ROS1 – polepole ~ breathe

“Scans look good!”

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

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

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

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

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

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

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

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:

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.).

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.

What will tomorrow bring?

Today is the end of cycle 2 of the Lorlatinib trial for me. Each cycle is 21 days. Labs, EKGs, and oncology visits are every three weeks; MRIs and scans every six. Tomorrow will be my first scans and brain MRI since beginning the targeted therapy drug Lorlatinib (compliments Pfizer and Dana Farber Cancer Institute). After 16 glorious months on Crizotinib, it became evident that my dear friend Criz could no longer protect my noggin. But, miracle of miracles, a clinical trial appears tailor made just for my circumstances. Lorlatinib not only targets ROS1 (my cancer mutation) in the body, it treats the brain. You see, since March 2017 there has been increasing “enhancement” in my meninges on the MRIs of my brain. So, the change was made and tomorrow is the day to see how this new friend, the one with few side effects beyond making me chubby, is doing.

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