“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.
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.
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.
Last month was my ninth “cancerversary”. I was diagnosed with stage IV lung cancer in January 2016. But it was in February 2016 that I was rescued from dying. If you think I’m exaggerating, ask Dan. It was then we found our place of hope in Dana-Farber Cancer Institute and the incredible doctors, nurses, technicians, and staff who work there. There just aren’t enough or the right words to express our deep gratitude and appreciation for not only the excellent treatment, but for the way they truly care for patients.
In my years at Dana-Farber, I’ve only had two oncologists (and a radiation oncologist) and two nurse practitioners. Professionals stay at Dana-Farber, it must be a good place to work too. Dr. Gandhi was our rock when I was first diagnosed, and after she moved on (she’s in a different department) Dr. Janne has been my oncologist. He is always just what we need when we need it, be it the bearer of good or difficult news. A truly outstanding human being in addition to being a brilliant researcher, professor, and oncologist.
Since that first x-ray that showed a mass in my left lung hilum (contains major bronchi, pulmonary vessels, and lymph nodes), I’ve had one bronchoscopy, one PET scan, one liver biopsy, one spinal tap (when the cancer found my CNS), one heart CT (to see what the radiation and high cholesterol has done), one radiation mapping session (resulting in 4 tattoos!), 15 rounds of radiation (during which we stayed at the Hope Lodge in Worcester, MA), 22 ECGs (done during the lorlatinib clinical trial), at least 47 blood draws, 47 CT scans (chest, abdomen, pelvis all at the same time), 40 brain MRIs, and approximately 60 oncology appointments (went frequently at the start of the trial, several with radiation oncologist). That’s a lot of trips from Blue Hill to Boston. Dan has been my constant companion; driving, waiting patiently outside testing rooms (or in the car during COVID), and being there for my appointments. Other family members have joined us, or helped to care for things at home.
I started crizotinib as my first treatment. After 16 months, when the cancer found my brain meninges, I began lorlatinib. It reduced the cancer by 80% quickly, and I remain stable on it today. The drugs have some nasty side effects (but the alternative isn’t really one is it?) and there are other medications, ways of eating, and self care that help. As I say when asked, “I’m doing well, all things considered!”
There are at least two other drugs that could be available to me if that rotten little ROS1 finds a work around. I am concerned that they may not be if this administration takes funding away permanently for cancer research (in my case a rare disease, less than 1% of lung cancer patients have ROS1+ cancer). Fingers crossed, good wishes, hopes, prayers – however you choose to support me (and everyone with this and other diseases), all are welcome! Thank you to those who have supported me over these nine years. I am an outlier on this drug, but still I hope for many more years.
This winter we’ve stayed cozy with the wood stove warming our home on our side of the mountain. Ruby Jean, our single little dachshund, has adjusted to being an only child, and has gotten a little chubby again with no chippie watching to do outside. The goats have grown thick, fuzzy coats and they too are cozy in their barn. And soon spring will be here and the goats will be entertained by Dan and Tim working on their lobster traps and their boats in the field, and Ruby Jean and I will be looking forward to getting to camp.
That’s my ninth cancerversary update! We go back to Boston March 6, having postponed it a month. I will post an update then. I hope that even in these difficult times you are able to find a little joy in the everyday every day. Try it, it surely helps me.
Still stable! On October 10 we made our quarterly day trip to Boston to the Dana-Farber Cancer Institute. There I was able to have labs and PICC line, CT scans of my chest, abdomen and pelvis, brain MRI, and an appointment with “my” thoracic oncologist all in one day, receiving the results from each that day for the oncologist to review with me. Each test had already been read by an expert. It’s amazing to me, coming from a rural town where things move slowly in medical care, that I could walk in at 10:00 AM and be on the road by 5:00 PM with all this being done and reported out. We always feel blessed and grateful to have this care, and that I continue to be an outlier in cancer statistics.
It was such a colorful day from start to finish. The drive down was filled with sunshine and beautiful fall foliage, and the day ended with a light show as the Northern Lights kept us alert and guided us home.
If you’ve ever been loved by a dog in the way our Rusty loved us, you are indeed blessed and so very lucky. Our boy Rusty’s body gave out on him at age 16.5.
