.  Unless the quality of life with treatment makes it impossible to find joy in the everyday on most days, then I choose life here for a while longer.  And that means treatment.  We had a little glimpse of what life without treatment was like.  We know I wouldn’t have been able to sustain that for long.

We know too that this treatment  comes with a price, not just a monetary one. I think it is impossible to avoid it changing many lives forever.   I say “we” often because this journey is our journey, mine and Dan’s, along with our family.  I don’t want to make decisions alone as they are not just for me.  That’s not how we do life.  And seriously, I wouldn’t last long on my own.  It is wanting to be part of “we” that keeps me going.  But the price is high, for everyone.  Maybe it’s just what families do, but I sure wish it wasn’t something they have to do, and I think it shouldn’t have to be.

Last fall I met a woman who chose treatment for a cancer many years ago.  It was successful – she’s here, decades later!  She described to me the longterm effects on her body.  It was impressive, not in a good way.  She has had multiple medical procedures and has some serious health issues related to that treatment long ago.  But she also described many of the things she has accomplished in the time “given” to her by treatment.  A trade-off, I guess.

We all have to choose our own paths.  My heart goes out to the loved ones of lung cancer patients.  Whether it is a stage IV diagnosis caught too late, or an early diagnosis that can be cured, the journey is tough.  I know.  We traveled it with my grandfather and my father.  Whether it is months of caregiving or years, the primary focus is on the patient while often caregivers are working, filling the household role of the patient, and doing the caregiving.  There is not an appropriate framework of support for them, and with the focus on the patient, caregivers often don’t advocate for themselves.

Maybe someday not so far off treatment will be available for lung cancer to be considered a chronic, manageable disease instead of the deadly one it is now.  Not a cure, but safe treatment for a managed disease.

There are things we can all do(regardless of treatment choice):

Reach out to some of those caregivers. (I can think of many times with other friends or family members when I wish now I’d done more, hadn’t thought I was too busy or someone else was doing it or it wasn’t needed.  I can do better going forward.) Just knowing you are thinking about the caregiver helps.  Maybe see if you can drop off a meal, offer to hang out with the patient so they have time for themselves, offer to do some “chores”.  Just the offer may really help.

Support increased lung cancer research by contacting your representatives.  We can change this for future generations.  There are exciting things happening in the fields of targeted therapy and immunotherapy.  If you want to help with a donation, please consider supporting ROS1 cancer research  https://www.lungcancerfoundation.org/patients/ros1/contribute-ros1/

HOPE, always have hope.

As you can see below, we are at our Salt Pond camp, enjoying the everyday every day.   And yes, even Dottie and Matilda, our two Nigerian dwarf goats, are here and loving the oak leaves.  We had a wonderful family weekend at Spencer Pond Camps.  I’m looking forward to the start of “Camp Gramma” next week, when I’ll get eased back into the fun with 2 of the four “campers”.  I’m working hard at staying healthy in every way I can, mind and body, and reading everything from Winnie the Pooh to Radical Remission (both inspirational!).   I plan to enjoy every minute of the grandchildren’s fun.  A busy summer ahead with many more opportunities for making memories.

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Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime.   I wrote a letter to the editor earlier this year.  I wrote again and it was published this time.  There’s a limit to the number of words, so I didn’t include everything I wish I could have.  Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement.  Testing your home is easy and cheap.  Abatement is done professionally and may be easy and inexpensive or it may be $5000.  Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

Neither here nor there

Neither here nor there, but where?  Not complaining, just explaining! This struck me when I saw two photos recently.  One from when I was very ill, but starting to improve after two months on crizotinib (targeted therapy drug for ROS1+ lung cancer).  The second, looking quite healthy, taken recently in the beautifully painted walkway, the Bridge of Hope that connects Dana-Farber with Brigham and Women’s.

It’s weird – this state of limbo (not the “place “Limbo!) that we Stage IV lung cancer patients live in.  It’s just so different from my mindset or life in general before cancer.  You see, lucky stage IV cancer patients are informed their disease cannot be cured, but can be treated, thus prolonging their life. (Some may just be told that it’s time to get their affairs in order.)  In my case when I initially asked if I could take my first targeted therapy drug crizotinib forever, my oncologist thought I meant that I thought I would now go on to live a normal life and die of old age at 100 as planned. So she felt obligated to say no and went on to say that some patients had extended their lives by more than a year on this drug.  (I know someone that just celebrated six years on crizotinib!)  Also in my case though, and I’d guess most, just to know you might be given the time you need to think about all the things you should have already done to prepare for the inevitable gives you hope.  Hope = Time, but does Time = Hope?  Probably. I’ll think about that.

But as I said, “It’s weird.”  I mean, really.  People thought I was a goner for sure two years and four months ago. I looked like I was and everyone knows the stats are dismal for Stage IV lung cancer.  And here I am now looking quite healthy.  I wonder what people think – cured? Nope, I wish.  Do you do like the song says and “live like you were dying”?  What’s that look like anyway?  I wouldn’t want to live the way I was during the few months we thought I was dying.  Now if it means do all the things on your life list – well, now that would be great if one is physically able to.  What’d we do?  Got two Nigerian Dwarf goats (complete with a barn at home and at camp), modified Camp Gramma by having a mom there to help Gramma, and tried to get back to a normal life.  Eventually I stopped teaching to focus on my health.  Not on my life list, not even the goats.  Alpacas were though.  I’m so glad we got our goats!  They are just wonderful, fun, loving, and very entertaining.  Alpacas are much more work.

Another weird thing – clothes.  I was just starting to replace things from the fire when I got sick.  Now I don’t want to invest a lot in things I either won’t be able to use or won’t get good use of.  Silly?  Maybe.  (For example instead of replacing my Marmot down jacket I bought a White Sierra one that will keep me warm for the short time I’m out in the cold.)  And then there’s the fact that since radiation I can’t stand certain clothes.  Or that when my tummy bloats I just want my comfy pants.  I’ve solved pretty much all of it by buying a few of a few things that are comfortable and presentable enough, and have no metal so I can wear them around and even to appointments and leave them on for scans.  Footwear is a challenge.  Still working on that.  Weird, right?  Being challenged by knowing what to buy for footwear when you’ve been wearing the same size shoe for 50 years? Whether it is meds or cancer, my feet are not what they were, and that’s weird.

Yup, weird.  Like being stuck.  Feeling ready to get back to really living, but not feeling quite well enough to.  Just when you think you know what this life can look like, something changes. I know that happens from time to time for everyone, but it is a way of life for Stage IV lung cancer patients.  And all the while life goes on normally around you as it should be and as you want for it to.

There are more examples, but you get the point. Neither here in the present fully, nor there in my past where I lived fully for 58 years.  Not really knowing how to think about the future (except to be hopeful), living for the present, but differently.  Yet I am grateful to be here, to have hope, to be able to enjoy the everyday every day.  I’ve had so many firsts since my diagnosis  – I think I’m more aware of them now. A recent first is watching a family of fox kits.  But I’ve had many others.  Things that being given the gift of time, the gift of being able to be home, and the gift of being “well enough” have made possible.   Some people, many really, with this disease are not so lucky as to be able to ponder its weirdness or to be given this gift of time.  And yes, TIME=HOPE.  Always, always have hope.

Oh, yes!  I have checked something off my life list that I bet I never would have if cancer hadn’t shifted my focus.  I’m in the midst of publishing a children’s book that I wrote in 1991.   Very fun to think about.  Written in my past life, being illustrated (not by me – ha!) in the present, it will be ready in the future!

Here I am enjoying the everyday every day with Dan and the family, and feeling ever so hopeful about the future.