Uncategorized – polepole ~ breathe

Goals and Milestones

First I will say my scans again show stable disease. Hurrah! I am feeling grateful and blessed. In another post I will speak to this further and describe the roller coaster known as side effects. But today is a day to celebrate yet another goal met, milestone reached.

In August of 2017 I was just a few weeks into my relationship with Lady Lorlatinib. In May it was confirmed that yes the cancer had managed to sneak past Queen Crizotinib while she was sleeping and it had reached my brain meninges. I began the Lorlatinib clinical trial in early July and we were traveling to Boston every three weeks. The early side effects were horrendous, but the drug immediately began working.

During this time we continued our modified version of Camp Gramma. I remember the excitement leading up to the total eclipse that month (Aug. 2017). We bought our glasses, nearly wore them out, and hoped for sun on THE day. I cannot describe how very thrilling it was for me to watch the four campers and their cousin Jake on that beautiful summer day as they turned their faces to the sky in awe of the magnitude of the moment. I was grateful then and still today that we experienced that and so much more in our Camp Gramma days.

Shortly after that day I saw a Facebook event post about the April 8, 2024 total solar eclipse. Laughingly I hit “going”, knowing the odds and statistics were against me, but also feeling that I really had so many things to live for that I didn’t see how I could take time to die. And then I began setting more and more goals, reaching milestones, and making it a daily practice to be grateful and to find joy in the everyday every day. Every once in a while that event would pop up, reminding me of the importance of staying filled with hope.

Today is THE day! While the rest of the path of the eclipse may be shrouded in clouds, the skies in Maine (after some very gloomy weather) are clear. I am not going to that event in Millinocket, preferring a quieter viewing. This afternoon Dan, one of the campers, and our daughter will be watching the eclipse in our blueberry field on our side of the mountain. How very wonderful is that!

Thank you for all your positive thoughts and energy, your prayers, your support in so many ways. Each day my appreciation for the gift of time and life deepens. Finding joy in the everyday every day with Dan, our dachshunds, and our goats on the side of the mountain.

Survivorship

Still stable! Last week Dan and I had another whirlwind appointment day at https://www.dana-farber.org Out of bed at 3:00 AM, on the road at 4:00 (the plan anyway), and arrival (despite lots of traffic) at Dana-Farber for 9:45 check-in and screening on Yawkey 1. My blood draw, MRI, and CT scans were all at the Dana building on L1. That makes the day much easier, less back and forth, up and down. After all the tests were done we went to the cafeteria for a quick lunch before my 1:30 PM (more like 2:15) with Dr. Janne.

“Everything looks good!” Cancer wise that is. Of course my Lady Lorlatinib, who keeps her foot on the cancer, causes high cholesterol (along with other side effects). That doesn’t seem like much of a problem when you’re facing cancer here, there, and everywhere in your body. But when the cancer has been kept quiet for six years with the same medication, then the side effects of that medication take on more importance. Despite two cholesterol lowering medications, my cholesterol remains above normal levels (all due to lorlatinib). So in October I have an appointment with a cardio-oncologist at Dana-Farber, part of their Adult Survivorship Program. “Cardio-oncologists are typically cardiologists who see cancer survivors or patients getting cancer treatment who develop side effects that affect the heart. Cardio-oncologists have a special interest in and knowledge about cardiac side effects of chemotherapy, targeted therapy and radiation to treat cancer. ” Imagine that! I’ve lived with stage IV lung cancer so long that the concern is how the high cholesterol is impacting my heart health LONG TERM. How great is that? Seriously. Managing the high cholesterol is now the priority. That is just incredible to me. Not that it hasn’t been managed all along, but now it is right up there with the stomped on cancer in priority. Now, to me that is hope! And, it is part of the plan for living well with stage IV cancer, taking care of my body and mind while Lady Lorlatinib and my amazing team deal with the cancer. Long term. Huh. I just keep pinching myself.

All this can change tomorrow if Lady Lorlatinib grows weary and lifts her steel toed boot. But in those six years new treatments have been and are being developed, including one specifically for ROS1+ that shows great promise in clinical trial. And I will now add another specialist to our team for better managing my heart health for the long term.