In the spring of 2009 we decided to look for a dachshund rescue to join our dachshund Rocky. (Rocky loved walks in the woods with his dad. Rocky died of cancer in 2015.) We found our precious Omi (Naomi, named by her foster mom), the sweetest girl anyone could ever hope for. She arrived in New Hampshire on a transport from Florida, with the scars of her past visible on her body and in her behavior (loud noises, even dropping a fork, terrified her all her life). She had been fostered by a wonderful lady who brought her back from starvation, and loved her enough to allow us to giver her a loving, forever home. (We had to have a home visit even by the organization.) Everyone who met Omi could feel the love shining out of her being. We always marveled at Omi’s ability to love so deeply despite her past. She loved everyone and everyone loved her. She was, and now is forever our sweet Angel Omi.
At the same time that we found Omi, a young male with dark, thick red fur appeared on Coast2Coast Dachshund Rescue’s site. I just knew he had to come live with us as soon as I saw him. “Seriously?” “Yes, Dan, I’m serious.” “Three dogs? Can we do that?” We did. We needed to. For the dogs and for us. Sad changes were happening in our lives (we lost both of our moms in a year’s time) and this new challenge would be a joyful one, occupying our time, minds, and hearts with bits of happiness.
Rusty (his name which matched his color given at birth, he was given up by a family at age one and fostered by a truck driver and his sister) too arrived on a transport from Tennessee to the pick up spot in New Hampshire. Dan says from the moment Rusty saw me, Rusty knew I was his human. It was instant bonding. I was, and remained throughout his life, his safe place. That’s not to say he didn’t fiercely love Dan, he certainly did.
At first Rusty was so timid that we thought he had no voice. (Wow, were we wrong on that one!) He ate so nervously he would throw up. But those thing changed fairly quickly as he settled in with Rocky and Omi. Rusty loved to bark for barking’s sake, and everyone will tell you that he loved to eat. The one thing that never changed, I believe, was a fear or distrust of people. Therefore he was likely the most misunderstood dachshund we’ve had. He was what psychologists term “slow to warm”. And most people simply didn’t have the time or maybe the desire to create a loving bond with Rusty. Until he was no longer able to charge the door, I would need to hold him when someone (except for a very few people) came in the house. He tolerated family and friends, but he truly loved his Aunt Nada and his nephew Lucas, and my friend Kathy’s visits always meant some extra treats.
When Rusty was young, he loved to chase squirrels and dig holes. He would swim if he saw a need to such as a gull to briefly chase from shore. But he truly never learned to play in the traditional way. The one thing he loved to do though was roll! He wrapped himself up in his blankets and rolled and rolled. If he could pull Dad’s jacket onto his dog bed, you’d see him with his nose poking out the sleeve. And he was our “noodle boy”, so flexible that he could practically tie himself in a knot. I was surprised, even though it is a dachshund thing, when he developed IVDD (disc disease) because I thought a noodle would never break, just bend. But in Rusty’s later years, even after his back surgeries and subsequent back injuries, and no longer a noodle, he simply loved to roll. That was Rusty’s play.
Rusty was usually sitting beside me, following me from room to room, lying by my feet. I knew he loved me. But my understanding of how much Rusty loved me became clear in 2016. The Rusty that I will forever remain so very grateful for is the boy who, still healthy and strong, spent hours snuggled beside me when I was “dying”. That winter we were living in our camp (while our home was rebuilt after a fire). I was so very ill, newly or not quite yet diagnosed with stage IV lung cancer. I was focused on living, but those around me I know now were afraid I would die before a successful treatment could be found. Dan took over all the household chores and business, and cared for me. Rusty stayed with Mama. No matter what else happened (when we were not in Boston) my pal Rusty was by my side on the futon in the loft at camp. And that attachment simply never changed. He was my constant companion for the next 8.5 years. When we moved home that spring, he continued to watch over me and just never stopped.
