Finding out my father has metastatic cancer during the COVID-19 pandemic

Holding my father’s hand during his first night home after he was released from his nearly 3-week hospital stay post-seizure (& metastatic cancer diagnosis).

My father, who has a serious heart condition, started acting strangely in early July.

He’d forget I was living in Boston, called asking nonsense questions, and experienced extreme ‘sundowning’ — I quickly convinced myself he had dementia.

The d-word haunted my childhood and my late teen years. I volunteered in Chicagoland nursing homes and shadowed geriatricians at the University of Chicago — I was briefly pre-med and saw firsthand how devastating this disease was… how it caused individuals and their loved ones to suffer unimaginable mental, emotional, and physical pain.

One month passed as we tried to get my dad neurological evaluations — we were ignored by his PCP who’s the gatekeeper to issuing his specialist referrals/tests (this is a whole separate can of worms re: why the US health care system sucks).

Earlier this month, my dad had a seizure. He woke up to a devastating diagnosis: metastatic brain cancer. CANCER? METASTATIC cancer?

We learned he has small cell lung cancer that has spread to his brain.

To my knowledge, my dad — a long-time smoker — was never screened for lung cancer.

He had regular lung and chest scans for his heart condition (fluid-buildup, a common symptom) but they never thought to screen for cancer (yes, we mentioned his smoking history to his doctors many times!!)

My dad spent three weeks in the hospital, unable to see his family aside from 15 min — 1-hour visits during his daily whole-brain radiation therapy sessions. I never missed a visit. Hospital admissions are never fun, but the COVID-19 pandemic makes it 1000x worse.

Why am I sharing this information with you today?

1. My dad saw top doctors in Chicago.
2. I am very involved with his care and advocate for him during his visits — a slight language barrier makes it difficult for him to express all of his symptoms to his doctors.
3. I regularly ASKED his doctors to screen for lung cancer.

I can’t help but think to myself… perhaps I didn’t push hard enough?

Moral of this story: If you think something is wrong, push harder. Don’t take no for an answer until YOU are convinced you’ve ruled out your concerns.

If you’re a patient’s advocate, elevate their voice and make sure their worries are adequately addressed. If you have the option to shop around for more medical opinions (especially for serious conditions) — do it.

Doctors are subjective. Question everything, do your own research. Not all doctors are amazing — we have to stop blanket glorifying professionals (most people in any industry are average — that’s the reality). Modern diagnostics have progressed, but they’re obviously imperfect.

This experience has been devastating. It really sucks to have this happen to your parent, especially when you’re 25 and want to selfishly devote your time 100% to your passions and pursue your goals.

However, this experience has also been eye-opening to the fact that awful things happen at unpredictable times and you learn to develop better coping mechanisms. I’m fortunate to have not experienced such an awful situation until now — I’m thankful.

tldr; life is short. Bad things happen. Try to find ways to cope and continue your life. Be kind and follow your passions with integrity.

I hope to use this blog as an opportunity to discuss difficult subjects I’ve had to educate myself on in crisis-mode — this doesn’t have to be you. I have the chance to reach a younger audience, as most aren’t placed in this situation until they’re much older than myself. Individuals are living longer with chronic conditions and not suddenly dying thanks to modern medicine. Coordinating long-term care for your parents will likely become a future reality for individuals in my generation.

Here are the possible topics I’d like to discuss:

• Insurance plans for long-term care
• Finding the right caregiver or home aide for your loved ones
• Nursing home vs at-home care ($$$$)
• Stipulations for getting a power of attorney
• Discussing end-of-life wishes with your elder loved ones — my heart breaks at the thought of this point, but it is an especially important one
• Caregiver fatigue

I hope my words can serve as a resource for someone. Life always goes on. You’re not alone.

Lastly, I am very thankful for my dad’s doctors, nurses, and healthcare workers who’ve gone above and beyond.

**All views are my own opinions & not legal or medical advice.**