Extraordinary!

IMG_3932Tonight my feet hurt and I don’t mind. Even though I searched all year for the best hiking boots for neuropathic feet, I expected my feet would hurt some.  It was worth it.  My tolerance for what cancer and my meds are doing to my body has certainly changed over the 3.5 years in this journey.  Especially  with the neuropathy, fatigue, and “huffing and puffing”.  Funny what you can get used to. So too has my overall outlook toward expectations of myself.  I’m much more accepting of this change in abilities now, even as I continue to challenge myself to stay strong and healthy, body and mind.

In 2012 when we climbed Mt. Kilimanjaro, we did so because of a documentary in which they said that climbing the tallest freestanding mountain in the world is an extraordinary thing that ordinary people can do.  It is, we are and we did! I’ve never forgotten that concept.

Today I felt like an extraordinary person doing an ordinary (for most people) thing.  The cancer in my body is found in only 1-2% of lung cancer patients.  Remarkable (definition of extraordinary).  I have lived extraordinarily happily for 2.5 years since ROS1 entered my brain meninges.  Remarkable, given the (now ancient, but considered current) statistics on leptomeningeal carcinomatosis.  This morning I took this extraordinary body of mine on a walk through the field and forest to the top of a mountain. Not up “our” side of the mountain.  But up the “other” side of the mountain, the one with views of ocean, ponds, and the village.  Blue Hill Mountain.  Remarkable!

Much thanks to my daughter Mandy for doing this slow walk with me.  It was a beautiful day in every way.  Extraordinary!  See for yourself, and thanks for reading and caring.IMG_3953

 

 

Finding Joy in the Everyday

Sometimes I know people think it isn’t possible to find something to be joyful about every day.  And it’s likely some think that even more impossible for people living with Stage IV Lung (or any) cancer or with a serious, chronic condition.

I’m here to show you that’s just not so.  My belief is that everyone can find or make some joy in their day.  I hope to help others believe this is so.

Here’s some  info from my latest stable (since being on Lorlatinib 26 months) scans and MRI.  You can see I do have some challenges (not to mention side effect challenges), but also so very much to be grateful for:

In my lung from radiation: Unchanged left paramediastinal radiation fibrosis with ground glass opacity, bronchiectasis and architectural distortion.  No new or enlarging pulmonary nodule.
In my meninges (brain lining): Small posterior foci enhancement in the left occipital lobe with associated SWI foci again noted unchanged.
In my liver: Stable treated metastasis in segment 5
Okay, enough of that! My point is that it does not get in the way of finding and making joy in my day  Now here’s a look at my morning, just an hour of my morning yesterday.
 An hour filled with just a few of things I find such joy in.

“Scans look good!”

“Stay,” commanded Lady Lorlatinib.  And cancer stayed.  She is mighty, that Lady Lorlatinib.  Once again, after a day of tests and appointments (my sixteenth with Lady Lorlatinib) with the experts at Dana-Farber Cancer Institute, we learned that this miracle med continues to hold her hand (or foot or bum perhaps) over, clamped down on perhaps, the Switch so little ROS1 cancer cannot turn on and hop back into the driver’s seat, racing crazily throughout my body.  She is fearless, Lady Lorlatinib.  She does her job tirelessly, never angrily, but quietly determined as she continuously moves throughout my body to keep cancer in check.  

After 25 months we work well together, my team. I’m referring now to my immediate home team of Dan, Lady Lorlatinib, and me.  Lady Lorlatinib’s job is ever so important.  She meets her goals each day, making her rounds tracking down cancer, saying “No no, not today little ROS1.  Every day is more time for the researchers working to develop and test her successor.  My job of keeping my body healthy so she may do her job seems easy compared to hers.  Instead of being irritated or scared by the sometimes painful sensation of Lady Lorlatinib making her rounds, I can now smile and say, “ Oh, that’s my med doing its job.”  Trade-offs you know.  What price can you put on saving one’s life?  My side effects are definitely manageable. And Dan, he’s the one that gets affected by those side effects the most sometimes I think.  Like the mood swing side effect that perhaps we won’t highlight.  That’s when Dan says, “Must be the medicine working.”  But through it all, I feel loved.  Just because, because we love each other (or is it one another?), never taking the other for granted, always grateful for the gift of time to be together. 