And so, in Rusty’s later years, beginning with his first back surgery (He had a funny hop run after that) and through subsequent back troubles, including one where we were given no hope from the experts, it was my privilege to lovingly take on the role of care giver for my boy. His will to live and perseverance was as strong or stronger than any being I’ve met. With his second paralysis we were told by the neurosurgeon that he had less than a 50% chance of walking again with surgery, a surgery that cost $9,000. We’d been through it before when he was a little younger and stood a better chance of recovery. It was weeks of recovery and a very painful surgery. It had meant leaving him. I just couldn’t see putting him through all the stress and pain with little chance of success. I thought our days together were few. But the ER vet talked with us about other options, saying that sometimes with absolute rest, there might be some recovery, and we might have time to consider a cart for him to be mobile. Dan saved Rusty that day. I was not convinced that I could do the work needed to bring him back. And there were so many what ifs because of my cancer treatment and having to depend on others, so much to consider. “We have to try,”said Dan. He knew Rusty and I would both give it everything we had. The ER vet said we should see some movement (his hind end was paralyzed) in a week, and in two weeks he should be able to move his legs, maybe walking with help. But if he wasn’t able to move by then, we were told he wouldn’t recover with just rest and we would have to decide if we could manage a dog with no use of his legs, incontinent, and more. So armed with steroids for inflammation, gabapentin for nerve pain, and a glimmer of hope, we brought him home. For hours a day I sat on the couch with Rusty by my side. I carried him outside and then supported him with a sling under his tummy, and even at first needing to express his bladder. I kept him ever so still. I carefully massaged his legs. For days. There was no thought of crating him because he got frantic even with gates between rooms, never wanting to be caged. After a week, no sign of movement in his hind end. I spoke with Rusty’s local vet. She thought we’d be facing two options: life as we were (with the addition of a cart for limited mobility or euthanasia. I was definitely feeling tormented. I saw no way that I could take care of him disabled to this degree, and there was the impact on all who helped when we made our trips to Dana-Farber Cancer Treatment. But our boy Rusty was not to be underestimated. On day twelve, with decision day looming large, he wagged his tail. Yes! His tail moved! At that moment I knew we would make it to some form of recovery. Rusty’s strong will, our perseverance, Dan’s support of our work, and love, so much love led us to victory. It was weeks more before Rusty was walking on his own, unsupported, and he never walked smoothly again. But he became independent again, even able to use the ramp to go in and out on his own. While outside Rusty’s nose was always. working, searching the air for something, someone to bark at. This became more pronounced as his hearing began fading in his “old age” and he relied more on his sense of smell.
This past spring it was obvious that Rusty’s body was fairly quickly making life harder for our boy. A quality of life visit with Rusty’s vet eased my worries that he was in pain. He was simply wearing out. I made the decision to give Rusty one more Salt Pond summer, determined to pour love and joy into his final days, weeks, months, however long we had together. We did as much of the things he loved as we could. He even went berry picking on our side of the mountain at home, walking around a bit. At the start of the summer Rusty could walk on the beach a little once carried down. Then when that was too much, he could walk in our quiet backyard. And then finally, when I carried him out he would do what was necessary and be content for me to pick him up and carry him in. He continued to enjoy his food (becoming even more demanding), did some modified rolling, followed me around, and soaked in our love. His built-in alarm clock still sounded regularly for my breakfast, lunch, and dinner times as well as his and Ruby Jean’s meal times.
In the final few weeks of Rusty’s life, his behavior changed. He alternated between barking, sleeping, wandering the camp, and following me less. But he was still eating great and slept at night. Another conversation with the vet determined he may be suffering from dementia. She thought we should consider Rusty to be in hospice care with us now. She was really thoughtful and thorough in her approach and her explanation of what we might expect. She prescribed some medication for pain and to help him relax, sent me a link to a website about the choices we can make for our pets. https://www.lapoflove.com/how-will-i-know-it-is-time
On Sunday, Sept. 1 Rusty’s body let us know it was time for his final vet visit. It was the right decision, hopefully at the right time. Dan, Ruby Jean, and I were there. I held my boy as he took his last breath here on earth. He was 16.5 years old. (115 if you believe in dog years) A full life. But oh how missed Rusty is! I can’t begin to describe how very quiet it is without his voice, yet we feel his presence everywhere.
And now, Ruby Jean is an “only” in our home. September is her birthday month. At 9 years old she has never really been alone. We brought her home when a puppy just before my cancer diagnosis. I’ve thought she always wanted to be an only child, but she surely misses her Rusty. She has chosen the dog bed with the blanket that Rusty last rolled in as the one she uses, not her usual one. We’re filling this new life with lots of outdoor time, Chippie watching, four wheeler rides, hiking in the woods with Dad, even going to a soccer game. She is her own little dog who loves sleeping in, chasing balls, killing squeak toys, is passionate about watching but never hurting chipmunks. She loves going anywhere with her dad. Rusty loved eating chicken and boiled eggs for treats, she loves raw carrots, beans, and cucumber. Ruby Jean picks her own blueberries in the field and beans in the garden. She doesn’t bark for attention, but taps you on the leg. Like Rusty and Mama, she is a homebody, so we have some socializing to do.
Eight years ago I worried about leaving Rusty behind if the cancer in my body couldn’t be controlled. Thanks to science and the expert care I receive at Dana-Farber, along with the hope, positive thoughts, and prayers of many, I was able to be here for Rusty’s entire life. He was a huge piece of my joy, my hope each and every day. He will always be Mama’s Boy.
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.
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.
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.
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.
