Danielle Ripley-Burgess is a two-time colon cancer survivor first diagnosed at age 17, an award-winning communications professional and the author of Blush: How I barely survived 17. She writes and speaks to encourage others that faith can survive. Also, she bakes a really good chocolate chip cookie. Follow her blog at DanielleRipleyBurgess.com or connect on social media at @DanielleisB.

Danielle Ripley-Burgess

On a recent Sunday morning around 10 a.m., I missed a call but listened to the voicemail shortly afterward. It was someone from my cancer center informing me that my upcoming appointment — one I had waited three months for — was canceled due to the influx of COVID-19 patients at the hospital. They apologized and asked me to call them back to reschedule.

The human voice on the message was a nice change from the automated computer system that usually calls me with appointment reminders. I suppose the cancer center figured that using actual people to make these types of phone calls was worth the investment. I’d agree. I mean, it’s not ideal that the hospital is calling patients with cancer to notify them about cancellations. It was nice for a human voice to break the news compared to a machine.

So, I’ll give them a little bit of credit.

Also, in full disclosure, the Sunday morning message was the third one I’d received over the course of a few days. The prior calls had not come during times when I could answer my phone, and I wasn’t ready for this call on Sunday morning either. At least they were persistent.

I feel bad saying this because I truly am empathetic to anyone who gets sick, especially severely. Being in the hospital is never fun, and I can imagine that going in as a COVID-19-positive case is no cake walk. Being COVID-19-positive is a bit like wearing the scarlet letter these days. I’m glad hospitals exist and that we have trained staff who can offer life-saving support.

However, I’m frustrated at the leadership, structure and organization of health systems, many of which now run cancer centers. It makes me question if the patients are truly at the heart of the work.

We’re one of the richest countries in the world, and we pay those who lead our health systems 

 well. CEOs of hospital systems make millions of dollars each year. Even a 30-minute telehealth appointment at the cancer center — one without the expense of using a patient room and supplies — bills my insurance company around $300 these days. I’ll be generous and assume these high prices are because we’ve got very smart people working in health care that we need to pay.

So, here’s my question: If we’ve got some of the smartest minds running health care systems, why aren’t they better designed? I’m not just talking about public centers who often say their hands are tied because of red tape and policy. Even private hospital systems are in a crisis over another wave of patients with COVID-19.

This isn’t the first wave of COVID-19. We’ve been in this cycle almost two years and it doesn’t appear like we’ve made much progress. Why does an influx of patients for one disease mean patients facing other diseases miss the care they need? We’re still “borrowing from Peter to pay Paul” when it comes to our health care resources. Why?

We’re not thinking about the long game, we’re thinking short-term. Which, I do understand what this feels like. As a patient with cancer, I’ve had to make decisions based on life or death, not my future. But, as I’ve survived, I haven’t stayed in that place.

For over 20 years I’ve learned to get out of survival mode and look ahead so I’m ready for the life-or-death crisis again. I think it’s fair to expect more from those leading systems that help patients to do the same.

 (many that find early-stage cancers), telling cancer survivors to wait on follow-up appointments (many that also find pre-cancerous concerns) and quickly sending patients facing pain in the ER home (many of whom later pop up with late-stage disease).

Over a year ago, groups like the National Cancer Institute and the American Cancer Society alarmed us about seeing screening rates drop, data projecting future cancer cases and patients with delays in care. So, what did we do to both address these warnings and be ready for a future wave of patients with COVID-19?

Not much. It appears we got comfortable with crisis mode.

I promise the point of this column isn’t to trash or disrespect the health care community that is burning out and exhausting themselves to care for patients. Thank you to every doctor, nurse, tech and facilities staff for what you’ve been doing the past two years. You truly are our heroes.

This is more of a plea to those sitting in boardrooms at the top of tall hospital towers, those overseeing this mess. Please recognize the burden this lack of strategy is putting on those who are sick — those whose medical bills are funding the board room seats and snacks around the table. Please find new ways so every patient can get care as they need it. Please prioritize prevention.

