Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020, considered to be highly treatable, but chronic and incurable, which is currently in remission. She is also a fifth-degree black belt in TaeKwon-Do, and is the assistant instructor of a TaeKwon-Do class. She enjoys working part-time with special education students, crocheting, walking, indoor rock-climbing and talking to and petting any dog she sees.

Karen Cohn

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of 

One of the supports that got me through treatment for follicular lymphoma (a form of blood cancer) was my dog. I was diagnosed in July 2020, smack in the middle of the pandemic, and suddenly, in addition to all the pandemic restrictions, I was receiving chemotherapy and immunotherapy that suppressed my immune system. I lived alone, and I saw very few people in person for the six months of treatment, and my dog was my primary source of companionship. She died a few years ago, of old age; it’s not every 70-pound dog who lives to 16, and I was grateful for every day I had with her. She got me through both a pandemic that physically isolated me from everyone around me, and simultaneously through cancer treatment that occurred during the pandemic, from July 2020 to December 2020. I don’t know what I would have done without her during that time; I had almost no in-person contact with anyone else, and I don’t know that I could have made it without her.

Life moves on, and there were things to do as I moved further from treatment. I took a trip to India with friends, something I had put off for years because I simply couldn’t leave my geriatric dog with a pet sitter for that long. I had my house renovated, a process that extended over a year beyond the contractor’s estimate — a long story that, like the renovation, isn’t really finished yet, and may not be for some time. But the house is livable, if not finished, even with much of my belongings still in the basement, waiting for me to move them upstairs, now that most of the living space is finished. And finally — finally — I reached a point where I was ready to adopt a new dog. A couple of weeks ago, I started looking through shelters, and I found a wonderful year-old terrier mix, who has been taking over my house ever since.

My shelter dog is wonderful. She’s brought love, light, and laughter. I tried putting her in a crate, and she broke out of it — a wonderful analogy for not accepting the common beliefs about cancer, or any other chronic illness. She chews up weird things; the evening she broke out of her crate, she destroyed a roll of toilet paper that she found on the bathroom counter; I came home to be greeted by a dog at my door (quite a shock, when I’d left her in a crate) and shredded toilet paper all over the house.

So many people with cancer — even cancer in remission — are afraid to live their lives, are afraid to make plans that involve the future, because the cancer might return. I get it. I have that same problem myself. But I’m tired of living in fear, and I’m tired of not making plans. I adopted a dog — and yes, I’ve made sure that if something happens to me, she’ll be taken care of, but at 59, single, with no kids, I will need to do that even without cancer — and I’m making plans for my future. It’s time to move on from that single focus. If the follicular lymphoma comes back — or if another cancer rears its ugly head — so be it. But I need to move on.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Articles

A cancer survivor shares their journey through follicular lymphoma treatment during the pandemic, highlighting the companionship of their dog. The pet provided emotional support during isolation, and after its passing, the survivor embraced life by traveling, renovating their home, and adopting a new dog. This new pet symbolizes breaking free from fear and living life fully, despite the uncertainty of cancer recurrence. The survivor emphasizes the importance of making future plans and moving beyond the fear of cancer returning, while ensuring their pet's care in case of unforeseen circumstances.

I share how my dog helped me through treatment during the pandemic and how adopting a new one reminds me to keep living and planning for a future beyond cancer.

Moving Forward After Follicular Lymphoma With a New Companion

Recently, I saw a meme in a cancer support group that said “We all have expiration dates. Cancer tricks you into believing you know yours.” And it does. Cancer was once a death sentence; treatments for anything but very early-stage cancers were ineffective, and mostly aimed at extending life, at providing quantity at the expense of quality. Even the most effective treatments had horrendous side effects; a friend of mine was successfully treated for pancreatic cancer about 15 years ago, but later died after surgery to release adhesions (places where his internal organs were growing together) caused by the radiation treatment that successfully treated his cancer.

When I was diagnosed with follicular lymphoma (a form of blood cancer) in 2020, I was convinced I now knew when my expiration date was; so much of the media information around cancer - and particularly around fundraising for various cancer organizations - highlights that if you don’t donate, people will die simply because they have cancer. Even fiction highlights the idea that cancer is a death sentence, although less than it did when I was younger; a short story by Ben Bova, a science fiction author, “The System”, published in 1968, predicts a time when everything but cancer will be cured, but when a cure is found, it’s shelved, because society needs a source of death to renew the population. This type of fatalism is pervasive in portrayals of cancer, even today; the ad for a well-known cancer research foundation notes that 1 in 5 children diagnosed with cancer will not survive, rather than celebrating that 4 in 5 such children DO survive because of the efforts of this organization and others like it.

