Lessons from a Cancer Patient During a Global Pandemic

Written by: Kate Williams

One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.”

It is a seismic slap. You stumble from the force. The shock almost knocks the wind out of you. The sting remains. Time passes. Your body remembers. Apprehension sets in when you think of it.

Cancer is traumatic.

My cancer diagnosis was unwanted, unwelcome, and uncontrollable. I ache for my life before cancer so deeply that my heart physically hurts. The trauma thrust upon me by my cancer diagnosis is at times physically and mentally paralyzing. Each day I force myself out of bed and face my new reality. In order to survive each day in my new life I was compelled to let go of what I expected my life to be this year. It’s a daily chore. I trained myself to face the world each day with a smile on my face and hide the isolation that is cancer as a young adult. The pain is dulled at times, but the wound is still fresh. And deep.

Having a cancer diagnosis dumped into my lap was coupled with two big emotions that I am still learning to live with and manage effectively in my life: trauma and grief. To cope with cancer, I have had to mourn my old life, the life I had before diagnosis. The expectation that I would spend this year bonding with my sweet baby with a full head of hair while seamlessly working and mothering was ripped from me. I had to let go of the plans I had to indulge my children this year. The idea that I had worked and saved and could finally relax a little with my family now seems so foreign that it could be someone else’s life.

The trauma of this diagnosis is the everlasting feeling that I allowed myself to be so deliriously happy, and this demonic disease caught me off guard. The seismic slap came out of nowhere. If I ever let my guard down again, another big slap could be waiting, lurking, ready to hit me at any time. The anxiety that comes from this trauma is persistent. Headaches used to be headaches. Maybe the indication that I drank one glass of wine too many the night before. Now, a headache might be a sign of metastases to the brain.

As cancer patients, we are forced to accept that life is unfair. Our lives have been upended by brutal changes. We are expected to accept this stroke of misfortune and put forward a positive outlook for our friends and family. We cannot tell them about our anger. They should not see how deeply we are truly suffering. We have to manage our torment and manage their feelings because our pain, justified and decadent as it may be, is a buzz kill.

We have to learn to view our existence through a new lens. Devastating but true, there is no return to life before cancer. Cancer patients learn to move forward. We learn to connect to others with similar experiences. We learn to thrive. We learn to survive.

As if cancer was not enough, I, like every other human across the world, am watching in horror as this pandemic is forcing humanity to grind to a near screeching halt. In an effort to stop the disease from spreading we have all been asked to give up life as we know it, at least for a while.

I watch the world recoil as the pandemic changes our human experience and somehow I remain eerily calm. I feel like a spectator watching humanity adapt to a new reality. I am not in the fishbowl this time, not the recipient of pity stares and cancer word vomit.

Reactions of my friends and family to these grossly unwelcome changes presents a bouquet of emotions that are oddly familiar to me. The anxiety of the unknown. The stress of loss of income. The social and mental isolation. The grief for what the year 2020 should have been.

The consequences of humans staying home for a few months and not safely being able to gather in large crowds are sweeping. Brides and grooms are cancelling weddings. High school seniors are missing their proms and graduations. Families are separated from their loved ones in long term care facilities. Folks who never considered themselves to be “old” are finding themselves lumped into a population deemed particularly vulnerable to the disease. Restaurants are closed. Rent cannot be paid. Retirement savings are dropping again for nervous savers who just got back on their feet after the 2008 crash. Jobs are lost. Money is tight. Stress is consuming.

Humanity is experiencing trauma. Humanity has been slapped and is struggling to recover from the shock.

And yet, humanity seems to be having a very hard time accepting how profoundly unfair life is.

The grief that our friends are experiencing for their old lives, cancer patients know well. We know that life is not a guarantee. Like us, people have been forced to make changes, difficult and uncomfortable changes, changes that affect their mental health, finances, free time with children, happiness, and self-worth. Lives will be forever altered. The trauma from this pandemic will be etched on those of us able to recall it.

