This is a rambling post. I’ve worked on it off and on for a few days, when I wasn’t too busy making pickles or watching soccer. It makes little sense to me, but maybe it will to someone else or someone someday or me someday.
Sometimes I feel as though I’ve had two separate lives – the one that lasted 58 years and two months, and the one that I’ve lived since our house fire. I use that date of the house fire instead of my diagnosis date when I think about this because that’s when I began to feel ill. Had the cancer not been creeping in, and then racing through my body, I’m quite sure we would have recovered from the house fire just fine. But it did, and we didn’t, not fully.
Here’s what got me thinking about this today. Another lung cancer survivor posted this question: “Have you ever thought about taking your next breath?” My response: “Top of Mt Kilimanjaro 2012, and lying in a bed in Boston before my targeted therapy drug 2016. Two very different experiences. ” That response kind of shook me up. Huh.. Wow. That’s so much more than the highs and lows of one’s life. It is two different lives.
But not really two lives, it can’t be, because all the conditions around us are the same as they’ve always been, and most of the time everyone around us does what they’ve always done or even moves on. So, what then? One life interrupted? No, it’s not like my life is on hold and will return to what it was. It’s a really weird phenomenon perhaps. You’re going along with all of life’s ups and downs that are expected as one moves through “middle age”, your house fills with smoke, you get diagnosed with metastatic lung cancer, you’re really, really sick, and you live. And you keep on living. But not the same life and now you have to figure out what to do in this life.
In that other life, if we’d had a house fire we would have replaced all the backpacking and camping gear because we would have used it. In that life we had plans, and the fire would have been an interruption. Plans that won’t be realized in this life, because it’s not the same life. In this life we’re making the plans we should have made in the other life, and “getting our affairs in order”. Important stuff, but not the same as the plans we were making in the other life, plans that were months in the making, that took us to new places, climbing to new heights or depths in the case of Grand Canyon.
I’m not complaining. I’m REALLY glad to keep living in this life. It’s just weird. No time ago, in that life, a few of us were going to the Y doing a daily workout that I intensely disliked, but that I could do, and it included hundreds of things like burpees, squats, lunges, sit-ups. In this life I had radiation to my lung, and it caused fibrosis in that lung (along with other nasty things ). In this life, I’m doing squats from a chair and push-ups against the counter, and I’m huffing and puffing. I walk 20 minutes and get to a hill, and… huff and puff. But, I’m doing it – I couldn’t when I was really sick – and I know it will make me stronger.
In this life our plans revolve around trips to Dana Farber, and the news we hear there. Planning for months for something exciting in the future just doesn’t make sense, but maybe it will. Maybe. Hasn’t yet. In this life we’re not yet comfortable with knowing what next week may bring, let alone make plans for months from now. But that’s not to say that I don’t have goals and milestones to reach. Sure I do! Grandchildren provide so many opportunities. Our future is filled with such events that I expect to attend. Complicated and weird, plan, but don’t make plans, or make plans, but don’t plan on it.
This afternoon I felt that I was in my old life, cheering away at a soccer game. And then, at game’s end, I pushed myself up from the chair that I should have just hopped up from. Oh yeah, right. New life, new rules. Huff and puff back to the car. Not complaining. I’m alive and very active, all things considered. And my plan? Keep on getting stronger and polepole breathe, wherever I may be.
In this new life I’ve recently gone to my first horse show and I met a very sweet praying mantis in the garden, and last year I became mom to two Nigerian goats Matilda and Dottie. Things that didn’t happen in my old life. I am happy and have purpose in this new life. Weird. polepole breathe!
For someone with a terminal disease who statistically shouldn’t be here, I don’t think I spend much time thinking about dying. It doesn’t upset me to think about dying, but I’m really much more focused on living. I’m way too busy to spend much time on the negative “what ifs” of this journey.
