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.

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