Considering the silent and positive heroism Americans expect from their cancer patients, American reaction to these changes has been a mixed bag. Some people can accept that life is not a guarantee. Some have lived misfortune and know it does not discriminate. Some use the grief for what this year could have been and attempt to create a collective force more powerful than an invading threat. Some even find it patriotic and pitch in to help in any way they can, harkening back to a time when Americans proudly fought a common enemy. Folks across the country are donating time, materials, and even a “Rosie the Riveter” effort to aid our beleaguered health care workers.

Others find it beneath their “liberty” to adapt to changes that will save lives. People are angry about the effects on their income. On their assets. On the economy.

Of course, these changes are overwhelmingly unfair. It’s unfair to lose income due to a viral outbreak. It’s unfair for life as we know it to change. It’s unfair to ask everyone to stay home to protect those who are more advanced in age or immunocompromised. There is serious trauma in job loss. There is serious trauma in being broke. There is serious trauma in not being able to pay bills. I have been there, and the scars are seared in my consciousness.

Society will be traumatized from the severe economic, social, mental, and physical costs of this outbreak, and the effort to quash it.

But it is criminally morbid and cruel to suggest that “life should return to normal” for the sake of “the economy” before the viral threat has passed. It comes with a cost: American life.

I am stunned, angry, and deeply hurt at this suggestion.

There are thousands of scared cancer patients across the country who have already been dealt a hand that is profoundly unfair, and now we have to watch, fighting for our lives, while people selfishly complain about “the market.” Treatment plans have been changed, chemotherapy regimens are delayed, surgeries are rescheduled. Patients with otherwise treatable cancers will die and patients who would have passed peacefully surrounded by loved ones will die alone.

Folks without compromised immune systems who level these complaints perceive themselves to be somehow superior. Even if by the random stroke of fortune. These folks fail to consider that a seismic cancer slap can happen to anyone, anytime, anywhere. Cancer does not care.

When I was first diagnosed, people practically fell over themselves to show support to let me know I was loved. But in the time of a global pandemic my life has suddenly become a mere economic cost. A sacrifice at the feet of the almighty market. Capitalism comes with a cost and if lives of the immunocompromised and elderly are one, so be it.

Instead of hustling back to work and casting us aside, there is wisdom in the experience of cancer patients. The helplessness, grief, trauma, and anxiety that people are experiencing with Covid-19 has already taken host in our lives.

Most importantly, don’t take any of the advice you have given us. As a cancer patient, I have been told to “BE POSITIVE” more times than I can count. Despite my urge to hold a mirror back to everyone who has ever told me this, cancer has educated me that hollow advice should be spared. It vastly oversimplifies the experience of trauma and grief to just wax positive over the pain.

Instead, understand that we choose how we respond to this experience and how it will shape our lives going forward. We have every right to be angry, but let the anger ignite a fire that propels us forward.

We have to learn to view our existence through a new lens. Acknowledge the trauma. Air it out because holding it in is even more difficult.

Devastating as it may be, there is no return to our lives before this global pandemic. The change is unwelcome and unwanted, but it is here. We need to learn to move forward. We are so fortunate to be able to connect to others and share our experiences. We will learn to thrive during the pandemic. We can and will learn to survive.

Perhaps we have the misfortune of living in a time with a global pandemic. But perhaps we have the foresight to see that these changes are not the death of us. We are survivors.

Author’s note: The photo at the beginning of this piece is of me in the middle of chemotherapy. At the end of four vicious rounds of AC chemo, I went on a little trip with friends. 2020 was not the year I expected, but I have still been able to have fun. I encourage you to do the same.

 

For more about Kate, please visit her blog: https://www.mskatedecorates.com/cancering/2020/4/2/lessonsfromacancerpatientduringaglobalpandemic

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Written by: Kate Williams One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.” It is a… Read more.

