Find Your Place of HOPE

First, again I received good news after my blood tests, scans, and brain MRI! Still stable. Such a great feeling! We made another day trip to Boston, with a phone appointment with Dr. Janne and a fellow. It’s so reassuring to have scans and within hours have your oncologist say he has met with the radiologist and reviewed my results. Knowing you have a team with the highest level of expertise and access to research taking care of you is invaluable. Life saving in my case in January 2016, and likely again when I had leptomeningeal progression. And, this marvelous team, which extends to the office staff, even worked through all my new insurance issues. I had to do nothing. I didn’t even have to change the tire when we had a flat on the highway (along with the other person that ran over the same sharp, unidentified object) on the way home. Thanks, Dan! (He drives, waits with me, drives, and always gets me there and back safely.)

When newly diagnosed patients ask what is important, I say that there are two things. First, find an expert, someone who specializes in the cancer you’ve been diagnosed with. And second, find a place of hope. This is my response after hearing so many stories of people with inadequate care, and/or doctors who offer no or little hope. The first may seem obvious, but is hard to find in rural parts of our country and many parts of the world. The second is often overlooked, but ever so necessary. I just can’t believe how many people are told that with stage IV lung cancer you should get your affairs in order and likely have a few months to live. No hope. This is so wrong. At Dana-Farber, even at what seems like the most hopeless time of your life, they give you facts and a treatment plan, and offer hope through what a successful treatment plan will do. No sugar coating, but clear hope offered in a kind and confident manner.

People often think I must be in remission or cured. Nope. Stage IV lung cancer can be treated, not cured. If you’re lucky, like me, to have a specific type (ROS1 in my case) that has been discovered and has a targeted therapy it responds to, then you can expect to be on your targeted therapy until your cancer finds a work around. For some, that’s a few months. For others it is a few years. For a very few, it is a decade! And, new treatments are being developed and tested all the time (a long process though).

In the meantime, cancer treatments have many side effects. I repeat this to be a voice for the many who may look “healthy”, but are actually living well (as I am) with a disease, or may be really struggling. Right now I have a slightly collapsed lung. Maybe it’s not just the high humidity that’s been bothering my breathing. This has resolved in the past, so I know it will again. And then there’s the neuropathy. One of the reasons I keep stitching is to keep my fingers working. They’re in sad shape. I drop small things a lot and can’t pick up small things easily. But I’m still stitching! The neuropathy has crept up my hands to my arms, and up my feet to my knees, but it is tolerable, no medication required. High cholesterol from Lorlatinib? There’s a med (or two in my case) for that. I’m sure you get the point. Just be kind and considerate please. We don’t know everyone’s story.

My latest art play, in addition to stitching (just started a Christmas fabric journal), is natural dyeing of fabric and papers, in addition to eco-printing. Started with onion skins because they’re always (in my experience) successful, and some purchased madder extract (because that is supposed to also be successful). What a great science experiment! Animal fibers (wool and silk) dye differently than plant fibers (cotton, linen, hemp), and each slightly different from the others. Lots of variables – pre treating, pH, mordants, modifiers, time, and so much more. Great learning for me. And don’t worry, I’m still making journals!

Our garden is doing well. We’ve had lettuce, greens, and peppers. Peas and zucchini soon, and then so much more hopefully! The blueberries on the mountain are ripe. Dan and I, the dachshunds and the goats are enjoying our summer. Finding joy in the everyday Every day.

I appreciate your continued support, love, positive energy, and prayers. I hope you are living well and finding joy in your everyday. Thanks for reading!

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

Normal must be overrated

Who really wants things to be normal anyway?  I never did, but then I didn’t really need normalcy before.  This normal isn’t new or normal in the typical sense, but it is my normal as I live with metastatic cancer.  And live well I must say.  To do so I’ve needed to develop many strategies and work arounds.  And I’ve had a lot of help.  But it’s all definitely worth it.  Quality of life really matters.  Maybe some of my strategies will work for others.

Learning and remembering your energy limits is important.  Kind of tricky too as it’s a moving target.  There are days I have great energy and some that I have a deep, deep odd tiredness.  Most days though I wake up, get myself going and go strong until noon.  After that?  Anybody’s guess.  I learned this week that I’m no longer able to push through it like I always did in my old life.  When I’m done, I’m done.  Kind of like a baby. And that is okay!  I prioritize and sometimes have bonus time for something more.

“Love what you do. Do what you love.”  I’ve always believed this makes great sense.  Well there’s lots of things I love, but can’t do anymore, or not yet in this “normal”.  That’s okay too because I’ve discovered I love lots of things.  So I’m focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them.  And I’m learning and doing new things too!  Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything.  I have four books going right now; one fiction, two health related, and one nonfiction nature-based.  None on education -that’s a first!