Even talking to my oncologist and doing my own research, seeing how effective cancer treatment can be, I was convinced I would be a member of the small group that was resistant to treatment. I was pleasantly surprised to find that I wasn’t. Even my oncologist was surprised at how well I responded to the standard treatment; when my post-treatment PET scan showed a complete response to treatment, he actually said that he hadn’t expected treatment to work, or at least not to work that well. At the time, I didn’t really appreciate the comment; actually, I’m still not sure I appreciate the surprise in his voice. Regardless, I’ll take it!

Most people, unless they have a chronic or degenerative illness, don’t think about their potential expiration date. But being diagnosed with such an illness — with cancer, or multiple sclerosis, or diabetes, or any one of a long list of such diseases — makes you think about such things. It makes you reconsider plans — especially long-term plans. With something like follicular lymphoma, which is known to recur, sometimes years or even decades after successful treatment, long-term plans are particularly difficult; trips, large purchases, new pets, etc., all come with the concern that the cancer might come back, and concerns about paying for something you may never use. It’s true, that is an issue that affects everyone, and yet, it seems more of an issue now than it did before cancer — before there was another ticking clock on my expiration date.

I am far more aware of my expiration date than I was before diagnosis 5 years ago, and yet, I go back to something else my oncologist said: that he didn’t treat me to have me hide in my house, but so I could go live my life. That’s what I’m trying to do now: live my life. Be aware that life ends, certainly, but don’t let it stop you from living your life.

Cancer, once considered a death sentence, has seen significant advancements in treatment, improving survival rates and quality of life. Despite pervasive fatalistic portrayals in media and fundraising, many patients experience positive outcomes. The author shares a personal journey with follicular lymphoma, highlighting the unexpected success of treatment and the psychological impact of living with a chronic illness. The narrative emphasizes the importance of living life fully despite the awareness of mortality, encouraging a shift from fear to embracing life post-diagnosis.

After her follicular lymphoma diagnosis, Karen Cohn reflects on how cancer reshaped her view of mortality and her choice to keep living fully.

Facing Mortality After Cancer, and Choosing to Live Fully

What is normality? In particular, what is normality after a cancer diagnosis? After cancer treatment? When I finished treatment for follicular lymphoma (a form of blood cancer) not quite five years ago, people asked me how it felt to return to normal. But it wasn’t normal - nothing was normal, especially as the world was still mid-pandemic. Even now, things haven’t returned to the normal I had before.

So what is normal? Most people can trust that once they recover from an illness or injury, it won’t come back, but that’s not the way cancer works - and particularly for cancers like follicular lymphoma, which is considered treatable, but chronic and incurable. I will never be able to go back to a time when I could trust my body to recover from disease or damage; as things stand now, there is no cure. Then, too, treatment itself is a risk factor for developing other cancers. This could come back at any time, and while the chances are lower now that I’ve passed the two-year mark, that’s no guarantee. I know someone whose follicular lymphoma returned after 18 years of remission.

Then, too, between the immune depression caused by cancer treatment, which was exacerbated by the type of cancer (follicular lymphoma is specific to a type of white blood cells known as B-cells - commonly known for producing antibodies) and Covid, for which vaccinations had just been released when I was making my decision, I decided that returning to teaching middle school wasn’t in my best interest, and I retired two years before I originally planned to. My life will never be the same as it was before I was diagnosed, placed on medical leave, and retired early; the decision affected my retirement income permanently, because I have two fewer years of raises and of service credit, which reduced my pension. After a career spent teaching, mostly middle school special education students (26 of 28 years), it ended quietly; because of Covid restrictions, the district canceled the traditional retirees’ breakfast, and while I did attend a retirement celebration at my school, after a year spent either on medical leave or teaching remotely, it just wasn’t the same.

I lost friends following my diagnosis, friends who simply didn’t know how to respond, so they quietly vanished, mostly never to return. Between retirement and pandemic restrictions, I’ve had difficulty finding new friends to replace them, so my social circle has retracted somewhat. Recently, I’ve tried to find new activities, but it’s harder than it was when I was younger; I don’t have kids to meet people through, and while there are plenty of retired people in my neighborhood, most of them are 10 or more years older than I am, and mostly they don’t share my interests.

