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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.

Trip trap, trip trap Over the Rainbow Bridge

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

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

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

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

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

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

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

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

Another year!

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

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

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

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

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

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

A beautiful day for a drive

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

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

Week of Scanxiety

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

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

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

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

Perseverance

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

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

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

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

Find Your Place of HOPE

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

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

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

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

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

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

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

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