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Free ME from Lung Cancer 5k

Today was a perfect day. It’s easy to find perfect days when you look for them. Today it was just there. Team polepolebreathe.blog participated in the annual (our third) 5K benefiting Free ME from Lung Cancer. The weather was beautiful, perfect I think for running, and not cold for those of us cheering on the runners. There’s a not too serious rivalry between mother and son that’s always entertaining. My grandson barely beat his mom, but she placed higher in her age group than he. A tie, I’d say. As you’ll see in my selfie, I stood tall through it all, feeling blessed to have the team there in my honor. I’ve been deciding upon a new important goal to strive for – the next thing I want to achieve on this journey. Staying alive is a good one, but that goes without saying. My goal? Next year I hope to participate in the 5K. If I slow-walked up a small mountain, I can finish a 5K. And, I know team polepolebreathe.blog will be walking beside me or at the finish line tapping their toes waiting for my arrival. (They are runners after all!) Join us – I expect it will be a perfect day!

Extraordinary!

Tonight my feet hurt and I don’t mind. Even though I searched all year for the best hiking boots for neuropathic feet, I expected my feet would hurt some. It was worth it. My tolerance for what cancer and my meds are doing to my body has certainly changed over the 3.5 years in this journey. Especially with the neuropathy, fatigue, and “huffing and puffing”. Funny what you can get used to. So too has my overall outlook toward expectations of myself. I’m much more accepting of this change in abilities now, even as I continue to challenge myself to stay strong and healthy, body and mind.

In 2012 when we climbed Mt. Kilimanjaro, we did so because of a documentary in which they said that climbing the tallest freestanding mountain in the world is an extraordinary thing that ordinary people can do. It is, we are and we did! I’ve never forgotten that concept.

Today I felt like an extraordinary person doing an ordinary (for most people) thing. The cancer in my body is found in only 1-2% of lung cancer patients. Remarkable (definition of extraordinary). I have lived extraordinarily happily for 2.5 years since ROS1 entered my brain meninges. Remarkable, given the (now ancient, but considered current) statistics on leptomeningeal carcinomatosis. This morning I took this extraordinary body of mine on a walk through the field and forest to the top of a mountain. Not up “our” side of the mountain. But up the “other” side of the mountain, the one with views of ocean, ponds, and the village. Blue Hill Mountain. Remarkable!

Much thanks to my daughter Mandy for doing this slow walk with me. It was a beautiful day in every way. Extraordinary! See for yourself, and thanks for reading and caring.

Time for a new goal

Four years ago this spring Dan and I, with my sister and her husband, went on a backcountry backpacking trip into the Grand Canyon. We each carried about thirty pounds on our backs, hiking from the South Rim into the canyon for a few nights of camping, and hiking back up with slightly lighter packs. Also four years ago this spring, our granddaughter graduated from high school, ready for college and to become the nurse she’d always wanted to be.

And then(after the distraction of a house fire) came… “Oh shoot. Metastatic lung cancer? Well this is not good. But I have things I need to be here for. What’s the plan to keep me here?” This was my thinking, pretty much, upon hearing my diagnosis. Even though I knew things looked grim, I needed to focus on life.

And I’ve been lucky. Lucky to have expert care. Lucky to have a cell fusion ROS1 that researchers have developed targeted therapies to keep “contained” (my term). Lucky that another drug was available when the cancer found my brain.

But my being here, living, is so much more than just luck. My outlook on life, my self care, self advocacy, the strength I draw from the love of others, believing in something bigger than myself, the joy I feel in experiencing every small part of each day, all keep me here too. And goals – things I need to do. Important things I so want to be here for. Today I reached one of those goals. In fact, it is the only tangible, stated goal in those first months with a date that I hoped to be here for. A date that seemed so far into the future for someone with a terminal illness. Today that granddaughter who so wanted to be a nurse graduated and I was there. Fancy that. I was there. Wearing a bracelet that my dad gave to my mom – I try to wear it to important family events.