Shortness of breath, my huffing and puffing.  Haven’t really found good strategies except to go slow and steady.   Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.

And then there’s the digestive system issues.  When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes.  Carried my backpack everywhere.  That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available.  With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)

Lorlatinib brought some new challenges that I’ve referred to earlier.  One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes.  As much as I love to go barefoot, I cannot now, even in the house.  Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time.  I learned the hard way.  If you have hand neuropathy, try acupuncture – helped me tremendously.  I tried some of the ointments and cannabinoid oil, but I haven’t found something yet that I can say gives me relief from neuropathy.  Wearing gloves for any work and even driving, and keeping my feet well padded have worked best.  And, I just don’t stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother.  I’m so fortunate that I don’t have to try to work.  Luckily I’m a good sleeper, so it doesn’t bother too much at night.  Oh yes, and ignore the feeling that a tick is crawling on your ankles.  Or maybe not.  Probably just neuropathy, but best to check.  I spend a lot of time looking at my ankles!

Weight has been an interesting problem over the past 2 years, four months.  After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing.  Then as I became sick I began to lose weight.  By the time I started on crizotinib (March 2016) I’d lost more than 30 lbs. and I’m only 5’0″ and wasn’t ever terribly overweight.  Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc.  And, as far as clothes went, thanks to radiation I couldn’t stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops.  That’s been my preferred wardrobe ever since.  I eventually gained all that weight back when on crizotinib.

Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017.  Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree.   I started out gaining a pound a week.  Yes, one pound per week! Eeek!  And it was not simply that I was feeling better and eating more, or that I wasn’t able to exercise enough. But,  thanks to the stretchy clothes I just moved to medium, keeping in mind my “fire resolution” and bought only what I needed.  I was beginning to feel uncomfortable with the extra weight.  By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain.  From March 2016 to January 2017 that’s a 50 lb weight gain.  (Both pregnancies combined!)  Without even trying to lose the 30 or gain back the 30 plus 20.  Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that.  (I wrote about it earlier.) Paleo works for this!  I immediately lost 8 pounds and haven’t gained more.  As long as I feel “well” I can do this.  As I’ve learned, weight loss from cancer and treatment AND weight gain as a side effect are common.  I work with and around this by eating well and wearing my comfy clothes.

Finally,while trying to understand this “normal”, I think maybe the greatest lesson and the greatest blessing that I’ve gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn’t do anything for someone else and very little for myself when I was so very ill.  That’s when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you’re grateful to.  People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don’t feel badly asking for help or letting someone else do what I don’t have energy or strength to do.  I feel loved and grateful. And I like to look for things I can do that will brighten their days.

Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment.  Dan will drive and wait patiently for me every step in the day.  I will post an update, hopefully by the weekend.  The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.

Baseball and softball have started for the children. Fun times for grandparents.   Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

It’s the little things

Every day I’m reminded of how fortunate I am to be here.  Reminded in good ways that is.  Today Dan, the three little dachshunds, and I piled into the truck and went to the store to get important storm provisions, eggs and bananas.  Dachshunds love bananas.  When  I came out of the store and climbed back in with the dachshunds and Dan, tossing my three, yes three, bags of groceries on the floor, I suddenly was overwhelmed with wonder and gratitude.  I had just gone into the store, and carried out the groceries while Dan waited in the truck.

Two short, and very long, years ago I was so sick, barely able to go up and down the stairs, spending all my time in bed, not thinking or caring about groceries.  Dan had quietly assumed all the household tasks that I had done or we had done together.  All of them, every one.   I was unable to even notice that he’d done that.  Most of my energy went to breathing. No joke. Just breathing.

So it’s the little things, the things we take for granted, that I’m filled to the brim with gratitude about tonight.  Dan knew just what I meant when I climbed in the truck and was so very, very happy.  He says it happens to him all the time too.  Our life together has always been special, now we understand how much so.

Finding joy in the everyday every day is oh so easy for me now.  Those little things, they’re always there.

March 1, 2018 Health Update

The good news is IT’S ALL GREAT NEWS!  No, I’m not cured.  No, I’m not NED (no evidence of disease).  Don’t waste your time worrying about those things.  According to “my” oncologist at Dana-Farber, my brain MRI, CT scans of my chest and abdomen, EKG, and blood-work all look GREAT.  I won’t see the reports myself until next week for details, but GREAT will do.

