treatment – 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.

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!

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.

ROS1der Research

Dear Friends and Family,
The ROS1ders set a research fundraising goal for this month in honor of Lung Cancer Awareness month. I hope you can help us reach it. $10.00 is what I’m asking you to contribute. Four years ago my cough-cough led to a Stage IV lung cancer diagnosis (Jan. 2016). You know my story. Since then I’ve been on two targeted therapy drugs for ROS1 cancer. Neither FDA approved when I started them. Currently I am in a clinical trial. With each new drug the research scientists are learning more and more about the response to and of the ROS1 fusion. The ROS1ders are donating tumor tissue and more to this research. For me, there is possibly one more drug in trial when ROS1 finds a work-around to my current drug. For others there isn’t yet another drug.

For you scientists in my “family”, here’s some information on the research. ROS1 PDX Study

Here’s what I’m asking of you – $10.00 If every one of my blog readers and facebook friends and family gave $10. to this research I’d have made a great contribution. I ask this as much for the young moms and dads in our ROS1der group as for myself. Sure, I’d love to stay around to watch the grandkids grow and to get to grow old with Dan is a dream I once took for granted. But there are young people in our group who need to live long enough to see this cancer treated as a managed chronic illness so they can just experience life.

So, $10.00. Please. Thank you. Thank you for this and all your love, support, well wishes and prayers. Thank you for reading this and every post. Here’s the link to my fundraising page. Corinne’s ROS1 page

My cancer journey so far (written for ROS1der Feature Friday)

On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro. April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs. By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015. Guess again. I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well. The FNP saved my life by doing an x-ray. How simple was that.

After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston. They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon). Testing for a gene alteration was done despite initial insurance denial. Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel. Dana-Farber is a place of hope, caring, and expertise. While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group. I am so very grateful for this forum.

I began taking crizotinib March 2, 2016. After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well. Within a week I was breathing easily. While never NED, everything was greatly reduced and remained stable. By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.

In March 2017 I began having odd headaches. A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.) Again DFCI offered hope. I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier. I stayed on crizotinib until one week before beginning lorlatinib in July 2017. I gave up teaching to make keeping my body strong and healthy my priority. Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable. My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks. Twenty-nine months so far!

My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s college graduation. I recently hiked (slow-walked) a small mountain. I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed. I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K. I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others. My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time. Always, always have hope. 59233457353__C7F9845D-C46E-45CE-9B6B-667E849E2D3A

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.

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.

Health Update Sept. 6, 2018

Nothing but smiles! You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver. Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial). “Everything looks good. Your brain MRI looks great!” Wow, what more can we hope for in a visit. Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer. Yes, it is still hiding out in my lung, my liver, my colon, my brain. We coexist in one body. We will for life. But, oh what a great life it is! Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer. Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well. I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition. Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future. Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement. Time for me to pick some peppers and tomatoes, maybe make a little salsa. For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).

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

When IS the cure worse than the illness?

It’s a real question to consider – when IS the cure worse than the illness? Medically or scientifically, it is all about the net result. If the net result from the treatment is worse than the illness (or potentially so), then the cure is worse than the illness. But how do you measure things like quality of life or the long term (years into the future) effects of treatment when you’re just trying to breathe or when you have goals that require staying on earth until the time specific goal is achieved? Most of us would take our chances I bet.

Over the past month three people I know through life, not because cancer, have died either from lung cancer or perhaps from the long term toll that lung cancer treatment takes on the body. Their lung cancer journeys were all different. None were elderly. All lived life to fullest until that was simply no longer possible. My thoughts of healing and strength and prayers are with their families.

So how do we know what to do when faced with unknown options? No one can say for sure what the longterm effect of some of these treatments will be. That’s one reason we have clinical trials, and research studies over many years. Well, for me personally in my situation the answer is easy. Unless the quality of life with treatment makes it impossible to find joy in the everyday on most days, then I choose life here for a while longer. And that means treatment. We had a little glimpse of what life without treatment was like. We know I wouldn’t have been able to sustain that for long.

We know too that this treatment comes with a price, not just a monetary one. I think it is impossible to avoid it changing many lives forever. I say “we” often because this journey is our journey, mine and Dan’s, along with our family. I don’t want to make decisions alone as they are not just for me. That’s not how we do life. And seriously, I wouldn’t last long on my own. It is wanting to be part of “we” that keeps me going. But the price is high, for everyone. Maybe it’s just what families do, but I sure wish it wasn’t something they have to do, and I think it shouldn’t have to be.

Last fall I met a woman who chose treatment for a cancer many years ago. It was successful – she’s here, decades later! She described to me the longterm effects on her body. It was impressive, not in a good way. She has had multiple medical procedures and has some serious health issues related to that treatment long ago. But she also described many of the things she has accomplished in the time “given” to her by treatment. A trade-off, I guess.

We all have to choose our own paths. My heart goes out to the loved ones of lung cancer patients. Whether it is a stage IV diagnosis caught too late, or an early diagnosis that can be cured, the journey is tough. I know. We traveled it with my grandfather and my father. Whether it is months of caregiving or years, the primary focus is on the patient while often caregivers are working, filling the household role of the patient, and doing the caregiving. There is not an appropriate framework of support for them, and with the focus on the patient, caregivers often don’t advocate for themselves.

Maybe someday not so far off treatment will be available for lung cancer to be considered a chronic, manageable disease instead of the deadly one it is now. Not a cure, but safe treatment for a managed disease.

There are things we can all do(regardless of treatment choice):

Reach out to some of those caregivers. (I can think of many times with other friends or family members when I wish now I’d done more, hadn’t thought I was too busy or someone else was doing it or it wasn’t needed. I can do better going forward.) Just knowing you are thinking about the caregiver helps. Maybe see if you can drop off a meal, offer to hang out with the patient so they have time for themselves, offer to do some “chores”. Just the offer may really help.

Support increased lung cancer research by contacting your representatives. We can change this for future generations. There are exciting things happening in the fields of targeted therapy and immunotherapy. If you want to help with a donation, please consider supporting ROS1 cancer research https://www.lungcancerfoundation.org/patients/ros1/contribute-ros1/

HOPE, always have hope.

As you can see below, we are at our Salt Pond camp, enjoying the everyday every day. And yes, even Dottie and Matilda, our two Nigerian dwarf goats, are here and loving the oak leaves. We had a wonderful family weekend at Spencer Pond Camps. I’m looking forward to the start of “Camp Gramma” next week, when I’ll get eased back into the fun with 2 of the four “campers”. I’m working hard at staying healthy in every way I can, mind and body, and reading everything from Winnie the Pooh to Radical Remission (both inspirational!). I plan to enjoy every minute of the grandchildren’s fun. A busy summer ahead with many more opportunities for making memories.

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