Corinne

Want a meaningful life? Spend time with Children

This post has little to do with living with metastatic lung cancer, and more to do with my thoughts about our world today, thoughts gathered from living a meaningful life filled with children. It is filled with opinion, mine! I’ve never had a time in my life when it wasn’t filled with children. Time with children will only enhance one’s life.

Now should be the best time in the history of our country to be a child. I think it’s not, far from it. It’s the scariest time to be a child that I’ve seen in my lifetime. We can change that. We must change it. We must change. Spending time with children is “free” and will only enhance your life too. Our children need us, all of us.

There’s unbelievable stuff happening in our world. It makes my difficulties seem so small. Has it always been so extreme and we didn’t have the technology to be made aware of it? History tells me yes, and no. For a child, reading The Diary of Anne Frank or even Night by Elie Wiesel, with a trusted adult to help you process it, is quite different than that child seeing the news, possibly on her/his smart phone, as the reporter video “chats” with two young girls in Syria, living in the midst of pure horror. Parents, please pay attention to what your children are seeing and are watching on their own. When you choose to watch current events together, please point out the people who are trying to help (when you find them).

We’re on fast forward and I want someone to hit pause. Then maybe reason could enter the picture before we move on. Yes, I’m talking about the situation we find ourselves in regarding gun violence. Pause long enough to think reasonably. Adults in “power”, QUIT the BLAME game! You are supposed to be our leaders. Do so with courage. We are in a crisis that requires action, not just reaction. Move forward. We need a sensible plan right here right now. Here’s a middle school tool to help called STOP: Stop, Think, Organize, Proceed. Move forward positively please. I don’t have answers. I have thoughts. We all do. Please protect our children through reasonable means.

We can all pay attention to our children. Yes, they are OUR children. Not just the ones you’re related to, but the ones next door, across the street, and as far beyond as you can reach. If everyone is vigilant about paying attention to what’s happening with the children in your world, then maybe we can better support them. We can all be children’s advocates. We have to get involved, be there for OUR children. Please reach out to the children in your world.

Gun violence. We don’t just have a gun violence problem, it’s a violence problem. Violence has become commonplace. New gaming systems come with very realistic gory, violent games. People killing people. What happened to challenging games with fun characters? Children are blasted with images and language of violence and hate. It’s hard to get away from. We can do better. It will take all of us, well, most of us working together to support our children in steering away from this realm of our world.

I am a hunter. It’s been a part of my life always. I have wonderful memories of trotting along after my dad while rabbit hunting. Wild game was a mainstay on the table for most families in rural Maine 50 years ago. It still is for some. We eat what we hunt. It’s my rule. I’ve spent hours sitting in a tree while deer hunting with a child by my side. I want my grandchildren to experience and understand what is involved in the full experience. Climbing a tree pre-dawn, seeing and hearing the forest awaken, determining the subtle sound differences of approaching animals, and learning some of the language of the forest are all part of this experience. So is making sure you have a good shot or not shooting, tracking the animal if necessary, and if you take a life, thanking the animal for that life. Always be a grateful hunter. I am always sad when I take a life, but I am a meat eater and wild game is healthy and delicious. All this, even with life taken, is so far removed from the “gun debate” that is happening now. Many years ago I read a book entitled Know Hunting by Dr. David E. Samuel. It really helped me think about hunters and anti-hunters. I recommend it. But this now, this debate, in my mind at least, has nothing to do with hunting.

Our children are dying. People want action. Suggestions are being made. They need to be considered. We need more than a bandaid. I don’t know anyone who needs to or should own an assault rifle. (They are different than semi-automatic rifles.) Their purpose is to kill people. It’s a step. No, I don’t think it’s a step toward taking “our” guns away. Increasing the age to purchase a gun? Can’t hurt, don’t see how it actually changes much. Tightening the background check system can only help I would think, and we should plan ahead for such a purchase. The lack of trust and confidence in our leadership makes it difficult to support these changes, but I think we must.

