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.)

Health Update, April 6, 2019

Still LIVING with stage IV lung cancer!  After another full day of driving five hours (I rode with my chauffeur Dan, joined by our daughter this trip!), IV in, blood draw, CT scans, brain MRI, EKG, and Dr. appointment, the tests results look great!  No progression seen in my lungs, liver, or meninges!  Twenty-one months in this clinical trial on the targeted therapy drug lorlatinib.  Wow.  Grateful beyond words.  I will share more on the ins and outs, ups and downs of living with cancer, taking a heavy duty medication that IS reaching my brain and messing up other parts of my system, and what our trip was like (nice!) later, perhaps next week when I get the reports.  But first, this:

Be on the lookout this summer  for these two, having fun while showing support and spreading awareness for the lung cancer community.

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LUNG CANCER MATTERS!  1 in 16 of us will get lung cancer.  Research is key to saving lives, if not in prevention, then in early detection and treatment.

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SPREADING AWARENESS MATTERS!  More and more young people, people with healthy lifestyles, are being diagnosed with LUNG cancer.IMG_8942

LUNG CANCER takes more lives than the other prominent cancers combined.  Know the symptoms.  Don’t ignore that little cough-cough, weight loss, chronic headache, fatigue.  If you think something is wrong, be persistent in finding answers.  Your family needs you.

FAMILY MATTERS!  I’m grateful for mine.

Always, always have hope.

Still playing!

IMG_1845I’m quite certain it is impossible for me to describe how very lucky, fortunate, blessed (choose your adjective) I feel to be here on earth.  This winter, despite (or because of) “everything”, has been one of the most wonderful, wonder-filled times of my life.

“Why?” you might ask.  “Have you traveled to exotic places?” No, I did that in my other life.  “Maybe you swam with the dolphins?”  Nope, other life too.  “I know, you rescued a dachshund to add to your family.”  Other life and they’re still living the good life, one now elderly with her heart condition that requires three medications, twice daily as she reminds me.  “Well, did you get to watch the birth of a grandchild?”  Other life and one is now 22!  And me, still just a kid myself!

This winter for the first time in either life, Dan and I have both been home together most of the time every day, the exceptions being his coaching and my one (just one all winter!) trip to Boston for my clinical trial appointment.  This winter I’ve been able to get a glimpse of what our retirement might have looked like if our other life had played out as “planned”. While neither of us have been physically able (Dan due to surgery, me -due to the beast) to climb mountains together or even to snowshoe up “our” side of the mountain, we’ve had a wonderful time, simply being.  Being together.

I’ve had times when I’ve struggled about the toll the side effects have on my physical self.     Treatment, both radiation and powerful targeted therapy drugs, have had immediate and long term effects that for me are just plain hard, yet tolerable. Some do not get the chance to be given a new life as I have.  I am grateful. I embrace this drug in my brain.  I hope someday lung cancer patients will be able to have treatments that both work and have fewer, less harsh side effects.  But for now I understand that treatment is why I have this wonderful new life.   I choose life.  I cherish this new life.  And I continue to work with the treatment to keep my physical self as healthy and strong as I can.

I love this pace of no hurries, no worries we’ve grown into this winter.  It allows me to observe the world around me, truly and thoroughly.  Whether it is the birds and squirrels at the feeders, the deer passing through the backyard, the little ermine that hides (lives?) in the brush pile, the goats and dachshunds that provide endless hours of entertainment, the grandchildren, hearing my father-in-law’s stories,  the basketball stories and passion of Dan the coach, the discovery of playing with mixed media art, reading or listening to books (The Moth Snowstorm and Becoming, field guides, and more) the forsythia brought in for a spring preview, or the subtle changes of the landscape, it all fills me with wonder.  Wonderful.  Wonder-filled.  Fulfilled. Full.  A full life, well-lived.   Simple, slow-paced, yet busy enough.  One day at a time, waking each morning knowing I’ll find joy in our everyday activities, surrounded by everything and everyone we love.

Still playing, just differently.  Here’s a glimpse:

 

 

 

 

 

Hopeful Health Update!

“Everything looks good!” said the “new to me” oncologist.  “You’ve been doing well for a LONG time.”  Okay friend, knock on wood, find a four leaf clover, and thank God when you make a statement like that.  It IS the truth.  I HAVE been doing very well on Lorlatinib.  In metastatic cancer world, it HAS been a long time. 546 days on Loralatinib  on that appointment day.  I am grateful to the doctors, nurses, researchers, and all who send positive energy and prayers.  Hope, I always have hope.

My appointment was great!  This doctor was very interested in my health and in the work of the ROS1ders.  He raved about how impressed he is with the ROS1ders advocacy work.  And, it is always nice to see Dawn, the clinical trial nurse.

It was a different trip though because Dan couldn’t go.  He recently had a total hip replacement and no long rides for him just now.  My sister drove me, while the “children” helped Dan with chores, etc.  My sister began this Dana-Farber relationship with us nearly three years ago, traveling with us as a note-taker and support when we first started our cancer journey.  I’m glad she was able to hear, “Everything looks good!”  Even my labs were all good.