Some things didn’t change; I still train in TaeKwon-Do, a Korean martial art, and after a 15-year gap in my testing schedule, I successfully tested for my VI Degree Black Belt. I still walk a lot (although I did injure myself testing; at 58, keeping up with my friend who was also testing, and who was 37, was really, really hard!), so I don’t walk as much as I used to, and I haven’t been hiking. I still read a lot. I do a lot of crocheting. But I miss the life I had, and I regret the reason I retired early. So I have a new normal, but I’ll never know how it compares to the normal I would have had without cancer.

A cancer diagnosis, particularly with chronic conditions like follicular lymphoma, fundamentally alters one's perception of normality. Post-treatment life is marked by the persistent threat of recurrence and the long-term effects of treatment, such as immune suppression. The pandemic further complicated the return to normalcy, influencing career decisions and social interactions. Despite maintaining some pre-diagnosis activities, the author acknowledges a shift in lifestyle and social dynamics. The narrative underscores the challenge of adapting to a "new normal" while grappling with the loss of the life once known.

After treatment for follicular lymphoma, I reflect on how cancer, retirement, and loss reshaped my sense of normal and what life looks like now.


My New Normal After Follicular Lymphoma

There are over two hundred types of cancer, but even so, many people — especially those fortunate enough to have no personal experience with it — assume that all cancers, all cancer treatments, and all cancer outcomes are the same.

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. It’s currently in remission, but it could come back any time; it’s been five years since I finished treatment, so the risk is lower than it was, but still higher than the general population.

A lot of people don’t really understand that; in a recent conversation, someone told me that she hoped soon I could say I’d had cancer but no longer have cancer. The line between have and had is pretty thin; even with cancers considered curable, the risk of relapse, or of developing another kind of cancer, is higher than in the general population. It’s something I wish more people understood.

Preconceptions lead to assumptions, and they are often based on how cancer is presented by various media — video ads showing cancer patients with no hair, hooked up to tubes and wires, looking pale and tired, and then suddenly healthy, with no mention of the process in between — are a common one.

Sometimes treatment is a lot easier to take than the way it’s portrayed in such videos (mine was, thankfully), and sometimes it’s a lot worse. Then, too, you don’t just wake up one day suddenly healthy because treatment is over. For many medications — and especially cancer treatments — the adage that “the dosage makes the poison” is true. I remember one day in treatment when a nurse asked how I was doing, and I said I was waiting for her to pump poison into me to kill the cancerous cells; she just looked at me.

I appreciate the wishes of people who hope that my experience with cancer will remain completely in the past; it’s what I wish myself. I wish more people understood that many forms of cancer recur. I wish more people understood that cancer treatments are themselves a risk factor for future cancers. Cancer treatments work by targeting cancerous cells in one way or another, to kill mutated cells that escaped the body’s immune system, but such treatments often cause peripheral damage to cells near the cancerous cells, or changes to the person’s immune system that leave the person at greater risk for developing cancer, the same kind or another.

I also wish that more people understood that not all cancer treatments are the same. The primary forms of treatment — chemotherapy, immunotherapy, radiation, and surgery — are not used in all treatments, and even within a single type of cancer, not every person receives the same treatment. It depends on the type of cancer, the grade (how fast it grows), and the stage (how much it’s spread). 

It also depends on what is available, what the oncologist decides will be most effective, and what insurance will cover. A lot of people — even people who’ve had other kinds of cancer — start by asking what type of surgery I had, and seem surprised that I haven’t had any. Others are really surprised my hair didn’t fall out — one even accused me of making up my diagnosis for attention, because “everyone knows” that chemotherapy makes your hair fall out (it doesn’t).

Cancer is a complex disease with over 200 types, each with unique treatments and outcomes. Misconceptions persist, often fueled by media portrayals, leading to assumptions about uniformity in cancer experiences. Follicular lymphoma, a chronic but treatable blood cancer, exemplifies the nuanced nature of cancer, where remission doesn't equate to a cure. Treatments vary widely, influenced by cancer type, stage, and available resources, and can themselves pose risks for future cancers. Understanding these complexities is crucial for accurate perceptions and support for those affected.


Living with follicular lymphoma, I’ve learned many assumptions about cancer, remission and treatment side effects don’t reflect the reality I face.

Karen Cohn

Moving Forward After Follicular Lymphoma With a New Companion

Facing Mortality After Cancer, and Choosing to Live Fully

My New Normal After Follicular Lymphoma

Challenging Assumptions About Cancer and Its Treatments

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