who knew? – polepole ~ breathe

WE are doing well, thanks, all things considered!

“Doing well, thanks, all things considered” is often my response to “How are you?” When you’ve lived with stage IV cancer, its treatments and their side effects for nearly 10 years, I think that’s a fitting response. But it has recently taken on a new level of meaning to me.

If you’re a friend on Facebook, you’ll know that Captain Ruby Jean (our 10 year old dachshund) and I spent several days in late September helping Dan get in his lobster traps. It was a rather celebratory time, although hard work for Dan, as it was marking Dan’s entry into retirement. The following week Dan started his fall tasks, beginning with getting eight cords of firewood into the basement. On October 1 after a day of putting four pick-up loads in the truck and then unloading and stacking it in the basement, we settled in to watch baseball. Things took an extremely scary turn.

Long story short – Dan had a major heart attack that evening. He had excruciating pain. Our brother-in-law drove us to the Emergency Department of our small local hospital. (Way quicker than waiting for an ambulance.) There they were ready for us and they did what they could before sending him by ambulance to a hospital that had cardiologists ready to assess and address his situation. His Left Anterior Descending artery, commonly know as the Widow Maker, was 90% blocked. (Everything else looks great, not even slightly blocked.) A stent was placed and he was on his way to recovery. He came home in a few days on three blood thinners because of pooling in the bottom of his heart from damage occurring during the heart attack. (We’ll know more about how it is healing after the next echocardiogram in January.) We were just figuring things out when a few days later Dan developed pericarditis (inflammation of the sack/lining around the heart). Very painful. After two more days of hospitalization, more medication, and new information on what to do when we began to settle in again. Totally new world for us.

But now things are looking so much brighter! Dan began cardiac rehab. His pericarditis pain which hurt whenever he did much of anything has lessened to just a twinge, even during rehab or walking (polepole) to his hunting blind (no climbing or long treks yet).

Ruby Jean has been a real trooper as they say. She rides along to cardiac rehab, waits in the car during appointments, and loves the extra “resting” time. It was a crazy time for her too. Her dad is “her person”.

Next up? On our side of the mountain is a fir tree we’ve been grooming for a few years. I think this is the perfect year for it to become our Christmas tree. And, hopefully Dan’s dad will feel like joining us for Thanksgiving dinner again this year. And, then before you know it…

So this winter, you can find us snuggled up in our winter home warmed by the wood stove. Or, in the barn visiting the goats. Or, enjoying the sun’s warmth in our greenhouse. Happy and grateful to be doing well together, all things considered. Keep finding joy in the everyday every day! Each and every one is a gift.

The Boring Words We Love to Hear

“Unchanged”(many times), “Stable”(many times), “No NEW Evidence of Intracranial Metastatic Disease”, “Stable Radiation Fibrosis”, “No Evidence of Recurrence”, “No, No, No, No NEW” (here, there, and nearly everywhere).

It all adds up to another good report at Dana-Farber Cancer Institute yesterday. Even the things that may seem like concerns likely aren’t. Yes, the radiation fibrosis plagues my poor, little left lung. Yes, I’ve a slightly collapsed lower lobe in my right lung. (Gotta work those lungs, use the spirometer, climb those hills, lift those lobster traps!) Yes, there is increased size of sclerotic lesions in the left and right pedicle of my L4. But even though the report says “likely osseous metastases” (secondary cancer), it was decided that it is most likely instead a result of aging. (Something I’ve always wanted to be privileged enough to experience!) We will see what is decided in 6 months when I’m scanned again. For now I am just amazed at how well I am, all things considered! My Lady Lorlatinib continues to keep her red high heeled boot on that nasty little ROS1 cancer. How she stays so strong and vigilant is a miracle.

My blood work was also good. Some of the changes I wondered about were likely caused by the prednisone I had to take for the first time in preparation for the scans. After 9.5 years, I had my first allergic reaction to the contrast last time, so forever more I must pre medicate. Little did I know it is such a high dose that I had the jitters and insomnia last night… Big sigh. But no allergic reaction, so that’s a good thing. My cholesterol was just above normal. Everything else (not affected by the prednisone) was NORMAL. (Another beautifully boring word.) My neuropathy (as reported by me!) is unchanged and tolerable (another one!). Research saves so many lives. Call your members of Congress to ask for reinstated research $!

It was a beautiful day for a drive despite the bumper to bumper traffic into and out of the city. The leaves are beginning to change, we chased the moon home, saw several deer, a heron, turkeys, a fox, and a large (eagle size) unidentified bird. Dan even stopped by the Penobscot Narrows Bridge so we could catch that moon we had chased for hours. It was a long, but necessary trip with a good outcome. We are lucky to have family and friends happy to help with Ruby Jean and the goats so we had no home worries while gone. We feel blessed and grateful.