Arm teachers in every school? PLEASE DON’T!! If the government (that currently will not supply schools with what is needed to fulfill their mission) wants to place armed school resource officers in every school, I’m for it. As sad as it makes me to say it, as teachers we cannot say we are providing a safe place for children to learn. And, even with the locked doors and safety precautions, we can’t protect them. If there are personnel not directly responsible for groups of children, and the school system deems it in the best interest of children to provide rigorous training to them, then I’m not opposed to qualified staff volunteering for this. But please don’t expect this of anyone. No one should ever think that being armed is an expectation of their school position, except a law officer. If knowing that someone is armed will deter attackers, I’m willing to accept it.

Really, I just want everyone to think about how to better support the children around them and beyond. Even if you think you’re doing a great job of this already. Not just the ones related to you. Reach out, please. I know we can change the direction we’re headed in. Spending time with children will only enhance your life. Maybe just noticing all children, paying attention to their wellbeing will bring more joy to your life too. We can all be children’s advocates. We can do this.

Nice to be Loved!

On November 5, 2017 in the very early morning my sister Nada was one of several family members and friends to make a two hour drive to participate in the annual Save Your Breath 5K Save Your Breath 5K FaceBook, a run to support Free ME from Lung Cancer. It was her birthday.

A few weeks earlier Nada and her daughter Betsy had decided to get together a team in my honor. Pretty nice! The team was named for this blog, Team polepole. And then, t-shirts were made for all eleven team members. Not just any t-shirts, but hand tie-dyed t-shirts with polepolebreathe.blog ironed on each by Nada. Even nicer!

So on that brisk Sunday morning some of us ran and some walked a shorter distance. While we were raising funds for Free ME from Lung Cancer, we were also showing support for the lung cancer community; those living with lung cancer, survivors of lung cancer, and also honoring lives lost. It felt special, much like our family participating in the Komen run in my mom’s memory. Only different. Different for a few reasons. First, our team was participating in my honor. Wow. Second, while there were quite a few runners, there simply is not the same kind of societal support for the lung cancer community. Humbling. Next year I’ll ask that we run/walk in memory of my dad too. We can now see beyond the stigma and understand. It’s important that we try to teach others. Too many are dying (433 Americans per day) because of that stigma. Another reason that day was special? My sister’s birthday of course! I felt honored she chose to spend it in this way. And honored that so many others did so too.

After the race Team polepole had breakfast together. The busy restaurant was perfect for our noisy group. The birthday girl polished off a large platter of strawberry crepes. We’re in the business of making memories these days, and I’ve great memories of that day from seeing Team polepole and cheering on the runners to the breakfast chatting.

A final note – At the SaveYour Breath 5K I met Dave Eid, sportscaster at WGME in Maine. Dave’s wife Lisa is a fellow ROS1der, and Dave is on the Free ME from Lung Cancer Board. Just after my grandson finished the race (beating his mom!), Dave had arranged for us to be interviewed: News interview

Still busy, no pickles!

The hum of the dehydrator reminded me of finding joy in the everyday EVERY day. That reminded me it’s time to share what’s new in my world.

Lying very still, palms out, light dimmed, music playing, I glance down to peek at the eighteen needles just before my body relaxes and I feel the energy flowing to my fingertips and toes. Yup, acupuncture. Before I know it the half hour is up, Dr. Z is back in the room pulling out the teeny needles, and I have to make my reentry to this world. My body responds well to acupuncture. Many years ago it “cured” my chronic migraines. Eight treatments over four weeks. Headaches gone, just like that, after years of torment.

When I read that neuropathy is treated with acupuncture, I called Dr. Z. to schedule a visit. A side effect of my targeted therapy, neuropathy is the mini beast I’m dealing with now. Fingers, hands, toes, and left foot. None of the descriptions I read prepared me for how it would affect me. Wow. Much tougher than daily diarrhea was while on crizotinib. We already reduced my med dosage, so that’s not an option. Out of my research came two possible remedies for relief: acupuncture and topical cannabis essential oil. The oil provides temporary relief. After two sessions of eight scheduled, I can see marked improvement from the acupuncture. It’s going to work.