You see, I’ve just been given this wonderful opportunity to spend almost all of my days doing whatever it is that I choose to do. While I may not be well enough to do everything I may enjoy or want to do or sometimes think I need to do, there is so much I CAN do. Thanks to the doctors at Dana Farber and the clinical trial targeted therapy drug Lorlatinib, I feel quite well.
So instead of taking me down rapidly as this cancer named ROS1+ intended to do, it has provided opportunities that I may not have had or would not have taken advantage of. These opportunities are both tangible and intangible, and infinite I imagine. And so now a new path on the journey has just begun.
It began on that first day of school when it seemed like everyone else was going somewhere and I was not. No real plan, no real reason to do anything in particular. Every day could be a new adventure. I could read all day. That’s very satisfying. I could sleep all day. No, not unless I’m very tired. Or, I could bake! Oh dear, we’ve just completely stopped eating sugar, and are reducing how much wheat we eat. No, no baking for now. Well, how about making pickles? Haven’t done that for years and we’ve still plenty of veggies. Pickles it is.
Pickle making is science and art combined, a beautiful experiment each and every time, right up to the moment your guinea pigs (children, grandchildren, and other willing relatives) take the first taste. Since I started making pickles a few weeks ago I’ve made sour cucumber, garlic dill cucumber, bread and butter cucumber, ripe cucumber, garlic rosemary tomato, garlic dill summer squash, and bread and butter summer squash. Yup, it’s true. I’ve been making pickles! I’ve used tried and true recipes passed down from my grandmother or Dan’s mom, and ones I’ve found online. Some have been quite popular, others not so much, but all have found a home.
Now pickle making isn’t the only opportunity I’ve taken advantage of. I’m part of a trio (and that number may grow any day now) that goes on NOW WE CAN adventures. Now we can, and so we are! We’ve traveled near and far (nah, not really far), so far going to the Orono Bog Boardwalk, Common Ground Fair, and Nervous Nellie’s. Just the names make you know we had fun! Here’s some proof!
And then there’s the hundreds of soccer and baseball games I’ve been to this fall. Last year cancer kept me from going to many of the kids’ games, but now that cancer keeps me from working, and I’ve started Lorlatinib, I have energy enough to go. So, go we do!
And on and on it goes! None of us know what may happen in life, and I certainly never know what news the next scan or MRI may bring on this cancer journey, but right now I’m just too busy finding joy in the everyday things of life to worry about dying!
Spread the word – if you have lungs, you can get lung cancer. And, it creeps up on you, disguised as anything but lung cancer. At least that must be what it does, because so many of us are diagnosed at the metastatic stage. Why health care professionals don’t think of lung cancer when seeing a patient with symptoms such as a little cough cough that won’t go away, I just don’t know. So spread the word. Pay attention to your body. Be demanding of your PCP.
In an attempt to spread the word, I was interviewed by a local paper. Below is a link to that article and then the text of a letter to the editor that I sent as a follow-up.
Letter to Editor, Weekly Packet, Sept. 2017
Thank you to Monique Labbe for her thoughtful article on an unexpected turn in my life, lung cancer. Ms. Labbe conducted a kind, compassionate interview on a difficult topic, while surrounded by the laughter and play of several nine to eleven year olds.
I’ve immersed myself in learning on this topic. There are a few important “take aways” that I believe every breathing person should know:
- If you have lungs, you can get lung cancer. The stigma associated with lung cancer and smoking impacts lung cancer education and research funding. It also causes us to ignore the subtle symptoms, leading to many being diagnosed only when the cancer is metastatic.
- Lung cancer kills more women yearly than breast, uterine, and ovarian cancer combined. For more information about lung cancer patient support and advocacy visit the Bonnie Addario Lung Cancer Foundation lungcancerfoundation.org .
- When you have a tumor biopsy, ask for genomic testing. If a cell mutation, a genetic driver is found, your oncology team may be able to treat your cancer with a targeted therapy, instead of the cancer with a more general treatment plan.
- Don’t be afraid of clinical trials. This field of research is moving at an amazing pace. Being a part of the research gives one hope, for oneself and the future.