I’ve continued my advocacy work with the American Cancer Society. Here’s a link to the latest project I was asked to participate in to encourage everyone to ask your representatives for funding of cancer research.https://researchvoices.fightcancer.org/story/corinne/ https://act.fightcancer.org/a/cancer-research-funding-isnt-optional-its-essential-2?_gl=1*ym2s0l*_gcl_au*MTI0NTQzODAwNy4xNzUzMDMwMDg4*_ga*ODA3MDExNTg5LjE3NTMwMjk5NDA.*_ga_YVX9D1V8EX*czE3NTc2OTk5NTYkbzIkZzEkdDE3NTc2OTk5NzEkajQ1JGwwJGgw

My art play has taken a bit of a back seat to the garden, canning and freezing, making pickles, and helping Dan get in his lobster traps. Hopefully I’ll do some more dyeing in the next few weeks. So far I’ve done some with goldenrod and marigolds, and I have sunflowers drying and waiting to be used. Ruby Jean loves our walks up the hill, picking beans (self serve), and being a boat captain. With the return of school came the return of weekly family breakfasts for any who can come. Soon it will be apple picking time! Life is full.

Science Research Matters

See you in September. What? Wait a minute! First, if you lived in a certain era, it’s difficult to not start singing the song. But, for me yesterday, this was both a welcome and a scary surprise.

Yesterday, we had another very long day going to Boston and back. My chauffeur was tested by wind, rain, fog, and darkness, but we had a very positive outcome with stable disease once again. Still, having been scheduled for scans and brain MRI every three months for many years (starting with every three weeks when first on lorlatinib), I was surprised when Dr. Janne suggested 6 months for my next appointment. (He quickly said we could try 5 first.) Of course it is a welcomed step. It means the Lady Lorlatinib has safely kept me from progression long enough that we might let our guard (not hers though) down a bit. It means cutting our Boston trips in half. That said, it is also scary. ROS1 is an aggressive cancer if not stomped on as Lady Lorlatinib, my miracle targeted therapy drug, does so effectively. Being checked more frequently means a better chance of catching an escape of that crazy little ROS1 before it attacks me here, there, and everywhere. He is vicious. I know. I remember. And, Dr. Janne and others have said not to count on being able to know when it’s opened the door, racing around in me like a madman. Yes, of course eventually I would have symptoms, but not perhaps as soon as one might expect or hope for. All that being said, I must be brave. I trust Dr. Janne. And, it is nice to hope for an uninterrupted summer at camp. Thoughts, prayers, fingers crossed, positive vibes – I’ll take them all.

Without SCIENCE RESEARCH I would not be here. People might say, “Oh you don’t know that.” Yes, I know it. If you are thinking, “Wait, don’t you believe you should thank God for answering our prayers, and that is why you are here?” If God’s grace is why I am here, then of course science research must be part of God’s plan. And every minute of every day I am so very grateful and try to live my life in a way that demonstrates that gratitude.

You know my story of clinical trials in which scientists study a drug’s effectiveness treating a specific disease or in my case a specific gene fusion found in only 1% of lung cancer patients. It takes years of research, brilliant research doctors, programs in which studies take place, equipment and staff to support this research, and funding to create these drugs for cancer (and of course other diseases). Cancer does not discriminate. That is one of the hardest things about our long day at Dana-Farber, seeing people from the very young to the very old who come there for their hope. People who may look fairly healthy, people who look very ill, all hoping for their miracle. Their miracle that may be in a clinical trial right now. A clinical trial that may be in jeopardy because of the Trump administration’s withdrawal of funding. (This has already happened at NIH. At Dana-Farber, Dr. Janne said they do not yet know the full impact of this, they’re trying to figure this out.) Many of those same patients may receive their health care through Medicaid or Medicare, also on the Republican/Trump/Musk chopping block. While it may seem like this is not about you, it is. If you think you don’t benefit from medical research or these forms of healthcare, I’m thinking you should think again. But, after that if you still don’t, think about your family, friends, and neighbors. Some of them certainly do. Please don’t ignore this crisis we’re in until it directly hurts you. Become informed, get involved, call your Senators and members of Congress.

If all goes well, Dan, Ruby Jean, the goats, and I will now simply enjoy the winter and spring here on our side of the mountain. Maybe I’ll even finish the “braid-in” rug I’ve worked on for a while now. (It’s curling and Ruby Jean may claim it for a bed.) Lobster gear will be worked on in the field, the boats will be readied for another season of fishing, and before you know it the boats and traps will be in the ocean, and we will be planting our garden at camp. Thank you for staying with us on this cancer journey, and thank you for your well wishes, positive vibes, love, and prayers. We feel blessed and are filled with gratitude.

