treatment – polepole ~ breathe

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.

Nine years +!

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.

A Colorful Day

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.

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.

Cancerversary Week: Still doing well, All Things Considered

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.

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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