The story begins like most—with a back story. A clear horizon but with the muffled sound of thunder in the foreground. Returning to that moment of time is a regret. A shoulda … A woulda. I should have…. I would have ….
In my case, I knew something was not right with my mother. But as an adult I was valiantly trying to reject the notion of parenting my parents. After all, they were still spry and youthful in my opinion. Both in their 70s but mobile and whip sharp. Not the kind of parents that needed worrying about like some of my friends’ parents who had walkers, pacemakers and slew of pills by their bedside. You don’t truly relate to the evolution of man until you are faced with your own thoughts of mortality. Static to crawling. Walking to running and talking. Suddenly, the reverse happens. Elderly patients walking with cane, now being pushed in a wheelchair, abruptly homebound. Losing their teeth. Requiring soft squishy foods. Later, a bedside glass for their dentures. Going to bed early and awaking at ungodly hours. I didn’t want to think of my parents in that way. Much like I didn’t want to see myself getting older. In fact, looking in the mirror, I see the same person with maybe a wrinkle or two. But I can Jedi mind trick myself into believing that: This is not the person you are. You’re not that old.
My mother didn’t feel well. Her symptoms vague. I didn’t push her. I suggested she get a work-up with her doctor but that was it. I didn’t ask are you up to date on all your routine tests? Or inquire as to when was the last time she had a physical? I just assumed she was doing what she was supposed to and so was Dad for that matter. It wasn’t until my mother was so debilitated– so exhausted that she could barely go inside a store for a few minutes before searching for a chair to sit down or asking for the car keys so she could return to the vehicle– that I became more insistent. At this point, a full year had gone by.
The thunder, no longer indistinct, was here rumbling in my ears, reverberating in the pit of my stomach. I ended up making the doctor appointment for Mom. She had protested that it was hard to find a decent doctor that took her insurance. But I found one handily. She made it to her appointment and loved the doctor that I had chosen for her. I chided her: What would you do without me? In the days following her appointment, she seemed better. She was out and about and even went to the mall. I was relieved and believed going to the doctor and taking action had cured her. All would be okay.
I was at work when she called me a week later. Her voice sounded like a small child’s.
“Help me, Rena.”
“What’s happened? ”
“The doctor’s office called. They said I needed to go to the hospital immediately.”
“Wait…. why?”
“My hemoglobin is super low. I need a blood transfusion.”
Mom’s hemoglobin was in fact critical we later came to find. Transfusions start at 8. Hers was a 5. Anything less than that value can lead to heart failure and death. The doctor said it was a wonder that she hadn’t collapsed. In the hospital, testing began to find out what was making her severely anemic.
Just recently a new study shows that most patients with colon cancer have a history of consistently declining hemoglobin levels up to four years before being diagnosed with the disease.
Another study shows the prevalence of anemia is 30% to 67% with high rates in patients with advanced disease.
There was a monsoon inside my head. Thoughts waterlogged, pasted on my tongue like soggy debris. How on earth did this happen? When was the last time you had a colonoscopy? I asked trying to keep my voice from pitching upwards.
Twenty years ago. I’m dying. She told me shivering and pale from her hospital gurney.
Twenty years ago?? I was silent. There was no point in berating her. She was dealing with a large mass that needed investigating and quickly. I squeezed her cold hand. You aren’t dying. She was wheeled away and the ”yet” struck me – a bolt of lightning. I had one of those movie moments in my car. Screaming at the top of my lungs. Crying. I’m not ready to lose my Mom. Please, don’t take my Mom yet. What would I do without her?
Colorectal cancer (CRC) is the third most commonly diagnosed cancer in the world among men (10.6%) and the second among women (9.4%). It is also the second leading cause of death worldwide following lung cancer. (Source: World Journal of Surgical Oncology) CRC also happens to be preventable through screening. Three CRC screening tests are effective at saving lives: colonoscopy, stool tests, or fecal immunochemical (FIT) testing. Testing saves lives but only if people get tested. Studies show that people who are able to pick the test they prefer are more likely to actually get the test done. About 23 million adults between the ages of 50-75 years old have never been tested (Source: Vital signs CDC).
