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!

 

Nice to be Loved!

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On November 5, 2017 in the very early morning my sister Nada was one of several family members and friends to make a two hour drive to participate in the annual Save Your Breath 5K Save Your Breath 5K FaceBook, a run to support Free ME from Lung Cancer.  It was her birthday.

A few weeks earlier Nada and her daughter Betsy had decided to get together a team in my honor.  Pretty nice!  The team was named for this blog, Team polepole.  And then, t-shirts were made for all eleven team members.  Not just any t-shirts, but hand tie-dyed t-shirts with polepolebreathe.blog ironed on each by Nada. Even nicer!

So on that brisk Sunday morning some of us ran and some walked a shorter distance.  While we were raising funds for Free ME from Lung Cancer, we were also showing support for the lung cancer community; those living with lung cancer, survivors of lung cancer, and also honoring lives lost.  It felt special, much like our family participating in the Komen run in my mom’s memory.  Only different.  Different for a few reasons.  First, our team was participating in my honor.  Wow. Second, while there were quite a few runners, there simply is not the same kind of societal support for the lung cancer community.  Humbling. Next year I’ll ask that we run/walk in memory of my dad too. We can now see beyond the stigma and understand.   It’s important that we try to teach others.  Too many are dying (433 Americans per day) because of that stigma.  Another reason that day was special?  My sister’s birthday of course!  I felt honored she chose to spend it in this way.  And honored that so many others did so too.

After the race Team polepole had breakfast together.  The busy restaurant was perfect for our noisy group.  The birthday girl polished off a large platter of strawberry crepes.  We’re in the business of making memories these days, and I’ve great memories of that day from seeing Team polepole and cheering on the runners to the breakfast chatting.

A final note – At the SaveYour Breath 5K I met Dave Eid, sportscaster at WGME in Maine. Dave’s wife Lisa is a fellow ROS1der, and Dave is on the Free ME from Lung Cancer Board.   Just after my grandson finished the race (beating his mom!), Dave had arranged for us to be interviewed: News interview

 

 

Sharing the Journey

I can’t imagine traveling this cancer road alone.  No one should ever, ever have to.  I’m so very grateful that I’ll never have to.  In fact, my family has grown through this journey.  This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I’ve never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+.  This family has nearly tripled since I found it, and is worldwide.

The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone’s specific information, but  I can share what makes them my “family”.   Most, but not all, have lung cancer. Most, not all, have metastasized cancer.  Most, not all, have been on the drug  Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey.  Many, maybe most, are younger than me, many with children at home.  Many have had treatments that I’ve not had.  Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders.  All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member.   Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing.  Beyond that even, there’s just such a feeling of empathy and sincere caring about one another’s well being in the group.  In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.

I’ve tried to think what it is that makes this family so very special compared to other organizations I’ve been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH.  The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family.  Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern.  It is a safe place.  This is a difficult road to travel.  Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered.   Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.

My ROS1der family, a FaceBook group. Who knew I’d find such camaraderie in such a place.  Huh.  Another of the countless blessings that have come my way on this journey.  May every human needing such a place, find theirs.

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Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

Below is a short video of my oncologist with Bonnie Addario, both heroes.  He is the head of Thoracic Cancer at Dana-Farber Cancer Institute.  She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation.  “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ”  The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)

Dr. Janne and Bonnie Addario