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.

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.

Articles

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.

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.  
 

Author | Kelly Irvin

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

Make Exercise Work For You

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

Tips for Navigating Health Care After a Cancer Diagnosis