Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.

Kelly Irvin

Kelly Irvin was diagnosed with stage 4 ovarian cancer in January 2016. Catch up on all of 

It’s National Cancer Survivor Month. Surviving this disease is a wonderful reason to celebrate. Nevertheless, I’ve had a love-hate relationship with the word “survivor” since I learned in 2016 that I would be in treatment for my stage 4 ovarian cancer for the rest of my life. I equated survive with cured. A survivor was someone who had the disease, went through treatment, was cured, and able to leave it behind. Turns out the word has a more encompassing definition. Dictionary.com defines it as one who is still alive after an event in which others have died. Also, one who copes well with difficulties in life.

I certainly fit the first definition, and I try to embrace the second one. Just this morning I received the results of my latest three-month CT scan. Stable. Sweet relief. I actually waited until my appointment with my oncologist to get the results. Normally, I would’ve called the office a day or two after the scan and bugged the nurses to look it up for me. It might not seem like much, but I used to agonize over whether I faced a recurrence every minute until the doctor shared the results. Waiting is a sign I’ve learned to cope with the uncertainty. I didn’t spend the weekend worrying and spinning wild, endless scenarios for what would come next if the scan showed progression. I went about life, spending time with family, going to church, eating good food and reading good books. That’s more than surviving. It’s flourishing.

It takes hard work to flourish in the face of a cancer life sentence. Living with metastatic cancer is a little like being a contestant in that TV show “Survivor.” You learn to be tough, to gut it out, to deal with pain, to bear sleepless nights, to be hungry, (fasting really sucks, okay?), to work at being physically fit, and to psych yourself out to get through another day of treatment in the infusion room. Sometimes you have to take an unfamiliar path, not knowing where it will lead. A new treatment, a new oncologist, a clinical trial — all can result in feelings of hopelessness being lost in the jungle (or the desert or the island!). Some get to take home the big prize — No Evidence of Disease. Others find themselves sticking around to seek new ways to defeat those fearsome cancer cells that design endlessly new Trojan horses to invade their bodies.

Being a cancer survivor for nine and a half years has taught me to live in the moment, to make those moments count. To get my priorities straight and keep them that way. I’ve written more than 30 novels since my diagnosis. I’m living my dream of being a full-time author. I’ve celebrated nine wedding anniversaries and played with three new grandbabies. The moments of joy — big and small — have been countless. A juicy hamburger, a funny movie, a toddler’s giggle, a favorite song, a dad joke, a lovely nap, sunflowers, chimes tinkling in the wind, a chocolate-chip cookie still warm from the oven, a grandchild’s hug — that’s the good stuff.

Less and less often come those moments of worry and anxiety about the future, but they still come. I may need to have a quick pity party, but I try not to wallow in it. I do things like look at photos of the grandkids, write a list of my blessings, text my daughter, or revisit favorite scripture. Then I get up, pull up my big girl panties, and get on with the next fun thing God has in store for me. It took far too long for me to see how He was working in my life and how I could use these trials to help others — especially in my writing. When the concept finally penetrated my thick head, I realized no matter what comes, I have work to do. I have a reason for being here. That’s something to celebrate.

My hope is I’m using my time as a survivor to the best of my ability on behalf of all the women with ovarian cancer who didn’t get this opportunity. I’ll never take this gift of being a survivor for granted. Happy National Cancer Survivor Month!

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Articles

Living with stage 4 ovarian cancer redefines the concept of "survivor," emphasizing resilience and coping with ongoing treatment. The author shares personal experiences of embracing life despite the uncertainty of metastatic cancer, highlighting the importance of living in the moment and finding joy in everyday experiences. The journey involves adapting to new treatments and challenges, akin to a contestant on "Survivor." The narrative underscores the significance of using one's experiences to help others and cherishing the opportunity to live fully, celebrating life and the moments that matter.

Being a cancer survivor for nine and a half years has taught me to live in the moment, to make those moments count. 