No, acupuncture doesn’t hurt. Don’t like needles? Don’t look! These are just tiny, thin as a piece of hair, and they get poked into your skin. Okay, how about gently inserted? I had to count as he gently inserted them to even know how many there were. Two on the inside of each elbow, one near each thumb, three on the inside of each knee, two on each ankle, and one in each foot. I think. I know I counted 18. Well really I counted nine, on each side. Maybe I’ll ask for a phone pic. That’s taking up two mornings per week for a month. Then the weather will be warmer and my foot will feel well enough for walking, maybe hiking.

Got the dehydrator for Christmas, a little bigger than the one we lost to the fire, still sits nicely on the counter. So nowadays instead of pickle-making, it’s jerky, venison jerky, and applesauce leather, and best of all? Dried apple peel for naughty Dottie and sweet Matilda. Who knew goats prefer their apple dried? Won’t touch a fresh apple, but they go crazy for their apple snacks. Now Dan has to eat applesauce, apple leather, apple crisp… You get the picture. And, Matilda now stomps her foot on her bowl when there’s no apple. Can’t say “poor Dan” though, he gave me the dehydrator. Just lucky for him that the grandchildren like jerky.

A few years ago I took a dehydrator to my preschool classroom to dry starfruit. Shortly after we filled it, one of the students lined all the chairs up facing the dehydrator. Her plan was to watch it. Huh. I must have missed a step in my explanation. I learned from that day that I would need something to do while the dehydrator was humming along. I have found a great new hobby. Combines many things I love and I can do it whenever I want while sitting with my feet up and my dachshunds by my side. Online classes that are either free or cheap! There’s all kinds of photography ones, and I’ve always wanted to learn more about my camera and lenses. Other topics of interest such as drawing and writing are available too. Why, I might even brush-up (relearn) on French or learn a new language. All while the dehydrator is humming.

Winter has been wonderful for me. Dan’s been home most days, working on lobster gear in his basement shop. Our first winter of being home together most of the time. Really nice. Soon he’ll be back on the water more, and before we know it, it will be time to move to our Salt Pond camp.

Headed to Dana Farber for my brain MRI, CT scans of chest and abdomen, blood draw, EKG, and doctor appointment on March 1. It’s been nine weeks, the longest between scans since diagnosis. If all goes well, appointments will stay at nine weeks. Thinking positively. I’m grateful for research, genomic testing, and targeted therapy drugs in clinical trials.

That’s me. Finding joy in the everyday every day here in our winter home on the mountainside with Dan, the three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

Advocacy and some ways YOU can help!

There are some great minds and dedicated people advocating on behalf of lung cancer patients. We need them and I’m thankful for the work they do. Many times they’ve been directly impacted by the disease, like these senators have: Bipartisan legislation introduced to study lung cancer in women

You can help by calling, emailing, or writing your Senators and Representatives.

Truth is, until recently there were very few lung cancer patients able to advocate for themselves as most were simply fighting for their life physically and in the moment, with no ability to fight in other ways. (433 Americans die daily from LUNG cancer.) With such dismal survival rates, few saw a future past that initial shock stage, and had no opportunity to reach a point where they even could consider advocacy. But thankfully there are those survivors such as Bonnie Addario and Debbie Violette who not only survived and thrived, but took on the challenge of advocacy. I’m grateful to Bonnie (Bonnie Addario Lung Cancer Foundation), Debbie Violette (Free ME from lung cancer ), other survivor advocates, family member advocates, and others who take up this challenge on our behalf. ROS1cancer research is being conducted through the Bonnie Addario Lung Cancer Foundation

You can help by learning about lung cancer and sharing your knowledge with others. Knowledge is power. Education is key.

