Dana-Farber – polepole ~ breathe

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!

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!

Still “looks good!” (After all these years)

HOPE

Good scans and MRI, cholesterol down to high normal for the first time since beginning with Lorlatinib, and all other blood work is fine!!! That is an amazing report for a stage IV lung cancer patient. I will continue to just deal with the scarring (fibrosis) in my lung caused by radiation. I can breathe well inside, even on humid days, and I’ll enjoy the less humid days all the more when able to be outside playing and working. Other side effects, while they affect me in ways that sometimes are distressing or painful, they are manageable and unchanged. I’m in great shape for the shape I’m in, and that’s just how I hope it stays!

One of the best things about this trip (the best next to the “good scans”) was that Dan could go in with me. The last time that happened was February. Patients only, unless a first visit, had been the rule due to COVID. It just felt so much better to have him with me. Just think about the people who had to receive devastating news with no one to be there for them. A phone’s hug or hand squeeze… Happy and relieved to have Dan with me.

Thank you for your continued positive energy and prayers. I continue to be filled with hope as I find joy in the everyday every day. The world has so much work to do on so many fronts. Compassion and kindness are “free” and something we can all contribute. May you find joy in your everyday.

Stable, inside and out!

Stable scans = great news!

When cancer joined our life, we knew things were never going to be the same or what we dreamed of for our old age together. Over the past four years we’ve built a new best life for ourselves, and have settled in to enjoy our time on earth, however it looks or long it lasts. We take each bump in stride, and have been very fortunate that there’s always been a way to pick ourselves up, dust off, and move on. Trying to stay healthy and well informed about health choices and needs is on the forefront, never taken for granted.

So when Coronavirus came around, we were as ready as we could possibly be. On March 5 we had my day at Dana Farber. On March 8 we did a comprehensive grocery trip, and then settled in a little more. In fact, I’ve not been inside any dwelling except my own since March 8. Dan has visited his dad, but has been inside no stores, etc. Thanks to full freezers and pantry, family, curbside, some online shopping, and “distance” outside visits we’ve thrived. My “go to” stores are now Merrill and Hinckley, Blue Hill Co-op, and Surry General store.

But of course when cancer lives with you and you’re in a clinical trial, oncology appointments must happen even if you feel you are doing well and think you’d know if there was progression. I was allowed to skip my six week labs because I’ve been stable for so long. Not so with my day of tests at 12 weeks. In my world twelve weeks between scans is a long time. (This trial began with every 3 weeks.)

But what about coronavirus? Dana-Farber is safe. But Boston isn’t safe, I watch the news. We aren’t really going to Boston, we’re going to Dana-Farber. Dana-Farber is safe. Dana-Farber is in Boston. And so it went for the two weeks leading up to the appointment. I talked with the trial nurse, who was working from home. I learned that after my tests there would be a phone appointment, a conference call. I learned that very strict guidelines were in place, and any appointments that could be postponed or done by Telehealth were not be conducted at DF. Mine were not to be postponed. (Doing all tests locally would not be easier or as safe, we concluded.) Then, I received three calls in the two days leading up to my appointments regarding COVID-19, asking me screening questions. So. Hmm. Huh. No more excuses. Not any sensible ones. We would do it all in a day trip. Dan was confident he could drive there, wait, and drive back safely.

So yesterday we went! Got there in record time – no traffic! Even though I felt unsafe, I do believe I was as safe as could be when at Dana-Farber. Only the patient may go in (with very few exceptions). This was a first for me. Masks are a must when you leave the car. Everyone is screened upon entering ( same questions as on the phone) the Yawkey lobby and given one of their masks. “Sneeze guards” are around every reception desk. ID is looked at, not touched. Parking tickets are not validated – free parking during this time. (Usually $12.00 for day when validated at appointment.) No clipboard with questions to fill out by pen, those are asked orally or prior to by phone. Waiting room chairs are spaced 6 feet apart. Everyone in the building wears a mask. Some techs wear full PPE. I went through my day. Elevator and hallway. Dana Building L1 Check-in 1. blood work and IV in. 2. CT questions and get nasty drink. Drink over 30 min period. 3. CT scans. 4. Brain MRI prep (across hall from CT) Put clothes in locker, put on hospital top, pants, socks. 5. Brain MRI, wearing my mask! (A big first.) Even the squeeze ball has a disposable cover now. Done, get dressed. 6. Elevator and walkway from Dana to Yawkey 10. 7. Check-in for EKG. Same COVID-19 screening. 8. Vitals taken, EKG done. 9. Elevator to Yawkey 2, pharmacy. Meds are ready! (That means labs were good.) No wait. 10. Elevator to P5 and car. 11. Sanitize phone, ID(only things I took) and shoes, change shirt. Homeward bound, record time! Dr. Janne and Nurse Dawn call shortly after we reach Maine. Scans look good! Labs are good too! See you in August, call if you need anything. And so it went. Lady Lorlatinib, my targeted therapy drug, continues to keep the beast controlled (34 months so far). Our tears are of relief and joy, and maybe a little fatigue. Mostly joy, thinking of a summer of gardening.

