Corinne

Symptoms, side effects, or just part of living?

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)!

Gratitude and Joy

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.

The New “Normal”

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!

The “Fight”

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.

Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

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)

Dr. Janne and Bonnie Addario

First Day of School

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.

Lung Cancer can’t stop Camp Gramma!

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.

Whose lung cancer is this anyway?

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.

Compression Socks

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

Phone calls

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.

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