Happy Days

Yesterday was the longest day in Boston that we’ve done. Out the door at 2:30 AM, my first appointment was at Brigham and Women’s at 9:00. Hard time of day to arrive in the city, but we arrived, parked on the fifth level down, checked in for screening at Dana-Farber, walked across the inside bridge to Brigham’s, and made/found our way to the Shapiro Cardiovascular Center for a CTA of my heart. This was a new and different kind of experience. Having had dozens of CT scans in the past, I thought this would be similar. It was similar, but not as similar as expected. First they needed to insert the IV and take my vitals. When the nurse saw my resting heart rate of 105, she immediately called for a doctor. I wondered why because that’s just my heart rate since being on lorlatinib. Well, I learned that your heart rate needs to be around 70 to get a good image. So, the first two pills administered by the doctor got it down some but not much. The next one, nothing. No worries, I learned, as they can just administer it intravenously. (This, after waiting over an hour for things to take effect, all the while thinking I’d be late for scans at Dana-Farber.) Then came the scan. It was similar, but not, to my usual scans. Lie on hard table, arms over head. Only I had the sticky monitors on me. And, I had to have two nitroglycerin pills under my tongue to open my blood vessels, I think. (Like the slowing of the heart rate, to get the best images.) The contrast for this was the same, with that feeling that you’ve wet yourself as soon as it enters the bloodstream. The scan was quick, like my others. When done, I had my blood pressure taken lying down and standing (something about the heart rate lowering med) and I was on my way.

We made our way back across the bridge for my bloodwork, CT scans of chest/abdomen/pelvis (without contrast due to having contrast already that day), lunch, brain MRI, and oncology appointment at 3:30PM (30 minutes late in reality, but they must have been with someone who needed them more yesterday). Then, finally the drive home, facing rush hour bumper to bumper traffic for nearly 30 miles before breaking free to cruise home for a 10:40 PM landing. Phew. What. a. long. day… The dachshunds were very happy, but made sure we knew they had been well cared for by our grandson. The GOOD NEWS of the day is that my heart looks normal, no damage from my treatment (radiation years ago, targeted therapy drug side effects), and the cancer hiding out here, there, and who knows where in my body is STABLE, still being pinned down by My Lady Lorlatinib’s red, sparkly, high heeled, steel toed boot. Hip, hip, hooray!! Thank you, My Lady (and all those who made her possible, and to my team).

Remember the title of this post is Happy DAYS. Yesterday certainly was one. Today is absolutely another. Today is our forty-ninth wedding anniversary! Yup, 49! For a while we didn’t dare dream we would reach this number. Here we are, and oh how happy we are to be here, together looking back at a life filled with family, love, joy. (I know, I know we’re much too young to be married this long.) After a long day yesterday, we had a quiet day today, with a trip with the dachshunds to get take out for dinner, celebrating by simply savoring some delicious food and our time together. That precious gift of time. Happy anniversary to us, Dan. And may we share many more years together in gratitude for our gift of time.

One goal for this blog is to spread hope about living well with stage IV lung cancer, especially, but really any chronic disease. Another is to share information about ROS1 and treatment, and keep you informed about my journey. Thanks for reading. Now I’m off to spend my summer finding joy every day in the everyday, in the field, along the shore, and in the waters of the Salt Pond. Our world needs joy. Please try to find some, make some, share some.

Just another day in Paradise

Wednesday’s day trip to Boston and back was uneventful. While I still do not know exactly what “ill defined stranding” is, what was in my abdomen had nearly disappeared. Almost the “poof” I hoped for. It was decided to have been inflammation and will be watched in my 3 month scans. Up next, but not until late June, is the CTA Coronary Arteries to see what damage, if any the high cholesterol (lorlatinib side effect) and the radiation fibrosis may have caused. If damage is seen, well, there’s a treatment for that.

The next month for Dan will be getting the boat ready and in, and we will spend more time at camp and getting ready for our garden, along with attending ballgames and art play of course. Sounds like joy filled days to me. Thanks for caring.

Always Something…

Last month I posted that we had traveled to Boston and my scans were stable once again. That is the best news one can hear when you’ve lived well with stage IV lung cancer (here, there, and not quite everywhere) for 8+ years and are approaching 7 years on the same TKI. We remain feeling blessed and we’re grateful to all(science, people, hope, and more) that make this possible.

On March 27 I saw Dr. Nohria, the oncology cardiologist I was referred to because of years of high cholesterol, caused by Lorlatinib (also known as lorbrena). After an ECG we went over my history and she decided I should have a different scan than I’ve had before – CT Angio Coronary Arteries. She thinks it is likely that there is radiation fibrosis as there is in my lung (and that side was zapped), and that coupled with the years of high cholesterol may have caused something that needs different treatment. But without seeing this scan, she cannot order the different medication (insurance will not cover it unless damage has already occurred). I couldn’t get the scan that day or the next (when I had all my other appointments), so we’re aiming for June 27 when I have my next day of scans. It is scheduled at Brigham, I just need to make sure with all the contrast, etc. that it is okay to add another scan in addition to the chest/abdomen/ pelvis CT and brain MRI I’ll have that day at Dana-Farber.

