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!

 

The “Fight”

People talk about “fighting” cancer, “courageous battle” with cancer, and similar terms.  I don’t really see it that way for me personally.  I don’t see myself as “fighting cancer”.  There’s a real battle going on inside me, no question, but my role is somewhat removed as I see it.

cancer crept into me and grew slowly over time.  (lowercase “c” intentional) It happened while I was in the best physical condition of my adult life.  Then, somehow (I’m still not clear how), this cancer guy named ROS1+ hopped into the cancer driver’s seat.  That lazy cancer that was creeping through me took off, with ROS1+ as driver, like the energizer bunny! Zoom!  Whoosh!  Doing donuts in my left lung and heading off to the liver land.  I don’t know how that cell mutation happened, and for my purposes now, it doesn’t matter. (Figuring it out for others’ future does matter, and I hope researchers at DFCI can learn from my journey.)  All I know is I was going along my merry way, climbing mountains and playing with children, when something happened.  And that thing, at that time, was good ole ROS1, putting the pedal to the metal.  Who knows how long I had gone merrily along my way with cancer growing in my left lung hilum, where some pretty important stuff happens, or how much longer it would have taken to show up if ROS1+ hadn’t jumped in.

Okay – the “fight” and how I see it.  I believe the fight is between my medication and the cancer.  My body is where the battles take place.  The many doctors (radiologists, oncologists, neurologists, pathologists) at DFCI are monitoring and assessing all the battlefields, and making decisions based on those assessments – they’re the generals.  (Ultimately I’m Commander in Chief, but I’m a wise person and they know what they’re doing!)

The generals sent in my first hero Xalkori Crizotinib, and she was brave!  She fought back cancer and I could breathe.  My poor little left lung re- inflated! Xalkori hunted down ROS1+, tied him up, and sat on him.  (Sorry, just sounds like a male name.)  ROS1+ cancer was still for months, a year even, until finally one night as an exhausted Xalkori slept, cancer tiptoed past the Blood Brain Barrier to my meninges.  No joke, that’s how I see this! Time for the generals to put their heads together for a strategy meeting.  The outcome?  The next weapon!  Lorlatinib.  It not only protects the body like my friend Xalkori, it boldly crosses the Blood Brain Barrier, hunts down, and attacks cancer as it sneaks around and around my brain, looking for places to settle.  The generals’ plan is that Lorlatinib will cause the cancer to retreat to a point where cancer is again contained and managed, never to escape again.  Just weeks into the battle I can feel the battleground shaking.  Lorlatinib is powerful!

Now, I’m not letting myself off the hook or being passive here – I have an important role too, just not in the heat of the battle, sword to sword.  That would be too exhausting,  to be in fight mode all the time.  My job is to strengthen the fortress, to give the generals and the warriors the best support I can so they may win each battle, and so, I don’t see it as “fighting” – on my part anyway.  My work is essential to the battle, and it is both joyful and exhausting.  Believe me, I want this cancer gone, but that’s not what’s expected, so I see this as a journey.  Medically, it is managing a chronic disease. I’m in it for the long haul, a marathon, not a sprint.  Likely more battles such as the ones described above will occur in my body, maybe many.  Hopefully a time of quiet management will come soon and last a long, long time, with the ever present sentries scanning the skies, land, and oceans of this body for cancer.  I will be living life, taking the best care of my mind and body that I can, supporting the work of DFCI and its staff.

Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

Below is a short video of my oncologist with Bonnie Addario, both heroes.  He is the head of Thoracic Cancer at Dana-Farber Cancer Institute.  She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation.  “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ”  The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)

Dr. Janne and Bonnie Addario

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.