Superhero Logan

Written by: Jessica Burrey, Logan’s mother

Two days before his first birthday in 2018, Logan was diagnosed with anaplastic ependymoma grade 3, a brain tumor.

Q: What is one thing you wish the world knew about your cancer journey with Logan?

This type of tumor is relentless and while we are so incredibly thankful that Logan is doing so well, the fear and worry will never go away. Recurrences happen even years after initial diagnosis and the stress of that fear is very tough on our family.

Logan is amazing and has worked so hard to get strong and overcome so much. God made him stubborn and strong willed because He knew Logan was going to face this. Due to the tumor and surgery, Logan has balance, strength, and gross motor difficulties. He wore a hearing aid for 8 months due to a moderate to severe hearing loss. That has improved as well, and he no longer wears it.

Q: What did other people do for you and your family that made a difference?

Our friends provided food for our family, so we didn’t have to worry about that. They also helped watch our older son, who was 5 at the time. In addition, friends provided gift cards to help with travel expenses, thoughtful texts and messages that I could read late at night when I couldn’t sleep, toys for the boys so they had different things to play with at the hospital and at the apartment when Logan was in treatment.

Q: What gave you strength during your journey?

First and foremost, faith. Support from friends and family, visits at the hospital from friends and family, encouraging notes and letters from others.

Q: Is there a program or service at Cancer Support Community that has helped your family?

The support group for cancer moms helps me a lot. Being around other mothers who are going through the same thing, I know I’m not alone on this journey. The boys love the activities in the kids’ group, Kids Korner. There was a cooking class where they made funny face pizzas and an art class, too. They had fun with the other kids.

Q: Where are you now in your journey with Cancer?

Logan now gets scans every 4 months on his brain. His spine is scanned every year to make sure the tumor hasn’t metastasized to his spine. He receives weekly physical therapy to work on deficits caused by the tumor and life-saving surgery and radiation.

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Written by: Jessica Burrey, Logan’s mother Two days before his first birthday in 2018, Logan was diagnosed with anaplastic ependymoma grade 3, a brain tumor. Q: What is one thing you wish the world knew about your cancer journey with Logan? This type of tumor is relentless and while we are so incredibly thankful that… Read more.

22 and thriving

Written by Alexsandra Dietrich

 

Hello, my name is Alexsandra (Alexsa) Dietrich. I am 22 and I am a Hodgkin’s Lymphoma cancer survivor.

On February 17, 2018, I found a large lump in my neck that had been growing over 72 hours. For months I had been diagnosed three times with bronchitis and once with pneumonia. I thought because I was from Florida and was not used to the Ohio weather, that was why I had been feeling off for so long. After seeing the lump progress so quickly, I went to the urgent care clinic that had been diagnosing me with the other illnesses. They sent me to Riverside Hospital’s emergency room, where I sat for six hours, waiting on blood tests and scans.

A doctor then came in and sat eye level with me. He told me my scans “lit up like a Christmas tree” and in his professional opinion he would be surprised if I did not have lymphoma. I was then admitted to the hospital, where I stayed for five days, having more tests done and a biopsy to remove the head of the mass sticking out of my neck.

As a student at The Ohio State University in the middle of Spring semester, I decided it would be best for have follow-up treatment there back home in Florida. I had to drop all my classes and move back to Florida and, just like that, in less than a week my whole life was flipped upside down. I became a patient at Moffit Cancer Center in Tampa, Florida, where we then began more tests to determine the stage and treatment plan.

After what felt like an eternity, it was determined I had Stage 2B Hodgkin’s Lymphoma. With this diagnosis, I had to complete a mandatory 12 rounds and 6 months of consistent chemotherapy. I received the ABVD treatment plan and went to a 5 to 6-hour chemo drip every other Tuesday. During this time, I lost my hair, could not walk without a cane, could not eat without medicine, and had other major side effects.