The past week was my Cancerversary Week or maybe this month is my Cancerversary Month. At this stage in the game of life or cancer journey, this is definitely cause for celebration. Eight year with stage IV lung cancer is definitely remarkable. Thanks to two targeted therapy drugs, thoracic oncology experts at https://www.dana-farber.org, research scientists, the hard work of my family (Dan has made at least 80 trips to Boston and does whatever needs to be done without complaint. My sister has done so much for us from the beginning, and our children have taken care of things at home) and the hopes and prayers of many, I remain “stable” with the Lady Lorlatinib holding her high heel firmly on little ROS1+.
Before I recall the journey we’ve been on, I must express my gratefulness and a deeper gratitude for this gift of time. Together Dan and I have had so many more wonderful experiences to enjoy together, including our grandchildren’s graduations and sport events galore.We’ve been able to enjoy our time at camp watching the sunrise, the sea life, and our garden. And, of course, time with family, including our pet children. My appreciation for all life has to offer in everyday, simple ways has grown as I’ve found joy in the everyday every day. Has it all been blue skies and calm seas? Of course not. But what a gift that I could be here and well enough to help when times were and are tough.
When I made the decision, in May 2017 after the cancer found my meninges, to give up a piece of my life and stop teaching, it was because it was evident that keeping my body and mind as fit as possible was the only way I could survive what I would go through as a stage IV lung cancer patient with cancer here, there, and not quite everywhere in my body. I was about enroll in a clinical trial, requiring frequent trips to Boston. We had already been through a lot. Now, looking back over the eight years, having had radiation, biopsies, spinal taps, over 70 oncology appointments, 50+ blood draws, more than 40 CT scans of my chest/abdomen and sometimes pelvis, at least 35 brain MRIs, numerous ECGs, and medication side effects, I know it was the correct decision for my body. Staying alive to hopefully thrive was (and is) the priority.
EIGHT YEARS ago on Sunday, Jan. 3, 2016 Dan took me to a walk-in clinic because my undiagnosed cough cough had turned into “Now I can’t breathe.” (We were staying at camp and I couldn’t walk up our small hill without stopping to rest.) The NP at the urgent care was the first person to do a chest x-ray. (I had been to my PCP numerous times since early October, my chiropractor, the ER. Everyone thought it was linked to the stress from the house fire.) I could tell when she returned from seeing the x-ray that she was concerned and really wanted to help me breathe better. She did a nebulizer treatment, said that a radiologist would look at my x-ray and send results to my PCP. The treatment did little to help, but I sensed that she was on to something. The next day I received a call from my PCP (nothing happens the next day where we live). There was something seen in my chest x-ray that required I have a CT scan Wednesday morning. Holy smoly! That’s quick. Something? Like what kind of something? I had the scan on Wednesday and an appointment with the PCP was scheduled for Thursday AM.
On Thursday, January 7, Dan and I waited for the doctor to come in. We really already knew what to expect, but were holding on to the bit of hope not knowing the details provided to us. This lady was not good at hiding her emotions when she came in. Dan and I didn’t even have to hear what she said to know what was wrong. A mass in the left lung hilum. (The left hilum lies below the arch of the aorta and anterior to the descending aorta. The left main bronchus lies at the most posterior aspect of the hilum, with the left superior pulmonary vein located anteriorly and the left inferior pulmonary vein occupying the inferior portion of the hilum. The left pulmonary artery is anterosuperior to the left main bronchus. Pulmonary veins always lie anteroinferior to the pulmonary artery. Radiopaedia.org) ”Could it be anything other than cancer?” ”Not really, I’m sorry.” It was then that Dan and I knew, like we had always said, that as soon as we possibly could, we would go to Dana-Farber Cancer Institute. But first an actual diagnosis was needed. The next weeks included a consultation with a pulmonologist who seemed to not believe I was a nonsmoker, the bronchoscopy to remove a piece of the tumor to test, and a PET scan (whole body except head) to see where it might have spread. While waiting for results my research led to making an appointment at Brigham and Women’s thoracic department. They gave me an appointment quickly, Jan. 27, 2016.
In the meantime my diagnosis was confirmed. From Brigham I was sent that very day to Dana-Farber. There we met the first of many angels in the form of expert thoracic oncologists and their teams. Dr. Leena Ghandi. She decided to do radiation as palliative care as my breathing was impaired, my heart was racing, and I had a cough that was coughing up what I decided was pieces of me. The hope was to relieve my symptoms while testing was conducted. I was mapped, tattooed, and a cast made. (I also had a liver biopsy Feb.2 to determine that the lung cancer had traveled to my liver. It was assumed the place in my colon was also the same. A stage IV lung cancer confirmation.) The next days were crazy for us as we tried to keep me alive long enough to get me help. Nada stayed with us those first few days to take notes and help us process what was being said. Then once radiation was set, Dan and I stayed at a Hope House in Worcester, drove to Dana-Farber every morning, and then came home (to camp) weekends. In the midst of the radiation treatments (every week day for three weeks) that were not shrinking the tumor but causing the typical side effects, the test results came back.