And now? Well, of course I’ve so many reasons I need to live. I’ve even got a few mountains I want to climb. I understand a lot more about this cancer journey I’m on than I did so long ago. And I know I’ve more to learn. I don’t, though, feel a need to set a new goal with a date that I must reach. If I can live well surrounded by love for however long I’m here, I’m quite satisfied. I will live and play and love with those who love me, finding joy in everyday things every day. And when I turn 99 I shall dye my hair purple. (If I have hair.)

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.

Still playing!

I’m quite certain it is impossible for me to describe how very lucky, fortunate, blessed (choose your adjective) I feel to be here on earth. This winter, despite (or because of) “everything”, has been one of the most wonderful, wonder-filled times of my life.

“Why?” you might ask. “Have you traveled to exotic places?” No, I did that in my other life. “Maybe you swam with the dolphins?” Nope, other life too. “I know, you rescued a dachshund to add to your family.” Other life and they’re still living the good life, one now elderly with her heart condition that requires three medications, twice daily as she reminds me. “Well, did you get to watch the birth of a grandchild?” Other life and one is now 22! And me, still just a kid myself!

This winter for the first time in either life, Dan and I have both been home together most of the time every day, the exceptions being his coaching and my one (just one all winter!) trip to Boston for my clinical trial appointment. This winter I’ve been able to get a glimpse of what our retirement might have looked like if our other life had played out as “planned”. While neither of us have been physically able (Dan due to surgery, me -due to the beast) to climb mountains together or even to snowshoe up “our” side of the mountain, we’ve had a wonderful time, simply being. Being together.

I’ve had times when I’ve struggled about the toll the side effects have on my physical self. Treatment, both radiation and powerful targeted therapy drugs, have had immediate and long term effects that for me are just plain hard, yet tolerable. Some do not get the chance to be given a new life as I have. I am grateful. I embrace this drug in my brain. I hope someday lung cancer patients will be able to have treatments that both work and have fewer, less harsh side effects. But for now I understand that treatment is why I have this wonderful new life. I choose life. I cherish this new life. And I continue to work with the treatment to keep my physical self as healthy and strong as I can.

I love this pace of no hurries, no worries we’ve grown into this winter. It allows me to observe the world around me, truly and thoroughly. Whether it is the birds and squirrels at the feeders, the deer passing through the backyard, the little ermine that hides (lives?) in the brush pile, the goats and dachshunds that provide endless hours of entertainment, the grandchildren, hearing my father-in-law’s stories, the basketball stories and passion of Dan the coach, the discovery of playing with mixed media art, reading or listening to books (The Moth Snowstorm and Becoming, field guides, and more) the forsythia brought in for a spring preview, or the subtle changes of the landscape, it all fills me with wonder. Wonderful. Wonder-filled. Fulfilled. Full. A full life, well-lived. Simple, slow-paced, yet busy enough. One day at a time, waking each morning knowing I’ll find joy in our everyday activities, surrounded by everything and everyone we love.

Still playing, just differently. Here’s a glimpse:

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.

Another year

Another year gone by. That’s how many people say it I think. Another year. Me? ANOTHER YEAR!!! YES! We did it! I’m really here to see ANOTHER YEAR begin!!! Here I am, LIVING with metastatic (here, there, everywhere) lung cancer. Since that awful diagnosis I’ve celebrated not one, not two, but three, yes THREE New Years. How amazing is that?! Well, I can tell you. Very. Very amazing.

New Year’s Eve 2012, Moshi, Tanzania, Africa. New Year’s Eve 2012, Amsterdam, Netherlands, Europe. New Year’s Eve 2012, Massachusetts, United States, North America. That was an amazing New Year’s Eve for sure. Got on a plane in Africa on New Year’s Eve, landed in Europe for another flight still New Year’s Eve, and finally made it to Boston, MA in the United States on New Year’s Eve. Three continents. Not likely to have another New Year’s Eve like that one. If our flight had not been cancelled the day before we wouldn’t have had that one. Lucky I guess. Not that we felt that way at the time. But it is kinda cool to say we celebrated New Year’s Eve in/on three continents.