- Cancer (any chronic disease) impacts more than the patient. It seems unavoidable that it takes an incredible toll, financially and more so emotionally, on the entire family. Caregivers need support perhaps even more than the patient on this rollercoaster of a journey.
I’m very grateful that I’m able to be treated at Dana-Farber Cancer Institute, where I’m currently in a clinical trial studying a targeted therapy drug that treats ROS1+ lung cancer that has progressed to the brain (in my case brain meninges). We’re hopeful that it will extend my life for a very long time. The well wishes and prayers on our behalf from so many in our community are a great source of strength.
Corinne C. Pert
Sorting out what is caused by what, and when to be concerned or not, is tougher than you might think. For example, everyone has headaches, but headaches caused by cancer progression to the brain, at least in my case, feel different and aren’t helped by ibuprofen , Tylenol , migraine med, or acupuncture. I knew they weren’t migraines because I used to be tormented by migraines. That was before acupuncture! Luckily for me, the cancer headaches weren’t bad, just chronic and different – a symptom of cancer, and as the new drug attacks the cancer, they’ve resolved.
Recently I’ve been plagued by serious hand neuropathy . Now, that could be a symptom as it is caused by the Central Nervous System , and the meninges where my cancer progressed to is part of the CNS. But, it’s not. It’s a side effect of my clinical trial targeted therapy drug Lorlatinib. And, to make sure of this, I was off the drug for a week. Yup, relief came at day two. So now I go back on at a reduced dosage.
Other examples include my new high cholesterol (side effect of Lorlatinb), and the body aches which I think are a side effect of the statin that I’m taking for the high cholesterol ! Or, perhaps it’s just regular sore muscles from aging or going back to the Y to work out. Not sure, but not really much of a bother.
But it is really important to pay attention to the body and the subtle differences as they provide clues as to whether something is a symptom, side effect, or “normal”. Here’s another example – When I was on crizotinib I could count on bouts of diarrhea every four or five days. Solution? Imodium. With Lorlatinib I had no digestive issues, and then a few weeks into the trial I began to have bowel incontinence. Not diarrhea. No explanation. Scary. Because it could mean that the cancer was in my spine and messing with nerves to bowels. Luckily for me, the first statin drug I was on didn’t work for the cholesterol and I was taken off it. Why luckily? Because it was causing the bowel incontinence we think. It stopped a few days after stopping that med. It isn’t a known side effect of that med and the Dr. was ready to scan my spine in my next scans. But, no more problems with that!
Another side effect of Lorlatinib that I’ve not heard a solution for is weight gain. Now that too is part of life, but in this case it really is a side effect. How do I know? Because I gained 9 pounds while on this medication for nine weeks, and I’ve lost at least five in the week I’ve been off it. Now, I’m hoping that with being careful about diet, along with walking and working out, that I’ll be able to control this weight gain. But I’m not going to beat myself up over it anymore than I did the high cholesterol . Out of my control.
Today I went back on that reduced dose of Lorlatinib. I’m really hopeful that it will not cause neuropathy at this dosage. Two fellow ROS1ders have been through this and the lower dose worked for them. My oncologist really pays attention to the balance of fighting the cancer and quality of life. He was concerned about how the neuropathy was limiting what I could do and affected my sleep. We didn’t discuss options for if the lower dose still causes neuropathy. Fingers crossed (and hope they don’t fall asleep)!
Every day I make sure to embrace the gratitude and joy in my day. It’s very easy as I live in a beautiful place with the most wonderful people, and I have everything I need to sustain a truly fulfilling life. Today my joy and gratitude is in thinking about everyone and everything that makes it possible for me to be here. I’m thinking especially about the clinical trial I’m in. Tomorrow we travel to Dana-Farber for my quick three week check-up (no scans). Dan will drive, once there I’ll have blood work and an EKG, and then meet with “my” oncologist and the clinical trial research nurse.
