living every day – Page 4 – polepole ~ breathe

Riches Aplenty

The other day I wrote to someone that I wished I was rich so I could make a purchase. Silly me! I am ever so rich in so many ways. What I meant and should have said was if I could afford to I would make that purchase. This item isn’t something I want for myself, but rather something I’d like to preserve for my grandchildren. If I was actually wealthy, I’d want to help people in need. I have all I need and so much more. I do wish everyone had all they need. So many don’t.

One of the greatest riches in my life is the support and love I receive. In good times and hard times I know there will be an abundance of love, and physical and emotional support, from my closest family and friends, when needed, as needed. This has been so throughout my entire life. I hope they always feel my love, support, and gratitude. I do wish every being could have such a life experience.

I think wishful thinking has its place, but actions are really what make a difference. I’ve spent much of my life playing and working with children, beginning when I was a child babysitting for younger children. My resume includes being a mom, a nursery school helper, Sunday School teacher, Brownie Scout leader, a child daycare owner, an elementary school teacher of every grade level at some time (PreK-8) and several content areas (math, reading, writing, social studies, science), an elementary school teaching principal, a school volunteer, and a Gramma. Over that time I know that I’ve positively impacted children’s lives. I know they certainly have enriched my life. Just yesterday I had two teens and a preteen spend the day with Gramma. We played board games, cut branches to haul to the goats, and had a spontaneous hairstyling session – all four of us! Another of my greatest riches, playing with children.

I’ve been married seventy-one percent of my life. I went from my parents’ home to the home Dan built for us, the home we live in now (when we aren’t at our Salt Pond camp). During that time we raised two children, numerous pet children (dogs, cats, guinea pigs, gerbils, horse, goats, iguana, fish, hermit crab), and all the while worked (occupation type work that is) to make our life together what we want it to be. Our marriage has not been work. Dr. Phil once said what hard work good marriages were, that marriage doesn’t succeed without hard work. I disagree. I think good marriages, happy marriages simply require attention and time. Time together mixed with love, humor, and a sense of fun and adventure. That doesn’t sound like hard work to me. I believe anyone who experiences a wonderful, lasting marriage has experienced what has to be one of the greatest riches of their life. I know I have. I can’t imagine how anything here on earth could be greater.

Enough musings for today. I just needed to correct or clarify for myself that “wish” comment. I know I don’t have to wish for anything. I have all I need. Finding joy in the everyday every day, that’s me. Everyday things like watching the sun rise.

On to Cycle 35!

My warrior drug, the fair Lady Lorlatinib Lobrena, has proven to be strong. (Yes, she has a new surname. She has been FDA approved to treat ALK+ NSCLC -not ROS1 yet- and that is how she is now introduced.) After two years she is still able to stay attentive, travel to the far reaches of my body, and sit on ROS1’s brake whenever or wherever he tries to take off in his shiny speedster. We are filled with gratitude.

I waited to see the official report on my patient portal before writing this. The report always shows up one week after my daylong appointment. But at Dana-Farber Cancer Institute we do not need to wait and worry for a week to hear the news. Here’s how Thursday, June 27 went –

We left home at 4:45 AM for the drive to Boston, arriving in time for Dan to have lunch before my first appointment. And then the fun begins:

1. Blood draw on Yawkey, floor two (two tubes for today, two bigger tubes for trial study) and IV in (for scans and MRI). When the nurse flushes out the IV, I get that taste in my mouth. I ask her how it get there so quickly, but she doesn’t really know and marvels at it with me.

2. Over and down to Dana, floor L1 to drink the nasty drink that no longer tastes so nasty – maybe because my taste buds are messed up or maybe I’m used to it now. (I take mine in water, no Crystal light lemonade for me.)

3. Dana L1 for chest CT scan and abdomen CT scan. Yup, still get that taste in my mouth and warm flush that makes you think you’re peeing. I ask the tech how that goes from your arm to everywhere else so quickly. He says he doesn’t really understand it either.

4. Across the hall for brain MRI (45 minutes wearing the hockey mask, in the tube with loud noises surrounding my head) I forget, when the technician flushes my IV, to ask about that taste arriving to my mouth so quickly. I’m sure this lady would have had an answer, but she was all business and I didn’t want to interrupt her work. I’ll have to “google” it! IV out when MRI is finished.

