Health Update (Good news)

No changes – that’s good news.  Last week we went for my day of appointments at Dana-Farber Cancer Institute.  If we had known of the COVID-19 outbreak in Boston I think we would have still gone, and in the way we did.  All day we practiced as much “social distancing” as we could, and used hand sanitizer frequently.  DF was already geared up for COVID-19, with doctors being told no business travel, online training, and a noticeable difference in greetings – no handshakes.  At DF they always have to take extra precautions in sanitizing, etc. because of the fragility of the immune systems of their patients.  So, after a very long day of driving (well riding for me) and appointments, I got the news that all remains the same, and picked up my trial medication (lorlatinib – 33 months) for another 12 weeks.

Staying positive is usually easy for me.  I’m definitely a “look on the bright side”, “glass half full”, hope-filled person.  But sometimes this cancer life gets me down, and my logical self says, “Understandably so”.  This blog is intended to share my experience to inform and help others.  It isn’t to paint a rosy picture, but rather an honest one.

I am grieving, as much of our peninsula community is, because this cancer beast caused the death of a beautiful young friend recently.  Inflammatory Breast cancer is another rare cancer, often diagnosed at late stage.  She, too, shared her cancer journey, hoping to inform, educate, and bring hope to others. It is inspirational reading. https://rosannamcfarlandsjourney.blogspot.com

All winter I’ve avoided crowds, not wanting to catch something after being hospitalized in early January. I can’t spend much time outside in the cold as it bothers my breathing.  I went to one basketball game for each of the grandchildren, and that’s pretty much it for large gatherings.  This is because of cancer. In the past I would have attended as many as possible.   So too I missed Rosanna’s Celebration of Life because of cancer.  Yet I was there by “being” with them, listening to songs on her playlist, reading Rosanna’s blog, praying for peace and comfort for her family.

And now, here we are – all of us dealing with a pandemic.  Other than the very real concern  about catching COVID-19 (I’m high risk, with a damaged lung and we are, umm, over 60),we’re much better prepared to work my way through the next months than most, I think. I just filled my trial prescription and won’t have to return until late May.  (Some friends in the cancer world are weighing the pros and cons of going to even necessary appointments.)  We learned how to sanitize everything when living at the Hope Lodge while I was having radiation at DF, so I feel safe in that respect.  We don’t have jobs that we will lose.  (Hoping the lobster industry will get bailed out like the cruise lines will.)  I have put myself under house arrest, no visitors.  (My friend Kathy and I will send each other interesting photos, and fun jokes and quotes.)  I can enjoy the coming of spring, being outside as much as I want. (Pussywillows are out here!)  I have 6 artist trading cards to make for swaps, a junk journal in progress for a friend, and two FB group  monthly art projects to work on.  And, I have Dan, two dachshunds, and four goats for company.  The best!  We have full freezers and cupboards.

I am still ever so grateful for this gift of time that I’ve been given.  All the hardships of living with cancer are just hardships right now, things I must deal with proactively as they come.  Living to find joy in the everyday EVERY day is a gift that I hope all who breathe can understand and enjoy.   I am grateful, too, that so many people are now taking this pandemic seriously.  (I wish our President and his administration had, and would.  But that is now for November.)  I’m grateful to the many front line health care workers.  This is a novel (NEW) virus that obviously spreads easily and rapidly.  Think about your elderly and high risk neighbors and relatives.  (My relatives and neighbors offered help to us and Dan’s dad.) We need to work together to not overwhelm our health care system. Social distancing, washing hands and sanitizing surfaces will help slow the spread.   Enjoy some extra time outside in the spring weather.

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A tale of three lives

Musings of living, living with  Stage IV lung cancer, a terminal disease…

I often feel as though I live in three lives or worlds.  There’s my happy life that’s filled with joy, love, family, nature, and crafting.  It’s the one I have some control over.  Then there’s the world around us, the “real” world, the one that is way out of balance and ever so scary.  I always say to not worry about things you can’t do anything about.  I’m worried, and all I know I can do is to vote.  It doesn’t seem like enough.  And finally, there’s  my cancer world.  Right now that world is just plain sad.  Sadder than sad.

I am lucky to be ROS1+ and to be in a clinical trial with a drug that has been keeping my cancer controlled for 2.5 years.  Over the past four years I’ve become friends with many in the lung cancer community.  This life too is filled with love and hope. In the past two weeks several people I know have died or made the choice to begin hospice care.  When over 400 Americans die every day of this disease, I guess it’s not surprising. I’ve not “met” any of them, but we are friends through Facebook, the ROS1ders, our blogs, and advocacy. This is beyond sad.  It is unnecessary .  If lung cancer research was funded at the rate of other cancers, maybe they would still be here, like me, living with lung cancer.  Or, maybe if their PCPs had taken their  symptoms seriously, before the disease metastasized, maybe they would have been able to be cured.  But no.  I hope their transition was peaceful and filled with love.  I grieve for their families, especially their children.  My third world, my cancer life.  Please urge your representatives to work to increase federal lung cancer research funding.

