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.

Phone calls

Funny thing thinking about phone calls and this journey.  It was that phone call on my cell phone in a restaurant that first caused alarm.  Thursday (8/24/17) afternoon, sitting in traffic on 95 north of Boston, we were waiting for a phone call.  Usually my MRI and scans have been read by the oncology radiologists and seen by the oncologist before my appointment last thing in the day on my TEST DAY (MRI, Scans, BloodWork).  This time, the first TEST DAY since being in the clinical trial and on Lorlatinib, the oncology radiologist wanted the neurology radiologist to look at my MRI before making a firm statement.  Everything in the rest of the body was the same (radiation scarring, but not tumor showing in the chest, and same tumors, but no bigger on the liver), and the radiologist and the Dr. said the brain meninges changes are so subtle that all they could say is that there wasn’t any worsening – good news. I am glad they were doing this, just anxious to leave without REALLY knowing.

So, here we were, headed home, with the news that MAYBE the med was working.  Luckily for us, the research nurse understood that we really needed to know, and she said she would call us as soon as the neurology radiologist read the MRI.  She did!  Sitting in four lanes of stopped traffic, chatting about all the cars with just the driver and how many people were texting while driving, my phone rings through the car system,  True to her word, as soon as she heard she called, and the news was not to be dreaded, but hopeful.  A partial response to the drug after six weeks, 40% reduction in the “enhancement”.  Time to cry in relief, and then move on.

What will tomorrow bring?

Today is the end of cycle 2 of the Lorlatinib trial for me.  Each cycle is 21 days.  Labs, EKGs, and oncology visits are every three weeks; MRIs and scans every six.  Tomorrow will be my first scans and brain MRI since beginning the targeted therapy  drug Lorlatinib (compliments Pfizer and Dana Farber Cancer Institute).  After 16 glorious months on Crizotinib, it became evident that my dear friend Criz could no longer protect my noggin.  But, miracle of miracles, a clinical trial appears tailor made just for my circumstances. Lorlatinib not only targets ROS1 (my cancer mutation) in the body, it treats the brain.  You see, since March 2017 there has been increasing “enhancement” in my meninges on the MRIs of my brain.  So, the change was made and tomorrow is the day to see how this new friend, the one with few side effects beyond making me chubby, is doing.

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