And then, the elephant in the room. Why, if so many more die of lung cancer than other cancers, is the funding so low? It’s a sad, but easy answer. There is the huge stigma associated with lung cancer – the thought that it is a smoker’s disease and we can simply eliminate it by not smoking. Heart disease is also often caused by smoking – do we blame those with COPD for their condition and deny them research funding dollars? Do we not help others with disease caused by addiction? And, come on folks, we all know that ALL YOU NEED TO GET LUNG cANCER would be… drum roll please… LUNGS, JUST LUNGS. We all have them, and even if you think you take care of them, you can get lung cancer. I know. And, we’re learning that more and more nonsmoking women are learning this the hard way – with a Stage IV lung cancer diagnosis. So many are not lucky like me, and there is no targeted therapy drug for them that keeps the beast at bay while the next drug is being developed. No cure in sight, but great hope for lung cancer being a managed chronic disease in the not so distant future.

You can help by ending the stigma. If you learn someone has lung cancer, DO NOT ask if he/she smoked please. They have LUNG cancer. Why should it matter to you if they smoked? They have LUNG cancer. Would you ask someone with breast cancer what they did to cause it? Of course not. A little compassion goes a long ways, please. And chances are, sadly, if they are a nonsmoker they’ll be quick to tell you so, either because they’re still surprised or because of the stigma. I know I did. It’s really so weird when here you are dying and you think you have to defend yourself in some way. Now, after two years, I can either say nothing, note that all you need (LUNGS), or share that radon is the second leading cause of lung cancer.

Advocacy: public support for a particular cause. So please – no more stigma. When you share that someone you know has LUNG cancer, please don’t feel embarrassed for them. Speak up for them. Explain that 433 Americans die every day of lung cancer. Explain that funding is needed. Wear LUNG cancer awareness apparel and jewelry just as you would to show support for those with any other cancer.

If you’re in the Washington D.C. area on April 26 there is a rally to promote awareness. The hope is to have 433 people in attendance. Life and Breath Rally info

My lung cancer advocacy work: serving on a stakeholders advisory board to Maine Lung Cancer Coalition (MLCC) as they work on education, prevention, and screening; writing to my representatives; and I’m soon to have a final interview to be a Phone Buddy for Lung Cancer Alliance (LCA Phone Buddy Program).

Finding joy in the everyday EVERY day with Dan, the family, the three little dachshunds, and of course Dottie and Matilda, our Nigerian Dwarf goats. That’s me!

Sharing the Journey

I can’t imagine traveling this cancer road alone. No one should ever, ever have to. I’m so very grateful that I’ll never have to. In fact, my family has grown through this journey. This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I’ve never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+. This family has nearly tripled since I found it, and is worldwide.

The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone’s specific information, but I can share what makes them my “family”. Most, but not all, have lung cancer. Most, not all, have metastasized cancer. Most, not all, have been on the drug Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey. Many, maybe most, are younger than me, many with children at home. Many have had treatments that I’ve not had. Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders. All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member. Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing. Beyond that even, there’s just such a feeling of empathy and sincere caring about one another’s well being in the group. In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.

I’ve tried to think what it is that makes this family so very special compared to other organizations I’ve been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH. The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family. Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern. It is a safe place. This is a difficult road to travel. Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered. Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.

My ROS1der family, a FaceBook group. Who knew I’d find such camaraderie in such a place. Huh. Another of the countless blessings that have come my way on this journey. May every human needing such a place, find theirs.

Finding joy in the everyday, every day.

HAPPY cancer-VERSARY to ME!

Two years of LIVING life to the fullest, enveloped and supported by those who love me. Cause for celebration for anyone, anytime! For sure for me when you flip the pages of my story back two years.

What date to choose for the start of this journey? Hmmm… When I first felt ill, or maybe when I developed that cough, cough? Nope, not then…I didn’t know then. Okay, so maybe the Sunday I had the life-saving X-ray, or the Tuesday I got the call (while at lunch with my granddaughter) that I needed a CT scan because of “something” the radiologist saw on that X-ray. Could be then, but nope. Must be pneumonia or something. Ah ha! Got it! Not just the date, but the exact moment.

