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…

cancer Stinks!

There are words I intensely dislike, and so I don’t use them.  But, that’s not what’s happening here in this title.  What I really mean to say is that cancer stinks, yup it smells really bad. When I was the most ill, everything that came out of me (in any way) smelled REALLY awful.  My breath, my sweat, my flatulence, … everything.  Not that body odors are usually sweet smelling, but I’ve never been a particularly stinky person.  (Well, the me before cancer I mean.)

This all came rushing back to me this weekend when I was ill.  I’m much better now, but I had some virus going around with everything from body aches to diarrhea.  And back came the stink full force!  I know it wasn’t my imagination, it was the same odor, the cancer stink.  Now I’m not saying my illness this weekend was cancer related, but it smelled the same.  Probably no research on this and now that I’m better I smell better!

One cancer stink doesn’t really go away – the flatulence one.  I know everyone’s toots stink, but cancer toots top ’em all.  Don’t believe me?  You could ask Dan or my grandkids, but they might be too polite or kindhearted to answer (even though we joke about it). Just ask my dogs.  Especially the two that sleep under the covers, against me.  You get the picture.  My dogs are very forgiving.  cancer stinks.

When I was first diagnosed I remember apologizing to Dr. Gandhi for my exceptionally stinky sweat.  She was the one who confirmed for me that it was cancer stink.  On that day I was too busy trying to stay alive to spend more time on the topic with her, but I wish I could.  (She has since left Dana Farber.)

I know I’ve read that dogs have smelled their owner’s cancer before diagnosis.  I’m quite sure my dog Rusty diagnosed me way before anyone else – he knew how sick I was before we realized it – maybe it was the cancer stink.  He was very attentive this weekend, so maybe he smelled the cancer stink too.

All I know for sure on this one is that cancer STINKS!

 

 

Before cancer Me, Living with cancer ME

This is a rambling post.  I’ve worked on it off and on for a few days, when I wasn’t too busy making pickles or watching soccer.  It makes little sense to me, but maybe it will to someone else or someone someday or me someday.

Sometimes I feel as though I’ve had two separate lives – the one that lasted 58 years and two months, and the one that I’ve lived since our house fire.  I use that date of the house fire instead of my diagnosis date when I think about this because that’s when I began to feel ill.  Had the cancer not been creeping in, and then racing through my body, I’m quite sure we would have recovered from the house fire just fine. But it did, and we didn’t, not fully.

Here’s what got me thinking about this today.  Another lung cancer survivor posted this question: “Have you ever thought about taking your next breath?”  My response: “Top of Mt Kilimanjaro 2012, and lying in a bed in Boston before my targeted therapy drug 2016. Two very different experiences. ” That response kind of shook me up.  Huh..  Wow.  That’s so much more than the highs and lows of one’s life.  It is two different lives.

But not really two lives, it can’t be, because all the conditions around us are the same as they’ve always been, and most of the time everyone around us does what they’ve always done or even moves on. So, what then?  One life interrupted?  No, it’s not like my life is on hold and will return to what it was.  It’s a really weird phenomenon perhaps.  You’re going along with all of life’s ups and downs that are expected as one moves through “middle age”, your house fills with smoke, you get diagnosed with metastatic lung cancer,  you’re really, really sick, and you live.  And you keep on living. But not the same life and now you have to figure out what to do in this life.

In that other life, if we’d had a house fire we would have replaced all the backpacking and camping gear because we would have used it.  In that life we had plans, and the fire would have been an interruption.  Plans that won’t be realized in this life, because it’s not the same life.  In this life we’re making the plans we should have made in the other life, and “getting our affairs in order”.  Important stuff, but not the same as the plans we were making in the other life, plans that were months in the making, that took us to new places, climbing to new heights or depths in the case of Grand Canyon.

I’m not complaining.  I’m REALLY glad to keep living in this life.  It’s just weird.  No time ago, in that life, a few of us were going to the Y doing a daily workout that I intensely disliked, but that I could do, and it included hundreds of things like burpees, squats, lunges, sit-ups.  In this life I had radiation to my lung, and it caused fibrosis in that lung (along with other nasty things ).  In this life, I’m doing squats from a chair and push-ups against the counter, and I’m huffing and puffing. I walk 20 minutes and get to a hill, and… huff and puff.   But, I’m doing it – I couldn’t when I was really sick – and I know it will make me stronger.