Our morning started with a blood draw and IV at 6:30 AM at Dana- Farber. (Sent a pic of IV to our granddaughter in nursing school  who just successfully inserted her first IV) Then, after a brisk walk across the bridge, I had the brain MRI and the CT scans at Brigham and Women’s.  After those, it was a race back to Dana to the 10th floor for an EKG, vitals check, and appointment with the doctor and the clinical trial nurse. We finished all this at 9:55 AM. Record time I’d say, thanks to a new patient coordinator who booked my appointments overlapping one another.  Oops!  Everyone made it work just fine.

After the appointments we waited 45 minutes for my wonder drug Lorlatinib.  It is she who is in there day after day tracking down that nasty ROS1.  Lorlatinib is relentless in her work.  I am grateful to those who developed Lorlatinib.  With each drug developed we get closer to the time when lung cancer is managed as a chronic disease, until there is a cure.  I’m grateful to all the brave patients in the first trials of this and other drugs being developed for ROS1.

I continue to work on my part of the deal with Lorlatinib, keeping myself healthy.  This work includes: acupuncture for neuropathy, paleo diet for the nonstop weight gain (now stopped),  immune system support (advised by acupuncturist, approved by oncologist – some supplements were nixed by oncologist due to unknowns of drug interaction), and energy healing meditation/practices. Soon will be increased time outside.  It’s a full time job, staying healthy, but it’s paying off.  I’m not just alive, just surviving, I’m thriving, and feel well – all things considered.

So, after a whirlwind trip to the city (traveled there yesterday), we arrived home at 4:30 PM.  Dan does a lot of driving and waiting.  It can’t be easy.  We’re a team, he says.  He’s a wonderful man.  And now here we are, back to finding joy in the everyday every day with the family, three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

 

 

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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Road Trip!

Believe it or not, but Dan and I love our road trips to Boston every three, six, or eight weeks.

Ever since I moved out of the middle back seat (wedged between two grumpy siblings), I’ve loved road trips.  My mother-in-law, daughter, and I went on countless trips: day trips, overnight trips, shopping trips, college trips.  It didn’t matter to any of us the purpose, we just loved going together.  Once we traveled across three mountain ranges in winter in a Geo Metro to visit colleges – now that was a trip.  Dan and I always took the kids on a road trip somewhere in New England in April.  Boston, Mystic, Sturbridge, Springfield, Dinosaur State Park in Rocky Hill, CT – that was exciting to the young expert in the family.

Even before we got the cancer diagnosis, Dan and I knew that if ever we did hear those dreaded words, we would go to Dana Farber Cancer Institute, five hours away.  Road trip!  That would be the easy part – we know how to do this.  Our first road trip to Dana Farber included Dan, me, and my sister – my other caregiver.  We were on a mission, the only known was the destination.  We booked a night that quickly became a few as we jumped on the train of the cancer journey. Since then there have been countless (not really true, but I haven’t counted them) road trips to Boston.  Most of them are just the two of us (Dan and me), but some have included my sister or our son, and once we (my sister and I) made the trip without Dan. Early on, for some I was pretty sick and spent the drive sleeping, so I “missed” those trips.  After trying a couple of routes and a couple of different hotels, we’ve settled on what works for us.  We’re lucky that we’ve got a good car for traveling, and the funds for gas, an overnight stay, and meals.

Road trip!  Let’s enjoy it.  Enjoy it?  Two days of being on the road and at the hospital? (We don’t feel we can take more time away and sightsee, etc. because our three little dachshunds and goats miss us!)  But, enjoy it knowing that it’s traveling and a day of tests and appointments?  Really?  Well, why not? So we do!  We’ve got it all down. My appointments are on a schedule (8 weeks, 3 weeks, or 6 weeks apart).  Our suitcase stays packed with the extra change of clothes, travel toiletries,  and coffee and tea supplies.  I try to remember to book our room several weeks ahead. Our daughter is alerted of the dates for pet care.  The day before the road trip I finish the packing.  And then we’re off!

Just imagine having five hours of uninterrupted time with your best friend!  Heavenly.  What would it have been like years ago if someone had given the two of us “all expenses paid” trips every few weeks?  Heavenly!  Well, we have this road trip we have to do and pay for, so why not look beyond the reason?  We spend the drive time talking, and even though we’ve been together over 40 years, we love to just talk, about anything and everything. When we feel like stopping to eat or take a break we do. Now that we have our favorite route, there’s always different animals, seasonal changes, and such to notice.   Like turkeys in Brookline.  True story. They live amongst the most beautiful homes, right in the city. And then there’s Dan’s favorite little school to look for, a childcare/preschool.  Often the children will be out with Mr. Rope on the sidewalk in Boston, just like my daycare children when we walked around Blue Hill 30+ years ago. (Just like and so just not like!)

