Kelly Irvin

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.

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!

Articles

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.

Make Exercise Work For You

For many people, the advent of a new year is a time of taking stock, looking forward and making resolutions. For me, as a woman living with stage four ovarian cancer, it is also a time of urgent self-evaluation.

 is the thought that keeps reverberating in my head. That’s because January is my diagnosis anniversary. Four years ago, on January 13

, my husband and I sat in my oncologist’s office and heard the words “metastatic ovarian cancer.” This happened only one month after I received a diagnosis of Primary Lateral Sclerosis (PLS) from my neurologist. I thought the worst thing that could ever happen to me had happened. I was wrong.

People talk about how life can change in an instant because of an accident, or the loss of a loved one, or a natural disaster. Cancer is like that. Hopes and dreams shrink as the reality sinks in. This life, my life, was much more finite than it was just moments before. Strangely, at the time, what I most felt was relief. I knew so little about ovarian cancer I was relieved. It wasn’t lung cancer or colon cancer (I knew two lovely women who perished from those cancers), I figured they could take out my ovaries—after all, I didn’t need them anymore&mdash;give me some chemo and I’d be good to go.

With good intentions, I’m sure, my oncologist reinforced that naïve assumption. She said the cancer was “highly treatable.” I interpreted that to mean “highly curable.” I walked out of her office knowing I would have chemo, surgery, and more chemo. I might lose my hair. I might throw up. I might get mouth sores. I might be tired. But I would survive.

It wasn’t until later that I understood what treatment and survival would entail. I came across my diagnosis on my patient portal account while waiting for my first chemotherapy treatment. The words stage four stared up at me. The statistics available at that time revealed that only 19% of women diagnosed at stage four survived five years. That hoped-for future of retirement, traveling, enjoying grandchildren, and writing to my heart’s content shrank to one in which treatment would never end. Periods of NED (no evidence of disease) would require maintenance treatment in hopes of extending those periods. I would never not be in treatment. Highly treatable, indeed. This was my new so-called normal.

So in 2020, I’m starting that fifth year NED after two recurrences. I’ve been given the precious gift of time. I ask myself if I’ve used this time—time so many other ovarian cancer patients don’t get&mdash;well.

What have I accomplished? Have I stopped dwelling on my fate? Am I more patient with my healthcare givers? Is dedicating myself to writing inspirational fiction the best use of my time? Am I spending enough time with my family? Should I be traveling the world and fulfilling my bucket list while I can? Am I piddling away my time with social media and inane TV shows? What does my report card look like?

The truth is no one knows what the future will bring. I could die in a car accident tomorrow. I could contract the flu and perish. A tornado could level my home with me in it. I’m not being morbid. Time is finite for everyone. Cancer patients are simply acutely aware of how precious time is to us.

Taking stock of the past year and resolving to do better in the coming year is good. So is simply living my best life. It’s not about goals or resolutions for me. It’s about joy and appreciating the gift of time.

I enjoy the cardinals on the birdfeeder outside my breakfast nook window. I giggle over silly videos of my grandkids sent to me by my daughter. I watch “Sixty Minutes” with my husband and ponder the state of the world we live in. Appreciating small moments is important for every one of us regardless of our health.  

I’ve been so blessed over the past four years, getting to know my three grandchildren, publishing numerous books, spending time with my husband, participating in my church, moving to a country home, and much more in spite of the disease.

No matter what comes, cancer can’t take those joyous moments from me. Going forward, it’s up to me to make sure of that.

Patients with cancer are acutely aware of how time is finite, and that's ok. They can appreciate the fit of time all the better.

Appreciating The Gift of Time is the Best New Year Resolution For This Cancer Patient

As I head into my fourth year of living with cancer, I often see social media posts from new patients with cancer and I feel for them. Not only for what cancer is doing to their bodies, but because of the stress I know they are feeling as they try to absorb the diagnosis and deal with insurance, bills and health care providers in one fell swoop.

I remember well the numb, overwhelmed state I experienced in those first days. I didn’t know enough to formulate intelligent questions, so I stumbled through a myriad of obstacles like the proverbial bull in a china closet. I want to share what I wish I had known then for new members in a club that none of us ever wanted to join.

Ask a nurse navigator for assistance. I had never heard that term prior to my diagnosis, but nurse navigators can help patients learn about resources available to them and which ones they may need. Would someone benefit from a psychologist or a social worker? They can offer advice.

Patients should be familiar with their insurance coverage. They should be familiar with the out-of-pocket cap and the drug plan formulary, which is a list of the drugs the company covers. It gives specific instructions on drugs that are handled differently.

If a person is on Medicare, there is no out-of-pocket cap for drugs. Because of a federal law, as it stands today, patients are not eligible for copay assistance from drug manufacturers. Therefore, they should discuss options with their doctor to determine if they can afford them.

Patients should also be aware that they can submit a request for an exception for drugs not covered by Medicare. I’ve done it twice and each time the drug has been approved after going through a prior authorization process.

This leads me to the term prior authorization. It’s crucial to know what this means and how the insurance company and provider handle the bureaucratic tango. It’s a process where the doctor must provide “additional information” before the insurance company will consider filling a prescription. My oncologist is part of a huge practice with many doctors. One person handles all these prior authorizations. I learned the hard way that I had to stay on top of this process, or I would wait weeks and the prescription would still be “processing.”