Boston residents were following safety guidelines. Everyone walking on the street wore a mask even. It seemed much safer than stopping for gas at a convenience store in Augusta. Dan was safe, used a disinfecting wipe, sanitized, and we didn’t go near the store. But people with no masks were streaming in and out one door, in each other’s face and space, handling the door and everything in the store, and … on and on. All I can say is that we have decided it is solely our responsibility to keep ourselves safe. As much as we hope others will follow the safety guidelines, we know many are not. We can be sad, frustrated, bewildered, even angry (not worth my energy) at their behavior, but that won’t keep us safe – we will. We must. We have more life to live.

We’ve decided that every day now, during the time of coronavirus, feels like Saturday. They aren’t Sunday, but they aren’t “work” days. So they’re all Saturday! Really though, I know that Monday – Friday our CDC Director, Dr. Shah, will give us the daily update at 2:00 PM. (I know I can read it on the CDC site earlier, but I feel his presentation is important for Mainers to see.) Every day I hope to hear that no Mainer has died. I am so saddened at the thought of anyone dying such a difficult death with no family there. And sad for their families. I cannot change that. I can only help the greater situation by keeping myself safe, and asking those I know to do the same. We do not want to have people die needlessly or to overwhelm our fragile health system. Avoiding outbreaks in nursing homes has to be our collective responsibility, doesn’t it?

Please. Stay safe. Wash your hands after going out or bringing things in. Wear your mask. Don’t touch your face, even if that mask is itchy. If not for you, then do it for the grocery clerks and others you come in contact with. Thank you. If I see you wearing your mask, I’ll be smiling under mine.

This week we had new friends at camp – a Baltimore Oriole and a cardinal. Tomorrow is Saturday! Isn’t every day, except Sunday? Sunday we will plant our garden, grateful that we’re together for another summer of finding joy in the everyday every day. Here, at camp with our two spoiled dachshunds and four funny goats. May you feel as blessed as I do. Please, always have hope.

Onward we go! All stable

Last week we did our day (We left home at 6:00 AM, drove to Boston, and reached our hotel at 8:00 PM.) of tests and appointments at Dana-Farber and the news is all good! The CT scans of my chest and abdomen are unchanged, the brain MRI is unchanged, the EKG was normal, the blood work showed that my additional cholesterol lowering medication is working. High (almost out of control) cholesterol is a medication side effect. Everything else in my blood work remarkably is still always in the normal range. So has ROS1 hopped in his speedster and departed? Nope. But he is currently still out of gas, stalled. Not moving, not growing. My hero, the Lovely Lady Lorlatinib is the real beast, in all the best ways. While she may not be so kind to my body, we’ve learned to get along. And she is strong, keeping her foot on little ROS1. Doing her job.

Me? I’m still playing, taking care of my mind and body, and finding joy in the everyday EVERY day, here in our winter home with Dan, our dachshunds and goats. Filled with gratitude as we near the fourth anniversary of my Stage IV lung cancer diagnosis. Looking forward to having the children, grandchildren, and Dan’s dad all together over the holidays. Making memories.

Thank you for all the prayers you say for me and the positive thoughts you send. I am grateful. Love to all, from our side of the mountain.

“Scans look good!”