It was just like we had won the lottery! The thoracic oncologist, Dr. Ghandi, and the radiation oncologist were beside themselves with joy. I was ROS1+, young and healthy (so said Dr. Ghandi) and there was a targeted therapy drug that had shown success in treating that cancer. I would take a pill every day, and if it worked the tumors would be reduced quite quickly. ”You mean I can take it forever?” ”Well, probably not forever. The cancer usually finds a work around. But by then there should be a next treatment.”
March 2, 2016 (after working out how to get the med) I took my first crizotinib. Up it came. With anti-nausea meds (3 at one point), it stayed down and Queen Crizotinib worked her magic. Within days I was feeling so much more human. I began to breathe more easily, and gain some of my weight and strength back. In April we moved into our newly renovated home. By summer, with steroids on board to fight the fibrosis caused by radiation, I was ready to do Camp Gramma (a modified version). That’s when we got our naughty Dottie and sweet Matilda. (Never did I think I would outlive them.)
Things settled into what people call the “new normal”. There is nothing normal about it and I don’t feel like it should be normalized. I call this our life now and the time before cancer our other life. But yes, things moved forward in a more even, routine way. Then in early March 2017 I started have odd headaches, unlike any I’d had before. At that time, because I didn’t have cancer in my brain, MRIs were at 6 months. A brain MRI was scheduled for my March day of tests and appointments. By that time I had a different oncologist, Dr. Janne, Director of Thoracic Oncology at Dana-Farber. The brain MRI showed something a tiny bit suspicious. The CT scans of my chest/abdomen were still stable. I would have another MRI in May, but call if the headaches worsened. In May it was determined that that nasty little ROS1 had driven through a red light, crossed the blood-brain barrier, and settled in the lining of my brain (meninges). While it was scary, and I regretted googling what that might mean, we were filled with hope because of the people at Dana-Farber. Yes, Dr. Ghandi had been right. Crizotinib had protected me well (and still was mostly) and carried me far enough to give researchers time to create another drug that may target ROS1. Designed to target ALK+, there was a clinical accepting ROS1+ patients. After a spinal tap determined the cancer had not yet spread further throughout my central nervous system, I began the process of being accepted to the trial. Once everything was completed (including a washout period), I began lorlatinib in July 2017. It’s side effects are unpleasant, really unpleasant. But, bearable and manageable. It began reducing the brain cancer immediately, stabilizing by late August, even with a dosage reduction due to neuropathy. I have remained on it since. I am a long timer now. And, thanks to Lady Lorlatinib pinning down little ROS1 with her sparkly red high heels, this gift of time has meant that, yes, there are new drugs in trials that show hope for controlling ROS1+. Hope. Hope for me, hope for all cancer patients. Hope that one day, not so long from now cancer will be a managed, chronic disease. Not yet a cure perhaps, but hope for life.
So there it is, the Reader’s Digest Condensed version (for those old enough to get that reference) of my cancer journey so far. My blog posts provide more details about what living well with stage IV cancer can look like. My best advice for anyone with a cancer diagnosis is FIND AN EXPERT, someone who treats patients with your cancer, preferably at a cancer treatment center/hospital. Then make sure there is biomarker testing done, even if your insurance says no to it. Those two things are the reasons I did not die in the spring of 2016. Look at all the joy I’ve had with this gift of time and believe me. It is worth the “inconvenience” and the expense to do those two things. And, try to stay hopeful. Hope and inner strength will help you to find joy in the simplest of everyday things every day as you face the challenges ahead.
When I reached 50 I stated I was middle-aged and would have the goal to live to be 100. When I was diagnosed at 58, I set much closer goals and milestones. The next family event often. Then I passed my dad’s age that he was when he died of lung cancer (no, mine is not hereditary). And then I reached medicare age. (I was not excited about figuring that out with my health.) And now? One moment, one day at a time. Make plans for the future and hope. Always have hope. My best wishes and hopes to you all is for your year will be filled with moments of joy, good health, and peace. Love to all. Finding joy in the everyday every day in our winter home on the side of the mountain.
polepole ~ breathe 