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

A student physical therapist who hasn’t even taken her boards yet was the one to give me permission to open my mouth and admit that cancer treatment sucks — even when it’s keeping me alive past the expiration date stamped on my forehead by stage 4 ovarian cancer.

I was explaining to her that severe acid reflux followed by vomiting caused by my cancer treatment had made it hard for me to keep up with my home PT program. She nodded and said in that beautifully succinct way that millennials have, “That sucks. Chemo sucks.”

It does, but I’ve tried to avoid voicing those sentiments because my cancer treatment is working. I’m blessed to be alive. That’s the goal for all cancer patients, isn’t it? We’re to be thrilled and happy. 

 What’s a bald spot on the back of my head, high blood pressure, fatigue, nausea, acid reflux, brittle nails, border-line anemia, low white blood counts, and loss of taste compared to the alternative? Did I mention I’m alive?

My oncologist is employing a non-standard-of-care regimen of a low dose chemo drug coupled with a tumor-starving drug that on its own was no longer able to stave off progression. Until a few months ago, another chemo drug was part of the mix as well, but I had an allergic reaction and it had to be discontinued. Still, the remaining drugs continue to thwart progression. So I hang out in the infusion room every third, sixth, and seventh week in perpetuity, or until disease progression.

When my gynecological-oncology surgeon heard about this plan, he was vocal in his disapproval. “If you go to any other clinic in the country, they’ll tell you it’s crazy.”

That was eighteen months ago. This is no evidence of disease’s (NED) longest stay at the Irvin residence in five years. That’s the prize I’ve received every three months after a CT scan — so far. My tumor markers remain nestled in the teens.

Therefore I feel guilty for wondering as I trudge through the house with a barf bag in my rollator’s basket if it’s worth it. When there’s more hair on the floor than on my head. As I eat prunes, peaches, pears, oatmeal, and then resort to a constipation-busting med. I smile and applaud my husband’s cooking even though we both know I can’t taste his latest dish.

My oncologist works hard to alleviate the symptoms where possible. Two kinds of hypertension meds. Anti-nausea meds. Anti-reflux meds. Unfortunately, these lead to more constipation. So then there’s constipation meds if fiber-filled foods don’t get the job done. That’s the thing. Treating the side effects often leads to new side effects. My medicine cabinet is more like a pantry.

I know I’m singing to a choir of cancer patients. We all experience the side effects. But I read a book recently called “Being Mortal: Medicine and What Matters in the End” by Dr. Atul Gawande, a surgeon and son of a cancer patient. He points out that modern medicine uses whatever means is necessary for a patient to survive. Survival is the goal. Gawande suggests that it would be helpful as we grin and bear the side effects to ask ourselves these questions: What are you willing to give up to survive? What do you not want to give up? What does a good day look like for you? Then work toward it. No, he’s not advocating giving up treatment. Only ascertaining how important quality of life is and how you define it.

So I answered these questions. I won’t give up writing fiction. I won’t give up visiting my grandkids and playing with them (when the pandemic allows). I want to be clear-headed so I can keep reading all the wonderful books in the world. I want to be able to go to church, bible study, and Sunday school in person. What does a good day look like for me? I drink coffee, eat crunchy peanut butter and toast for breakfast, then go to my home office, write novels, poems, and short stories. Deadlines are met. I exercise for an hour. I FaceTime with my daughter and grandkids. My husband and I enjoy supper together. Then I spend the evening reading or watching “Resident Alien” and laughing with him.

I can do those things if I continue this treatment regimen — for as long as it works. Not all cancer patients get to say that. Their pain is too great, and the pain meds make them fuzzy-headed and lethargic. They’re unable to eat because of bowel blockages, or they experience nausea because of the build-up of ascites in their stomachs. They’re too weak to walk around the block, let alone exercise or travel. They’re unable to participate in social gatherings because of their compromised immune systems. And a litany of other ailments that steal those good days from them.

It makes sense to take stock of our treatment — its physical, emotional, and spiritual cost, and what we want out of life going forward. It’s OK to say, “Cancer treatment sucks and I hate it even when the big prize, our buddy NED, has taken up residence in our bodies.” We know Mr. No-Evidence-of-Disease can abandon us at the drop of a hat — or a cancer cell. So it’s OK to say, “I’m willing to do 

.” This gives us a sense of control over our destiny. We all need that. We deserve it.

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It makes sense to take stock of cancer treatment — its physical, emotional, and spiritual cost, and what people want out of life going forward. Here, a patient with cancer writes how It’s OK to say, “Cancer treatment sucks and I hate it, even when the big prize, our buddy NED, has taken up residence in our bodies.”

Cancer Treatment Sucks, Even When it Works

I’ve been thinking about the fifth anniversary of my stage 4 ovarian cancer diagnosis forever, wondering how would I mark the occasion? Dancing in the street? Champagne? A special dinner? What should I write about it?