I recognize this is a lot to ask for, and it won’t be accomplished anytime soon. But I have faith it can be done because pandemics tend to bring out innovation and new ways of thinking once the dust settles.

But while we wait for that, I’ll put in what seems like a smaller and even more reasonable request: Please make rescheduling my appointment easier. When I do respond to the voicemails, it will likely take me 10 to 20 minutes due to automated messaging systems and call forwarding. This is exhausting.

Any chance we could invest in technology that makes scheduling (or rescheduling) an appointment at the cancer center as smooth and easy as ordering a pizza from my phone or requesting delivered groceries?

If so, I’d have that appointment rescheduled by now and your team wouldn’t need to send me a fourth reminder.

For more news on cancer updates, research and education, don’t forget to 

Articles

A colon cancer survivor expresses her frustration about the way the health care system is currently being managed as yet another wave of COVID-19 cases caused her to cancel an appointment she’d waited three months for.

When COVID-19 Cancels Your Cancer Appointments: Why Are We Still in Crisis Mode 2 Years Later?

Most of the time, if we were going to sit down to chat about my experience with cancer, you’d find me upbeat and optimistic. I’m a fairly positive person, and that comes out when I tell 

. But it’s important for me to not sugar-coat the challenging parts. It’s true: facing cancer brings both ups and downs. Some of the most joy-filled moments are usually contrasted with intense, heart-stabbing pains. One of my most searing pains doesn’t involve the scars, bathroom emergency stories or treatment side effects that linger today. It involves the reality that because of cancer, I deal with infertility. This ache follows me every day.

The words flow off my tongue now, as I’m quick to label myself as infertile and explain why I don’t have biological kids. I can talk about it without crying and even wrote this article with relative ease. But make no mistake: It took me more than 10 years to get here. Nothing feels natural when you’re dealing with infertility.

At first, I wasn’t concerned about my situation regarding childbearing. 

Diagnosed with colon cancer at 17 years old

, I knew the treatments could affect my chances of having biological kids, but I didn’t really care. I had always planned to adopt, even before I got cancer. Plus, I had other things on my mind. I was just hoping to enroll in my senior year of high school.

I didn’t put a lot of thought into what it meant for the doctors to perform an ovarian suspension prior to radiation therapy. Looking back, I can also see how I blocked a lot of fear. Why were common 

 like freezing eggs not an option for me? There was no time. Doctors couldn’t prioritize my ability to create future life and delay treatment with my own life on the line. It was scary stuff, things I didn’t want to think about.

Preserving Fertility in Adolescent and Young Adult Women with Cancer

For years, being infertile didn’t bother me too much. My husband and I considered ourselves fortunate to know I was infertile going into our marriage. We were in no rush for kids, and even when the time came, we didn’t go through years of trying to get pregnant only to face surprising disappointment. Knowing ahead of time saved us a lot of heartbreak. I could count my blessings.

But by the time I hit my mid-20s, when a lot of my friends and family members started getting pregnant, the pain of infertility hit me out of nowhere. The blessings I’d once counted were thrown out the window. Infertility went from something I barely thought about to something that, if I let it, consumed my life. It was like a thief in the night, stealing what I held so dear. Yet the crazy thing was that it stole something that never had a chance at life. This made it even harder. As the reality of my barrenness sunk in, it led me to a dark place. To feel so powerless over whether or not you can create a life, while being physiologically built to create and carry life, is devastating.

Adoption Does not Take Away Infertility Pain

I wondered, like I imagine most infertile couples considering adoption do, if the pain of infertility would go away once the role of “mother” became a reality. Adoption agencies cautioned us to give ourselves enough time to grieve a biological child. I understood their wisdom once a baby girl gave me the proud title of mom. While our bundle of joy did indeed bring healing, laughter and light into our world, it didn’t take away my infertility pains and the reality that I couldn’t bear children like her birth mother did. As I processed this and became real and open about my feelings, 

adoption became the blessing on the other side of the pain

. However, adoption alone didn’t take the pain away. Only time and healing can.