I was a strategic communications major before being diagnosed and am happy to say during treatment I changed my course of life and am now in school for social work in hopes of working with the oncology population. I was able to finish all my chemotherapy, have clear scans, and ring the bell to signify completion of my treatment on August 14, 2018, a day that I will never forget. Although I endured something difficult, I never gave up and never stopped fighting and I am grateful to be here today.

I’m back in school now, studying social work and have had the wonderful opportunity to do an internship at Cancer Support Community Central Ohio. In my role there, I have met so many other cancer patients and survivors, plus their family members and friends, who also are affected when someone they care about has a cancer diagnosis. I’m also helping the organization raise awareness of the impact of cancer on people my age and providing a safe space online for young people in their 20s and 30s to connect with each other and share their journey.

Cancer changed my life, but it changed it for the better. I hope to continue to show people the light at the end of the tunnel and change other people’s lives too.

Alexsa’s survival bell ringing video here. Warning: you will probably cry

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Written by Alexsandra Dietrich   Hello, my name is Alexsandra (Alexsa) Dietrich. I am 22 and I am a Hodgkin’s Lymphoma cancer survivor. On February 17, 2018, I found a large lump in my neck that had been growing over 72 hours. For months I had been diagnosed three times with bronchitis and once with… Read more.

Hope for the Holidays

Tori was experiencing pain and fatigue that she thought were related to her work as a Sous Chef and a second job as seasonal Food and Beverage Manager. In those jobs, the Bellefontaine native regularly lifted heavy cases of products and worked 70 or more hours a week. Her doctors told her she was fine, that maybe she was just overdoing it by working and lifting too much.

Then, Tori felt a hard lump in her breast when she was lying down. She originally thought she had rolled over onto her phone, but soon realized that was not the case. She thought she might be overreacting, but after talking to her mother, decided to call her doctor’s office to get the area checked. After being evaluated, Tori was referred to an imaging center, where a week later she was diagnosed with breast cancer.

The diagnosis was difficult, psychologically, since for over a year her doctors said nothing was wrong. Then, the anxiety of what the next year of her life would look like, trying to balance life with cancer treatments, became overwhelming. She had been having fatigue and pain in her back for quite a while, but none of her doctors pursued her complaints.

When she was first diagnosed with cancer, Tori was led to believe she most likely had early stage breast cancer because she was so young. However, less than three weeks later, scans showed that the cancer had metastasized to her bones, lungs, liver, and kidney. Although the cancer had spread, Tori originally thought she could still work. However, the physical work of lifting and long hours were too much, with broken bones from metastasis and a new treatment regimen. So, just over a year of working her first career after graduating college, Tori had to retire and apply for long term disability.

“I went three months without any income,” Tori said. “I have student loans and wasn’t sure how I would be able to pay them back. I also lost my health insurance after my medical leave expired, since I still wasn’t able to go back to work.”

Tori found out through the Chaplin at her cancer center about Young Survivors Coalition and started attending their meetings. Young Survivors Coalition is a support group targeting women under the age of 40 who are diagnosed with breast cancer. It was at one of these meetings, which were hosted at Cancer Support Community, that she learned more about the resources available through Cancer Support Community. Tori contacted Angie Santangelo, Cancer Support Community’s licensed social worker and Program Director, who helped Tori access programs and services that would help her during her cancer journey.

“Knowing I was not the only one in this situation has made it easier,” Tori offered.  “Living in small town can be very isolating [when it comes to being young with Metastatic Breast Cancer] but connecting with others who have been through the same thing has been helpful.”

Tori continues to attend the Young Survival Coalition support group meetings when she is in Columbus for treatment. While her first line of treatment kept Tori stable for about 16 months, her cancer is currently active. Even though there is still no cure or promise of remission for metastatic breast cancer, Tori says: “The hope is that my treatments will continue to sustain me for years to come.” While her diagnosis is currently terminal, there is hope that with continued research, metastatic breast cancer can one day be treated as a chronic rather than a terminal condition.

Help us take on cancer today!