The day this journey began was Thursday, January 7, 2016. Dan and I were sitting in an exam room, and my PCP knocked and entered slowly, too slowly. It was a surreal moment. The expression on her face showed everything I didn’t want to know. It was kind of like in the movies whenever the doctor says there’s no hope, only sadder, and real; too sad, too real. Her sad voice broke as she explained that I had a mass in my left lung hilum. I asked if it could be anything other than cancer, even before she said it was. She slowly shook her head, and not wanting to give me false hope said, “No, not really. There really isn’t anything else it could be.” And then, after processing the news for just a few seconds, we went on to lay out a plan to first get a diagnosis. That’s it. Yup. That’s the day. Thursday, January 7, 2016, approximately 9:50 AM.

And thanks to medical researchers, research doctors, the incredible staff at Dana-Farber Cancer Institute (go there the second there is a cancer diagnosis), the prayers, well wishes, and positive thinking of many, and the support of those who love me, HERE I am!! Not just alive, but living!!

Loving LIFE with Dan, our family, the three little dachshunds, and Dottie and Matilda, the Nigerian Dwarf Goats. Finding (and spreading I hope) JOY in the everyday, every day. Content. Happy. Satisfied. A meaningful life, filled with HOPE.

Climb Every Mountain

Warning: long post, somewhat rambling!

Time flies! There’s never enough time… Where did the time go? Or, maybe, just maybe, there really is no such thing as time. That’s what physicist Julian Barbour thinks. Instead of time as a measure of change, Barbour sees each individual moment as a whole, complete and existing in its own right. He calls these moments “Nows.” And our lives are a succession of Nows. There is only now. Huh. Go figure. Now I begin to understand a conversation I had over ice cream a few months ago. This post is about a succession of Nows over the past what I thought was time period called a decade.

When I turned 50 I announced that maybe, just maybe I had reached middle-age. My plan was to surpass 100 and I felt that was a reasonable goal. My true goal, which has not changed, is to stay young forever, however long that may be for me. The decade since that announcement has been filled with highs and lows, as I suspect everyone’s life probably is between 50 and 60. Both of our mothers died, a year apart, expected someday maybe, but still ever so painful when it comes, and so sad, still. Something countless others can relate to. We had two beautiful grand-babies born between those deaths, totaling five. Our heart hero grandson had surgeries and grew stronger, and “time” went on. Suddenly, it seemed, all the grandchildren were in school, and our oldest grand-daughter entered high school. She’s now a nursing student, 3rd year – wow!

During most of those years, I worked, learned, and played with the most wonderful people. My relationships with some are still strong and wonderful today. Somewhere in those years, I was privileged to be invited to work with some extraordinary teachers to develop and implement learning adventures for students that were like no others; traveling to Alaska to volunteer at a remote Iditarod checkpoint, and a ranger-led backpacking expedition to the bottom of the Grand Canyon. Both times students worked to raise funds, and studied and trained for the adventure. Amazing can’t begin to describe this opportunity.

Dan and I went on some very exciting hunting trips in Saskatchewan. There is nothing like 10 hours of sitting in a tree stand surrounded by Saskatchewan nature. From the tiniest snowflake to the majestic whitetail bucks, I captured it all with my Canon and in my mind – the wildlife, the snow, the sunlight through the trees, the quiet like nothing at home. And yes, one buck per hunt, most years, with my Browning lever action 7 mm-08 to take home to the freezer. The best times were when Dan and I sat together in a stand, sometimes during a snowstorm, spending hours waiting for just the right snowflake to fall on our hat to “shoot”! And, reviewing those pics over tea in the cabin that night.

We renovated our Salt Pond camp near the start of this decade. Camp Gramma evolved, I’m not sure how long we’ve done it. I’ve mentioned it before, and it deserves a post of its own, with pics. Every Gramma should have the opportunity to spend her summers playing in the outdoors with her grandchildren. Talk about joy!

I left the job I loved rather than compromise my integrity and go along with things I believed were wrong in 2013. But every cloud does have a silver lining if you look or pursue it, and my job transition to my “beginnings” as an educator in early childhood allowed me to pursue a passion – nature and nature-based education. A course taught by The Maine Master Naturalists opened my eyes and minds to the world around me in ways I never imagined. This passion feeds me now, bringing me joy and comfort, and always an interest to pursue.

