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!

 

 

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