In this life our plans revolve around trips to Dana Farber, and the news we hear there.  Planning for months for something exciting in the future just doesn’t make sense, but maybe it will. Maybe.  Hasn’t yet.  In this life we’re not yet comfortable with knowing what next week may bring, let alone make plans for months from now.  But that’s not to say that I don’t have goals and milestones to reach.  Sure I do!  Grandchildren provide so many opportunities.  Our future is filled with such events that I expect to attend.  Complicated and weird, plan, but don’t make plans, or make plans, but don’t plan on it.

This afternoon I felt that I was in my old life, cheering away at a soccer game.  And then, at game’s end, I pushed myself up from the chair that I should have just hopped up from.  Oh yeah, right. New life, new rules.  Huff and puff back to the car.  Not complaining.  I’m alive and very active, all things considered.  And my plan?  Keep on getting stronger and polepole breathe, wherever I may be.

In this new life I’ve recently gone to my first horse show and I met a very sweet praying mantis in the garden, and last year I became mom to two Nigerian goats Matilda and Dottie.  Things that didn’t happen in my old life. I am happy and have purpose in this new life.  Weird.  polepole breathe!

Too busy making pickles to worry about dying

For someone with a terminal disease who statistically shouldn’t be here, I don’t think I spend much time thinking about dying.  It doesn’t upset me to think about dying, but I’m really much more focused on living.  I’m way too busy to spend much time on the negative “what ifs” of this journey.

You see, I’ve just been given this wonderful opportunity to spend almost all of my days doing whatever it is that I choose to do.  While I may not be well enough to do everything I may enjoy or want to do or sometimes think I need to do, there is so much I CAN do.  Thanks to the doctors at Dana Farber and the clinical trial targeted therapy drug Lorlatinib, I feel quite well.

So instead of taking me down rapidly as this cancer named ROS1+ intended to do, it has provided opportunities that I may not have had or would not have taken advantage of.    These opportunities are both tangible and intangible, and infinite I imagine.  And so now a new path on the journey has just begun.

It began on that first day of school when it seemed like everyone else was going somewhere and I was not.  No real plan, no real reason to do anything in particular.  Every day could be a new adventure.  I could read all day.  That’s very satisfying.  I could sleep all day.  No, not unless I’m very tired.  Or, I could bake! Oh dear, we’ve just completely stopped eating sugar, and are reducing how much wheat we eat.  No, no baking for now.  Well, how about making pickles? Haven’t done that for years and we’ve still plenty of veggies.  Pickles it is.

Pickle making is science and art combined, a beautiful experiment each and every time, right up to the moment your guinea pigs (children, grandchildren, and other willing relatives) take the first taste.  Since I started making pickles a few weeks ago I’ve made sour cucumber, garlic dill cucumber, bread and butter cucumber, ripe cucumber, garlic rosemary tomato, garlic dill summer squash, and bread and butter summer squash.  Yup, it’s true.  I’ve been making pickles!  I’ve used tried and true recipes passed down from my grandmother or Dan’s mom, and ones I’ve found online.  Some have been quite popular, others not so much, but all have found a home.IMG_2526.JPG

Now pickle making isn’t the only opportunity I’ve taken advantage of.  I’m part of a trio (and that number may grow any day now) that goes on NOW WE CAN adventures.  Now we can, and so we are!  We’ve traveled near and far (nah, not really far), so far going to the Orono Bog Boardwalk, Common Ground Fair, and Nervous Nellie’s.  Just the names make you know we had fun! Here’s some proof!OLYMPUS DIGITAL CAMERAIMG_252822046080_10211986642014460_7954483629869582552_n

And then there’s the hundreds of soccer and baseball games I’ve been to this fall.  Last year cancer kept me from going to many of the kids’ games, but now that cancer keeps me from working, and I’ve started Lorlatinib, I have energy enough to go.  So, go we do!

And on and on it goes!  None of us know what may happen in life, and I certainly never know what news the next scan  or MRI may bring on this cancer journey, but right now I’m just too busy finding joy in the everyday things of life to worry about dying!

