Below is a short video of my oncologist with Bonnie Addario, both heroes. He is the head of Thoracic Cancer at Dana-Farber Cancer Institute. She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation. “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ” The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)
Today is the first day of a new school year. And where am I? Making garlic dill pickles and sitting on the deck here at camp, with my feet up, watching the seagulls. Weird. That’s how it feels. Weird. I shouldn’t be home, you see. I should be at school. In my classroom, with my students.
While cancer can’t stop some things (Camp Gramma!), it has stopped me from doing one of the things I love – teaching and learning with children every day. Today is the first time in a very long time that I wasn’t directly impacted by the first day of school. Why, even when I was a toddler, my older siblings left me on the first day of school. Then, I went to school for years. I took a six year break from school while the children were growing, and then spent years with them being in school. While that was happening, I went back to school and became a teacher. From there, I’ve not missed a first day of school. That’s a longstanding tradition. A tough one to try ignore or think of as “just another day”. It’s THE FIRST DAY OF SCHOOL, and it means something to me.
Last year I tried to work 60% time, and I think did so quite successfully until the end of May. I know it was important to me that I be there, and I hope my students benefited from my presence. I appreciated my school administration’s willingness to let me job share. I’m grateful to Andrea for being my longterm sub through my sabbatical and my illness.
So it was, in May 2017, we got confirmation that cancer had crept past my magic friend Xalkori (crizotinib) and we would need to move to the next line of treatment. Yeah, I already knew – we’d been watching the beast creep in, and there were symptoms for a couple months, but now decisions had to be made, appointments were scheduled, “cruise control” shut off. Time to apply for what, in the world of Maine teachers, is called “retirement disability”.
The term “retirement disability” really bothers me. It has nothing to do with retiring, and is about accessing that retirement fund for disability. I wanted to retire on my own terms, when I was “ready”. Retirement should be joyful! I was occupied with completing forms to giving permission to MainePers to access my medical records so that someone could judge whether I was disabled enough to qualify for benefits. It was not the retirement I had envisioned. (I am though very grateful for having benefits to apply for, and access to health insurance.)
Back to today, the FIRST DAY OF SCHOOL. Today, I am joyful on this first day of school. The paperwork stuff (another story) all worked out. I had a wonderful summer of teaching and learning with children all summer. I am here in the place that I love for longer this fall than if I was back to school today. And, even if it’s not every day, I know I will be with children learning and playing, either with the grandchildren or volunteering in my dear friend Kathy’s classroom. It’s the first day of school, and I’m drinking my afternoon tea.
This lung cancer cannot stop a Gramma from doing what she loves. And what does a Gramma love to do? Play with her grandchildren of course! And we don’t just play GO FISH and OLD MAIDS – although I do like those games. All my life I’ve played and learned with children, as a child, a parent, a teacher, and grandmother. I can’t imagine not finding a way to continue.
For the past few summers I’ve invited my four grandchildren to spend the day playing at our camp multiple days per week. It began, I think, as a way to help with childcare, a way to spend time with them since I’m much more available in the summer, and a way to be sure to share with them the most special place in the world, the Salt Pond, Sedgwick, Maine. It’s also the perfect way to assure that I will be able to play in the summer! It has become one of my very top reasons to not only want to carry on, but to keep myself in as healthy condition as I can. You see, keeping up with two nine year olds and two eleven year olds as they explore, create, play in the fields, woods, and ocean, is not for most grandmothers, very few I imagine. Even our camp counselors (their mothers who take turns playing with us) have a tough time keeping up with Gramma and the campers.
I began on my first targeted therapy Xalkori in March 2016. I’d been really ill, had radiation, coughed until I’d collapsed my lung and broken two ribs, and lost 30 pounds. The drug started helping right away, but I’d been quite weakened by everything. And, now the children were starting to wonder about Camp Gramma. “Will we have camp this summer Gramma?” Of course I wanted to, but I don’t think any of us, except the campers, really thought I’d be up for Camp Gramma by mid June. But Grammas are tough old birds.