Living scan to scan never gets easy for us.  Even when the clinical trial appointments have stretched from 3 weeks to six, then 9, and now are 12 weeks apart (with labs midway) as mine are.  In reality, cancer is with us all the time.  Because it actually is.  There is no way of knowing  when the cancer that’s a part of me now may overpower Lady Lorlatinib, mighty as she may be. Her special power is not to kill, only to control ROS1 cancer so my cells may live on happily and free. But like any caged animal, little ROS1 seeks to be free.  And little ROS1, he’s a fast driver once he hops in the seat.  The times he has been let loose have been most unpleasant.  So yes, I too must stay vigilant.   

Our trip to Boston Thursday was uneventful – that’s a good thing! Something we do not take for granted.  My appointments began with a blood draw (2 small tubes for my labs and 2 big tubes for the study) and IV put in at Dana-Farber at 8:00 AM.  Then it was over to Brigham and Women’s for CTscans and brain MRI.  Strange thing – at DFCI I only have one bottle of nasty drink before scans, but at Brigham I have two.  Hmm…  After the MRI and IV out, it was back to Dana-Farber for a quick lunch before heading to floor 10.  There I had vitals done (weight, blood pressure, temperature, oxygen saturation), an EKG, and my appointment with the oncologist and clinical trial nurse.  We love them both.  They are caring and competent, two of the best in their professions.  “Scans look good.”  And on we go from there.  The final part of our day at DFCI is to wait for my 12 weeks of my medication.  My prescription cannot be ordered until the scans and MRI are seen, so there is always a bit of a wait.  My backpack filled, we leave the parking garage at 2:30 PM, headed NORTH.  Weary from the physical and emotional work of the day, but relieved and ever so grateful.

Thanks to my sister who took care of the dachshunds and goats this trip, I even got to see my morning sunrise with a little dachshund (depositing some doodoo) in the photo. (I’ll share a different one.)  It’s the only time I’ve left them overnight since my last Dana-Farber appointment, so we’re all getting quite used to Mama being home 24/7.  Spoiled we are, in the best of ways!

Thank you for your prayers and positive thoughts for this journey.  We are grateful for the time we’ve been given and the time we have ahead of us.  And now it is time to pick the tomatoes.  There’s salsa to be made!  Finding joy in the everyday every day.

This wonderful t-shirt was designed by one of our grandsons. The front has two hearts, one with my name and one with my mom’s.  He is our heart hero and understands what it is like to undergo tests, procedures, surgeries, and to work with experts in Boston (next door to my experts).  Beulah’s Babies is the name of our large family team that participated annually in the Komen race (raising funds for breast cancer research) in memory of my mom.  polepolebreathe.blog  – well, you’re here.  And I just love the lungs for me with the pink ribbon for Mama.  Very thoughtful.  Thank you to him.fullsizeoutput_1626

Hope for the Journey

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I talk a lot about hope. I often suggest it is something really important, essential even, to have when living in any type of difficult or troubling times.  (And I’m sorry to say that when you think about it, we are all living in troubling times.)  But while I know hope’s importance to me (and I think to everyone) and I can give examples of hope, I’m not really sure how to explain it.

The definition of hope doesn’t even hint at its potential power to give one something to look toward, work toward, plan for.  Oxford: a feeling of expectation or desire for a certain thing to happen  Ho hum. Cambridge English adds to that and usually have a good reason to think it might. Better.  A google search does a little better than that – huffpost.com says “Hope is an optimistic attitude  of mind based on an expectation or desire.”  Okay, good.  Get the idea of an optimistic attitude in there.  Much more than just a feeling.  Attitude is something one has some control over.

Here’s what I think. Hope is what gives one courage.  Courage to forge ahead in the face of adversity, courage to “brave the storm”, whatever one’s storm may be.  It is believing that a positive outcome is a viable possibility, a possibility worthy of reaching, of striving for.

Okay, now for a concrete indicator of hope.  In the clinical trial I’m currently in I have to have lab work done every six weeks, both at and in between my check-ups at Dana-Farber Cancer Institute.  Recently I got a standing order from my oncologist at Dana-Farber for this blood work.  When I saw that it was a standing order and knew I just did the first of 30 times in the order, hope flooded my mind, body and soul.  Forty-five months ago I statistically had just a few months to live. Dana-Farber gave me hope at that time for greater possibilities. Now I have a standing order for over three years.  Now, maybe all standing orders have that number, but I’ve never had a standing order on this journey because things haven’t been stable enough to think longterm for the same lab work.  It doesn’t really matter even if the standing order was for someone else’s convenience – it gives me HOPE! Hope that I’ll be here for another “whatever”.  Hope that my participation in this trial will help doctors and researchers better understand how to treat ROS1 lung cancer, especially when it has metastasized to the lining of one’s brain, or maybe how to prevent it from metastasizing at all.  Hope to have the courage to brave the storm with an optimistic, joyful attittude.  Hope.

