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.

Whose lung cancer is this anyway?

While it is my body that is site of this chronic disease disaster, it impacts so many more in so many ways.  Even I don’t talk about it as “me”, but in a recent interview kept referring to “we”, meaning Dan and me, the “we” we’ve been since I was 16.  My body is going through the physical process and getting roughed up pretty badly by the cancer and the treatment, but the physical and emotional impact is on “us” and reaches all of our family (children, grandchildren, siblings, close friends) as well. For example,  “we” go to Boston (now every three weeks) for two days and everyone else needs to care for our dogs (3) and our goats (2), and sometimes our boats (true!). So, for us, this is “our” disease.

Throughout the early months of 2016 we were deep in learning about metastatic lung cancer.  You might think I would know about it since it is what took the lives of my father and his father.  But that was then and this is now, and now is such a better time to find yourself with this diagnosis.  We knew one thing – even though we’d never been there, for us, Dana Farber Cancer Institute is where we wanted to be treated.  So, for our family this means going to a treatment center five hours away.

On our first trip to Boston (which started at BWH due to not yet being officially diagnosed) “we” meant Dan, my sister Nada, me, and my body.  (I think I might have made hotel arrangements, but maybe Nada did – see? “We”)  After short appointment at BWH, we were referred to a next day appointment at Dana Farber. “Good, they’ll see us! Oh, now we’re staying, and what does that mean?”  Well, really it meant for me, that all the others who make up our “we” jumped into action – they already had – and just magically (to and for me) made things happen.  Mandy and children took care of two dogs, Tim and family had the other.  Thankfully, that winter was Pre-goats.  Nada took care of arrangements in Boston,  and Dan took care of me.  Me?  My head was in the game, my body was definitely not, and “we” were just trying to get me to the point/place where we could find some help and hope. Thankfully, both came quickly at Dana Farber.

I don’t know when I truly realized that our life could never be like it was before cancer.    Despite our advancing ages (ha!), WE had plans, physically active plans, and goals requiring that we be able to do things that it is unlikely my body will be able to do.  So because of our disaster that’s happening in my body, WE have adjusted those plans, set new goals.  Some of those goals have to do with treatment of course, but many are modified goals from the past.  We are ever so grateful for the things we did do together while our bodies were both healthy and strong.  Will we do backcountry backpacking in Grand Canyon again and take the grandchildren as hoped?  Nope, but my body is well enough that we could do a family trip to Grand Canyon (or anywhere we choose) and some can hike while others sightsee.

Both years since cancer became part of our family’s plans we’ve taken our family trip to Spencer Pond Camps. And for the kids I think this second year seemed pretty much like the years before cancer.  For Dan and me it is different, with more careful planning to assure that I can get the rest I need, that others do things I took care of in the past.  But, “we” are determined to do what we can while we can.

Another big way this lung cancer has changed our life is financially.  Thankfully I had very good insurance as a paid benefit through work.  But now I’m unable to work and on what in my world of  state/teacher employment is called retirement disability, and paying for that really good insurance with the very high premium while earning significantly less.  We know we will easily meet the deductible early in every year. Every time I have scans it is several thousand dollars. Our deductible and co-insurance are higher because of our choice to self-refer and go “out of network” to Dana Farber. (For us “in network” is Maine, but at least our plan will cover out of network.)    Travel, lodging, and meal expenses all add up.  Dan takes days from work as well.   We share the burden of this lung cancer in so many ways.

I am ever so grateful I have a “we” to share this burden.  I’ve met other patients who have no family close to them, who rely on friends, neighbors, or are alone.  I don’t have any understanding of what that is like.  Having this support system is what keeps me going.  I’m not going to let “us” down.  Because I know how hard everyone is working to help me,  I am determined to do everything I can both with my health and in being the best person I can be.  While I am sad, as are we all, that “we” are on this lung cancer journey, I find joy and happiness all around me everyday, and I share/spread this with the rest of “we”.  Please remember, it is essential to “give some love” to everyone on the journey, not just the patient.