So.  Well, my 3 year “cancerversary” just passed.  While I seldom really stop thinking about how fragile this string I’m hanging onto is, I think we’ve made a very wonderful new life for ourselves. And, this winter for the very first time ever, we are both at home every day.  And yes, it IS a good thing we love each other.  We are loving being together.  I’ve been busy caring for the goats and dogs, filling the wood stove, and keeping the ice and snow off the doorstep.

A new hobby is is also keeping me busy and happy.  I’ve spent my adult life simply knowing I couldn’t draw, paint, etc.  While I see myself as creative minded, I don’t see myself as an artist for sure.  Well, to my surprise – like most things – if you put your mind to it and practice, even I can learn to draw, paint, make fun art with mixed media, and Zentangle.  Yes, it’s true.  I’m having great fun – not just crafting, but learning to draw, learning to use watercolors, learning lots of mixed media techniques.  And, I’m no longer afraid to pick up a pen and use it for something other than writing.  Who knew this would be so much fun.  I don’t even mind sharing it, no matter what it looks like.  I’m having fun and learning, while playing and practicing.  Seems crazy, but it’s true.

One more fun thing has happened.  Years ago, as part of a senior thesis project at Goddard College, I wrote a children’s story.  At the time Dan really wanted me to see if I could get it published, but the one place I sent it to rejected it.  I tucked it away for the someday grandkids.  Well, welcome to the world of self-publishing!  I’ve worked with a publishing company and illustrator, and will soon be the published author of a children’s book.  (Further details when it actually comes out!)  I wasn’t sure I’d live to see it done.  Seriously.  In May, it was to take 3 months, and here we are in January.  Long time for someone living with metastatic lung cancer.   Looking hopeful though.  Good thing.  It’s on my life list to get done.  (You can smile now.  I am.)

Finally, if all goes well I won’t need to go to Boston until early April.  Twelve weeks!  You can find me here in our winter home on the mountainside, finding joy in the everyday every day. (It’s easy to do!)  Feeling grateful, joyful, peaceful, and as always – hopeful.

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Another year

Another year gone by.  That’s how many people say it I think.  Another year.  Me?  ANOTHER YEAR!!! YES!  We did it!  I’m really here to see ANOTHER YEAR begin!!! Here I am, LIVING with metastatic (here, there, everywhere) lung cancer. Since that awful diagnosis I’ve celebrated not one, not two, but three, yes THREE New Years.  How amazing is that?! Well, I can tell you.  Very.  Very amazing.

New Year’s Eve 2012, Moshi, Tanzania, Africa.  New Year’s Eve 2012, Amsterdam, Netherlands, Europe.  New Year’s Eve 2012, Massachusetts, United States, North America.  That was an amazing New Year’s Eve for sure.  Got on a plane in Africa on New Year’s Eve, landed in Europe for another flight still New Year’s Eve, and finally made it to Boston, MA in the United States on New Year’s Eve.  Three continents.  Not likely to have another New Year’s Eve like that one.  If our flight had not been cancelled the day before we wouldn’t have had that one.  Lucky I guess.  Not that we felt that way at the time.  But it is kinda cool to say we celebrated New Year’s Eve in/on three continents.

Lucky we were in 2012 and lucky we are today.  Blessed.  Fortunate.  Grateful.  Joyful.  Loved. Content. Hopeful. Those are some of my words I carry with me from 2018 into 2019.  They may sound “soft”, yet they come from, and give to me, strength, courage, and peace.  I am excited to see what things our family will celebrate in 2019.  Graduations, family gatherings and outings.  Every day a gift.  I know Dan and I have much to look forward to, beginning with our winter on the mountainside, cozy in our home with the three little dachshunds, and the goats nearby in their little barn.

May 2019 be a year of joy and health for you.

Another year!

Stay Focused on HOPE

“It is what it is. Life is what you make it.  When life give you lemons…”  You get the idea.  Don’t offer me any more of them right now.   Please.  And, thank you.

Today I had a meltdown, a rather big one.  I share this because sometimes I think I make this living with lung cancer stuff seem much easier than it is.  And that’s not fair to all those living with lung cancer or their caregivers.   I have so many things that are going right on this journey and so many blessings every day.  The reality is that many are really suffering and over 400 Americans die of lung cancer every. single. day.

It began quietly, building throughout the day.  Dan and I were both aware it was happening.  He tried to steer it in a more positive direction.  I could do nothing but let it go.  Every little thing throughout the day reminded me of what I cannot do because of lung cancer.  (Not my usual self.)  By the time I realized that my somewhat crazed state was likely my medication doing it’s job in my brain, I was in tears.  Sobbing, I said over and over, aloud and in my head, “I don’t want this lung cancer anymore.  I don’t want this lung cancer medicine anymore.”  Well there.  Okay then.  Now that’s wishful thinking.  Because really? Really, for me there is no choice.  I can’t just wish this cancer away.  Anymore than there’s a choice about aging.  What’s the alternative?  Death.  That thought knocked some sense into me.  I’m not ready to give up on life yet.  I’m still a healthy, young woman, just with lung cancer – my first brilliant oncologist Dr. Gandhi told me so!   I wiped my tears, apologized to Dan, who held me through it all (as he always does), and moved on with my day.

