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 

As I dressed for church one Sunday morning in late August, I contemplated the prompt from CURE editors regarding Stand Up to Cancer Day on Sept. 12. Write about how you stand up to cancer, they suggested. Mulling this topic, I put on a spiffy outfit, did my makeup, put my hair up in a bun, filled my travel bottle with tea, and made sure my small group study book was in my rollator.

I almost made it to the door when stomach distress hit. I 

 make it to the bathroom. That’s when I knew what I would write about my efforts to stand up to cancer while living with stage 4 ovarian cancer. This isn’t a fuzzy, feel-good marketing campaign for those of us living with this disease. It’s an in-the-trenches, no-holds-barred, pull-up-your-big-girl-panties, day-to-day commitment to not letting cancer suck all the joy from our lives.

Diarrhea is a side effect of a clinical trial drug that is keeping my cancer at bay. I’ve been taking it—and living with diarrhea—for two years and eight months. My husband and I joke we should buy stock in certain anti-diarrheal medication. That’s okay, because in July my CT scan revealed I’ve reached a “complete response." My oncologist informed me I was “making history.” Take that, cancer.

Standing up to cancer means having the guts to enter into this phase I first-in-humans clinical trial. It means trusting my oncologist to steer me through the protocol that comes with these studies. It means taking it on faith that this study will help others as well—even when the study of this particular drug combination is halted before its projected completion date. It continues to help me and my oncologist believes another company will pick up the baton and carry it across the finish line. I’m thankful for his wisdom and his optimism. His support helps me to stand up to cancer every day.

Blessings are plentiful when you’ve been living with cancer for nine years. For example, I didn’t get to attend church in person that morning, but my church streams services on YouTube and Facebook. So I attended from the comfort of my home office, just steps away from a bathroom if I needed it. I’m so thankful for modern technology.

Because my cancer came with a loss of mobility that included all the symptoms of primary lateral sclerosis (PLS), a more benign form of ALS, my neurologist and the local ALS Association chapter arranged for me to receive the gift of a loaner portable power wheelchair from the Gleason Foundation. This loan gives me the freedom to attend events or travel to locations where a lot of walking might be required. Freedom is such an incredible gift.

Blessings also include the Phase I Clinical Trial Clinic only 30 minutes from my home, the staff there, my oncologist who founded a string of these clinics, and the ALS Clinic staff who have been taking care of me for the last ten years. Their contributions to my quality of life are far greater and brighter and lovelier than any low-down-and-dirty ugliness cancer can throw at me.

Standing up to cancer means appreciating and enjoying the time I spend with my husband, my two grown kids, and my four grandchildren. I love eating snow cones with my grandkids. I love tie dying t-shirts, playing Monopoly, reading books, watching movies, and pretending to run monster trucks through car washes with my grandkids. Joy, joy, joy. That’s how I stand up to cancer.

Cancer can’t take away joy unless I let it. That’s what I’ve learned. No matter how long or how short my time is, I get to decide how I spend that time. I get to decide what’s important. Not cancer. Me. Take that, cancer!

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

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Articles

Living with stage 4 ovarian cancer, the author shares her journey of resilience and determination. Despite the challenges, including side effects from a clinical trial drug, she finds strength in her support system, modern technology, and the blessings of family. Her experience in a first-in-humans clinical trial highlights the importance of trust in medical professionals and the potential for future advancements. Emphasizing the power of joy and personal choice, she stands up to cancer by focusing on meaningful moments and refusing to let the disease define her life.

Standing up to cancer means focusing on the blessings, reveling in good news, and living life to its fullest every day.

Standing Up to Cancer Means Not Letting It Steal My Joy

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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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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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.

Kelly Irvin

Standing Up to Cancer Means Not Letting It Steal My Joy

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.

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