Again, my family rallied around me. If I wanted to do camp, others would help make it happen. That year, last year, we decided on three days per week. Every day Gramma would be joined by a fellow “counselor”. My daughter Mandy did one day, daughter-in-law Jenny did one, and granddaughter Jasmine one. Back-up plans were in place and fingers were crossed as we approached June. Everything went as planned, perhaps better and Camp Gramma was in business. Lung cancer never took a minute away from the campers. They hiked, swam, built forts and fairy houses, played with the goats and in the field, and so much more! The summer of a lifetime for all.
This year we did something similar. Our final day for the summer was just a few days ago. It was a perfect summer. Yes, we missed some Thursdays because Gramma was in Boston for scans and appointments. But we didn’t let cancer stop us from having a great time. We swam, kayaked, hiked, played with goats, gardened, played in the field and forest, picked cukes and made pickles, played board games, learned about macro-photography, made goop with friends, cuddled with cats and danced with dachshunds, and when all was said and done, we ate ice cream. A perfect summer!
Gramma and her campers are oh so much stronger than lung cancer.
While it is my body that is site of this chronic disease disaster, it impacts so many more in so many ways. Even I don’t talk about it as “me”, but in a recent interview kept referring to “we”, meaning Dan and me, the “we” we’ve been since I was 16. My body is going through the physical process and getting roughed up pretty badly by the cancer and the treatment, but the physical and emotional impact is on “us” and reaches all of our family (children, grandchildren, siblings, close friends) as well. For example, “we” go to Boston (now every three weeks) for two days and everyone else needs to care for our dogs (3) and our goats (2), and sometimes our boats (true!). So, for us, this is “our” disease.
Throughout the early months of 2016 we were deep in learning about metastatic lung cancer. You might think I would know about it since it is what took the lives of my father and his father. But that was then and this is now, and now is such a better time to find yourself with this diagnosis. We knew one thing – even though we’d never been there, for us, Dana Farber Cancer Institute is where we wanted to be treated. So, for our family this means going to a treatment center five hours away.
On our first trip to Boston (which started at BWH due to not yet being officially diagnosed) “we” meant Dan, my sister Nada, me, and my body. (I think I might have made hotel arrangements, but maybe Nada did – see? “We”) After short appointment at BWH, we were referred to a next day appointment at Dana Farber. “Good, they’ll see us! Oh, now we’re staying, and what does that mean?” Well, really it meant for me, that all the others who make up our “we” jumped into action – they already had – and just magically (to and for me) made things happen. Mandy and children took care of two dogs, Tim and family had the other. Thankfully, that winter was Pre-goats. Nada took care of arrangements in Boston, and Dan took care of me. Me? My head was in the game, my body was definitely not, and “we” were just trying to get me to the point/place where we could find some help and hope. Thankfully, both came quickly at Dana Farber.
I don’t know when I truly realized that our life could never be like it was before cancer. Despite our advancing ages (ha!), WE had plans, physically active plans, and goals requiring that we be able to do things that it is unlikely my body will be able to do. So because of our disaster that’s happening in my body, WE have adjusted those plans, set new goals. Some of those goals have to do with treatment of course, but many are modified goals from the past. We are ever so grateful for the things we did do together while our bodies were both healthy and strong. Will we do backcountry backpacking in Grand Canyon again and take the grandchildren as hoped? Nope, but my body is well enough that we could do a family trip to Grand Canyon (or anywhere we choose) and some can hike while others sightsee.
Both years since cancer became part of our family’s plans we’ve taken our family trip to Spencer Pond Camps. And for the kids I think this second year seemed pretty much like the years before cancer. For Dan and me it is different, with more careful planning to assure that I can get the rest I need, that others do things I took care of in the past. But, “we” are determined to do what we can while we can.
Another big way this lung cancer has changed our life is financially. Thankfully I had very good insurance as a paid benefit through work. But now I’m unable to work and on what in my world of state/teacher employment is called retirement disability, and paying for that really good insurance with the very high premium while earning significantly less. We know we will easily meet the deductible early in every year. Every time I have scans it is several thousand dollars. Our deductible and co-insurance are higher because of our choice to self-refer and go “out of network” to Dana Farber. (For us “in network” is Maine, but at least our plan will cover out of network.) Travel, lodging, and meal expenses all add up. Dan takes days from work as well. We share the burden of this lung cancer in so many ways.
