ROS1 – Page 4 – polepole ~ breathe

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.

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.

Good news Health Update

Chest and abdomen scans, brain MRI, and blood work all look good! Wow, that means the cancer that is there is stable and the drug isn’t messing with my body badly enough to need to make changes. Now, unless I become symptomatic, we can breathe a sigh of relief for another nine weeks. That takes us through the holidays all the way to my third cancerversary! Yup, three years since the big blindside. Three years of figuring out how to live well with metastatic lung cancer. Three years of living!

Below: February 2016 and May 2016 after two months on my first targeted therapy, crizotinib.

IMG_2968 (1)

Yesterday at 3:30 a.m. we left home to drive to Dana-Farber Cancer Institute for the above tests and an appointment with my oncologist and clinical trial nurse. Big traffic jam getting in, but 6 hours later we arrived, parked, made our way to Dana L2 (I think). I got my beverage of the day in prep for the scans. Then blood draw (extra for the study) and IV in for scans. Scans done and in for brain MRI. Ear plugs, bean bags around my head, hockey mask on, and slide in for a noisy, long nap. Did I say it was long? Oh yeah, I did. IV out. Then back to Yawkey and up to 3 for a very quick cafeteria lunch, and on to the 10th floor. Vitals done (anyone wonder why the blood pressure might be up), EKG, and off we go to the patient room. Whew! In comes a fellow (yes, a fellow fellow) and the nicest trial nurse you can imagine. Dr. ? (the fellow) told us the scans looked good and that Dr. J, my oncologist was waiting for the results of the MRI and would be in shortly. We talked about my neuropathy, and my theory that the tendon inflammation I have (hands and feet) is related. No one can explain it to me, still. After listening to my heart and breathing (all good!), the fellow left, we talked with Nurse D, and then soon the Fellow and Dr. J were back. The brain MRI looked stable too. So, good news all around.

Dr. J suggested I might want to reduce my dosage again to see if that helped with the neuropathy. Early on in the trial we reduced the lorlatinib from 100mg to 75mg for that reason. I said, “No thanks, I don’t want that nasty beast back in my brain.” (Not that it is totally out.) We talked about it a bit more, and Dr. J said, “So you can live with it this way?” And of course I replied, “You used the key word there. I choose to live. I’d rather not take a chance on it now.” And so, I remain at 75mg.

Finally it was off to floor 2 to wait for the cancer fighter, our Lady Lorlatinib. I imagine her dressed in white this day for Lung cancer Awareness month, riding from the heavens on Pegasus. She is a powerful ROS1 cancer fighting targeted therapy drug – that I know. Whenever I feel her working in my brain, I am grateful. Grateful to ALL that make it possible for me to live.

When everything was done, it was only 2:45 p.m. We find the car in P5 and head to Seabrook (much cheaper place to stay), an hour away. In good traffic that is. Two hours for us yesterday… Dinner and off to sleep. Up at 5:00 a.m., a stop for breakfast, and home before 10:00 a.m. A whirlwind 30 hours! For both of us – thank you Dan.

And now here I am on the couch with the dachshunds, bird feeders filled! Finding joy in the everyday every day.

ROS1ders are raising research funds to learn more about, and to find treatments for ROS1 cancer. If you can help us, just follow the link below. Thank you.

Donate to ROS1 cancer research

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.

Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime. I wrote a letter to the editor earlier this year. I wrote again and it was published this time. There’s a limit to the number of words, so I didn’t include everything I wish I could have. Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement. Testing your home is easy and cheap. Abatement is done professionally and may be easy and inexpensive or it may be $5000. Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

Neither here nor there

Neither here nor there, but where? Not complaining, just explaining! This struck me when I saw two photos recently. One from when I was very ill, but starting to improve after two months on crizotinib (targeted therapy drug for ROS1+ lung cancer). The second, looking quite healthy, taken recently in the beautifully painted walkway, the Bridge of Hope that connects Dana-Farber with Brigham and Women’s.

