Adriana Santiago
Caregiver
Quality over Quantity
This past year was the worst year of my life.
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 their fear. How to differentiate which part of them being sick is from the chemo, and which part is the cancer.
Are you supposed to cry? Are you supposed to instill hope? Am I saying the right things to make them feel better?
My mother was diagnosed with stage IV, metastatic breast cancer in November 2021, amidst the COVID pandemic, which made going to visit or taking her to her appointments that much more challenging. I had to fly in, get a COVID test, and sit outside while she anxiously went to her treatments.
At first, the doctors told her she had a few days. Months later, another nurse said she’d probably go to sleep one day and never wake up. A year later, she’s still on chemo, and very responsive to the treatment. Her liver is fully functioning. Her tumor has gone down. All the news has been very confusing and you begin to ignore what they say and just have hope that your mother is strong enough to beat this. It becomes an up and down emotional roller coaster every day.
When she was diagnosed, her employers quickly notified us that they were going to eventually have to put her on leave, leaving her without 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 someone with a pre-existing diagnosis? Should we get government funded insurance? Would her treatment team treat us differently if they did that? 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 since she was so distracted by everything going on. Her utilities. 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.
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 “rescue” mode at first. It’s easier to show you care When it lasts months or years though, you hear from everyone less and less. The calls are infrequent.The gift baskets ceased. 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 it’s 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’d 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’re brilliant, and miracle workers, but you can tell they’re all slammed and overworked and don’t have enough time in a day to give us the time and attention that we need to feel assured.
Some days she’s strong and has hope, and other days she’s 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 this. She helped children. She loved work and going to the gym. And now, she couldn’t work and she was lucky if she could last 15 minutes on a treadmill. She would cry in bed and say 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’m also scared. I always thought I was strong until these conversations and quickly realized how weak I really am.
Other days, there’s a glimpse of light. We begin living for the days when the test results come back and we see the tumor marker has gone down again…That her liver is fully functioning once again…That the tumors in her brain have been removed from radiation.
We hold onto any tiny fraction of hope and run with it.
On these days, we find little 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 your loved ones. None of us know how long we have on this earth, and quality of days reigns over quantity, sick or not.