I remember my gastroenterologist pushing me to do a colonoscopy early being that CRC was more of a risk factor in the African American community. (African Americans are about 20% more likely to get CRC and about 40% more likely to die from it than other groups.) I also could recall him telling me that it takes 10-15 years for a polyp to become cancerous. Dutifully, I had followed through and had taken care of the screening at 45. But I had never thought to discuss with my parents if they had taken care of theirs.
I didn’t have time to dwell on the latter. My mother was diagnosed with a large tumor in her cecum. She was assigned a surgeon for immediate removal. My father and I were in shock and swept along in the wake of the storm. We didn’t ask for a surgical oncologist. We didn’t question the wisdom of the doctors. We just numbly went along with everything. I returned home from the hospital and turned to reassuring my eight-year-old.
The surgeon removed the tumor which was sent to pathology. After ten days, Mom was discharged from the hospital. We met with an oncologist soon after to discuss the pathology findings. The pathology report was a good one. The tumor hadn’t penetrated beyond the muscle wall. There was no cancer found in 21 lymph nodes removed. She was given a stage (II) and a choice between doing chemo or being closely watched. Given her age of 74, and the fact that there was no evidence of metastasis of cancer cells, Mom chose to be watched. She would undergo CT scans every three months and have blood screening regularly to be sure. We rejoiced. The doctors marveled. “A true miracle.” They said. You’re so lucky. I said. Angels are watching over you. She was given 15% chance for recurrence.
The celebration was short-lived. Three months later the cancer was back. Found in the peritoneum, a 10-15% chance location for CRC metastasis, peritoneal cancer does not have a good prognosis. Staging changed. Now, Mom was considered Colon Cancer stage IV with metes to peritoneum. Mom began the standard chemotherapy regimen for CRC patients. I think it was at this point when I found the eye of the storm. My head cleared long enough for me to stop leaving it up to the doctors. My dad had sat listening and nodding, along with Mom, wooden. It was time for me to uproot myself and that notion, that my parents were the parents and were going to take care of everything and all would be alright. The nightmare would be over. The howling winds, the lashing of tree branches at the windows. The rain slapping hard at the foundation of our home punctuated by the bullets of thunder. Stop hiding underneath the bed with blankets swaddling for cover. It was time to reverse roles and become a caretaker. To become an advocate. To learn all that I could about CRC and chemotherapy. To research treatments and doctors. And finally, to sound the alarm.
I started talking to my friends about CRC and screening. Check on your parents I told them. Don’t assume or put off. Ask them. And, if you are at risk or ready for screening don’t put off. And now with home screening tests you can buy, it makes it that much easier to accomplish. Don’t put off. DO!
I asked my Mom if she was comfortable with me being her voice. Dad remained frozen. The fear of losing his wife of 55 years too close for comfort. He had been mute at the appointments and barely able to follow along. He didn’t ask any questions. He didn’t research any options. He was content to hold her hand and to massage feet suffering from chemo induced neuropathy. Mom was happy to grant me medical proxy. What would I do without you?
At times, it was difficult. Reading up on cancer and knowing too much about what the future has in store was difficult. Also, walking a fine line between sharing information with Mom or keeping it from her because it was important to keep spirits up. I imagined happy cells going to battle with cancer cells and being victorious. But I made it my mission to do all that I could to ensure Mom was receiving the appropriate attention and care she deserved. And thought about how to inform and educate others on this journey with the hopes to change their course.
- Colon cancer screening is a must.
- Routine doctors’ appointments and screenings are a must.
- Taking care of our parents is a must.
- Advocating for cancer patients – especially elderly ones – a must.
Educate yourself.
Don’t rely on doctors or feel pushed into making a decision. Do your own research. Be realistic about expectations and understand too that there are more instances of medical gaslighting with older patients. Meet with many doctors. Find doctors that the patient feels super comfortable with for their journey. Join websites with other caretakers and patients in order to gain counsel, stay informed, and feel connected. Importantly, in your role, try as hard as possible to remember to take care of yourself. Being an advocate is not for the faint hearted. But neither is parenting for that matter.
Mom has endured two surgeries and chemotherapy treatment over the course 4 years. She is still fighting and inspiring me with her strength and grace. We aren’t focused on the past- the woulda, coulda, shouldas, but moving forward, united, taking all the living that we can one day at a time.