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Tori was experiencing pain and fatigue that she thought were related to her work as a Sous Chef and a second job as seasonal Food and Beverage Manager. In those jobs, the Bellefontaine native regularly lifted heavy cases of products and worked 70 or more hours a week. Her doctors told her she was fine,… Read more.

There Is Strength To Be Found In Sharing The Journey

kathie-and-dave

Dr. David Houchens spent 35 years in preclinical and clinical cancer research in a variety of cancer types. He directed laboratory studies and coordinated research efforts related to prevention, detection, and treatment at the National Institutes of Health in Bethesda, MD, and at Battelle Memorial Institute, as well as in a private bio-tech firm here in Columbus.

In 2001, Dave was diagnosed with prostate cancer and came face to face with the disease in a personal way.  His cancer diagnosis had a tremendous impact on his wife, Kathie, a foreign language educator, musician, artist and spiritual director.

As a caregiver, Kathie has found it important and helpful to become involved at Cancer Support Community as a way to maintain her own balance and well-being, and to reach out to others in a spirit of hope and compassion. Here is her story:

When he got the diagnosis Dave was not surprised.  He had been following his PSA blood level for a number of years and even had had a negative biopsy.  When a follow-up showed the cancer, he knew he had options for treatment, and the “gold standard” at the time was surgery.  He chose to have a radical prostatectomy.

I, on the other hand, was stunned and in a state of shock.  I had just lost my father to cancer two years earlier, and could hardly fathom losing a husband, too.  It meant an abrupt change of lifestyle; the fear of becoming a young widow made me think about commitments that kept me from spending time with Dave. After-work events that took us in separate directions were now not going to have priority on the calendar. We each began to see each other with new eyes; every day was precious to us as we entered a world of discovering ways to cope.

Dave is a “glass half full” kind of person.  He will find the positive side of even the bleakest situation.  He never complains and is easy to live with.

The class at Cancer Support Community that attracted me first was Gentle Yoga. I was invited to join the class by Abby Dorn, the instructor, who also teaches yoga at The James. There is a limit on how long programs at The James are available, so I chose to continue the classes at Cancer Support Community.

The yoga program has made the biggest difference in keeping me calm about whatever comes next.  By maintaining my flexibility as I age, it makes everything else I do easier.  One of my ways to give back was to make lavender-filled eye masks for the yoga participants who made donations to Cancer Support Community in return.

The Cooking for Wellness class has been the best option for Dave and me to do together. We have learned a lot about the way food can enhance the healing process. New recipes and kitchen tips keep adding spice to our lives, both literally and figuratively.  One of the best things we discovered together was a change in diet and lifestyle.  As a caregiver I felt empowered to DO SOMETHING!  That’s what I needed.  Dave had his treatment and recovery to occupy him, but I felt like a bystander until I found out I could cook our way to better health.

We live close to the Cancer Support Community facility, so we feel fortunate to be able to take advantage of the variety of programs with minimal travel time to get there and back.

I’ve found that there is strength in sharing the journey with others who are on their own road through treatment and into recovery.  It takes a lot of energy to pretend you are “fine” when you’re not, and that energy can be channeled into your healing once you plug into the resources available to you and find ways to process all that is going on with your body, your mind and your spiritual health.

We’re now in our fifteenth year of living with cancer, and we have made cancer support and education our mission since it is part of our life.  Prostate cancer is a couple’s disease. We are in it together.  Our coping, strategizing, researching treatment options and finding ways to reach out to others has been a team effort that has been enhanced and broadened by the resources and programs at Cancer Support Community and the people we’ve met there.  We keep finding new ways to give back, to be good listeners, to hold a hand or accompany someone else through a rough patch.

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Dr. David Houchens spent 35 years in preclinical and clinical cancer research in a variety of cancer types. He directed laboratory studies and coordinated research efforts related to prevention, detection, and treatment at the National Institutes of Health in Bethesda, MD, and at Battelle Memorial Institute, as well as in a private bio-tech firm here… Read more.