The ride home Thursday was long, yet uneventful. Heavy traffic, slow going for a while. We listened to the Trenton Acadians’ game. My chauffeur once again maintained his perfect “trip to Boston” driving record, getting us home by bedtime. We are a great team, with terrific support around us. (Thanks to my sister for taking care of the “kids” that day.) Now back to finding joy in the everyday every day at the Salt Pond, in the garden, along the shore, and in the field gathering wildflowers for natural dyeing. Hope and joy to all.

Doing well, all things considered!

When “random” people ask,”How are you today?”, I often answer, “Doing well all things considered.” This gives them an opportunity to ask more, and maybe I get to do a PSA about the risks of having lungs.

I am doing remarkably well, all things considered. It has been a busy, happy summer watching (mostly from afar) our grandchildren and their exciting “one in a lifetime” events and accomplishments, and seeing the sun rise each and every morning. Our garden is finally producing well, and the dogs, goats and we are enjoying time at the Salt Pond. I have a new volunteering opportunity at Critterville Wildlife Rehabilitation , and a weekly art play date to enjoy.

So why “all things considered”? Why write this post? Well, never miss an opportunity to educate others about lung cancer risks for anyone with lungs. ANYONE. And, a jarring reminder. A screen in my echeck-in at Dana Farber.

I know how blessed I am to be alive and even more so to be able to do the things I do. Life and quality of life are gifts we should never take for granted. Never. Gratitude and hope are so important. Today, I think of how very much I have experienced in the past 7 1/2 years. Today I also think about a tiny baby having his first of a few heart surgeries 17 years ago. Today our heart hero grandson, one of my greatest heroes, boarded a plane to travel to play in the American Legion World Series. Blessed and grateful. Thank you to all that has carried me to this time – the Lady Lorlatinib (3 pills taken daily), research and oncology experts, and the love, prayers, and thoughts of so many. Thank you, thank you for giving me so much hope, and so much to hope for. Nothing and no one is taken for granted. With each sunrise I am filled with gratitude and hope, ready to find joy in the everyday every day. May you find the same.

That “all things considered” is something I live well with. Even though I’ve plenty of daily reminders with numerous side effects, perhaps a little “jarring” reminder is a healthy thing. Here’s the photo.

Update Time!

Margaret is a Nurse Practioner that has been part of my Dana-Farber team since my first visits in 2016. While I was a bit disappointed (because I’d been doing phone appointments and even skipped my day of tests in late January) that Dr. Janne was away , I was excited to see Margaret because it had been quite a while. “God, your lungs sound GOOD!” she exclaimed. That was after marveling over my longevity on this TKI (Lorlatinib) and in general. And that exclamation was after asking a million health related questions as she caught up with my progress, which she’d been studying for the appointment. Just before the appointment, she had consulted with other oncologists and radiologist about that day’s tests to confirm that I continue to be stable. My blood work (except for the cholesterol which is elevated due to Lorlatinib) remains normal, normal, normal. Not sick with stage IV cancer normal, just NORMAL. In this cancer world where so many things are not normal in my body, it amazes me that my system stays so strong and well balanced.

When you look at my CT scan and the report, you might understand why she asked about my breathing, and admired the sound of my left lung. Here’s some of the report:

“Similar left upper lobe to superior segment of the left lower lobe groundglass and consolidative opacities, architectural distortion, reticulation, and traction bronchiectasis representing radiation fibrosis. Bibasilar subsegmental atelectasis (partially collapsed lung, but usual for me).” But then the magic words! “The central airways are clear. . No suspicious pulmonary nodules. Stable radiation fibrosis in the left lung. No evidence of recurrence.” My abdomen scan (No new sites of metastatic disease in abdomen and pelvis.) and brain MRI ( Which usually says unchanged lesion in occipital lobe, but this time said No intracranial metastases!) were equally good.

The drive was fine, Dan does so well. There was some rain while only 32º and dark on the way, but the roads were not slippery. Traffic was heavy near the city, but we arrived on time. Coming out of the city after the already long day, traffic was heavy and quite slow, especially around an accident area. We left home at 4:15 AM and returned home at 8:45 PM. So, all in all a very long, yet very productive day filled with hope. As always a day made easier knowing the goats and dogs are being well cared for.