Then we arrive, usually mid to late afternoon.  (Sometimes we leave really early for an afternoon appointment, but usually we get  there one day for an early morning appointment the next day.) We park in the hotel parking garage, relieved to not have to take the car out again that day. We check in and have a cup of tea and a little rest. Pretty nice!  Watch a little TV or watch the city streets out the window.  Interesting.  Then we decide where to eat dinner.  Choices are numerous, especially with delivery, but we’re creatures of habit, so we choose between the hotel restaurant and the Italian restaurant near Children’s Hospital.  Almost every time we go to the Italian restaurant we are seated in the same spot. No joke. Corner booth. What is it about us that makes this happen? Maybe we look like hicks from Maine. Or weary hospital visitors. But I prefer to think we look like lovers wanting to be left alone to stare dreamily into each other’s eyes.  After dinner, on the walk back, is when we do our people-watching.  It’s always interesting to see all the people rushing to their destination, never stopping to even nod a greeting to anyone.  Such a different world.  And then, after dinner we have until the next morning to enjoy our trip, pushing it’s true purpose from our minds.

The next morning the alarm goes off early enough for showers and packing up.  Our appointments will last long beyond checkout time.  Depending on how early we need to be at Dana Farber, we try to eat (or just Dan eats) at the food court or the cafeteria before heading to appointments.  Here’s an example of a typical appointment schedule. First drive one block to Dana Farber and park underground usually at least four levels.   6:30 AM arrive at Dana Farber D3(3rd floor) for Brain MRI. This means taking of everything but my undies, putting on a johnny, having an IV put in that will stay in for a few hours. Then into the cold room, and getting up on the table in the right spot, cushions beside my ears, a “hockey mask” clamped over my face, and into the tube I slide. Halfway through I’m slid out to put the contrast dye in my IV. After listening to some pretty strange and very repetitive noises, I get out, dress, and go find Dan.  Dan waits the 50 mins or so (reading,  texting, looking up sports stuff on his phone).  As soon as I’m out we rush to the elevator to head down to floor L1 (lower level, underground) for a 7:40 AM appointment.  We are there for a while. That appointment starts with a blood draw (from the IV they put in for the Brain MRI), followed by a bottle of the most delicious drink that I must drink in 30 minutes. Wait for my turn.  Then the CT scans of my chest and abdomen.  As long as I wear no metal, I can keep my clothes on, no johnny! Those scans are quick. Lie on the table, a couple of scans, inject the contrast dye into my IV, two more scans, and off I go, with a reminder to drink lots of water.  Dan, he’s been waiting.  But during the time I’m drinking the stuff, we’re enjoying our time, talking about home, something in a magazine, just talking. (We’ve figured out that we both just want to be together, regardless of the circumstance or situation – whatever it is, we’re together!)  After that appointment is done (takes 2 hours total sometimes), we check to see if there’s time to stop at the cafeteria on for a snack (I’ve probably not had breakfast) before heading to the 10th floor where thoracic oncology is.  On this day we do! (This is for real in two days – we’ll see if I’m right!)  10th floor 11:00 AM EKG  This has something to do with being in the Lorlatinib clinical trial. I can’t take my med on this day until after the EKG and Dr. appointment.  For the EKG they stick electrodes all over you that read the electrical activity of your heart.  The EKG is followed by “taking vitals” (blood pressure, temp, weight, O2, heart rate). Then we wait for the appointment with the doctor, research nurse, and program coordinator, scheduled for 11:30AM.  We decided a long time ago that we would never grumble if appointments at DF didn’t happen when scheduled.  It runs very efficiently compared to other medical facilities we’ve experienced.  If our appointment is late we know it is because another patient or family needed their time.  We can wait.  We are grateful to be there.  If all is well with the morning’s tests, the appointment is really just a check-in about side effects and symptoms.  When it is over we have our last stop at the pharmacy on floor 2 to wait for the medication (one cycle/3 weeks’ worth only). Finally we’re on the parking elevator headed down to the floor that we now always remember we parked on.  If lucky on this day that starts at 6:30 AM, we’ll be on the road again by 1:30 PM.

That was one long paragraph! Well I thought about writing it as one very long run on sentence.  For me, that is how it feels. Nonstop.  No time to take a breath, even with the waiting we might do.

And then Dan drives us home.  Very long day for him.

Once out of the city we talk about the appointment and I send texts to let the “kids” know how it went.  Then we decide when/where to stop to eat, fill up with gas, etc.  I try to stay awake to keep Dan company – it’s the least I can do for my chauffeur/caregiver who won’t let me drive.  Dan calls it Driving Miss Rinnie!  All I know is that he must truly love me.

Five hours later we pull into the driveway, hearing a chorus from all sides of dachshund barks and howls mixed with the bleating of Naughty Dottie and her sidekick Matilda.  Home. Together.

Three weeks later…

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