Dan and I found hiking during these years. Our goal became to climb every mountain we found, or maybe that was Dan’s goal! I like hiking. Hike we did! At 55 I was the most fit I’d been in my life. We climbed Katahdin, Mt. Washington, Cadillac, Big Spencer, and Blue Hill Mountain (over and over and …) Climb every mountain you can while you can! The view is always unique. We went on crazy adventures to Tanzania to climb Kilimanjaro and go on a photo safari, and back country backpacking down and up the Grand Canyon with my sister and her husband. At almost 58, I was the baby on that trip!

Then came what was to be a very strange year – 2015. It certainly had its highs, beginning with that trip to the Grand Canyon in April, four big kids on a once in a lifetime adventure. Another high was the naturalist course that I use the learning from every day as I find joy in the everyday. And Camp Gramma that summer was sensational! But a strange “series of unfortunate events” took place that year, big events for us, life-changers really. First our oldest dachshund died. He had truly been Dan’s faithful companion. Shortly after losing Rocky, Dan nearly lost his boat and his life when his lobster boat filled with water and he raced “time” to run it aground before it sank. Scary, something that stays with you, life-changing REALLY. And then, 3 months later, August 17, 2015, we had a house fire. No one was home. From the outside our home looked as if nothing had been harmed. In reality, the house would be gutted and rebuilt inside, and we would lose all of the contents, forty years of our life’s “stuff”. Life-changing REALLY. And then, while working to inventory all of our things, oversee the work at the house, and teach, I got sick – cancer crept in while I was otherwise occupied… Weird year, that 2015. Life-changing REALLY. Some silver linings? Always. We winterized camp and lived in the most beautiful natural setting. We adopted Ruby Jean the dachshund. We deepened relationships with those close to us who understood that support is needed even if not asked for when life-changing is your NOW.

2016 was the year we learned about lung cancer. And brought Dottie and Matilda, the Nigerian dwarf goats, into our lives. It was the year I think that our 44 year relationship deepened and we reconnected with renewed and strengthened love as we stopped reeling from our life-changing events, all the while beginning to deal with cancer. We’d gotten mighty comfortable in our roles over the years, if not taking each other for granted, then maybe taking life for granted, and then, we couldn’t anymore. Life changed. When cancer creeps in, so can fear. But Dan, my best friend, my true love, my partner in life since I was 15, has faced these new challenges with such courage and strength. Together, like we’ve done since we were teens, we’ll face this one together too.

2017 was the year we learned to live with lung cancer. We’ve had a marvelous year, especially since I was able to stop working in May. (A silver lining?) We gardened, enjoyed our annual trip to Spencer Pond Camps with all our children and grandchildren, played at Camp Gramma, loved our 3 little dachshunds and the “girls” Dottie and Matilda. While Dan works, I do what I feel like doing! And that’s okay with him. I volunteer in my dear friend Kathy’s classroom, go on outings with my free-ranging sister and a friend, play cribbage with my son, go on walks with my daughter, read, or whatever I may feel up to doing. This time of year there’s alway a basketball game to go to with four grands playing and Dan coaching. Finding joy in the everyday every day.

And don’t forget! Climb every mountain you can while you can. The climb and the view are always unique.

Welcome 2018! (If you even exist since you are a measure of “time”!)

Thursday, December 28, 2017 Update

Great news, again! Right up there with some of the best news I’ve had since beginning this journey. Writing this in our hotel room, a block from the most wonderful cancer institute in the world, Dana-Farber Cancer Institute. Wonderful: inspiring delight, pleasure, or admiration; extremely good; marvelous. Yes, wonderful! Regardless of the news I might receive from them, they certainly have inspired admiration from me, data shows their work is extremely good, and the people we’ve met there are delightful and quite marvelous in their treatment of patients and caregivers.

Back to my news! Stable from the neck down, AND (drum roll please) an 84% reduction of the nasty beast in my brain meninges since beginning my second wonder drug Lorlatinib in July.