And then… the day after we returned home the NP on my care team called and said the radiologist had seen some “Ill-defined stranding/fluid in the left upper retroperitoneum” when reading the abdomen scan. Mee-Young Lee said it is probably not related to my cancer, but something to watch and recheck. Okay… so Wednesday, May 1 back we go to Boston for a scan and an appointment. If you’re interested in knowing more, research something called “fat stranding”. I still have no idea what it is or if we should be concerned. But, better safe than sorry.

Not to complain, just to say (for those interested, for the benefit of others going through something similar). Over the course of this many years the side effects of the radiation and the medication have a cumulative effect. They are not “stable”for all these years, but increasingly worsen. So far it’s all been tolerable and manageable. That’s just one of the joys of living well for 8+ years with stage IV lung cancer controlled by a TKI. I’ll take it. The other joys in our lives far outweigh the burden/difficulties. For example, this week our Heart Hero grandson turns 18! There’s an actual bridge between our two places of HOPE, Children’s Hospital Boston and Dana-Farber Cancer Institute. Dan and I are definitely feeling blessed and grateful! What joy this young man has brought to our lives as we’ve watched him grow and follow his passions.

Finding joy in the everyday every day. That’s me, I hope you can too. Love to all.

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.

Don’t Wait

If you live in a rural area and you or a loved one gets a lung cancer diagnosis (or any stage IV cancer diagnosis), please consider traveling to the nearest cancer treatment center rather than being treated locally. Stage IV lung cancer has a high mortality rate and the expertise of oncologists and the availability of testing and treatment at a treatment center such as Dana-Farber may just save your life.

Recently someone thought they knew why I went to Dana-Farber so soon after learning I had a tumor in my left lung hilum (where a pulmonary artery, pulmonary veins, and the primary bronchus are). While that person was incorrect about why we knew to go to Dana-Farber, her comment did cause me to think it might be a topic of interest for this blog. So…

In 1994 my father died of lung cancer (no, my cancer is not hereditary). I remember taking him for brain radiation the winter before he died. Sometimes the machine would not be working, or there would be a backlog of people. But it was what was available then and there. But at the same time another person with lung cancer in our town was treated at a cancer treatment center in Boston. He survived. While I don’t know if that is why, that stuck with me. That, coupled with learning about the Jimmy Fund and Dana-Farber from years of Red Sox watching, caused Dan and me to “make a pact” that if one of us (and one of our family if we could convince them) got cancer, we would go immediately to Dana-Farber.

When my PCP said I had a mass and it was unlikely that it could be anything other than cancer, Dan and I said to each other (while still in the exam room) that we knew what we must do. But to get an appointment at Dana-Farber, you need a cancer diagnosis. So I had my bronchoscopy and my PET scan locally (an hour from home). Things move slowly locally and I was dying. So I researched how else I could get treated in Boston or speed up the process. I discovered that in just days I could get an appointment at Brigham and Women’s Hospital’s thoracic center. And then, just before we went I received my lung cancer diagnosis. After seeing me and reviewing my medical records at Brigham and Women’s, I was sent to Dana-Farber that same day I think. Things are really a blur for me, but the next few weeks included testing (that would find the ROS1 cancer), a liver biopsy (yes, that was lung cancer hiding there), and radiation (as palliative care, trying to shrink the tumor enough to keep me alive until the test results came back). The experts at DF knew that a healthy, nonsmoker likely had a treatable gene mutation or gene fusion. That’s why they fought my insurance to have the testing paid for. The insurance company (yes, the doctors who review the claim for them) thought I could wait and see how the radiation or other routine treatment (chemo) did first. And that is what would have happened if I had been treated locally. I would have received treatment that would not have been effective for the specific cancer type growing in my body. Let’s just say that I would not be here writing this.

I am very grateful for the quality health care we can receive locally. I think it is important to know that there may be better options. When your life is in jeopardy I believe that you need to find the highest level of expertise that is accessible to you. In my case it was a simple test. A test that they were doing for lung cancer patients at Dana-Farber. But it was not a test that was being done routinely in most places. It still isn’t in some places. Find that place of expertise.

My onco-cardiology appointment was moved to the day before my day of testing and my oncology appointment in December so that we wouldn’t have to travel twice. So for now I will keep on finding joy in the everyday every day, watching the sun rise and hoping its rays of hope will spread throughout the world so we may all live in peace. Thank you for staying with me on this journey, with your prayers and thoughts of hope and strength.

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.

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