I learned to call the insurance company to find out the status of a prescription. At the health care provider’s office, I had to leave a message for the prior authorization person. It was never possible to speak with him. Sometimes I would get a call back, but mostly not. In one instance, the insurance company’s customer service representative called the health care provider with me on a conference call. Because she was calling from an insurance company, the operator put the call through and action was taken. Knowing this can cut days, even weeks, from the approval process. Otherwise you’re caught between two parties that often are not communicating.

Treatment in the infusion room, however counterintuitive it may seem, may be less expensive than those available to take at home. The difference is in whether Medicare sees it as a drug or a medical expense. My injections to treat neutropenia would be more conveniently administered at home, but the cost would be $900 a shot. If a nurse administers the injection in the infusion room, it’s considered medical and my out-of-pocket cap applies.

Since there will be an enormous amount of time spent in waiting rooms and dealing with staff, patients shouldn’t feel that they have to accept the status quo. We are customers as well as patients. If something is bothersome, speak up in a courteous way.

I once told a medical assistant that it was too cold in the exam room to undress for an exam. The next time I went, there was a portable heater in the room. It happens!

Writing a letter may also be effective. I did this with my prior authorization guy and received a call from one of the managers who said the letter would be used as a “teaching moment.”

Although these irritants may seem small compared with the disease, these stressors can often balloon into something more. Remove them and the road seems a little less bumpy.

The more a person knows about their disease, the resources available to them and their insurance coverage, the easier it will be to make good decisions. Nothing could be more critical in this cancer journey.

An ovarian cancer survivor shares what she wishes she had known then with those who are newly diagnosed.  
 

Tips for Navigating Health Care After a Cancer Diagnosis

I’m living with metastatic cancer as a chronic disease. Occasionally I trot that statement out and try to wrap my mind around it. Today is one of those days.

I recently “finished” another six cycles of chemotherapy for a second recurrence of Stage IV ovarian cancer. My CT scan was clear. I’m N.E.D. (no evidence of disease). Bring on the ticker tape parade.

That would’ve been my reaction after my initial treatment and surgery that resulted in a NED period of eleven months. Even after the first recurrence, I whooped and yelled hip-hip-hooray. Then recurrence number two rolled around eighteen months later. The reality of my situation hit me like a persistent case of the flu.

My oncologist told me when I began my first NED stretch that I would be on maintenance “until there’s progression.” That’s when I began to understand that my cancer would never go away completely. I had great difficulty wrapping my head around “the rest of your life.” I didn’t truly get it. Now I do.

It’s hard for loved ones and friends to understand. I should be thrilled and popping champagne to be “cancer-free.” But it’s difficult for me to get excited, knowing it’s only a matter of time until I return to the starting gate with six cycles of chemo ahead of me. And in the meantime, there’s maintenance treatment, which in my case this time involves chemo treatments every third, sixth, and seventh week, indefinitely, in hopes of prolonging the remission period.

A lot has been said about treating metastatic cancer like a chronic disease. It’s one of my oncologist’s (whom I adore) favorite topics. She says we shouldn’t be so focused on curing metastatic cancer, but rather treating it as we do other chronic diseases, like heart disease or diabetes.

While I have the greatest respect, faith, and trust in this woman who has treated me for three-and-half years, I beg to differ on this issue. From a patient’s perspective it looks very different. I would never say my disease was “better” or “worse.” My husband has heart disease. My father has diabetes. They too would like cures rather than lifelong treatment.

But the way we treat cancer is different. We treat it by pumping poison into a major blood vessel through a medi-port in our chests. The various drugs can cause white blood counts, hemoglobin, platelets, etc., to plummet, which can lead to life threatening illnesses and infections, anemia, and profuse bleeding. Chemotherapy offers a litany of other side effects: insomnia, chronic fatigue, weight loss or gain, mouth sores, alopecia, loss of taste, nausea, dizziness, skin rashes, and loss of hearing to name a few.

Metastatic cancer adapts and runs roughshod over treatments, forcing us to keep changing, looking for something that still works, until finally we run out of options.

What we need are better, less toxic, and less expensive treatments. What we need are diagnostic tools that allow ovarian cancer to be discovered before it has spread. I vote for a cure that allows us to live our lives without the pall of uncertainty hanging over us. Without the scananxiety that happens every three months. Without the lab work that shows tumor markers are once again trending up.

If we had those tools, I wouldn’t be required to sign paperwork that says I understand my treatment is palliative, not curative, under the guise of chemotherapy education every time I start a new regimen. Healthcare providers, we get it. Call it what it is. A liability release form. Don’t rub our noses in it.

So what do I do in the meantime? I’m a work in progress. I work to heed my oncologist’s advice: Don’t spoil today by worrying about tomorrow. She also reminds me that tomorrow may bring a new treatment that works better with less side effects. I plan to stick around and be here for that breakthrough. I remind myself that the 

Foremost, I remind myself that many women don’t get this time to live life after their diagnosis. Only 19 percent of women diagnosed with Stage IV cancer live more than five years. So, in honor of those gone too soon, I strive to make this time count.

I’m a novelist who writes inspirational fiction and I try write every day, even when I don’t feel like it. I play with my grandkids every chance I get and spend time with my family and church family. I enjoy the cardinals and hummingbirds jockeying for position at the feeders outside the bay window in our breakfast nook while I eat peanut butter toast and drink coffee. 

In other words, I accept this gift I’ve been given of understanding how precious time is. In return, I promise to live life to its fullest—something we should all do, with or without chronic diseases.

"I’m a work in progress. I work to heed my oncologist’s advice: Don’t spoil today by worrying about tomorrow."

Author | Kelly Irvin

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