Being a Cancer Survivor is a Gift I Never Take for Granted

I’ve been trying to figure out how to write this blog without being an ungrateful complainer and at the same time finding a graceful way to handle an embarrassing topic. I finally decided as a stage 4 ovarian cancer patient with nine years-plus of continuous treatment under my belt, I have more than enough experience to express my opinion. So here goes:

Cancer drug researchers need to spend more time analyzing how to reduce side effects of new (and old for that matter) cancer treatments. Currently, the only way to deal with side effects is to reduce the dose, which most likely will affect its efficacy, or stop treatment all together. Many of the new targeted drugs are being developed for long-term use to hold a cancer at bay, rather than cure it. Like a chronic disease. Except the side effects have a tremendous impact on quality of life not often seen in other chronic disease treatments.

My clinical trial drug has kept me stable and/or NED for two and half years. That’s amazing, fantastic and an incredible blessing. It also means I’ve been dealing with the side effects including gastrointestinal distress — okay, I’ll just blurt it out, diarrhea — for two and a half years. I’m thrilled with the efficacy of this drug, but I routinely spend my time at appointments with my oncologist discussing how to deal with a side effect that can hit me anywhere and anytime with ugly, nasty consequences.

It means I carry around an emergency bag with disposable underwear, a change of clothes, Imodium, Lomotil and a gripper (I have limited mobility and can’t bend over) everywhere I go. The bag also includes a gas reliever and an anti-acid for the acid reflux that often occurs as well. I’ve made a mad dash for a restroom in a Dick’s Sporting Goods, in a church while attending my grandson’s preschool Christmas program and while on vacation visiting family for the 4th of July. In that instance, I raced into my nephew’s house (which has only one bathroom) in the midst of a fireworks display and stayed there for two hours.

Multiply that by 910 days and you get the picture. I plan travel (especially air flight) and social events around when I expect to have the worst episodes. I’ve completely changed my diet to a low-fiber-no fiber diet, which means no raw fruits, raw vegetables, no salads, no whole grains or many of the other foods that are so nutritious. Some people might like eating this way. I’m definitely not one of them.

Aside from the nutritional deficits, there’s also the potential for dehydration, anemia and other health impacts of chronic diarrhea.

The worst of it is this trial has been discontinued. I’m the only patient left in it because not enough women with ovarian cancer have the biomarker that makes it so effective for me. My travails aren’t going to help other women. I was eager and willing to participate in phase 1 first-in-human trials, because they might not only save me, but help other women with this rotten, no-good disease.

I feel ridiculously ungrateful complaining when so many women die from ovarian cancer every year. What’s a little discomfort in comparison? I should be blissfully content. Yet, I simply can’t manage it. Where do we draw the line when it comes to quality of life? Do researchers care? They keep track of what’s known as AE’s or adverse events. After hearing my woes, one of the oncologists at the clinic suggested they should have another category, still AE, but annoying events.

Cute, but it’s more than annoying. Not being able to leave the house for fear of an explosive episode of diarrhea is not fun or funny. It affects me emotionally as well as physically. It’s demoralizing. It becomes a sort of prison built of fear. If my stomach starts to make strange noises, my mind goes into overdrive scouting the nearest bathroom, estimating how long it will take me to get there, and mentally checking if I have all the necessary supplies. Sometimes it’s simply easier to stay home and not risk it.

I will keep taking this drug as long as it keeps doing its job. By the same token, I urge researchers to delve into why particular side effects occur in cancer drugs under development and endeavor to find ways to mitigate them that doesn’t impact their efficacy.

Is that too much to ask? Maybe. But nothing will change if we don’t speak up. Even when it’s embarrassing.

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subscribe to CURE®’s newsletters here.

The narrative highlights the significant impact of side effects from cancer treatments on patients' quality of life, particularly for those on long-term therapies. Despite the efficacy of these treatments in managing cancer, the adverse effects, such as chronic diarrhea, can be debilitating and emotionally taxing. The author emphasizes the need for researchers to prioritize understanding and mitigating these side effects without compromising treatment efficacy. The personal account underscores the importance of addressing quality of life issues in cancer care, urging the medical community to consider patients' holistic well-being.

I urge researchers to look into why side effects occur in cancer drugs and to find ways to mitigate them that doesn’t impact their efficacy.