Today was another long day for us. We stayed in Portland last night to make sure we would arrive at Dana-Farber for a 10:30 AM start. At 10:30 PM the fire alarm went off in the hall of the motel last night. Some kid had burned his popcorn in a microwave. We didn’t have to go outside luckily. Today began with “free” breakfast at 6:00 AM, followed by a very quick 2.5 hour drive to Boston. No morning traffic – unlike any other day we’ve gone. Vacation I guess. We even parked on P4 instead of P6 of the underground parking garage!

My appointments were all the “usual”: IV in, blood draw, CT scans of chest and abdomen on L1 in the Dana Building, brain MRI and IV out on Dana 3 , grab some lunch (Yawkey 3), check vitals, EKG, Dr. appointment (Yawkey 10), and wait for medication (Yawkey 2). Done at 4:00 PM. Nothing to it!

Here’s more great news – I am scheduled to return to Dana-Farber on March 1, 2018. Nine weeks!! Yes, nine. That is the longest between appointments in the 23 months I’ve been a patient at Dana-Farber. Wow! Now, will I be nervous about that? I don’t think so. I know my body, and the difference between symptoms and side effects pretty well now. And, my clinical trial nurse and oncologist are just a phone call or 5 hour drive away!

Hey, I forgot something very important in my post about Procedures and Tests ! When they put the contrast dye in your IV during scans, you get the warm feeling and would think that you wet yourself if not forewarned. Thought about that one today when…

For me, 2017 has been the year I began to learn to LIVE with metastatic lung cancer, helping to create new statistics, and bring hope to those diagnosed with this disease that still currently kills 433 Americans every day. We can, are, and will continue to do so much better. There is great hope for the newly diagnosed.

Happy New Year to all our family and friends, new and not so new! Your positive thoughts, love, and prayers continue to help give me the strength needed for this journey. Please test your home for radon this year if you’ve not yet done so.

Looking forward to us going home to the dachshunds and goats, comfy and cozy for the winter, feeling grateful, and finding joy in the everyday every day!

We’re off to see the Wizard!

For Christmas I received a family outing to see The Wizard of Oz performance in April. All of the Camp Gramma “campers and counselors” are going! The “givers” know I love The Wizard of Oz. Without intending it to be so (I think), it was also a gift of hope and of a feeling, a statement, that we’re not letting this cancer interfere with our family life.

I love The Wizard of Oz – did you know that? A few weeks ago I saw that the performance was going to be about an hour away in April. I thought about getting tickets and inviting someone to go with me, but… But I didn’t because there were too many “but”s in my way. But it’s late, but it’s expensive, but… Honestly, I let cancer get in my way. But someone will have to drive me. But what if I don’t feel well? It’s too far away (in time, not distance), I can’t spend $ on something 5 or 6 months away. Who knows what life will be like then? But in reality, no one knows, for anyone.

So I’m excited! Excited to see the performance, and with all my campers! There’ll be seven of us. We’ll go together, and maybe we’ll go to dinner first. It’s a school night and I know the campers will be tired, but they’re young! And me? I can rest the next day.

It’s a strange thing, this life with metastatic lung cancer. Since it’s not going away, and some wonderfully talented people have figured out how to contain or control it for now, we are filled with hope and making plans – not just setting goals – making plans for events that are months away.

I remember the first time I saw The Wizard of Oz on a color television at my aunt’s home as a child. Wow! And, I saw Wicked on Broadway when I went with my daughter and her daughter to NYC for my oldest granddaughter’s 16th birthday. That was spectacular, and a special outing for all of us. This time will be special and spectacular before we even see the performance, because we are doing it. Making memories.

Here I am – living life, feeling grateful, trying to express that gratitude, and finding joy in the everyday every day!

Privileged

Privilege, privileged – the word has come to my mind a lot lately as I think about my treatment and healthcare compared to others’. The “others” I speak of in this case all have access to healthcare, so I guess they too are ”privileged“: a special benefit that is available only to a particular person or group. (macmillandictionary.com) Many people in our world do not belong to the Access to Healthcare Club at all.

My mind begins to confuse the definitions and ways the word privilege is used as I consider my lung cancer treatment. The definition above doesn’t tell anything about the person or group, but in this case privilege feels good and not so good.