My next day of scans (chest, abdomen), MRI, blood work, and oncology appointment will be in August. That means a hopefully uninterrupted summer of finding joy in the everyday every day with Dan, the dachshunds, and the goats. We’re looking forward to a summer of gardening and being at camp. I’m looking forward to learning more about natural dyes, stitching, and whatever art play presents itself.

I’m doing a stitching project for the Craft and Fundraise Challenge for St. Jude Children’s Research Hospital. This is my project so far. I think it will become a journal cover. If you’d like to donate or follow my progress, I think this link will take you there: https://www.facebook.com/donate/5974691142618785/

Thanks for reading, thanks for caring, thanks for your continued prayers and positive energy. Please, always have hope and try to find joy in the everyday every day.

Trip trap, trip trap Over the Rainbow Bridge

For the year or so before I was diagnosed (Jan. 2016) I was trying hard to convince Dan that we needed alpacas in our family. I was sure they would be a great retirement hobby for me. (I was still a few years from retirement.) I think it would have happened had cancer not burst that, and every other dream bubble at that time.

But then, thanks to a diagnosis of ROS1 and crizotinib, I began to live a bit. “Okay”, I thought. “I’m not going to be able to work until retirement and we don’t know how long this medication will keep it’s foot on the cancer, so no alpacas (too much work, especially if we have to rely on others to help), but maybe…” And so, two tiny sweet Nigerian Dwarf goats, Dottie and Matilda, joined our family the spring of 2016.

That spring and summer were glorious. The two little goats were such a delight. They provided such entertainment to us, to the dozens of school children who came for a Fun Day at camp, and to my Camp Gramma campers (my grandchildren). Anyone who saw the two little goats (Dottie with her black spots and Matilda a beautiful reddish brown) that summer can still see them side hopping down the hill in the field with children running beside. An image that fills my heart with joy.

Last week our sweet naughty Dottie died in her sleep. She was only seven. She had been ill on and off, and treated by the vet and us following the vet’s directions for a while, but always felt better. But this time despite the vet’s and our best efforts whatever was wrong was simply too much for her body to overcome.

I could go on and on about how loving, friendly, and fun our sweet Dottie was. She loved us so very much. She would sit in our lap very contently when young. She especially enjoyed shoelaces, hood strings, and coat zippers. Dottie was always the first to want to help mend the fence, trying to observe closely and give advice. She was the most charming of goats, a delight to have in our family.

When we first got the two little goats I kind of assumed that they would outlive me, but I knew Dan would love and care for them. (We’ve since added two fainting goats, Buttercup and Daisy.) One should never assume anything in life. I’ve learned that well in the past seven years. Last summer I felt sad that while I could do chores, I couldn’t spend much time with the goats because of high humidity and breathing difficulties. I hope this summer will be different.

So now there are three. Matilda seems to just be carrying on. She has seemed to be much more attentive to me when I’m at the barn. This morning she gave me nose kisses like our Daisy does. Buttercup and Daisy seem unaffected. I guess goats are resilient, much like human kids often are.

So please close your eyes and imagine a little white goat with black spots happily side hopping across the Rainbow Bridge. That will be our sweet, precious naughty Dottie.

Another year!

Please, when things seem hard, look inside and find a glimmer of hope. A stage IV cancer diagnosis, or any “terminal” disease diagnosis, is such a sudden, terrible reality check. In a few days I will pass my seventh “cancerversary”. Seven years ago, on the first Sunday in January 2016, someone finally x-rayed my lungs. We then began this journey we’re on, what I consider my second life this time here on earth. In those next few months those close to me thought they might lose me. But it wasn’t meant to be. And here I am today, still with stage IV lung cancer (here, there, and pretty much everywhere), but a thriving cancer survivor. Please, feed that little glimmer of light, let it shine bright. Always have hope.

This second life we’re enjoying has been such a blessing to me. I have loved looking for new learning opportunities, even when cancer forced me to let go of many things I had so enjoyed in my former life. Hope is, I believe, what made it possible for me to say, “No, cancer, you cannot, you will not steal my joy.” I have made finding joy in the everyday EVERY day a priority.