Ovarian Cancer Treatment Side Effects Make for a Difficult Balancing Act

Kelly Irvin was diagnosed with stage 4 ovarian cancer in January 2016. Catch up on all of 

I’m a patient with ovarian cancer who’s been in treatment continuously for nine years, so it’s hard for me to spotlight one special nurse during National Nurse Appreciation Week. I almost feel as if I should do a top ten article. But one nurse whose support in the infusion room has impacted me the most is Marcia (Brice) Grubbs. Marcia was my nurse for my first in-clinic chemo treatment, later moved on to a new job, and then reappeared for a few years at my latest clinic. I’ll never forget her.

Marcia is a skillful, knowledgeable, smart nurse. But what makes her special goes far beyond her nursing skills. It’s her people skills that make the difference. I wish I could offer a recording of her boisterous laugh, the way she yelled out a greeting when I walked into the infusion room, and her funny stories. She made me feel welcome as a person, not just a patient. The first time she treated me, she talked me through what was happening, gave me tips for how to deal with the pain of accessing my port, answered my questions, and made me smile—something I didn’t think was possible.

I don’t think medical HR folks who do the hiring really understand what I’m talking about. Marcia remembered my name by my second treatment. She said her ability with names came from her waitressing days when it meant better tips. She was loud and funny and a lot like a favorite waitress you’d want to leave a big tip.

But she also advocated for her patients. She’s gone to bat for me with a scheduler who didn’t care that I preferred to see my oncologist and not a nurse practitioner. She listened to me when I vented my frustrations with a clinic that had too many patients, where we waited far too long for our turns in the labs and the infusion room, and where we became birth dates and not names.

Don’t get me wrong. I know cancer treatment is a serious business. Making sure patients receive the correct medications, dosages, that their side effects are monitored throughout their treatment, and the mechanics of performing these measures are critical functions of a nurse. Nurses are people. They’re not all extroverts. I don’t expect them to be. But when a nurse makes me laugh while a poisonous chemo drug is entering my body through a port attached to my superior vena cava vein near my heart, I tend to connect with her.

To really understand, imagine what the infusion room was like when Marcia moved on to another job. It was professional, but quiet and impersonal and lonely. Nurses were too busy to chat or joke or welcome a patient. They rarely smiled unless it was when talking among themselves behind the long counter that separated them from the patients.

Fast-forward several years later to my first visit to a clinical trial clinic which has fewer than 25 chairs instead of 99. Only five nurses and one of them was Marcia. She was studying to be a nurse practitioner, and she was even more knowledgeable. Marcia remembered me. She wore a variety of bright sneakers and occasionally did a cha-cha-cha in them. Her laughter was contagious. Patients smiled. The other nurses smiled. She shared with me about her wedding and her honeymoon—with photos. I told her about my travels, my grandkids, and the novels I was writing. She always brought me a pillow and a blanket, talked through issues with my clinical trial, and helped me get answers when I needed them. I felt at home.

Despite her busy schedule as a nurse, wife, mother, and student, Marcia made time to read a manuscript of one of my novels and correct any medical errors in a story about an oncologist and her sister who’s diagnosed with ovarian cancer. Marcia’s input was invaluable.

One day I came in for treatment, and Marcia was gone again, for reasons I won’t go into here. Suffice it to say I wasn’t the only one who shed tears. The nurses at the clinic now are lovely, kind people. They’re serious, focused, professional, and knowledgeable. All of which I deeply appreciate. I just wish one of them would do a cha-cha-cha in bright red Converse sneakers and chortle once in a while.

A patient's nine-year journey with ovarian cancer highlights the profound impact of a nurse named Marcia Grubbs. Marcia's exceptional people skills, humor, and advocacy for patients set her apart, making her more than just a skilled nurse. Her ability to connect with patients, remember personal details, and bring joy to the infusion room created a welcoming environment. Despite the serious nature of cancer treatment, Marcia's presence made a significant difference in the patient's experience, demonstrating the importance of empathy and personal connection in healthcare.

She wore a variety of bright sneakers and occasionally did a cha-cha-cha in them. Her laughter was contagious. Patients smiled. The other nurses smiled.

Nurse’s Big Personality Makes Cancer Treatment More Bearable.

As I enter my ninth year of continuous treatment for stage 4 ovarian cancer, I find myself reflecting on what I have learned about myself and how it has changed the way that I face life’s challenges. It’s taken almost all of those nine years for me to learn the hardest lesson: it does no good to dwell on what cancer has taken from me. Rather, for my sake and the sake of my loved ones, I have to focus what it has given me.