I definitely feel it is a privilege (something nice that you feel lucky to have) to have qualified for a clinical trial at Dana-Farber Cancer Institute. It feels really nice and lucky to be there. We work(ed) hard to get there (years of employment earning health insurance, paying fully for that health insurance now that I can no longer work, driving to Dana-Farber (250 miles one way), and on and on… But it is a privilege that even someone WITH health insurance living in some regions of THIS country cannot access. Clinical trials for my targeted therapy drug Lorlatinib are only available in a few places in the country. This drug targets only two very specific gene mutations/drivers(more on how cancer cell mutations happen), ALK(in 3-7% of NonSmall Cell Lung cancer) and ROS1(1-2%). We are lucky drugs are being developed for such a small number.

Today Lorlatinib may be available for Compassionate Use (Expanded Access), but it was very difficult to acquire in this manner until recently (now that it is near FDA approval.) I know this because not long ago one of the “others” with ROS1 developed resistance to crizotinib, the only FDA approved targeted therapy drug for ROS1. (Have I ever said that because of this mutation, standard treatments don’t work?) So, after crizotinib stops working, a ROS1 lung cancer patient has little hope unless she can get into a clinical trial. This patient lives in a region where there was not access to a trial. Drive to one, fly to one you say! Not if the person is not well enough to do so or hasn’t the financial resources to do so. Maybe she doesn’t quite meet the criteria. How about compassionate use you ask? Not available in this case. What?!!? Time’s running out. In this instance, the last I knew lung cancer patient advocates began reaching out to the drug company and the ROS1 experts in an effort to acquire treatment for this patient. I was not able to learn if help came in time.

Privilege: a special benefit that is available only to a particular person or group

I belong to a FaceBook group for ROS1 patients from all over the world. Nearly all are lung cancer patients. We are able to share information and learn from one another. I’ve found it immensely helpful in my search for understanding of this disease. This group is available only to ROS1+patients and their caregivers. A privilege that is available to anyone who would need/want it, if they have internet access, and can read and understand the information.

Even those with the education, reasonable financial resources, and health care access cannot assume the privilege of receiving my level of treatment. Lorlatinib isn’t available in all parts of the world. And, the newest of these drugs ( Tyrosine kinase inhibitors)that treat ROS1, entrecinib, isn’t available even through clinical trial right next door in Canada, according to an “other”. (That will still make only 3 drugs, 1FDA approved, to treat ROS1, and those pesky cancer cells really know how to build resistance to the drugs.)

I know what it was like before my first targeted therapy drug. I was dying. I did not build resistance to it (but had brain progression). I am privileged to be treated in a facility where I have scans regularly, where I know when I have a symptom (such as with the brain progression) it will be looked into quickly, where treatments are known and available, where a plan is ready if cancer overpowers the drug. I know of an “other” , living in another country, who died while waiting for treatment to arrive. I am so sorry this happened.

Without the many privileges I enjoy I wouldn’t be here, drinking tea by the Christmas tree, wood fire warming the room, still trying to sort the good and bad of the definitions of a word as it applies to my experience with healthcare. I know the circumstances of my life (from childhood and education to the love and support of Dan and our family) have equipped me to access the best level of treatment. But does that mean I should be privileged, should belong to the club when “others” with the same needs are allowed to die because they can’t access the correct treatment? A treatment that IS available, but not accessible for that person. I can’t change the world, but gosh, at least in our country, it seems like access to known lifesaving healthcare should not be a privilege.

And, by the way, have you heard me say lately that LUNG cancer research is way underfunded? It is the deadliest (433 Americans per day) and least funded when compared to the other common cancers. I’m making my voice heard to my representatives, and urge others to do the same. Oh yes, and radon is the second leading cause of lung cancer – just thought I’d get that in there.

I’m privileged to be able to serve on the Family and Patient Advisory Council of the Maine Lung Cancer Coalition MLCC. More on this work later.

Finding joy in the everyday im my cozy home, making memories, and loving life with Dan, family, 3 little dachshunds, and 2 Nigerian dwarf goats – that’s me, living a life of …

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