5. Back to Yawkey, Floor 10 for EKG. Good thing I remembered to shave my legs this time. Those sticky things come off easier with no hair. (Also good thing I’ve got no chest hair!)

6. Vitals taken (Yawkey 10). No thanks, I don’t need a kilogram to pound conversion. 97% on the O2 – Yes! Way to go little lungs! Radiation fibrosis, partially collapsed lung – you are nothing in this strong body. Must be all that hill walking to do the goat chores.

7. Appointment with clinical trial nurse and doctor. (Yawkey 10) This is where we got the great news that Loralatinib is keeping everything stable. Even though we’ve only been there five hours, and did all of the above, they had the results. My blood work report had even gone to my patient portal already. With the oncologist, fellow, and nurse, we talk about the test results and the medication side effects. Even though it is the end of their work day, they take the time to ask many questions, listen thoughtfully to my responses, and try to problem-solve any issues (ongoing or new).

8. Down to Yawkey 2 to pick up prescription.

9. Dan drives us to Seabrook, NH for the night. It is more than $100. cheaper than staying in the city, and in the summer we can do this whole trip in the daylight.

And so it goes. Until it doesn’t. I am very aware of this gift of time we’ve been given. Many with metastatic cancer do not have a specific gene fusion or mutation that researchers have found and developed a drug to target. Even when there is a TKI like I am on, the cancer often finds a workaround very quickly. The toll that the cancer and the medication take on my body is ever-present. We are always in the cancer world where words like “good” and “stable” take on a much greater meaning. But that is just how it is, and we move forward. Grateful for what we do have, what we can do. And filled with hope. Always have hope. There is always much to be hopeful about and for.

The following morning, the day we drove home in a celebratory mood, was a day much like June 28 sixteen years ago when our son and daughter-in-law were married. A beautiful sunny day, filled with hope for a wonderful future. So too was it much like a day forty-four years ago. The day Dan and I officially began our life together.

And now here I am, filled with gratitude and hope – finding joy in the everyday every day with Dan, our family, our two little dachshunds, and of course our goats.

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.)

What’s the name of that song?

I think it’s Live Like You Were Dying. I don’t care as much for that song as I used to. I mean, I get it, but it just isn’t the way it really is. Not really, for me anyway. The song I relate to much more is Never Take a Breath for Granted. Here’s why. When you get the news (as the song goes) that you have a terminal illness, that you are going to die sooner rather than later, it is very likely you’re too ill to waste time riding a mechanical bull. You need to get yourself to the nearest expert right away. There you might discover great hope, a plan for high quality of life (so you can decide if it is time to go skydiving today or if you might enjoy it more further down the road) , a roadmap to living well for as long as you can. In my way of thinking if you never take a breath for granted, you are present, truly present all the time. Not in a frenzy to see how many of the crazy things you’ve thought of doing you can do before you kick the bucket. But living in joy every day, thoughtfully revising and adjusting your life list to match the journey you find yourself on.

In my quest for keeping my body healthy so that my targeted therapy drug Lorlatinib can do its job beating down the notorious ROS1, driver of my cancer (Yes, I own it.), I’ve discovered essential oils and a wonderful health coach. bridgesforhealth.com It’s too early for me to say that this is helping my neuropathy, immune system, and numerous other things that need help in this journey, but it sure does feel good, and right. I’ll keep you updated.

Lorlatinib, as I’ve said before, causes cholesterol problems and weight gain. A few people in my ROS1 Facebook group have managed to keep cholesterol numbers healthy by eating a diet very high in Omega 3. Worth a try, I love sardines! We’ll see on this too. And, maybe the essential oils will help so much with the neuropathy that I can get on some hiking boots. Now that would be pure joy. (Even if I don’t lose an ounce!)

And, I must share that I am STILL playing. Have you ever seen such beautiful cereal box cardboard? yChzP9vaRG27xKYCm%YUDw.jpg

Or such a cute little felted gnome?

Didn’t think so!

