What’s the name of that song?

I think it’s Live Like You Were Dying.  I don’t care as much for that song as I used to.  I mean, I get it, but it just isn’t the way it really is.  Not really, for me anyway.  The song I relate to much more is Never Take a Breath for Granted.  Here’s why.  When you get the news (as the song goes) that you have a terminal illness, that you are going to die sooner rather than later, it is very likely you’re too ill to waste time riding a mechanical bull.  You need to get yourself to the nearest expert right away.  There you might discover great hope, a plan for  high quality of life (so you can decide if it is time to go skydiving today or if you might enjoy it more further down the road) , a roadmap to living well for as long as you can. In my way of thinking if you never take a breath for granted, you are present, truly present all the time.  Not in a frenzy to see how many of the crazy things you’ve thought of doing you can do before you kick the bucket.  But living in joy every day, thoughtfully revising and adjusting your life list to match the journey you find yourself on.

In my quest for keeping my body healthy so that my targeted therapy drug Lorlatinib can do its job beating down the notorious ROS1, driver of my cancer (Yes, I own it.), I’ve discovered essential oils and a wonderful health coach.  bridgesforhealth.com  It’s too early for me to say that this is helping my neuropathy, immune system, and numerous other things that need help in this journey, but it sure does feel good, and right.  I’ll keep you updated.

Lorlatinib, as I’ve said before, causes cholesterol problems and weight gain.  A few people in my ROS1 Facebook group have managed to keep cholesterol numbers healthy by eating a diet very high in Omega 3.  Worth a try, I love sardines!  We’ll see on this too.  And, maybe the essential oils will help so much with the neuropathy that I can get on some hiking boots.  Now that would be pure joy.  (Even if I don’t lose an ounce!)

And, I must share that I am STILL playing.  Have you ever seen such beautiful cereal box cardboard?yChzP9vaRG27xKYCm%YUDw.jpg

Or such a cute little felted gnome?fullsizeoutput_1304.jpeg

Didn’t think so!

Softball and baseball season is upon us. We have four grandchildren playing one or the other.  Readying camp for our move, snowdrops are blossomed.  Preparing to travel to see our now RN, BSN granddaughter be pinned and graduate.  Finding joy in the everyday every day.  Be present.  Never take a breath for granted.

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.

Omi, sweet, sweet Omi

This is not a living with cancer story.  This is a snippet of a wonderful love story.

She came to us broken we thought.  How wrong we were.  Broken tail, scars on her hind end, weighing less than half the normal adult weight for a dachshund, left in a box outside a shelter, we hoped she could heal with us.  We wondered if our love could heal her unseen scars.   We thought we were rescuing her.  Perhaps, but truly she rescued me, that summer and time and time again for ten years.

The spring, ten years ago now, that I began looking for a rescue dachshund was part of a difficult year, filled with great sadness and more looming ahead. We didn’t “need” another dog, but somehow I did.  We found the Coast to Coast Dachshund Rescue site and we had just arranged to get our first “rescue” dachshund Rusty (He’s my good boy Rusty.).   So why was I still looking through the photos of dogs in need of safe homes?  Because it was all simply meant to be.  We knew the moment we saw the listing for the dachshund called Naomi that she had to be in our family.  And so it came to be.

On transport she came, Florida to New Hampshire.  We left her brothers at home and drove the five hours to meet her.  It was love, such love from the first moment I held her. Naomi (the name her foster mom gave her),  became Nomi,  then Omi.  Omi Pert.  Even after being fostered for months, she was physically battered, scars from an unknown horrific past.  The tip of her little tail was bleeding from banging it on her transport crate  while wagging.  I first noticed it when blood spattered on the car door as she wriggled and wagged her happiness to be cuddled in my lap and loved.  She seemed not care about her tail, still wiggling it while soaking up the love we already felt for her.  So home we went.

I’ve known and deeply loved several dogs in my life, each one special in his or her own way. One that I thought I’d never find another love like his. (I have, at least twice since.)  And yet I’ve not known a dog as beautifully and wholly sweet natured as Omi.  Loving,  kind, and even optimistic, compassionate and empathetic I believe. Happy, joyful, content with life.  Not just special, unique in a very special way.  “Such a sweet soul” is how my sister describes her.  Yes, through and through.

A snippet of a love story I said, maybe just the very beginning.  I’m not ready to write the years between that spring day I we picked Omi up and today.  They’ve been filled with joy, with healing, with love. Someday I will tell Omi’s story as she is so worthy of knowing. The will of a being to overcome her past and live a purely joyful life is something worthy of sharing.  I’ve learned much from her.

This week that beautiful, big heart of our sweet Omi gave out.   Omi, my sweet, sweet Omi has left this earth. We are sad, yet filled with the joy that was Omi.  I am grateful, so grateful to have known and been loved by her.  She will be with us forever.

I encourage anyone who has the love, time, patience and space in your home, to let yourself be adopted by a rescue dog.

 

 

 

 

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!