Recently a friend sent me a copy of her 2023 Calendar book she published. It is filled with words of inspiration, words she hopes will be source of inspiration for her readers as they/we travel through life. When I received it in the mail just before Christmas, I decided to have a sneak peek to get a dose of inspiration to carry me to the start of the year. Her introduction made me certain I would enjoy this calendar and find it a source of inspiration as I travel to 2023. Imagine my awe when I turned the page and read: January 1, “Find joy in the everyday every day.” Corinne Pert. Wow, my words that have carried me through this journey with a special kind of hope, peace, and joy are now the words chosen to inspire others as they begin 2023. Wow, how very wonderful. My hope for others is that they give this simple, yet powerful mindset a try. From sunrise to Ruby Jean dachshund kisses at bed time, there are a multitude of joy filled moments in my day.

Hope and joy lead to peace within, I believe. My 2023 wish for everyone.

I don’t have a health update to share today. Just that I’m helping to positively change those statistics about lung cancer survival, and being at a research treatment center means others will benefit from my treatment journey.

This winter I’ll be cozy and warm in our winter home, on “our” side of the mountain, with Dan, the dachshunds, and the goats, with family nearby. Crafting, reading, and finding joy in the everyday every day. Blessed.

A beautiful day for a drive

Today was a spectacular autumn day for a drive. While Dan drove (Thanks, chauffeur, support person, and best friend!), I saw three deer, turtles on rocks, a lingering heron, swarming flocks of birds (unidentified, but songbird size and hundreds of them), and of course turkeys. The leaves as you head south were still beautiful.

And best of all? Those three sweet words – SCANS LOOK GOOD! No change in disease or in the blood work. So after a five hour drive south, a blood draw (all okay) and IV in, brain MRI (everything unchanged!), CT scans of chest (fibrosis unchanged), abdomen (same liver lesions, sclerotic lesions), and pelvis (pesky spot still there), IV out, and then a 4.5 or so hour drive home, we were greeted by hungry goats and happy dachshunds. Dr. Janne called for my phone appointment just as we drove into the driveway. Nothing needs to be changed, and we return in three months. A beautiful day for a drive.

Week of Scanxiety

It happens. Your appointment is coming up in a few days, a week or so, and the scanxiety creeps in. Are these muscle pains new? Could be I’ve done more walking on different terrain and stair climbing. Is my back lame from moving or …? Is this “my” neuropathy or … Why am I so tired? Could be I’ve gone nonstop doing things I love to do while getting settled again at home for the winter.

Anyone with stage IV cancer and regularly scheduled scans (mine have been at every 12 weeks for a while now) can understand and relate to this. For someone who does a pretty good job (if I do say so myself) of going about life finding joy in the everyday, it’s an unnerving feeling. I often don’t realize that it’s happening until I’m caught up in it. Today was an Aha! moment. As I completed my fourth check-in (blood draw, brain MRI, CT scan of chest/abdomen/pelvis, oncologist appointment) I came to the section that caused me to pause and say to myself, “You do a fine job of staying alert to changes while keeping focused on finding joy in the everyday every day”. And then, after grumbling to myself about why they couldn’t use answers for one test in the questionnaire for the others, I enjoyed a second cup of coffee while writing this post.

Thursday’s weather should be fine for a drive south to Boston. Thanks to my sister and our daughter and grandchildren I know the dachshunds and the goats will be fed and visited. Hopefully no one will be greeted by four goats grazing on the lawn. They think “the grass is always greener”…

Below is a screenshot of what caused me pause – the screen where I had to confirm my medical condition. And, two photos from my kitchen window this morning! Thanks for reading. Always have hope!

Perseverance

“Steadfastness in doing something despite difficulty.” That’s what living with stage IV lung cancer requires. “Where there’s a will, there’s a way” is how our dachshund Rusty lives his life. He has taught me much about the will to keep going. After multiple back incidents involving paralysis, back surgery, months of recovery, pain medications, he keeps on trying. Yes, lately at the age of 14, he sleeps more and moves around less, but he continues to enjoy life.

Yesterday was the perfect example of us finding a “work around” so we could have a grand adventure. Dan, Rusty, Ruby Jean, and I all climbed on the four wheeler for a mountain ride. Note I didn’t say “hopped” on the four wheeler, but that’s really okay. Ruby Jean helped Dan drive and Rusty laid across my lap in back of Dan. Now I can imagine friends and family trying to picture that scene! It was pretty funny. Up the mountain we went. Ruby Jean was so excited her little tail never stopped. Rusty just soaked it all in, not a bit nervous.