 

 

The New “Normal”

I am ever so grateful for my ROS1+ FaceBook group and my fellow ROS1ders.  They are my greatest source of information, inspiration, and support (outside of my network of family and friends).  In addition to this group, I follow several blogs of fellow lung cancer survivors, groups, and foundations.  From all of these sources I glean varied things that help me in a multitude of ways.

After we began this cancer journey, and I’d completed radiation, started Xalkori and begun to regain strength, we were finally at a place where we could stop, take a deep breath (well, Dan could – not so much me…), and reassess where we were.  That’s when we began to hear the term “New Normal”.  I know it is meant to be a helpful term, I think it’s a way of saying that you can find normalcy in this world of cancer.  I think it helps people think of managing a chronic disease or living with metastatic cancer as a change in how things are done that can actually feel normal.

I’m fairly certain my first few months, as hard as they were, were much easier than many in my condition and situation because of Dana-Farber doing the genomic testing that found my ROS1+cell mutation.  Instead of chemotherapy , after my radiation I was given a targeted therapy drug, a pill taken twice a day.  So while Xalkori(crizotinib) was shrinking the tumor, my ribs were healing, my esophagus was recovering, and I was slowly regaining strength.  That’s when we tried to embrace this concept of New Normal.  Yes, we settled into new routines and adapted to the changes quite well.  Taking a backpack with a change of clothes, Imodium, and adult wipes with me whenever I leave home has become my normal.  Taking medication regularly, something I’d managed to escape in 58 years, has become normal. But, try as hard as I can, I do not think of our everyday life as normal.

Normal: (noun) the usual, average, or typical state or condition. (adjective) conforming to a standard; usual, typical, or expected.

We (my support system) do an incredible job of living life fully and finding joy in all the normal things of life.  Yesterday Dan and I had the chance to “high five” three of our four youngest grandchildren at a soccer event.  The fourth was playing baseball (we watched him last week and likely will next week).  Upon seeing a pic of her little brother playing soccer, our eldest grandchild spoke wistfully of “those times” while at college studying.  That’s all normal!  It’s what our family does.  And, Dan and I find lots of “normalcy” in our days at camp, seeing the sun rise and set, happy and in love as we’ve been for well over forty years.

Maybe I’ve made normal a “feeling” and it really shouldn’t be.  But I refuse to think of some aspects of this journey as normal.  Especially, not my normal. Things from the complex to the very simple.  For example, hurrying up the hill.  I’m convinced it is not normal to huff and puff going up our hill.  That may be what happens to me right now, but even for me, in my condition, it isn’t going to be my normal.  You see, I’m going to get these lungs in such great shape that I can run up that hill with no puffing!  Okay, so maybe that wasn’t as simple an example as I thought.  Here’s another – that cloud that hangs over you when you have metastatic cancer and you have scans every six to eight weeks to monitor medication effectiveness or disease progression.  Now really, does anyone consider having to deal with that normal?  Yes, it is now a routine that we’ve figured out how to manage without it intruding upon everyone’s daily life too badly, but normal?

All in all, we live a pretty ordinary life. It’s an incredibly rich life, filled with joy.  That has only been enhanced by this cancer journey.   My new normal?   Being present, joyful and grateful every moment of every day!

 

First Day of School

Today is the first day of a new school year.  And where am I?  Making garlic dill pickles and sitting on the deck here at camp, with my feet up, watching the seagulls.  Weird.  That’s how it feels.  Weird.  I shouldn’t be home, you see.  I should be at school.  In my classroom, with my students.

While cancer can’t stop some things (Camp Gramma!), it has stopped me from doing one of the things I love – teaching and learning with children every day.   Today is the first time in a very long time that I wasn’t directly impacted by the first day of school.  Why, even when I was a toddler, my older siblings left me on the first day of school.  Then, I went to school for years.  I took a six year break from school while the children were growing, and then spent years with them being in school.  While that was happening, I went back to school and became a teacher.  From there, I’ve not missed a first day of school.  That’s a longstanding tradition.  A tough one to try ignore or think of as “just another day”.  It’s THE FIRST DAY OF SCHOOL, and it means something to me.