“Stay,” commanded Lady Lorlatinib. And cancer stayed. She is mighty, that Lady Lorlatinib. Once again, after a day of tests and appointments (my sixteenth with Lady Lorlatinib) with the experts at Dana-Farber Cancer Institute, we learned that this miracle med continues to hold her hand (or foot or bum perhaps) over, clamped down on perhaps, the Switch so little ROS1 cancer cannot turn on and hop back into the driver’s seat, racing crazily throughout my body. She is fearless, Lady Lorlatinib. She does her job tirelessly, never angrily, but quietly determined as she continuously moves throughout my body to keep cancer in check.

After 25 months we work well together, my team. I’m referring now to my immediate home team of Dan, Lady Lorlatinib, and me. Lady Lorlatinib’s job is ever so important. She meets her goals each day, making her rounds tracking down cancer, saying “No no, not today little ROS1. Every day is more time for the researchers working to develop and test her successor. My job of keeping my body healthy so she may do her job seems easy compared to hers. Instead of being irritated or scared by the sometimes painful sensation of Lady Lorlatinib making her rounds, I can now smile and say, “ Oh, that’s my med doing its job.” Trade-offs you know. What price can you put on saving one’s life? My side effects are definitely manageable. And Dan, he’s the one that gets affected by those side effects the most sometimes I think. Like the mood swing side effect that perhaps we won’t highlight. That’s when Dan says, “Must be the medicine working.” But through it all, I feel loved. Just because, because we love each other (or is it one another?), never taking the other for granted, always grateful for the gift of time to be together.

Living scan to scan never gets easy for us. Even when the clinical trial appointments have stretched from 3 weeks to six, then 9, and now are 12 weeks apart (with labs midway) as mine are. In reality, cancer is with us all the time. Because it actually is. There is no way of knowing when the cancer that’s a part of me now may overpower Lady Lorlatinib, mighty as she may be. Her special power is not to kill, only to control ROS1 cancer so my cells may live on happily and free. But like any caged animal, little ROS1 seeks to be free. And little ROS1, he’s a fast driver once he hops in the seat. The times he has been let loose have been most unpleasant. So yes, I too must stay vigilant.

Our trip to Boston Thursday was uneventful – that’s a good thing! Something we do not take for granted. My appointments began with a blood draw (2 small tubes for my labs and 2 big tubes for the study) and IV put in at Dana-Farber at 8:00 AM. Then it was over to Brigham and Women’s for CTscans and brain MRI. Strange thing – at DFCI I only have one bottle of nasty drink before scans, but at Brigham I have two. Hmm… After the MRI and IV out, it was back to Dana-Farber for a quick lunch before heading to floor 10. There I had vitals done (weight, blood pressure, temperature, oxygen saturation), an EKG, and my appointment with the oncologist and clinical trial nurse. We love them both. They are caring and competent, two of the best in their professions. “Scans look good.” And on we go from there. The final part of our day at DFCI is to wait for my 12 weeks of my medication. My prescription cannot be ordered until the scans and MRI are seen, so there is always a bit of a wait. My backpack filled, we leave the parking garage at 2:30 PM, headed NORTH. Weary from the physical and emotional work of the day, but relieved and ever so grateful.

Thanks to my sister who took care of the dachshunds and goats this trip, I even got to see my morning sunrise with a little dachshund (depositing some doodoo) in the photo. (I’ll share a different one.) It’s the only time I’ve left them overnight since my last Dana-Farber appointment, so we’re all getting quite used to Mama being home 24/7. Spoiled we are, in the best of ways!

Thank you for your prayers and positive thoughts for this journey. We are grateful for the time we’ve been given and the time we have ahead of us. And now it is time to pick the tomatoes. There’s salsa to be made! Finding joy in the everyday every day.

