This past year was the worst year of my life.
No One Tells You How
No one tells you how to be an appropriate support system for someone going through this. You’re not taught what to say, how to be of comfort, how to reduce your loved one’s fear, how to differentiate which part of the person you know is sick from the chemo, and which part is the result of the cancer itself.
Are you supposed to cry? Are you supposed to instill hope?
My mother was diagnosed with stage IV metastatic breast cancer in November 2020, amidst the COVID-19 pandemic, which made going to visit her, or taking her to her appointments, that much more challenging. I had to fly in, get a COVID-19 test, and sit outside, while she anxiously went to her treatments.
Up and Down
At first, the doctors told her that she had a few days left. Months later, another nurse said she would probably go to sleep one day and never wake up. A year later, she’s still receiving chemotherapy, and her cancer is very responsive to the treatment. Her liver is fully functioning. Her tumor has shrunk.
All this news has been very confusing, and I have learned to ignore what the experts say, and just have hope that my mother is strong enough to beat this. It becomes an up-and-down emotional rollercoaster every day.
Health Insurance & Medical Bills
When my mother was diagnosed, her employers quickly notified us that they would eventually have to put her on leave, which would leave her without medical insurance. I had to scramble to figure out what people “normally” do in these situations: I don’t even know what my medical insurance covers.
Do we purchase private insurance? Would anyone take a person with a pre-existing diagnosis? Should we get government-funded insurance? Would her treatment team treat us differently if she had Medicare or Medicaid? I spent hours on the computer, day in and day out trying to figure out what we were supposed to do next, to make sure she had insurance.
On top of that, she had let her bills stack up for months, because she was so distracted by everything else that was going on. Her utilities bill, her rent. She had stacks of bills, and a bank account that was overdrawn. I had to find money quickly.
Meanwhile, she was texting me every day, anxious and scared, and I had no way of knowing how to help her.
The Weight of Caring
Everyone rushed to her side when she was first diagnosed. She received gift baskets, money, all sorts of things. I think it’s everyone’s natural instinct to rush to a “rescue” mode at first. It’s easier to show you care. But when cancer lasts months or years, you hear from everyone less and less. The calls become infrequent. The gift baskets cease. Even as a caregiver, I’ve felt this natural withdrawal from some of the closest people in my life.
Some of my best friends still don’t ask how she’s doing. I try not to take offense, though, and assume it’s because cancer is one of those taboo subjects. Maybe they don’t want to upset me, or ruin the mood. After all, everyone has their own lives to live.
The doctors always rattle off her medication so quickly, as if I had heard it all before. What were they putting in her IV this week? Wait, is that T-word the chemo, or her medication for chemo? You feel dumb asking. They are brilliant miracle workers, but you can tell that they are all slammed and overworked, and don’t have enough time in the day to give us, the family members or caregivers, the time and attention that we need to feel reassured.
Some days my mother is strong and has hope, and other days she is defeated and says she wants to stop chemo altogether. The most heartbreaking day was when she turned to me and said she couldn’t do this anymore.
She was a social worker before her diagnosis. She helped children. She loved work, and going to the gym. Now, she is not able to work, and she is lucky if she can last 15 minutes on a treadmill. There are days she cries in bed and says that she doesn’t want to do this anymore, and that if anything should happen to her, I need to be sure to take care of my siblings and nephew.
I want to burst into tears when she has bad days like these. Instead, I try to stay strong and give her hope, even though I am also scared. I always thought I was strong, until these difficult conversations began, and I quickly realized how weak I really am.
Other days, there’s a glimpse of light. We begin to live for the days when the test results come back, and we see that the tumor marker has gone down again; that her liver is fully functioning once again; and that the tumors in her brain have been removed by radiation.
Quality of Life
We hold on to any tiny fraction of hope, and run with it. On those days, we find some small ways to celebrate. We get steaks, and have nice family dinners.
I don’t know what the future holds, but one thing this experience has taught me is how to cherish the time you have with the ones you love. We don’t look to the future as much anymore. Every day spent worrying is a day not spent enjoying the time we have with our loved ones.
None of us knows how long we have on this earth, and quality of days reigns over quantity, sick or not.