Softball and baseball season is upon us. We have four grandchildren playing one or the other. Readying camp for our move, snowdrops are blossomed. Preparing to travel to see our now RN, BSN granddaughter be pinned and graduate. Finding joy in the everyday every day. Be present. Never take a breath for granted.

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.

Finding joy every day.

Feeding the birds, dogs, goats, and wood stove is nearly a full-time job here in the winter. I love every minute of it all. Here’s today’s evidence that I am indeed finding joy in the everyday every day!

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!

Keep Reading Please!

Yes, I’m doing well. Yes, I know I’ve been blasting you with Lung cancer Awareness information. It’s because I LOVE YOU. It’s just one month. Stay with me here. I’ve something personal to share that you’ve not seen. Maybe it will impact your mind with visions of the power of hope, faith, and medical research. It did mine when I recently read it. It’s my CT scan report from February 25, 2016, the one that accompanies that image of my lungs that I’ve posted.

I didn’t realize it, but I was rapidly declining, dying, in late January 2016. When I got my diagnosis and we made our way to Dana-Farber, it was a whirlwind of activity to make sure that the cancer in other parts of my body was lung cancer metastasized, and to begin radiation as palliative care in the hope that it would give me some breathing relief. In the midst of all this, Dan and my sister were staying up with the medical stuff, the “kids” were taking care of things at home, and I was simply working to breathe, heart racing, one breath at a time. I think I was unaware about my actual state. How scared Dan must have been, knowing and being alone with me as I worked to breathe, heart racing, one breath at a time.

If you’ve been reading my recent updates, you know things are good. The tumor in my left lung hilum has been shrunk too small to see, my liver, colon, and brain are stable. Now read that February 25, 2016 CT scan report and be WOWed like I just was.

February 25, 2016 FINDINGS:

CHEST:

There is new complete collapse of the left lung. The primary tumor cannot be distinguished from the surrounding collapsed lung parenchyma.

The mass displaces the left main pulmonary artery and left pulmonary veins with significant decrease in caliber of the left pulmonary artery.

There is new large left pleural effusion.

There is a discrete enlarged, enhancing 2.0 x 1.7 cm lymph node posterior to the main pulmonary artery (2:29). There is also 14 x 8 mm subcarinal node. These nodes were previously difficult to distinguish on the noncontrast images from the prior PET/CT.

ABDOMEN:

Significant increase in the right hepatic mass measuring 4.5 x 3.9 cm, previously 1.9 x 1.7 cm (3:26). There is increased enhancement in the surrounding liver parenchyma on the arterial phase images. There are 2 other sub-5 mm hypodense lesions in the segment 6 that are too small to characterize.

PELVIS: There has been interval increase in the serosal deposit at the rectosigmoid junction in the pelvis measuring 26 x 23 mm(3:69), previously 18 x 15 mm (3:69).

Okay, that’s it. Were you WOWed reading that, knowing that I’m still here and functioning well three years after that? I was pretty darned impressed with what medical research has made possible. A targeted therapy cancer drug stopped the spread of the ROS1 cancer. When it crept by crizotinib (under the cover of darkness I think!), and found my brain meninges, a second target therapy drug, not even approved yet, was available to me and stopped the spread again. Hope, faith, and medical research. Wow. Research funding is needed.

I’ve been fortunate to be in the right place at the right time while on this cancer journey. I started treatment in one of the premier cancer treatment centers in the world. There, I can participate in clinical trials that are only available in a few places in the country, and unfortunately not accessible to many. Also, luckily (or thanks to hope, faith, prayers) I’ve met the criteria to enter the clinical trial. Being healthy in all other ways helps in this.

Four things I hope you’ll take from this post:

Take care of your body, listen to it, and advocate for it.
If you have a cancer diagnosis, find the best treatment available to you.
Always have hope.
RESEARCH FUNDING IS NEEDED. You can help by advocating, spreading awareness, or donating. Over 400 Americans are dying every day. Help, please.

If you want to donate to the patient-driven research being conducted on ROS1cancer, here’s my donation page: ROS1 research donation .

That’s my story and I’m sticking to it. Thanks for reading. Always have hope. Today I’m spending the day with one of the grandchildren. How lucky am I? I say, VERY! Here, finding joy in the everyday every day.

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.

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