This wonderful t-shirt was designed by one of our grandsons. The front has two hearts, one with my name and one with my mom’s. He is our heart hero and understands what it is like to undergo tests, procedures, surgeries, and to work with experts in Boston (next door to my experts). Beulah’s Babies is the name of our large family team that participated annually in the Komen race (raising funds for breast cancer research) in memory of my mom. polepolebreathe.blog – well, you’re here. And I just love the lungs for me with the pink ribbon for Mama. Very thoughtful. Thank you to him. fullsizeoutput_1626

Health Update, April 6, 2019

Still LIVING with stage IV lung cancer! After another full day of driving five hours (I rode with my chauffeur Dan, joined by our daughter this trip!), IV in, blood draw, CT scans, brain MRI, EKG, and Dr. appointment, the tests results look great! No progression seen in my lungs, liver, or meninges! Twenty-one months in this clinical trial on the targeted therapy drug lorlatinib. Wow. Grateful beyond words. I will share more on the ins and outs, ups and downs of living with cancer, taking a heavy duty medication that IS reaching my brain and messing up other parts of my system, and what our trip was like (nice!) later, perhaps next week when I get the reports. But first, this:

Be on the lookout this summer for these two, having fun while showing support and spreading awareness for the lung cancer community.

LUNG CANCER MATTERS! 1 in 16 of us will get lung cancer. Research is key to saving lives, if not in prevention, then in early detection and treatment.

SPREADING AWARENESS MATTERS! More and more young people, people with healthy lifestyles, are being diagnosed with LUNG cancer.

LUNG CANCER takes more lives than the other prominent cancers combined. Know the symptoms. Don’t ignore that little cough-cough, weight loss, chronic headache, fatigue. If you think something is wrong, be persistent in finding answers. Your family needs you.

FAMILY MATTERS! I’m grateful for mine.

Always, always have hope.

Hopeful Health Update!

“Everything looks good!” said the “new to me” oncologist. “You’ve been doing well for a LONG time.” Okay friend, knock on wood, find a four leaf clover, and thank God when you make a statement like that. It IS the truth. I HAVE been doing very well on Lorlatinib. In metastatic cancer world, it HAS been a long time. 546 days on Loralatinib on that appointment day. I am grateful to the doctors, nurses, researchers, and all who send positive energy and prayers. Hope, I always have hope.

My appointment was great! This doctor was very interested in my health and in the work of the ROS1ders. He raved about how impressed he is with the ROS1ders advocacy work. And, it is always nice to see Dawn, the clinical trial nurse.

It was a different trip though because Dan couldn’t go. He recently had a total hip replacement and no long rides for him just now. My sister drove me, while the “children” helped Dan with chores, etc. My sister began this Dana-Farber relationship with us nearly three years ago, traveling with us as a note-taker and support when we first started our cancer journey. I’m glad she was able to hear, “Everything looks good!” Even my labs were all good.

So. Well, my 3 year “cancerversary” just passed. While I seldom really stop thinking about how fragile this string I’m hanging onto is, I think we’ve made a very wonderful new life for ourselves. And, this winter for the very first time ever, we are both at home every day. And yes, it IS a good thing we love each other. We are loving being together. I’ve been busy caring for the goats and dogs, filling the wood stove, and keeping the ice and snow off the doorstep.

A new hobby is is also keeping me busy and happy. I’ve spent my adult life simply knowing I couldn’t draw, paint, etc. While I see myself as creative minded, I don’t see myself as an artist for sure. Well, to my surprise – like most things – if you put your mind to it and practice, even I can learn to draw, paint, make fun art with mixed media, and Zentangle. Yes, it’s true. I’m having great fun – not just crafting, but learning to draw, learning to use watercolors, learning lots of mixed media techniques. And, I’m no longer afraid to pick up a pen and use it for something other than writing. Who knew this would be so much fun. I don’t even mind sharing it, no matter what it looks like. I’m having fun and learning, while playing and practicing. Seems crazy, but it’s true.

One more fun thing has happened. Years ago, as part of a senior thesis project at Goddard College, I wrote a children’s story. At the time Dan really wanted me to see if I could get it published, but the one place I sent it to rejected it. I tucked it away for the someday grandkids. Well, welcome to the world of self-publishing! I’ve worked with a publishing company and illustrator, and will soon be the published author of a children’s book. (Further details when it actually comes out!) I wasn’t sure I’d live to see it done. Seriously. In May, it was to take 3 months, and here we are in January. Long time for someone living with metastatic lung cancer. Looking hopeful though. Good thing. It’s on my life list to get done. (You can smile now. I am.)

Finally, if all goes well I won’t need to go to Boston until early April. Twelve weeks! You can find me here in our winter home on the mountainside, finding joy in the everyday every day. (It’s easy to do!) Feeling grateful, joyful, peaceful, and as always – hopeful.

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