Suzanne Adriana Remington, a retired behavior analyst from Connecticut, has been fighting non-small cell lung cancer (NSCLC) since 2019. Like many NSCLC fighters, she never smoked. In fact, she was an avid runner before her diagnosis. Suzanne has spent most of her working life helping children, and now volunteers with children involved in the court system. She also belongs to ALK-Positive Inc, a group named for the gene that drives their particular cancer. They not only support each other, but raise money to fund their own research. This allows cancer fighters and cancer researchers to truly work together to find a cure.

Suzanne Adriana Remington

I loved being a mom. Packing lunches, sleepovers and playdates, shopping for all those school needs, living through teenage angst and being a chaperone. When that time was coming to an end, and my daughter was about to launch into her own home and career, I thought I would be lost. But instead, I thrived. I started to do things for myself: I earned two post-master’s degrees. I became a more serious runner. I loved my job and had no problem putting in work time at home. I had nice relationships with my work family. The time between becoming an empty-nester and the cancer diagnosis was probably my most productive. When I looked in the mirror, I saw an industrious and useful person.

All of that is no longer part of my cancer-patient life. As a result, I can’t help but see myself completely differently. Instead of college classes, I’ve taken other kinds of classes like pickleball or mahjong. Instead of putting so many hours into my job, I try my best as a child advocate volunteer, which is far less time-consuming, but still has purpose. Instead of running for medals, I try to find other ways to stay fit so that I can crush my pulmonary function tests — believing this will prolong my life. I had to leave my work family but have made new friends in different communities which I am now a part of.

Today, my main hopes and dreams are simply to stick around as long as possible, so that I am here for my family’s Big Moments. I imagine this is different for people who have fought cancer and beat it. But my stage 4 non-small cell lung cancer diagnosis makes that unlikely. When you live with a terminal illness, the person you see in the mirror is a changed person. Of course, I miss my former self. Building a life after a cancer diagnosis is never in anyone’s plans, but it is clearly not a choice. It does make me happy that, when I look in the mirror these days, I have learned to like and respect that person who stares back at me.

For more news on cancer updates, research and education, don’t forget to 

Articles

After cancer and becoming an empty nester, I thought I would be lost. But now, I'm finding purpose and following my dreams.

The Post-Cancer Me

In preparing my farewells to 2023, I also prepare to put out the welcome mat for you, my dear 2024. I trust you will be a welcomed addition to my life. I don’t know you yet, so I suppose it is normal to anticipate your arrival with both hope and trepidation. The latter because you come with so many questions. Who will be our next president? Will peace be part of your package? And… will I be here to enjoy all twelve months of you?

Your predecessor seemed to have prepared us well for your anticipated drama. We are still experiencing world conflicts, environmental challenges and political unrest. And on a personal level, 2023 brought my first cancer spread. In medical terms, they refer to it as the cancer progressing, which doesn’t make sense since a cancer spread is the opposite of progress.

In any case, the new treatment is working to get this spread — this progression — back under control. I hope that you do better than your predecessor on that front and have packed cancer stability in your bags for me and all cancer fighters.

I also lost some special friends to this disease this year. Those are always the most unwelcome surprises a visitor can bring.

So, I respectfully request that you, 2024, leave those kinds of bags at home. But I don’t want to paint 2023 as all bad. There were some definite happy memories woven into the past twelve months. For example, I met my comrades in person, the people who are fighting the same kind of non-small cell lung cancer I have. We make up alkpositive.org; “Alk” being the driver of our particular NSCLC. Alkpositive.org does so many good things, one of which is holding an annual conference where we “Alkies” can learn more about the weapons being created to win our Alk-driven battles. I also was healthy enough to enjoy another family vacation, day trips to New York and afternoons just sitting by the Connecticut coastline. So, heads up, 2024, I expect the same splashes of joy from you too!

So here I sit, reminiscing and anticipating, as one year leaves and another arrives. I have faith in you, 2024. Please, be kind.

2023 brought some disappointing cancer news to me, but 2024, I have faith in you.

Dear 2024: A Letter from a Cancer Fighter

You know when you are taking a photo of an individual flower and you get a beautiful close up, worthy of duplication? It can be so beautiful. And you think that is the best way to photograph that particular flower. But then another person takes a photo of the same flower through a wider lens. The flower is now seen as part of field of flowers on a sunny day, with deer in the background. Both photos are of the same place; both are beautiful. And both tell a completely different story. 

