Sometimes being strong is the only choice you have

by jodi marneris

February 2023--Every day there are celebrations and observances taking place around the world. Today includes Take Your Child to the Library Day, Homemade Soup Day, Ice Cream for Breakfast Day and the birthdays of Rosa Parks, Alice Cooper and Charles Lindbergh. Today, Feb. 4, also observes World Cancer Day.

While each of the above mentioned, and the others not mentioned, hold a special place in the hearts of many, today I’m focusing on World Cancer Day—initiated to raise awareness and education about a disease first recorded by ancient Egyptians some 4500 years ago.

An article I read stated half of the world population does not have access to basic health care—so that means cancer patients throughout half the world aren’t receiving a timely diagnosis and don’t have treatment that could improve the quality of their life or save it. To think about the disparity in treatment of a disease that has been around for so long is astonishing. And I’m sure it’s the reason behind this year’s theme: “Close the Care Gap.”

Those of us who live in the U.S. are surrounded by extraordinary health care facilities—especially in large metropolitan areas. Those of us who are fortunate to have good health care coverage know the options are there for the choosing. Because of this, the outlook is brighter for treatment to help keep the cancer at bay, go into remission, or even be cured. There was a time when cancer—most any type—was considered a death sentence and people shuddered when they heard the word. But that is changing—at least for a lot of people—in half the world.

I’m proof of this. I won’t go into all the details, but I’ve been dealing with Non-Hodgkin’s Lymphoma since 2016. I’ve had several strains now and this one—no cure. I will no longer know life without cancer. But I still am here! And it can be treated—well, at least until it can’t be. My doctor said a lot of people with this type of cancer have lived many years with it. I looked at her and said, “Define many.” She just smiled.

You’d be hard pressed to find anyone who has not been impacted by cancer—whether it’s them, a friend or family member. Today I’d like to share stories of three people who have survived their cancer journeys and of another who provides much-needed support.

It was 2009 when Mary Anne P. was diagnosed with breast cancer—more specifically invasive ductal carcinoma. After a lumpectomy, eight weeks of radiation and five years of medication, she is cancer free. “When I got my diagnosis, I felt like the world stopped—and ended,” Mary Anne said. Her support group—family, friends, and those from her church—was strong. And what also got her through this journey—her faith and early detection.

Mary Anne learned some valuable life lessons. “I live every day as if it were my last, but I’m careful not to dwell on it,” she said. “People would say I was a strong woman and don’t know how I was going through it. You don’t have a choice.”

What advice does she have for others? “Friends will offer suggestions on a doctor and treatment. Listen, thank them, and then do what your doctor tells you to do.”

Karen N. in 2019, was diagnosed with Triple Negative Breast Cancer, stage II/III. She underwent 12 cycles of chemotherapy, 30 radiation treatments and a lumpectomy with node dissection. Right now, she is NED. (No evidence of disease.)

Being told you have cancer is not what anyone wants to hear, but Karen’s faith was huge in getting her through this life-changing diagnosis. “The Lord actually prepared me for the diagnosis, so I honestly say I was at peace with it. I had a normal mammogram less than two months before I felt the lump. I had a gnawing feeling something wasn’t right. I woke one morning with a painful, swollen node in my armpit, and I knew immediately what it was,” she said. “I am an RN who taught self-breast examination to teen patients and an avid researcher, so that helped.”

Karen found solace in surrounding herself with positive people, whether it’s family, friends, church, support groups or a community program. “Be your own best advocate. No one understands your body more than you do,” she says. “Don't be afraid to seek second opinions. Research can be good, but make sure it is from well-established medical websites and academic articles. Smile, have faith, rest, and treat yourself with love and kindness.”

Kathleen B. was just about to start 8th grade when she learned the grapefruit-sized tumor hiding in her rib cage was Ewing’s Sarcoma. Instead of spending her last year of junior high hanging out with her friends and enjoying time with her family, she had surgery to remove the primary tumor, underwent chemotherapy over a 15-month span and had radiation for six weeks.