Five years ago, I had my port installed and experienced my first chemotherapy late at night on January 19th, 2016, a process that lingered into January 20th—my 58th birthday. It was earth-shattering and I was scared spitless that I wouldn’t survive. Yet, here I am, still kicking. So why couldn’t I write a celebratory blog to commemorate the occasion? I pulled up the blank document on my computer screen and wrote not a word. I kept coming back to it. 

. But I still am determined to dig down to the root cause of this paralysis.

Bottom line? I don’t feel like celebrating and I feel guilty about that. The five-year survival rate for stage 4 ovarian cancer is abysmal. Depending on what source you use, it can go as low as 17%. I’m blessed beyond measure to still be here. So many women don’t get this gift. I’ve worked hard to use my time well, having written and published five books and several novellas during those years. I’ve been here to see the birth of my third grandchild and watch all three as they grow and change. I’ve spent time with my husband and my children. I 

Ultimately, I’ve realized that the challenge has been the COVID-19 pandemic. I’m sure this is true for most cancer patients. I’m in permanent active treatment with low dose chemotherapy every fifth and sixth week. My immune system is wrecked after five years of treatment, so I’ve been housebound, except for doctors’ appointments, for ten months. I didn’t realize how this has worn on my heart and soul until vaccines started to become available. I’m desperate to be vaccinated because it’s the first step to getting my life back. I’ve been frustrated and angry at the slow roll-out of the vaccines. At how difficult it’s been to sign up. I’ve ranted on social media about it— but that’s not me. I’m desperate to be able to fly to Virginia to see my grandkids, to go to church, Sunday school and Bible study. To browse in a bookstore. To shop for birthday gifts for my husband. I want to soak up every possible experience in the days, weeks, months and years that remain in my life. COVID-19 is getting in my way.

It’s okay for me to not feel like celebrating in a world that is upside down and backwards. Yes, I’m grateful and blessed, but I’m not bullet-proof. I’m human. I don’t have to feel guilty, none of us do. So, how do we get our joy back? For me, it’s a matter of admitting my heart is sore and my soul is weary and asking for help. My oncology clinic provides a social worker and virtual support groups for patients in active treatment. I’m signed up for one. My neurology clinic includes a psychiatrist in the provider rotation. We had a good, honest conversation this week about depression. She offered options for medical intervention. We made a plan. Just having that plan helps with the feeling that the pandemic is messing with my life, cheating me out of irreplaceable memory-making with loved ones, and holding all of us hostage so we can’t live life to the fullest.

That’s really the crux of my frustration—my anger, really—that cancer robs us of so much and now COVID-19 is stealing more of our precious time. We know better than most people how finite time is so we’re more inclined to treasure it. I know there are folks in this boat with me, so I urge you to talk to someone you trust. Don’t be afraid to ask for help. Don’t feel you have to put on a happy face. Life is too short for that. Advocate for yourself, including seeking the vaccine as soon as possible. Wear a mask. Follow COVID-19 protocols so all of us can get our lives back. Then we can dance in the street, attend church, browse in bookstores and fly across the country to see our loved ones.

We’re survivors. We’re surviving cancer. We can and will survive COVID-19.

It’s okay for me to not feel like celebrating my 5-year cancerversary in a world that is upside down and backward because of COVID-19. Yes, I’m grateful and blessed, but I’m not bullet-proof. I’m human. I don’t have to feel guilty. None of us do.

Celebrating A ‘Cancerversary’ In A COVID-19 World

Cancer has taught me many lessons, but one that stands out during this pandemic is how important time is.

People tend to go through life thinking they have all the time in the world. They’ll have time to spend with their children or grandchildren later when they’re done with their careers. They’ll take that big trip to Europe when they retire. They’ll write a book . . . 

. There’ll be time enough. When you have cancer, you don’t think that way.

I have stage 4 ovarian cancer. When I was diagnosed in January of 2016, statistics indicated I had a 19 percent chance of surviving five years. That’s why I so deeply resent the COVID-19 pandemic. It’s stealing the time I have left to fully live.

I’ve been receiving chemotherapy on and off—more on than off—for almost five years. My immune system is shot. When the pandemic started to unfold, I was in Virginia visiting my grandchildren. I fell and fractured my hip. Instead of spending time with family, I spent a week in the hospital and another in rehab unable to have my family visit because of the virus. Then I came home to South Texas. That was six months ago. I haven’t been in a store or restaurant in six months. The only place I go is to my doctor’s appointments.

I’ve never gone more than six months without visiting those grandkids in Virginia. As long as the pandemic rages, the closest I’ll get to them is FaceTime. It’s too risky to fly. Even if I could, I can’t visit kids who are attending public school. My church is returning to in-church services this Sunday, but I won’t be able to go. I miss my church family. I miss Sunday school. I miss attending bible study in person.

This is time I can’t get back. I don’t know how much I have, but it’s considerably less than it was before I had cancer complicated by a motor neuron disorder. Since my diagnosis I’ve tried hard to make my time count. I’ve written and published nine novels and several novellas. I work hard every day. I ask myself at the end of each day, what worthwhile task have I accomplished, cause I don’t have time to waste.

