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.)

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

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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.