I’ve little idea how this particular trial drug was developed, but it is one of now several targeted therapy drugs being studied for targeting ROS1 in lung cancers and other cancers. Lorlatinib, the targeted therapy drug I’m on, hopefully does what crizontinib did for me in targeting ROS1, and then it goes where crizotinib seemed to not be able to – my brain. In my case, my brain meninges. When you think that only 1% of lung cancer patients have ROS 1, it is mind-blowing to me that there is a clinical trial at my treatment center that is specifically designed for my situation: ROS1+ lung cancer, progression to the brain with first line of treatment. A Study of Lorlatinib in Advanced ALK and ROS1 Rearranged Lung Cancer With CNS Metastasis in the Absence of Measurable Extracranial Lesions
I’m ever so fortunate to live close enough to Dana-Farber to be treated there. Participation in the trial is relatively easy for us. Driving to Boston every three weeks is doable. Clinical trials aren’t offered everywhere. This trial isn’t available to many in my situation because they are unable to make the commitments necessary, specifically traveling to the clinic site of the trial. The Bonnie Addario Lung Cancer Foundation is working to address this problem and help to make trials more accessible for patients anywhere. ALCF Centers of Excellence Thank you to them for this advocacy work.
I’m so grateful for the researchers, the doctors, the patients in prior trials, and the countless others that I’ve no idea about who have and continue to contribute to this and all the clinical trials. It gives me joy to know I am contributing to something that will help a patient in the future, whether it is living with lung cancer as a managed chronic disease through targeted therapy, immunotherapy, combination therapy, or advances in early detection or finding that real C word, cure.
I am ever so grateful for my ROS1+ FaceBook group and my fellow ROS1ders. They are my greatest source of information, inspiration, and support (outside of my network of family and friends). In addition to this group, I follow several blogs of fellow lung cancer survivors, groups, and foundations. From all of these sources I glean varied things that help me in a multitude of ways.
After we began this cancer journey, and I’d completed radiation, started Xalkori and begun to regain strength, we were finally at a place where we could stop, take a deep breath (well, Dan could – not so much me…), and reassess where we were. That’s when we began to hear the term “New Normal”. I know it is meant to be a helpful term, I think it’s a way of saying that you can find normalcy in this world of cancer. I think it helps people think of managing a chronic disease or living with metastatic cancer as a change in how things are done that can actually feel normal.
I’m fairly certain my first few months, as hard as they were, were much easier than many in my condition and situation because of Dana-Farber doing the genomic testing that found my ROS1+cell mutation. Instead of chemotherapy , after my radiation I was given a targeted therapy drug, a pill taken twice a day. So while Xalkori(crizotinib) was shrinking the tumor, my ribs were healing, my esophagus was recovering, and I was slowly regaining strength. That’s when we tried to embrace this concept of New Normal. Yes, we settled into new routines and adapted to the changes quite well. Taking a backpack with a change of clothes, Imodium, and adult wipes with me whenever I leave home has become my normal. Taking medication regularly, something I’d managed to escape in 58 years, has become normal. But, try as hard as I can, I do not think of our everyday life as normal.
Normal: (noun) the usual, average, or typical state or condition. (adjective) conforming to a standard; usual, typical, or expected.
We (my support system) do an incredible job of living life fully and finding joy in all the normal things of life. Yesterday Dan and I had the chance to “high five” three of our four youngest grandchildren at a soccer event. The fourth was playing baseball (we watched him last week and likely will next week). Upon seeing a pic of her little brother playing soccer, our eldest grandchild spoke wistfully of “those times” while at college studying. That’s all normal! It’s what our family does. And, Dan and I find lots of “normalcy” in our days at camp, seeing the sun rise and set, happy and in love as we’ve been for well over forty years.