As I mentioned earlier, it’s taken me over a decade to get to the point where I can openly talk about infertility. I started telling my cancer story within months of my diagnosis but talking about what it’s like to be a barren woman has taken a lot of time. I needed to grieve and find non-judgmental spaces to let my true feelings come out. I needed to give myself permission to feel angry, cheated and hopeless. I needed to skip baby showers, cry and acknowledge that not having biological children, but wanting them, is really, really hard. Even now, some days are easier than others.

All of this work did eventually turn things around for me. Today, I live with optimism and hope. I’m able to count my blessings once again, but only because I count the losses too.

A colon cancer survivor recalls how she made peace with being infertile as a result of cancer treatments.

The Infertility Ache of Cancer

Like many parts of the country, my hometown of Kansas City is blanketed in a layer of snow. Despite the hazardous road conditions and freezing temperatures, it’s really pretty.

Ever since I was a child, I’ve been told no two snowflakes are exactly alike. I would test the theory by pressing my nose against a cold windowpane to study the flakes caught in the screen during a snowfall. As far as I could tell, the adults were right. No two snowflakes had the exact same pattern, shape and design. I found this to be a good way to view people the older I got. All jokes and put-downs aside, the snowflake is a powerful metaphor for how to see and respect others.

As a young girl, I embraced being a tomboy and preferred basketball over Barbies. I also loved books, piano and theatre. All this made me unique; I enjoyed both sports and the arts, and I rejected anything frilly. While many of the other girls took dance, played with dolls and loved wearing dresses, I was different. I was secure in this uniqueness until I hit the infamous tween years. During what felt like a sudden change, I was embarrassed I’d never owned ballet shoes and knew how to plie. I thought my clothes needed to come from certain stores in the mall and I spent $100 of my own money on Doc Martins. I needed to be the same as the other students in my middle and high school. I needed to fit in, for that meant survival.

At 17 years old, something happened that took away the relevance of my Docs and gave me a new understanding of survival mode. I was 

diagnosed with colon cancer my junior year of high school

. Suddenly, I felt like an odd ball out— again—and my name-brand clothes couldn’t help. I started doing 

 decades before virtual schooling became a thing. While my peers were congregating near their lockers and cramming for math tests, I was getting chemo. To get through the shock, pain and grief of losing a “normal” high school experience, I had to accept my uniqueness again. It took time, but I eventually became proud of being a teenage colon cancer survivor. It’s something very few others in the world can say.

Part of getting to this point involved joining advocate communities where I’ve met other survivors who can relate. Through 

, I have met a handful of others who were diagnosed in their teens and twenties. I’ve met patients with 

, those who’ve undergone a subtotal colectomy, and other long-term survivors who also deal with radiation side effects decades after treatment. Thanks to these groups, I know I’m not the only one who has 

 (a term now used to describe what happened to me). In fact, I get together with advocates each March to tell my story during 

 and ask lawmakers to support policies like a younger screening age, more research funding, and access to care for everyone — not only a well-insured, privileged few.

From the outside, our stories may look the same, like a blanket of snow covering the ground. And typically, we present similar asks — that’s how advocacy works. But just like the tiny flakes after a fresh snow, if you get personal with patients, you’ll quickly notice differences in both personality and experience. Despite similarities, no two survivors are exactly alike.

Some can eat French fries and ice cream, others said goodbye to meat and dairy a long time ago. Intimacy is a struggle for some, not for others. Some colorectal cancer survivors have ostomies, neuropathy and hair loss, others don’t face any of those things. Some survivors can laugh and joke about their experiences, others tear up at the thought or get really angry.