Lucky we were in 2012 and lucky we are today. Blessed. Fortunate. Grateful. Joyful. Loved. Content. Hopeful. Those are some of my words I carry with me from 2018 into 2019. They may sound “soft”, yet they come from, and give to me, strength, courage, and peace. I am excited to see what things our family will celebrate in 2019. Graduations, family gatherings and outings. Every day a gift. I know Dan and I have much to look forward to, beginning with our winter on the mountainside, cozy in our home with the three little dachshunds, and the goats nearby in their little barn.

May 2019 be a year of joy and health for you.

Another year!

Stay Focused on HOPE

“It is what it is. Life is what you make it. When life give you lemons…” You get the idea. Don’t offer me any more of them right now. Please. And, thank you.

Today I had a meltdown, a rather big one. I share this because sometimes I think I make this living with lung cancer stuff seem much easier than it is. And that’s not fair to all those living with lung cancer or their caregivers. I have so many things that are going right on this journey and so many blessings every day. The reality is that many are really suffering and over 400 Americans die of lung cancer every. single. day.

It began quietly, building throughout the day. Dan and I were both aware it was happening. He tried to steer it in a more positive direction. I could do nothing but let it go. Every little thing throughout the day reminded me of what I cannot do because of lung cancer. (Not my usual self.) By the time I realized that my somewhat crazed state was likely my medication doing it’s job in my brain, I was in tears. Sobbing, I said over and over, aloud and in my head, “I don’t want this lung cancer anymore. I don’t want this lung cancer medicine anymore.” Well there. Okay then. Now that’s wishful thinking. Because really? Really, for me there is no choice. I can’t just wish this cancer away. Anymore than there’s a choice about aging. What’s the alternative? Death. That thought knocked some sense into me. I’m not ready to give up on life yet. I’m still a healthy, young woman, just with lung cancer – my first brilliant oncologist Dr. Gandhi told me so! I wiped my tears, apologized to Dan, who held me through it all (as he always does), and moved on with my day.

Tonight I’m back to normal, my normal. Living well with lung cancer. And I know my medicine, the fair Lady Lorlatinib, is reaching and working in my brain. I don’t mind that my fingers and hands feel prickly as I touch the keys. Neuropathy, it’s a brain thing. It’s like I told my oncologist about my odd headaches, vision flashes, and messy speech – it means the medicine is working in my brain. Lady Lorlatinib is working very hard to contain and control that nasty little ROS1 riding around in his sports car throughout my body. I am grateful for this powerful drug and the research teams that identified ROS1 and treatments to slow down that speedster. Tonight, why, I even laughed when I put my cup into the cupboard to warm instead of the microwave. Huh, no buttons to push. Oops! (And no, everyone doesn’t always do that – I never did…)

My purpose in sharing this post is why I share my journey at all – to help people understand the metastatic cancer journey. To inform people who are well, so they may reach out to others with compassion. To inform others with cancer about the importance of finding excellent treatment, keeping your body healthy, and living with peace and hope. For me today was just a blip on the screen. Kind of like those teenage PMS days. The real me – I am at peace with my life, filled with hope, and surrounded by love. I pray for that same state of being for all who travel this road.

This is Lung cancer Awareness Month. Beware! And BE AWARE. If you have lungs, you are at risk for lung cancer. Early detection can mean possibly being cured, saving a life. Detection and genomic testing can mean a targeted treatment, saving a life. Research funding is needed so that the heroes can do their work, finding treatments, causes and preventions, and cures.

Me. Finding joy in the everyday every day, in the barn with the goats, snuggled on the couch with the three little dachshunds, just being here with Dan, in our home on the side of the mountain. Thanks for listening. Your prayers and thoughts of strength and positive energy for all who have lung cancer are needed and appreciated. Love to all.

Feeling Grateful for the Opportunity

Feeling grateful, again, still, always. Yesterday was a purely nice day. It was the day of the annual Save Your Breath 5K to benefit the work of (Free ME from Lung cancer) , an organization that more Mainers need to learn about.