It’s weird – this state of limbo (not the “place “Limbo!) that we Stage IV lung cancer patients live in. It’s just so different from my mindset or life in general before cancer. You see, lucky stage IV cancer patients are informed their disease cannot be cured, but can be treated, thus prolonging their life. (Some may just be told that it’s time to get their affairs in order.) In my case when I initially asked if I could take my first targeted therapy drug crizotinib forever, my oncologist thought I meant that I thought I would now go on to live a normal life and die of old age at 100 as planned. So she felt obligated to say no and went on to say that some patients had extended their lives by more than a year on this drug. (I know someone that just celebrated six years on crizotinib!) Also in my case though, and I’d guess most, just to know you might be given the time you need to think about all the things you should have already done to prepare for the inevitable gives you hope. Hope = Time, but does Time = Hope? Probably. I’ll think about that.

But as I said, “It’s weird.” I mean, really. People thought I was a goner for sure two years and four months ago. I looked like I was and everyone knows the stats are dismal for Stage IV lung cancer. And here I am now looking quite healthy. I wonder what people think – cured? Nope, I wish. Do you do like the song says and “live like you were dying”? What’s that look like anyway? I wouldn’t want to live the way I was during the few months we thought I was dying. Now if it means do all the things on your life list – well, now that would be great if one is physically able to. What’d we do? Got two Nigerian Dwarf goats (complete with a barn at home and at camp), modified Camp Gramma by having a mom there to help Gramma, and tried to get back to a normal life. Eventually I stopped teaching to focus on my health. Not on my life list, not even the goats. Alpacas were though. I’m so glad we got our goats! They are just wonderful, fun, loving, and very entertaining. Alpacas are much more work.

Another weird thing – clothes. I was just starting to replace things from the fire when I got sick. Now I don’t want to invest a lot in things I either won’t be able to use or won’t get good use of. Silly? Maybe. (For example instead of replacing my Marmot down jacket I bought a White Sierra one that will keep me warm for the short time I’m out in the cold.) And then there’s the fact that since radiation I can’t stand certain clothes. Or that when my tummy bloats I just want my comfy pants. I’ve solved pretty much all of it by buying a few of a few things that are comfortable and presentable enough, and have no metal so I can wear them around and even to appointments and leave them on for scans. Footwear is a challenge. Still working on that. Weird, right? Being challenged by knowing what to buy for footwear when you’ve been wearing the same size shoe for 50 years? Whether it is meds or cancer, my feet are not what they were, and that’s weird.

Yup, weird. Like being stuck. Feeling ready to get back to really living, but not feeling quite well enough to. Just when you think you know what this life can look like, something changes. I know that happens from time to time for everyone, but it is a way of life for Stage IV lung cancer patients. And all the while life goes on normally around you as it should be and as you want for it to.

There are more examples, but you get the point. Neither here in the present fully, nor there in my past where I lived fully for 58 years. Not really knowing how to think about the future (except to be hopeful), living for the present, but differently. Yet I am grateful to be here, to have hope, to be able to enjoy the everyday every day. I’ve had so many firsts since my diagnosis – I think I’m more aware of them now. A recent first is watching a family of fox kits. But I’ve had many others. Things that being given the gift of time, the gift of being able to be home, and the gift of being “well enough” have made possible. Some people, many really, with this disease are not so lucky as to be able to ponder its weirdness or to be given this gift of time. And yes, TIME=HOPE. Always, always have hope.

Oh, yes! I have checked something off my life list that I bet I never would have if cancer hadn’t shifted my focus. I’m in the midst of publishing a children’s book that I wrote in 1991. Very fun to think about. Written in my past life, being illustrated (not by me – ha!) in the present, it will be ready in the future!

Here I am enjoying the everyday every day with Dan and the family, and feeling ever so hopeful about the future.

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