Some are very private, others start Facebook groups, Twitter accounts and Instagram hashtags. Some had to fight to get access to screening and others were basically bribed by a doctor to get checked. Some survivors are mad at God, others can’t imagine surviving cancer without their faith.

Like any other group, cancer survivors are as unique as they are the same. What I’ve learned about survivorship after all these years is that it works a lot like the snow. When we recognize and accept our differences, yet resolve to move forward together, it can create real change and beautiful things.

For more news on cancer updates, research and education, don’t forget to

Cancer survivors are just like snowflakes in that they are unique and not the same, says a two-time cancer survivor.

No Two Cancer Survivors Are Exactly Alike

“Danielle, I found a lump. I know it’s cancer.”

That’s how one of the most unexpected calls of my life began earlier this year. As a storyteller who has spent years telling cancer patients’ stories, and a 

, I didn’t think anything could catch me by surprise.

Earlier this year, my dear friend Anjee Davis told me she had breast cancer. The world stopped spinning for a second and it took my breath away. How could this be? Not Anjee.

I’d met her many years prior when the organization we both worked for, 

, was growing. She’d been hired to run programs and needed a communications director. From a business sense, she recruited me. When looking at it through a nonprofit lens, she invited me into something world changing. She’d just dreamed up an awareness campaign for 

March—Colorectal Cancer Awareness Month

. She called it One Million Strong and asked me to help her build it.

Side by side, our lives revolved around every March. We worked hard to champion those we called “strong”—those who’d heard, “It’s cancer” either as a patient, caregiver or loved one. We tapped into survivors’ emotions and needs to discern how to best help them. We unpacked caregivers’ fears. We had long discussions about how to inspire those who had been dealt a tough hand to take action themselves. We poured hours of our lives into creating spaces and events where advocates could find purpose in their pain, and community with one another.

Every March, it was time for the survivors to shine.

As moms and wives, we were juggling the same things—not only jobs, but family too. Over time, we grew from passionate colleagues into dear friends. We celebrated not only organizational successes but moments of personal growth and healing. As a cancer survivor working in full-time cancer advocacy, I faced several dark moments. Anjee helped me through the triggers and complexities of survivorship. Never did I imagine that one day the tables would turn.

Instead of being the patient, I became the friend. Instead of surviving, I supported.

Anjee would often call to explain her scans, surgeries and decisions about reconstruction. Although very familiar with cancer I was learning a new lingo. There are commonalities in all of cancer, but each cancer type is unique. 

 were two different ball games and they needed different things.

Thanks to Nikki, a close family member with a recent breast cancer diagnosis, I had some practice in supporting a survivor fighting a different cancer type than mine. Anjee’s diagnosis continued to teach me how to support. She didn’t call to hear how I got through cancer, she called for a listening ear. She needed a space to air her emotions and be reassured it’s 

 and that she had the strength to fight. This required me to take off my “patient hat” and simply be an empathetic friend.

As a leading cancer advocate, Anjee applied her skills and passion to her own cancer. She found great doctors and made proactive, hard decisions. Being open about her situation allowed her to set important boundaries. Receiving others’ support and care led to her hitting the recovery road quickly.

Thankfully, she’s now doing well now. She’s even 

Anjee and I are still advocating for colorectal cancer together in addition to chatting about family and life. We’re dreaming, as always, that this March is the best one yet. But this year, and what I plan on becoming every year, I’m taking a pause to be more intentional about celebrating October. Why? Because I’ve learned what being a good friend to a cancer survivor takes. And this month, it looks like making sure Anjee, Nikki and other breast cancer survivors, get their time to shine.

When my friend was diagnosed with breast cancer, my role became supporter over survivor.

Danielle Ripley-Burgess

When COVID-19 Cancels Your Cancer Appointments: Why Are We Still in Crisis Mode 2 Years Later?

The Infertility Ache of Cancer

No Two Cancer Survivors Are Exactly Alike

Becoming The Supporter Over The Cancer Survivor

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