Tonight I’m back to normal, my normal.  Living well with lung cancer.  And I know my medicine, the fair Lady Lorlatinib, is reaching and working in my brain.  I don’t mind that my fingers and hands feel prickly as I touch the keys.  Neuropathy, it’s a brain thing.  It’s like I told my oncologist about my odd headaches, vision flashes, and messy speech – it means the medicine is working in my brain.  Lady Lorlatinib is working very hard to contain and control that nasty little ROS1 riding around in his sports car throughout my body.  I am grateful for this powerful drug and the research teams that identified ROS1 and treatments to slow down that speedster.  Tonight, why, I even laughed when I put my cup into the cupboard to warm instead of the microwave.  Huh, no buttons to push.  Oops!  (And no, everyone doesn’t always do that – I never did…)

My purpose in sharing this post  is why I share my journey at all – to help people understand the metastatic cancer journey.  To inform people who are well, so they may reach out to others with compassion.  To inform others with cancer about the importance of finding excellent treatment, keeping your body healthy, and living with peace and hope.  For me today was just a blip on the screen.  Kind of like those teenage PMS days. The real me – I am at peace with my life,  filled with hope, and surrounded by love.  I pray for that same state of being for all who travel this road.

This is Lung cancer Awareness Month.  Beware!  And BE AWARE.  If you have lungs, you are at risk for lung cancer.  Early detection can mean possibly being cured, saving a life.  Detection and genomic testing can mean a targeted treatment, saving a life.   Research funding is needed so that the heroes can do their work, finding treatments, causes and preventions, and cures.

Me.  Finding joy in the everyday every day, in the barn with the goats, snuggled on the couch with the three little dachshunds, just being here with Dan, in our home on the side of the mountain.  Thanks for listening.  Your prayers and thoughts of strength and positive energy for all who have lung cancer are needed and appreciated. Love to all.

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Feeling Grateful for the Opportunity

Feeling grateful, again, still, always.  Yesterday was a purely nice day.  It was the day of the annual Save Your Breath 5K to benefit the work of (Free ME from Lung cancer) , an organization that more Mainers need to learn about.

On the first Sunday in November, runners gather at the Y in Augusta at 7:00 AM (only it feels like 8:00 due to time change).  Many there are running because they love running this late season race, many others because they love someone with lung cancer, have lost someone to lung cancer, or have lung cancer themselves, and some run for both the love of running and the cause.  This latter describes my grandchildren and  their mom, my daughter by marriage and heart.  They love to run and they got up at 5:00 a.m. to travel to the race in my honor, to support Free ME from Lung cancer.  And running with my grandchildren was their great-aunt, my sister.  On the sidelines with me were Dan, my son and my brother-in-law. It was so wonderful to watch Team polepolebreathe.org in their tie-dye T-shirts (over or under their warmer gear) running or watching on this crisp, clear November day, supporting the lung cancer community. Just perfect.

After the race we went to breakfast at Mulholland’s Augusta House of Pancakes.  It’s a great restaurant, we love that you can walk in with a large group (last year I think we had nine) and they will happily accommodate you.  A couple of interesting things happened there. First, a governor candidate stopped by our table, noticing the “matching” Ts and asked my granddaughter what we were up to.  Ten year old C. did an impressive job of explaining.  The candidate seemed to have no awareness of the event, despite the promoting Free ME from Lung cancer does in that region of the state (and has for the six years of the race.)  If that candidate wins, they will get a letter from me while we are still “fresh” in their mind.

And then came an opportunity, for the children and for the grown-ups as well, to understand better why we participate, why I post.  It happened as we were leaving.  Our waitress must have asked my son (walking out just in front of me) if we had a family member with lung cancer.  He replied his mom.  With eyes filled with tears, she shared that she’d just lost her mom.  He quickly said, “My mom’s right here.”  By then, while I hadn’t heard the words she’d said, I knew she’d been deeply hurt by this cancer monster that took my dad and has so changed my life.  I stepped up, and she asked if it was me who had lung cancer.  Nodding, I said, “You look like you need a hug,” and reached out to her.  Here, in the middle of the restaurant, two strangers sharing  this bond, her grief, my hope, our compassion. In that hug I could feel the love for her mother.  She asked about my health, so grateful that I’m doing well.  And even though she doesn’t know my name I know I’m on her prayer list, and she on mine.  An opportunity to understand.

The cancer journey – when you’re stage IV I think “journey” describes a healthy, forward-looking approach – is filled with wonderful opportunities.  Sometimes you need to seek them out and sometimes they find you.   Be open to them.

Lung cancer awareness can save lives.  Test your home for radon.  Know the symptoms.  Don’t ignore that persistent cough-cough.

Finding joy in the everyday every day.