I still have bouts of sadness over what the disease took from me. It landed a double whammy sucker punch by taking not only my health, but my mobility. After two years of painful false starts, a neurologist finally diagnosed my inability to walk normally as paraneoplastic syndrome. In layman’s terms, that means my immune system went crazy trying to fight the cancer and attacked my central nervous system.

For a person who loved to hike; do aerobic exercises with Billy Blanks, Gilead, Denise Austin and Jane Fonda every day (I know that shows my age); zipline; play in the ocean and walk in my neighborhood every day, this was cataclysmic. Maybe worse than the cancer itself.

However, this journey has taught me — finally — to stop focusing on what I can’t do and focus on what I can do. I can work out doing aerobic chair exercises on YouTube every day with Paul Eugene, a great-grandfather who is older than I am, enthusiastic, full of energy and with his “woo-hoos,” I can’t help but smile. I can spend 30 minutes on the stationary bike every day. Exercise makes me feel better now, just as it did before, even if the form is different.

I can’t carry my two-year-old grandson around on my hip and run after him in a game of hide-and-seek, but I can give him rides on my rollator, play “vrrrom-vrrrom” with his cars, go with him to story hour at the library and share a bowl of his favorite mandarin oranges with him.

I can’t pitch baseballs, swing, play badminton or jump on the trampoline with my older grandkids. Despite this, cancer doesn’t keep me from attending my granddaughter’s dance recitals or grandsons’ baseball games. It doesn’t keep me from reading to them or buying them books or watching Christmas movies with them or playing uno, go fish and a dozen other games that the five-year-old loves.

I know this isn’t how my husband intended for us to spend his retirement years. I always imagined we would travel to faraway places. I had a huge bucket list. Now, that list is much simpler and easier. But cancer doesn’t keep us from enjoying the wonderful meals he cooks, the sourdough bread he makes or from binge watching our favorite television shows together. It doesn’t keep us from watching the birds on the feeders that he fills in both the front and backyard. Or delighting in the violets, amaryllis and Christmas cactus — and many other plants — blooming and growing in the kitchen bay window and on the deck thanks to his green thumb. What it does is make me appreciate these simple pleasures more.

Cancer also gave me the gift of leaving my day job to write full-time. As a result, I’ve spent the last nine years writing more than 20 books and a dozen novellas. It allowed me to fulfill a life-long dream of being a published author. Sure, it might have happened in another way, but this way allowed me to incorporate my struggles with my faith, learning patience, learning to trust God and learning what’s important, into my writing. It even served as research for a novel that explores all these issues through the eyes of an oncologist when her sister is diagnosed with ovarian cancer.

Cancer gave me the gift of seeing time as an incredibly valuable commodity. Having a life-threatening disease reminds me daily to make the most of whatever time I have. So many folks go through life assuming they have tomorrow or next week or next year to take that bucket-list trip, to write that book, to learn that language, to make amends, to say, “I love you.” I wake up every day knowing my time will be shorter than I expected or wanted. The same is true for everyone — they just rarely seem to realize it.

So, I ask myself at the end of each day, did I do something worth doing today? Did I use my time well? I don’t think I’ll ever be able to say, “I’m thankful for having learned these lessons,”—not this way. It still feels like a terrible hard truth most days. But at least I know what the important questions are. It seems to me they are questions we should all be asking ourselves.

Living with stage 4 ovarian cancer for nine years has taught the author to focus on what cancer has given rather than taken. Despite losing mobility due to paraneoplastic syndrome, she finds joy in modified activities and cherishes simple pleasures with family. Cancer prompted her to pursue a writing career, fulfilling a lifelong dream. It also instilled a deep appreciation for time, urging her to make the most of each day. While the lessons are hard, they emphasize the importance of valuing time and asking meaningful questions.

Having a life-threatening disease reminds me daily to make the most of whatever time I have.

Kelly Irvin

Being a Cancer Survivor is a Gift I Never Take for Granted

Ovarian Cancer Treatment Side Effects Make for a Difficult Balancing Act

Nurse’s Big Personality Makes Cancer Treatment More Bearable.

Ovarian Cancer Teaches Hard Life Lessons

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