Even the best of oncology teams might spend too much time taking close-ups of their patients and not enough time looking through the wider lens. I recently felt like one of those patients. A few weeks ago, I asked for a referral to an oncology cardiologist. The nurse/gatekeepers denied the request. Turns out my oncologist was unaware the request was ever made. Last week, I submitted pharmacy-related forms for completion; all but four lines and a signature needed the doctor’s attention. I then called the next day for a progress report. I was told that “things don’t happen overnight” and “I know you are anxious”. Both of these condescending statements focus on the request and not the patient. If one were to widen out the lens, they might find a patient who is self-advocating, trying her best to help the process along. Because I was looking through a wider, hopeful lens -- in which patients and oncology teams ideally work together. I was not anxious. Nor do I like people assuming they can even guess what a person with a lifethreatening illness is feeling. I am simply aware of how busy oncology teams are. And I also understand, as I expect we all do, that the submitted form means that I am one step closer to my new oncology medication; one step closer to my new lifeline. Because that is the real bigger picture. That medication is the literal lifeline for oncology patients. And oncology teams are the ones throwing out the rafts. So, if a patient is making multiple phone calls for a simple request, it is because she feels like she is drowning. This is not anxiety. This is her reality. 

Most cancer patients have their benchmark goals. They want to see their child graduate. They want to hold their first grandchild. They want to live to see a cure. These benchmarks are the landscape in which we are forced to live. And most of us do so with grace and with hope. Although it is wonderful when oncology teams can use their close-up lenses and see a patient’s many beautiful details, there is rarely time for that in the busy world of fighting cancer. Most circumstances call for a wide-lens approach. I ask all oncology teams to try to see us through those lenses. Throw those life rafts. We are stronger together. 

From a Patient’s Perspective: A Letter to Oncology Teams

As I watch people while waiting in lines, or for meals in a restaurant, I wonder what their stories are. The non-descript are the best to watch; they appear as ordinary people, perhaps wearing tattered jackets and scuffed shoes. I imagine them as someone more than ordinary, like an immigrant from another country who speaks three languages, or a poet who writes beautiful sonnets. The group of twenty-somethings have a totally different story. One of them might be thinking about how many miles she’ll run tomorrow; another might be wondering the next step on their career path. As interesting as people-watching is, it is ultimately the author’s story to tell.

Too often, we try to guess a person’s book by their cover. And then have the nerve to be surprised when we’re wrong. I have been wrong about the people I watch, and people have been wrong about me. When I mention my chapter on cancer, I get immediate edits. “But you look so good”. “But I saw you at the gym”. To which I respond “my story is on the inside”. If I tell them that I have lung cancer, they immediately assume they are talking to someone who has smoked. Then it is my turn to edit. This confirms what I knew all along as a people-watcher. That most people’s stories will surprise you. And you never know the burden one carries within their pages, just by looking at their covers.

Part of me is happy that most people with Alk+ non-small cell lung cancer have changed the face of cancer. Thanks to the weight gain that accompanies many of our treatments, we do not look anorexic. Our treatments usually mean curlier hair, not a lack of it. We exercise, we attend conferences, we write. Research has changed the trajectory of our stories — at least our chapters involving cancer. We now have choices of how to attack the cancer. This research and these choices need to be continually discussed — to help other cancer fighters learn about them, and to give them hope. That’s why I am attentive to everyone’s stories, and do my best to become an open book myself.

My own cancer chapters have taught me many things. The most important is that no one knows the burdens any of us carry. The next time I get irritated with someone surprised by my story, I will remember times I made similar mistakes. I will also encourage anyone with cancer to be an open book. Books, after all, are meant to educate; in our case, education could be life-saving. One never knows how your words can impact others. So open your pages. Share your story. We are stronger together.

People-watching is one of my favorite activities.

Suzanne Adriana Remington

The Post-Cancer Me

Dear 2024: A Letter from a Cancer Fighter

From a Patient’s Perspective: A Letter to Oncology Teams

Becoming An Open Book: Life With Cancer

Latest News