“Age 13 is already such a tough time for young girls, adjusting to changes in our body, hearing messages about how we’re “supposed” to act/dress/wear, and starting to develop romantic feelings for classmates and pop stars alike," she said.

“Not only did I quickly morph into a bald, bloated, and exhausted teenager, I had little to no social connection as I spent most of my days inside a hospital with my mom, hundreds of miles from home," Kathleen said. "Meanwhile, my friends back home were experiencing lots of firsts."

There’s no evidence of disease right now, but Kathleen continues to undergo tests and exams to monitor for recurrence and long-term effects from treatment. Her treatments have created significant damage to her heart, lungs, gut, and vocal cords.

“Something I was unprepared for, besides EVERYTHING that came along with cancer, was the mental health burden. As many cancer survivors can attest, the period after treatment ends is often the hardest part. I was so sick and tired of being sick…and tired…and I was angry at the world. Everyone told me that I should be grateful to be alive, and to everyone who supported me and my family–I was–but inexplicably I felt so much shame for the person I’d become. This dark period lasted for months following treatment, and I experienced suicidal ideation after losing a close friend (Cardinal Bernardin) to his own battle with cancer in November 1996,” Kathleen said.

Kathleen’s advice for others affected by cancer—the patient, the caretaker, the family, the friends—can be found online in the cancer community she created. One of the site’s sections talks about “cancer muggles,” a phrase spoken by a well-meaning person who thinks it will help—but in reality, doesn't always.

'Get well soon' is one of the top muggles on Kathleen’s list. “No. No. No. No. No. No. Do not say this to anyone with cancer,” she said. 'Wishing you a speedy recovery' is another. “WHAT?! It has been 27 years and I’m still recovering.”

She suggests instead of asking, 'How are you?' ask, 'How are you right now? Today?' “And actually wait and listen for the real answer and give them space to open up because nine times out of 10, it’s not good,” she said. See Kathleen’s list of Cancer Muggles

She started on online cancer community where thrivers can share stories, seek advice, and generally just have conversations with those who are also battling cancer, additional advice for how to talk to those who have received a cancer diagnosis and ways people can support them in a healthy way. Buddhi

One of those who provides an extraordinary amount of support is Maureen W. She does it in various ways—like sending cheerful, colorful cards that have supportive or uplifting messages. “I add my own words of encouragement and sincere messages of how special that person is to me. I am hoping the greetings bring a little sunshine into that person’s life,” she said.

“I especially like to send Mass cards with the gift of prayer, so my family members or friend gains hope and assurances knowing many hundreds of people are praying for their return to great health. I believe prayer has so much power as God does listen to us. I have witnessed the power of prayer many times in my own life.”

Maureen was prompted to spread some cheer after watching her 56-year-old father pass from pancreatic cancer after more than a year’s struggle. Her grandmother suffered from cervical cancer, and she says that within the past five years she has lost two incredible childhood friends from breast cancer.

“Numerous family and friends I love dearly have succumbed to this dreaded illness over the years. Thankfully many others have survived and gone on to live long, healthy lives. I can only hope my positive expressions of love and caring bring them at least a moment of peace as they read my words of support, faith, hope and encouragement,” she said.

While she doesn’t do this with any expectations, she does receive feedback about the cards or notes and she says she is very appreciative when someone replies with an update on their health. “I am always willing to just be a good ear when they need someone to share their ups and downs and certainly happy to share in their fight to beat this dreaded disease. Knowing where they might be in their care and healing process enables me to know, too, if I need to bump up my prayers.”

Upon hearing of my diagnosis, a woman I know who also had been diagnosed with cancer, told me it was going to seem overwhelming as I made my way through the maze of undergoing tests, waiting for biopsy results, seeing doctors, having treatments, and everything else.

She said seven little words to me that I've never forgotten: take it one day at a time…

(A big shoutout to Nanci H. who snapped the photo in this post while on a recent trip to Hawaii and sent it to me with a note that read: Thought of you, my friend.)

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