That’s why it’s hard to be sympathetic toward people who complain about having to wear a mask or not being able to go into a bar for a drink. I’m staying home. I’m wearing a mask when I do go out. I wash my hands. I social distance. I can do my best to be safe, but I can’t control what the other person does. This isn’t about politics. It’s about the impact we have on the health and wellbeing of our fellow human beings.

Until this pandemic abates, cancer patients like me, and all those folks with chronic health conditions, are prisoners in our homes. We’re losing out on time spent with our loved ones in other parts of the country. Time we can ill afford to lose. We’re not able to travel and enjoy life while we’re healthy enough to do it because some people don’t want to take simple steps to prevent the spread of COVID-19.

For those without cancer, please consider setting aside your differences. Make this about doing the right thing so we can end the pandemic. Then we can all enjoy the richness of a life where we have the freedom to hug our loved ones, celebrate milestones with parties, attend conferences, go to football games, travel, live out our dreams and make the most of our time—however much of it we may have. In other words, to live life to the fullest.

Time is a valuable commodity, especially for patients with cancer who may find themselves with limited time or limited free time to enjoy the things they loved prior to their cancer. But the COVID-19 pandemic is robbing patients of that precious time. 

How COVID-19 Robs Patients with Cancer of Their Precious Time

I said I wouldn’t talk about it again. Diet, exercise, and weight gain. Yet, here I go. It’s that time of year when many people have made resolutions to exercise and lose weight. Cancer or no cancer, my self-image is tied up in a huge, gnarly knot with my sense of worth and well being. I suspect I’m not the only cancer patient (especially women) who can’t smother the sense of having lost control of my body, in addition to having a deadly disease. I look in the mirror and see a hunch shouldered, gray haired, overweight woman with more than her share of scars. And darn it, I’m not happy about it.

With a new year well underway, I’m pleased to report there is hope. Chemotherapy and mobility limitations aside, it has been possible for me to find ways to exercise and feel better about the way I look. Not joyful, but not so morose either.

After back-to-back diagnoses of a motor neuron disease and stage 4 ovarian cancer in 2016, I was forced to give up an exercise and diet regimen I had employed for most of my adult life. Not being able to lift my feet, balance myself, or bend over put an end to the aerobic exercise (think Jane Fonda, Billy Blanks, and Denise Austin) routines seven days a week. Fatigue and nausea from chemo also made it difficult to even think about exercise. I was told not to worry about my weight, that a higher BMI brought better survival rates. I gained 40 pounds in four years as I experienced two recurrences and went through chemotherapy three times. My cholesterol rose. So did my blood pressure. But my self-image plummeted.

However, last year in September my neurologist adjusted my diagnosis and told me I could exercise as long as I did it sitting down. I admit I was skeptical. How much good could that do?

A lot it seems. I increased the time I spent on the recumbent bicycle to 30 minutes a day, seven days a week. I found a plethora of seated exercise videos on-line. Excellent chair exercise routines are offered by several organizations. I love HASFit (Heart and Soul Fitness) for being so helpful in creating videos for people with limited range of motion and flexibility.  A softer, more gentle series called 

 is offered every day on PBS. My favorite, though, are the fitness routines that are accompanied by music and are almost like dancing while sitting.

These are the closest to the routines I did before my mobility became impaired. All of them modify the exercises so they can be done safely for people like me. For someone with balance issues this is critical for safety. Every exercise can be modified to suit the needs of the participant. They’re free and I can do them in the privacy of my own home. I’ve been doing the exercises for four months. It’s been great for morale and my weight has dropped. It’s not a miracle panacea, but when you’ve lost so much to cancer, it’s nice to get that boost — to get back a feeling you thought you’d lost forever.

People love to give cancer patients all kinds of advice about food—even when they themselves have never had cancer. It’s one of my pet peeves. So I won’t do it. For myself, I chose to stop thinking about what I couldn’t or shouldn’t eat and instead focused on what I will eat. I chose healthy foods only and moderate portions. Period. No gimmicks, no paleo, no keto, no Atkins. Just healthy.

Yes, that means the holidays were challenging this year. But I’ve discovered that fruit, especially grapes, pears, oranges, and apples, are as sweet as candy. They also have the added benefit of helping people in chemotherapy or on pain meds with their constant treatment companion—constipation.

Because of the weight gain, I’ve experienced since my diagnosis; I have three sizes of jeans in my closet. I’m happy to report I’ve been able to move down a step to the middle size. Yes, how I look is important to me, but knowing that exercising and eating right are also improving my overall health makes me feel good. Focusing on staving off cancer while ignoring the impact treatment is having on the rest of our body doesn’t make sense. Exercise and diet should always be done with our doctors’ blessing, but we often are the ones who have to initiate the conversation. If this is an issue for you, don’t be afraid to speak up!

Maintaining a good self-image in the face of body changes caused by cancer and chemotherapy is tough. However, exercise was able to boost one cancer patient’s morale and self-image.

Kelly Irvin

Cancer Treatment Sucks, Even When it Works

Celebrating A ‘Cancerversary’ In A COVID-19 World

How COVID-19 Robs Patients with Cancer of Their Precious Time

Make Exercise Work For You

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