Last year I tried to work 60% time, and I think did so quite successfully until the end of May.  I know it was important to me that I be there, and I hope my students benefited from my presence.  I appreciated my school administration’s willingness to let me job share.  I’m grateful to Andrea for being my longterm sub through my sabbatical and my illness.

So it was, in May 2017, we got confirmation that cancer had crept past my magic friend Xalkori (crizotinib) and we would need to move to the next line of treatment.  Yeah, I already knew – we’d been watching the beast creep in, and there were symptoms for a couple months, but now decisions had to be made, appointments were scheduled, “cruise control” shut off.  Time to apply for what, in the world of Maine teachers, is called “retirement disability”.

The term “retirement disability” really bothers me. It has nothing to do with retiring, and is about accessing that retirement fund for disability.  I wanted to retire on my own terms, when I was “ready”.  Retirement should be joyful! I was occupied with completing forms to giving permission to MainePers to access my medical records so that someone could judge whether I was disabled enough to qualify for benefits.  It was not the retirement I had envisioned. (I am though very grateful for having benefits to apply for, and access to health insurance.)

Back to today, the FIRST DAY OF SCHOOL.  Today, I am joyful on this first day of school.  The paperwork stuff (another story) all worked out.  I had a wonderful summer of teaching and learning with children all summer.  I am here in the place that I love for longer this fall than if I was back to school today.  And, even if it’s not every day, I know I will be with children learning and playing, either with the grandchildren or volunteering in my dear friend Kathy’s classroom.  It’s the first day of school, and I’m drinking my afternoon tea.

 

Lung Cancer can’t stop Camp Gramma!

This lung cancer cannot stop a Gramma from doing what she loves.  And what does a Gramma love to do?  Play with her grandchildren of course!  And we don’t just play GO FISH and OLD MAIDS – although I do like those games.  All my life I’ve played and learned with children, as a child, a parent, a teacher, and grandmother.  I can’t imagine not finding a way to continue.

For the past few summers I’ve invited my four grandchildren to spend the day playing at our camp multiple days per week.  It began, I think, as a way to help with childcare, a way to spend time with them since I’m much more available in the summer, and a way to be sure to share with them the most special place in the world, the Salt Pond, Sedgwick, Maine.  It’s also the perfect way to assure that I will be able to play in the summer!  It has become one of my very top reasons to not only want to carry on, but to keep myself in as healthy condition as I can.  You see, keeping up with two nine year olds and two eleven year olds as they explore, create, play in the fields, woods, and ocean, is not for most grandmothers, very few I imagine. Even our camp counselors (their mothers who take turns playing with us) have a tough time keeping up with Gramma and the campers.

I began on my first targeted therapy Xalkori in March 2016.  I’d been really ill, had radiation, coughed until I’d collapsed my lung and broken two ribs, and lost 30 pounds.  The drug started helping right away, but I’d been quite weakened by everything.  And, now the children were starting to wonder about Camp Gramma.  “Will we have camp this summer Gramma?”  Of course I wanted to, but I don’t think any of us, except the campers, really thought I’d be up for Camp Gramma by mid June.  But Grammas are tough old birds.

Again, my family rallied around me.  If I wanted to do camp, others would help make it happen.  That year, last year, we decided on three days per week.  Every day Gramma would be joined by a fellow “counselor”.  My daughter Mandy did one day, daughter-in-law Jenny did one, and granddaughter Jasmine one.  Back-up plans were in place and fingers were crossed as we approached June.  Everything went as planned, perhaps better and Camp Gramma was in business.  Lung cancer never took a minute away from the campers.  They hiked, swam, built forts and fairy houses, played with the goats and in the field, and so much more!  The summer of a lifetime for all.

This year we did something similar.  Our final day for the summer was just a few days ago.  It was a perfect summer.  Yes, we missed some Thursdays because Gramma was in Boston for scans and appointments.  But we didn’t let cancer stop us from having a great time.  We swam, kayaked, hiked, played with goats, gardened, played in the field and forest, picked cukes and made pickles, played board games, learned about macro-photography, made goop with friends, cuddled with cats and danced with dachshunds, and when all was said and done, we ate ice cream.  A perfect summer!

Gramma and her campers are oh so much stronger than lung cancer.