We traveled the fire road and woods roads up the mountain, across our “new to us” family land, behind Dan’s dad’s to our land we bought several years ago, to the back field of the “new” land to sit on a rock in a spot Dan has loved and dreamed of owning for his entire life, and a ride into the forest before heading back down the mountain. It was the best of adventures, one that Rusty would not have been able to do any other way, and I surely wouldn’t have all in one trip on a summer day. Perseverance, finding joy in the everyday.

When you see the photos of this adventure, note the freshly mown fields. Those were mown by Dan’s 88 years young dad. I’m guessing getting up on that tractor isn’t very easy, but the joy he has tending those fields! Perseverance: steadfastness in doing something despite difficulty.

Find Your Place of HOPE

First, again I received good news after my blood tests, scans, and brain MRI! Still stable. Such a great feeling! We made another day trip to Boston, with a phone appointment with Dr. Janne and a fellow. It’s so reassuring to have scans and within hours have your oncologist say he has met with the radiologist and reviewed my results. Knowing you have a team with the highest level of expertise and access to research taking care of you is invaluable. Life saving in my case in January 2016, and likely again when I had leptomeningeal progression. And, this marvelous team, which extends to the office staff, even worked through all my new insurance issues. I had to do nothing. I didn’t even have to change the tire when we had a flat on the highway (along with the other person that ran over the same sharp, unidentified object) on the way home. Thanks, Dan! (He drives, waits with me, drives, and always gets me there and back safely.)

When newly diagnosed patients ask what is important, I say that there are two things. First, find an expert, someone who specializes in the cancer you’ve been diagnosed with. And second, find a place of hope. This is my response after hearing so many stories of people with inadequate care, and/or doctors who offer no or little hope. The first may seem obvious, but is hard to find in rural parts of our country and many parts of the world. The second is often overlooked, but ever so necessary. I just can’t believe how many people are told that with stage IV lung cancer you should get your affairs in order and likely have a few months to live. No hope. This is so wrong. At Dana-Farber, even at what seems like the most hopeless time of your life, they give you facts and a treatment plan, and offer hope through what a successful treatment plan will do. No sugar coating, but clear hope offered in a kind and confident manner.

People often think I must be in remission or cured. Nope. Stage IV lung cancer can be treated, not cured. If you’re lucky, like me, to have a specific type (ROS1 in my case) that has been discovered and has a targeted therapy it responds to, then you can expect to be on your targeted therapy until your cancer finds a work around. For some, that’s a few months. For others it is a few years. For a very few, it is a decade! And, new treatments are being developed and tested all the time (a long process though).

In the meantime, cancer treatments have many side effects. I repeat this to be a voice for the many who may look “healthy”, but are actually living well (as I am) with a disease, or may be really struggling. Right now I have a slightly collapsed lung. Maybe it’s not just the high humidity that’s been bothering my breathing. This has resolved in the past, so I know it will again. And then there’s the neuropathy. One of the reasons I keep stitching is to keep my fingers working. They’re in sad shape. I drop small things a lot and can’t pick up small things easily. But I’m still stitching! The neuropathy has crept up my hands to my arms, and up my feet to my knees, but it is tolerable, no medication required. High cholesterol from Lorlatinib? There’s a med (or two in my case) for that. I’m sure you get the point. Just be kind and considerate please. We don’t know everyone’s story.

My latest art play, in addition to stitching (just started a Christmas fabric journal), is natural dyeing of fabric and papers, in addition to eco-printing. Started with onion skins because they’re always (in my experience) successful, and some purchased madder extract (because that is supposed to also be successful). What a great science experiment! Animal fibers (wool and silk) dye differently than plant fibers (cotton, linen, hemp), and each slightly different from the others. Lots of variables – pre treating, pH, mordants, modifiers, time, and so much more. Great learning for me. And don’t worry, I’m still making journals!

Our garden is doing well. We’ve had lettuce, greens, and peppers. Peas and zucchini soon, and then so much more hopefully! The blueberries on the mountain are ripe. Dan and I, the dachshunds and the goats are enjoying our summer. Finding joy in the everyday Every day.

I appreciate your continued support, love, positive energy, and prayers. I hope you are living well and finding joy in your everyday. Thanks for reading!

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