I made the “coins” in the photo above to take with me this week when I travel for my check-up at Dana-Farber.  Playing with art materials is one of the many  “gifts of time” I’ve found joy in.  My pursuit of find joy in the everyday every day is quite easy.  I know this isn’t so for everyone.  So, in this small way, I hope to bring joy, hope, and courage to others.

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Riches Aplenty

The other day I wrote to someone that I wished I was rich so I could make a purchase.  Silly me!  I am ever so rich in so many ways.  What I meant and should have said was if I could afford to I would make that purchase. This item isn’t something I want for myself, but rather something I’d like to preserve for my grandchildren.  If I was actually wealthy, I’d want to help people in need.  I have all I need and so much more.  I do wish everyone had all they need.  So many don’t.

One of the greatest riches in my life is the support and love I receive. In good times and hard times I know there will be an abundance of love, and physical and emotional support, from my closest family and friends, when needed, as needed. This has been so throughout my entire life.  I hope they always feel my love, support, and gratitude.  I do wish every being could have such a life experience.

I think wishful thinking has its place, but actions are really what make a difference.  I’ve spent much of my life playing and working with children, beginning when I was a child babysitting for younger children. My resume includes being a mom, a nursery school helper, Sunday School teacher, Brownie Scout leader, a child daycare owner, an elementary school teacher of every grade level at some time (PreK-8) and several content areas (math, reading, writing, social studies, science), an elementary school teaching principal, a school volunteer, and a Gramma.  Over that time I know that I’ve positively impacted children’s lives. I know they certainly have enriched my life.  Just yesterday I had two teens and a preteen spend the day with Gramma.  We played board games, cut branches to haul to the goats, and had a spontaneous hairstyling session – all four of us!  Another of my greatest riches, playing with children.

I’ve been married seventy-one percent of my life.  I went from my parents’ home to the home Dan built for us, the home we live in now (when we aren’t at our Salt Pond camp).  During that time we raised two children, numerous pet children (dogs, cats, guinea pigs, gerbils, horse, goats, iguana, fish, hermit crab), and all the while worked (occupation type work that is) to make our life together what we want it to be.  Our marriage has not been work.  Dr. Phil once said what hard work good marriages were, that marriage doesn’t succeed without hard work.  I disagree.  I think good marriages, happy marriages simply require attention and time. Time together mixed with love, humor, and a sense of fun and adventure.  That doesn’t sound like hard work to me.  I believe anyone who experiences a wonderful, lasting marriage has experienced what has to be one of the greatest riches of their life. I know I have.  I can’t imagine how anything here on earth could be greater.  

Enough musings for today.  I just needed to correct or clarify for myself that “wish” comment.  I know I don’t have to wish for anything.  I have all I need.  Finding joy in the everyday every day, that’s me.  Everyday things like watching the sun rise.

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On to Cycle 35!

My warrior drug, the fair Lady Lorlatinib Lobrena, has proven to be strong. (Yes, she has a new surname. She has been FDA approved to treat ALK+ NSCLC -not ROS1 yet- and that is how she is now introduced.)  After two years she is still able to stay attentive, travel to the far reaches of my body, and sit on ROS1’s brake whenever or wherever he tries to take off in his shiny speedster.  We are filled with gratitude.

I waited to see the official report on my patient portal before writing this.  The report always shows up one week after my daylong appointment.  But at Dana-Farber Cancer Institute we do not need to wait and worry for a week to hear the news.  Here’s how Thursday, June 27 went –

We left home at 4:45 AM for the drive to Boston, arriving in time for Dan to have lunch before my first appointment. And then the fun begins:

1. Blood draw on Yawkey, floor two (two tubes for today, two bigger tubes for trial study)  and IV in (for scans and MRI). When the nurse flushes out the IV, I get that taste in my mouth.  I ask her how it get there so quickly, but she doesn’t really know and marvels at it with me.

2. Over and down to Dana, floor L1 to drink the nasty drink that no longer tastes so nasty – maybe because my taste buds are messed up or maybe I’m used to it now. (I take mine in water, no Crystal light lemonade for me.)

3. Dana L1 for chest CT scan and abdomen CT scan.  Yup, still get that taste in my mouth and warm flush that makes you think you’re peeing.  I ask the tech how that goes from your arm to everywhere else so quickly.  He says he doesn’t really understand it either.

