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

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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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.

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: