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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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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ROS1der Research

Dear Friends and Family,
The ROS1ders set a research fundraising goal for this month in honor of Lung Cancer Awareness month.  I hope you can help us reach it. $10.00 is what I’m asking you to contribute.  Four years ago my cough-cough led to a Stage IV lung cancer diagnosis (Jan. 2016). You know my story.  Since then I’ve been on two targeted therapy drugs for ROS1 cancer. Neither FDA approved when I started them. Currently I am in a clinical trial. With each new drug the research scientists are learning more and more about the response to and of the ROS1 fusion. The ROS1ders are donating tumor tissue and more to this research. For me, there is possibly one more drug in trial when ROS1 finds a work-around to my current drug.  For others there isn’t yet another drug.

For you scientists in my “family”, here’s some information on the research. ROS1 PDX Study

Here’s what I’m asking of you – $10.00 If every one of my blog readers and facebook friends and family gave $10. to this research I’d have made a great contribution. I ask this as much for the young moms and dads in our ROS1der group as for myself. Sure, I’d love to stay around to watch the grandkids grow and to get to grow old with Dan is a dream I once took for granted. But there are young people in our group who need to live long enough to see this cancer treated as a managed chronic illness so they can just experience life.

So, $10.00. Please.  Thank you. Thank you for this and all your love, support, well wishes and prayers.  Thank you for reading this and every post.  Here’s the link to my fundraising page.  Corinne’s ROS1 page

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My cancer journey so far (written for ROS1der Feature Friday)

 On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro.  April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs.  By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015.  Guess again.  I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well.  The FNP saved my life by doing an x-ray.  How simple was that.

After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston.  They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon).  Testing for a gene alteration was done despite initial insurance denial.  Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI  doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel.  Dana-Farber is a place of hope, caring, and expertise.  While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group.  I am so very grateful for this forum.

I began taking crizotinib March 2, 2016.  After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well.  Within a week I was breathing easily.  While never NED, everything was greatly reduced and remained stable.  By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.

In March 2017 I began having odd headaches.  A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.)   Again DFCI offered hope.  I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier.  I stayed on crizotinib until one week before beginning lorlatinib in July 2017.  I gave up teaching to make keeping my body strong and healthy my priority.  Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable.  My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks.  Twenty-nine months so far!

My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s  college graduation.  I recently hiked (slow-walked) a small mountain.  I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed.  I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K.  I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others.  My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time.  Always, always have hope.59233457353__C7F9845D-C46E-45CE-9B6B-667E849E2D3A

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