4. Across the hall for brain MRI (45 minutes wearing the hockey mask, in the tube with loud noises surrounding my head) I forget, when the technician flushes my IV, to ask about that taste arriving to my mouth so quickly.  I’m sure this lady would have had an answer, but she was all business and I didn’t want to interrupt her work.  I’ll have to “google” it!  IV out when MRI is finished.

5.  Back to Yawkey, Floor 10 for EKG.  Good thing I remembered to shave my legs this time.  Those sticky things come off easier with no hair.  (Also good thing I’ve got no chest hair!)

6. Vitals taken (Yawkey 10).  No thanks, I don’t need a kilogram to pound conversion.  97% on the O2 – Yes! Way to go little lungs! Radiation fibrosis, partially collapsed lung – you are nothing in this strong body.  Must be all that hill walking to do the goat chores.

7.  Appointment with clinical trial nurse and doctor. (Yawkey 10) This is where we got the great news that Loralatinib is keeping everything stable. Even though we’ve only been there five hours, and did all of the above, they had the results.  My blood work report had even gone to my patient portal already.   With the oncologist, fellow, and nurse, we talk about the test results and the medication side effects. Even though it is the end of their work day, they take the time to ask many questions, listen thoughtfully to my responses, and try to problem-solve any issues (ongoing or new).

8.  Down to Yawkey 2 to pick up prescription.

9. Dan drives us to Seabrook, NH for the night.  It is more than $100. cheaper than staying in the city, and in the summer we can do this whole trip in the daylight.

And so it goes.  Until it doesn’t.  I am very aware of this gift of time we’ve been given.  Many with metastatic cancer do not have a specific gene fusion or mutation that researchers have found and developed a drug to target.   Even when there is a TKI like I am on, the cancer often finds a workaround very quickly.  The toll that the cancer and the medication take on my body is ever-present. We are always in the cancer world where words like “good” and “stable” take on a much greater meaning. But that is just how it is, and we move forward.  Grateful for what we do have, what we can do.  And filled with hope.  Always have hope. There is always much to be hopeful about and for.

The following morning, the day we drove home in a celebratory mood, was a day much like June 28 sixteen years ago when our son and daughter-in-law were married.  A beautiful sunny day, filled with hope for a wonderful future.  So too was it much like a day forty-four years ago.  The day Dan and I officially began our life together.

And now here I am, filled with gratitude and hope – finding joy in the everyday every day with Dan, our family, our two little dachshunds, and of course our goats.

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Time for a new goal

Four years ago this spring Dan and I, with my sister and her husband, went on a backcountry backpacking trip into the Grand Canyon.  We each carried about thirty pounds on our backs, hiking from the South Rim into the canyon for a few nights of camping, and hiking back up with slightly lighter packs.  Also four years ago this spring, our granddaughter graduated from high school, ready for college and to become the nurse she’d always wanted to be.

And then(after the distraction of a house fire) came… “Oh shoot.  Metastatic lung cancer? Well this is not good.  But I have things I need to be here for. What’s the plan to keep me here?” This was my thinking, pretty much, upon hearing my diagnosis.  Even though I knew things looked grim, I needed to focus on life.

And I’ve been lucky.  Lucky to have expert care.  Lucky to have a cell fusion ROS1 that researchers have developed targeted therapies to keep “contained” (my term).  Lucky that another drug was available when the cancer found my brain.

But my being here, living, is so much more than just luck.  My outlook on life, my self care, self advocacy, the strength I draw from the love of others, believing in something bigger than myself, the joy I feel in experiencing every small part of each day, all keep me here too.  And goals – things I need to do.  Important things I so want to be here for.  Today I reached one of those goals.  In fact, it is the only tangible, stated goal in those first months  with a date that I hoped to be here for. A date that seemed so far into the future for someone with a terminal illness.  Today that granddaughter who so wanted to be a nurse graduated and I was there. Fancy that. I was there.  Wearing a bracelet that my dad gave to my mom  – I try to wear it to important family events.

And now?  Well, of course I’ve so many reasons I need to live.  I’ve even got a few mountains I want to climb.  I understand a lot more about this cancer journey I’m on than I did so long ago. And I know I’ve more to learn.  I don’t, though, feel a need to set a new goal with a date that I must reach.  If I can live well  surrounded by love for however long I’m here, I’m quite satisfied.  I will live and play and love with those who love me, finding joy in everyday things every day.  And when I turn 99 I shall dye my hair purple.  (If I have hair.)