I am ever so grateful I have a “we” to share this burden. I’ve met other patients who have no family close to them, who rely on friends, neighbors, or are alone. I don’t have any understanding of what that is like. Having this support system is what keeps me going. I’m not going to let “us” down. Because I know how hard everyone is working to help me, I am determined to do everything I can both with my health and in being the best person I can be. While I am sad, as are we all, that “we” are on this lung cancer journey, I find joy and happiness all around me everyday, and I share/spread this with the rest of “we”. Please remember, it is essential to “give some love” to everyone on the journey, not just the patient.
I never knew, but lots of people wear compression socks, nurses especially. All my life I’ve gone barefoot whenever and wherever I could. The only time I’d wear shoes in summer would be to places that wouldn’t permit my bare toes. Not so anymore – at least not if I want to have ankles! Be it cancer (they do call them “cankles”) or medication, I have some fat feet. So, the solution to this problem of fat feet and cankles (swollen calves and ankles) is to wear compression socks.
How do compression socks work anyhow? Well, for a comprehensive answer (and a pretty interesting one) check out this site: Berkeley wellness compression socks In my case, they’re needed for leg swelling – I’m not really worried about those varicose veins like all the young nurses I know – so, here’s what they’re doing for me: “By squeezing the leg tissues and walls of the veins, compression stockings can help blood in the veins return to the heart. They can also improve the flow of the fluid that bathes the cells (referred to as lymph) in the legs. Improving the flow of lymph can help reduce tissue swelling.” (Berkeley wellness)
Back to my bare feet! Not many things cause me to feel depressed, but the idea of not going barefoot was leaning that way. I decided there must be some way to deal with this blow, and then my daughter-in-law introduced me to Sockwell compression socks, a little more fun than typical compression socks. From there a quick check on amazon.com led to the discovery that while my toes may not be free, they can be very happy!
Since we “rebuilt and refilled” our home after the 2015 fire, I’ve not wanted any extra anything. No more clothes in the closet that don’t get used, etc. – that includes socks. I only owned four pair of socks at the time I was introduced to my fancy compression socks. I tiptoed slowly into compression sock ownership, purchasing just one pair to start. Oh yeah! Comfy, snug, keeping my feet and ankles under control, and oh so stylish! That was about a year ago. I actually wore holes in that first pair recently. (Maybe that’s because I don’t wear shoes with my camp socks!) Presently I have four older pairs for camp wear, and four pair for wherever wear. Shop around for the best prices as they are quite pricey.
Now that’s not to say my toes aren’t ever so grateful when I undress at night or when they’re paddling in the ocean, free as a fishy. But really, you know, there’s a way to make any situation a little bit better, and if fancy compression socks can do that, well…!
Nurses and technicians at Dana Farber admire my compression socks when I go in for tests, especially my puzzle pair. I think they understand. puzzle compression socks
Funny thing thinking about phone calls and this journey. It was that phone call on my cell phone in a restaurant that first caused alarm. Thursday (8/24/17) afternoon, sitting in traffic on 95 north of Boston, we were waiting for a phone call. Usually my MRI and scans have been read by the oncology radiologists and seen by the oncologist before my appointment last thing in the day on my TEST DAY (MRI, Scans, BloodWork). This time, the first TEST DAY since being in the clinical trial and on Lorlatinib, the oncology radiologist wanted the neurology radiologist to look at my MRI before making a firm statement. Everything in the rest of the body was the same (radiation scarring, but not tumor showing in the chest, and same tumors, but no bigger on the liver), and the radiologist and the Dr. said the brain meninges changes are so subtle that all they could say is that there wasn’t any worsening – good news. I am glad they were doing this, just anxious to leave without REALLY knowing.
So, here we were, headed home, with the news that MAYBE the med was working. Luckily for us, the research nurse understood that we really needed to know, and she said she would call us as soon as the neurology radiologist read the MRI. She did! Sitting in four lanes of stopped traffic, chatting about all the cars with just the driver and how many people were texting while driving, my phone rings through the car system, True to her word, as soon as she heard she called, and the news was not to be dreaded, but hopeful. A partial response to the drug after six weeks, 40% reduction in the “enhancement”. Time to cry in relief, and then move on.
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.