On the first Sunday in November, runners gather at the Y in Augusta at 7:00 AM (only it feels like 8:00 due to time change). Many there are running because they love running this late season race, many others because they love someone with lung cancer, have lost someone to lung cancer, or have lung cancer themselves, and some run for both the love of running and the cause. This latter describes my grandchildren and their mom, my daughter by marriage and heart. They love to run and they got up at 5:00 a.m. to travel to the race in my honor, to support Free ME from Lung cancer. And running with my grandchildren was their great-aunt, my sister. On the sidelines with me were Dan, my son and my brother-in-law. It was so wonderful to watch Team polepolebreathe.org in their tie-dye T-shirts (over or under their warmer gear) running or watching on this crisp, clear November day, supporting the lung cancer community. Just perfect.

After the race we went to breakfast at Mulholland’s Augusta House of Pancakes. It’s a great restaurant, we love that you can walk in with a large group (last year I think we had nine) and they will happily accommodate you. A couple of interesting things happened there. First, a governor candidate stopped by our table, noticing the “matching” Ts and asked my granddaughter what we were up to. Ten year old C. did an impressive job of explaining. The candidate seemed to have no awareness of the event, despite the promoting Free ME from Lung cancer does in that region of the state (and has for the six years of the race.) If that candidate wins, they will get a letter from me while we are still “fresh” in their mind.

And then came an opportunity, for the children and for the grown-ups as well, to understand better why we participate, why I post. It happened as we were leaving. Our waitress must have asked my son (walking out just in front of me) if we had a family member with lung cancer. He replied his mom. With eyes filled with tears, she shared that she’d just lost her mom. He quickly said, “My mom’s right here.” By then, while I hadn’t heard the words she’d said, I knew she’d been deeply hurt by this cancer monster that took my dad and has so changed my life. I stepped up, and she asked if it was me who had lung cancer. Nodding, I said, “You look like you need a hug,” and reached out to her. Here, in the middle of the restaurant, two strangers sharing this bond, her grief, my hope, our compassion. In that hug I could feel the love for her mother. She asked about my health, so grateful that I’m doing well. And even though she doesn’t know my name I know I’m on her prayer list, and she on mine. An opportunity to understand.

The cancer journey – when you’re stage IV I think “journey” describes a healthy, forward-looking approach – is filled with wonderful opportunities. Sometimes you need to seek them out and sometimes they find you. Be open to them.

Lung cancer awareness can save lives. Test your home for radon. Know the symptoms. Don’t ignore that persistent cough-cough.

Finding joy in the everyday every day.

Health Update July 3

Health Update July 3, 2018. “Scans look good! Blood work is all the same. How are you feeling? What have you been up to?” This is how the oncologist (one of my heroes in this journey) comes into the the room. “Phew! I feel great now,” I think. Moments before Scanxiety had taken a stronghold over my usually calm mind. It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time. Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis. (NO. I never smoked. Silly you, silly me. I HAVE LUNGS!) Okay, enough on that. Radiation to lung as palliative care. Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable! March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go. But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib. July 2017 – entered Lorlatinib trial. Lucky to be able to do that at my treatment center. (That’s why we travel to Boston for treatment, they’ve kept me alive.) Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks. Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib. My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms. Next up was the brain MRI. The techs complimented me on how well I did. “Practice, lots of practice!” I replied. When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!” Then I got my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently. After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment. Here’s why the Scanxiety set in at that moment. After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr. This weirded me out big time – not my routine, not his room, what’s up?! Nothing, it turns out. Sorry that I scared us both. Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday. They truly forgot my EKG, maybe in their excitement to go home for the holiday. Did it after the appointment, and it was fine too. All good, see you in September! Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer. I know I’m lucky to be alive. That being said – it’s not like someone chooses to have metastatic cancer. I can now though help others by sharing – thus bringing purpose to this experience. So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons. You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through. No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes. One is great news I think for my fellow ROS1ders. The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48. More lives saved! And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition. But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on. It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be. Keep in mind that before cancer I took no daily medication, and have no other health issues. Here are the risks on the lorlatinib list that I experience: increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!; mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!; swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try). There are others that I don’t experience. My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can. No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year) are doing. Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life. That’s it for now – I think my mood’s about to change! And laughter, always have laughter in your life. Maybe some children, kids, and dachshunds too! Thank you for your thoughts, prayers, and love. Love to all. Enjoying the everyday, every day here, there, and everywhere – that’s me.

Camp 2018

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