Maybe I’ve made normal a “feeling” and it really shouldn’t be. But I refuse to think of some aspects of this journey as normal. Especially, not my normal. Things from the complex to the very simple. For example, hurrying up the hill. I’m convinced it is not normal to huff and puff going up our hill. That may be what happens to me right now, but even for me, in my condition, it isn’t going to be my normal. You see, I’m going to get these lungs in such great shape that I can run up that hill with no puffing! Okay, so maybe that wasn’t as simple an example as I thought. Here’s another – that cloud that hangs over you when you have metastatic cancer and you have scans every six to eight weeks to monitor medication effectiveness or disease progression. Now really, does anyone consider having to deal with that normal? Yes, it is now a routine that we’ve figured out how to manage without it intruding upon everyone’s daily life too badly, but normal?
All in all, we live a pretty ordinary life. It’s an incredibly rich life, filled with joy. That has only been enhanced by this cancer journey. My new normal? Being present, joyful and grateful every moment of every day!
People talk about “fighting” cancer, “courageous battle” with cancer, and similar terms. I don’t really see it that way for me personally. I don’t see myself as “fighting cancer”. There’s a real battle going on inside me, no question, but my role is somewhat removed as I see it.
cancer crept into me and grew slowly over time. (lowercase “c” intentional) It happened while I was in the best physical condition of my adult life. Then, somehow (I’m still not clear how), this cancer guy named ROS1+ hopped into the cancer driver’s seat. That lazy cancer that was creeping through me took off, with ROS1+ as driver, like the energizer bunny! Zoom! Whoosh! Doing donuts in my left lung and heading off to the liver land. I don’t know how that cell mutation happened, and for my purposes now, it doesn’t matter. (Figuring it out for others’ future does matter, and I hope researchers at DFCI can learn from my journey.) All I know is I was going along my merry way, climbing mountains and playing with children, when something happened. And that thing, at that time, was good ole ROS1, putting the pedal to the metal. Who knows how long I had gone merrily along my way with cancer growing in my left lung hilum, where some pretty important stuff happens, or how much longer it would have taken to show up if ROS1+ hadn’t jumped in.
Okay – the “fight” and how I see it. I believe the fight is between my medication and the cancer. My body is where the battles take place. The many doctors (radiologists, oncologists, neurologists, pathologists) at DFCI are monitoring and assessing all the battlefields, and making decisions based on those assessments – they’re the generals. (Ultimately I’m Commander in Chief, but I’m a wise person and they know what they’re doing!)
The generals sent in my first hero Xalkori Crizotinib, and she was brave! She fought back cancer and I could breathe. My poor little left lung re- inflated! Xalkori hunted down ROS1+, tied him up, and sat on him. (Sorry, just sounds like a male name.) ROS1+ cancer was still for months, a year even, until finally one night as an exhausted Xalkori slept, cancer tiptoed past the Blood Brain Barrier to my meninges. No joke, that’s how I see this! Time for the generals to put their heads together for a strategy meeting. The outcome? The next weapon! Lorlatinib. It not only protects the body like my friend Xalkori, it boldly crosses the Blood Brain Barrier, hunts down, and attacks cancer as it sneaks around and around my brain, looking for places to settle. The generals’ plan is that Lorlatinib will cause the cancer to retreat to a point where cancer is again contained and managed, never to escape again. Just weeks into the battle I can feel the battleground shaking. Lorlatinib is powerful!
Now, I’m not letting myself off the hook or being passive here – I have an important role too, just not in the heat of the battle, sword to sword. That would be too exhausting, to be in fight mode all the time. My job is to strengthen the fortress, to give the generals and the warriors the best support I can so they may win each battle, and so, I don’t see it as “fighting” – on my part anyway. My work is essential to the battle, and it is both joyful and exhausting. Believe me, I want this cancer gone, but that’s not what’s expected, so I see this as a journey. Medically, it is managing a chronic disease. I’m in it for the long haul, a marathon, not a sprint. Likely more battles such as the ones described above will occur in my body, maybe many. Hopefully a time of quiet management will come soon and last a long, long time, with the ever present sentries scanning the skies, land, and oceans of this body for cancer. I will be living life, taking the best care of my mind and body that I can, supporting the work of DFCI and its staff.
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.