In reality these lives of course intermingle and I must find a balance that works for me.  Just as anyone who needs to deal with the many aspects of their life.  I feel blessed that I’ve been able to simplify my world significantly .  I can’t imagine living with Stage IV cancer and treatments while working and raising young children, but I’ve friends who are.  Please keep them in your thoughts and your prayers.

I continue to play.  Here are some photos of my latest paper bag journal and a page in an ephemera folio I made.  Love to all.

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Lesson learned!

Living  with cancer, even when you’re feeling relatively well, is trickier than I realized.  The good news is that I’m on the mend and back to feeding goats and crafting.

On the very day that I should have been celebrating four years of LIVING with cancer, I found myself in the hospital.  Ugh.  A simple infection turned into a three day stay being observed and cared for in the Special Care Unit.  Huh?!  How could that happen?  Well, I have cancer you see, and even though it is my med that controls the cancer, it is my job to take extraordinary care of my body and mind.  I think I forgot that in all the fun of the holidays, got overtired and kept going as I always had, and the next thing I knew I was sick, really sick.  An ordinary infection that decided to creep into my bloodstream took advantage of my body focusing on making conditions optimal for my med, and being distracted by the holiday festivities.

Two ER trips, CT scans of chest and head, EKG, who knows how many bags of IV fluids, IV antibiotics, heart monitoring, chest x-ray, blood work and more blood work, and on and on. I must say that I got the VIP treatment as a stage IV cancer patient.  I hope that everyone is treated so well.  I even got to practice using my spirometer!  The happy ending to this chapter is that everything is now okay.  I expect it will take me a while to get back to where I was, but I’m confident I will.  I did get some mighty good chicken soup delivered to me, and that sure is good for whatever ails you.  And, now I know.  Just because I’m feeling pretty good, that doesn’t mean I should push myself.  And now Dan can (and did) say, “I told you so!”  (In a very kind and gentle way.) Lesson learned.

So back I go to finding joy in the everyday every day here in our winter home, cozy and warm with Dan and the dachshunds. And, in case you missed it too – I have passed the four year mark of LIVING well with stage IV lung cancer!

When I got back to playing I made this junk journal out of a 6X9″ envelope, scrap paper and cloth, a cereal bag, odds and ends of cardboard, and a few buttons.  Pretty fun!

 

Onward we go! All stable

Last week we did our day (We left home at 6:00 AM, drove to Boston, and reached our hotel at 8:00 PM.) of tests and appointments at Dana-Farber and the news is all good!  The CT scans of my chest and abdomen are unchanged, the brain MRI is unchanged, the EKG was normal, the blood work showed that my additional cholesterol lowering medication is working. High (almost out of control) cholesterol is a medication side effect.  Everything else in my blood work remarkably is still always in the normal range. So has ROS1 hopped in his speedster and departed? Nope.  But he is currently still out of gas, stalled.  Not moving, not growing.  My hero, the Lovely Lady Lorlatinib is the real beast, in all the best ways.  While she may not be so kind to my body, we’ve learned to get along.  And she is strong, keeping her foot on little ROS1.  Doing her job.

Me?  I’m still playing, taking care of my mind and body, and finding joy in the everyday EVERY day, here in our winter home with Dan, our dachshunds and goats.  Filled with gratitude as we near the fourth anniversary of my Stage IV lung cancer diagnosis.  Looking forward to having the children, grandchildren, and Dan’s dad all together over the holidays.  Making memories.

Thank you for all the prayers you say for me and the positive thoughts you send.  I am grateful.  Love to all, from our side of the mountain.

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Free ME from Lung Cancer 5k

Today was a perfect day.  It’s easy to find perfect days when you look for them.  Today it was just there.  Team polepolebreathe.blog participated in the annual (our third) 5K benefiting  Free ME from Lung Cancer.  The weather was beautiful, perfect I think for running, and not cold for those of us cheering on the runners.  There’s a not too serious rivalry between mother and son that’s always entertaining.  My grandson barely beat his mom, but she placed higher in her age group than he.  A tie, I’d say.  As you’ll see in my selfie, I stood tall through it all, feeling blessed to have the team there in my honor.  I’ve been deciding upon a new important goal to strive for – the next thing I want to achieve on this journey.  Staying alive is a good one, but that goes without saying.  My goal?  Next year I hope to participate in the 5K.  If I slow-walked up a small mountain, I can finish a 5K.  And, I know team polepolebreathe.blog will be walking beside me or at the finish line tapping their toes waiting for my arrival. (They are runners after all!)  Join us – I expect it will be a perfect day!

 

 

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

 

 

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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