Hope for Complicated Care

Hi, my name is Zach, and I have brain tumors.

Not exactly the icebreaker I planned to have in my pocket in my early thirties.

When my wife first saw me drink a whole water bottle in one gulp, she knew something was very wrong.

It took three months before we got to the root cause, tumors that had been in my brain for years, if not my whole life.

If you’re here, you might have a similar story. You or your loved one had unexplained symptoms. Then came the doctor visits. And more doctor visits. And more and more visits and tests and procedures.

I’ve been a healthcare professional for a long time. Hospitals don’t scare me and insurance companies don’t surprise me. What did surprise me was how complicated healthcare was as a consumer.

Take my story for instance.

  • I called my primary care doctor with one specific symptom.
  • She scheduled a visit to see me, and then ordered labs.
  • After those labs were inconclusive, she referred me to a specialist.
  • The computer system referred me to the wrong specialist.
  • She referred me again and it went to the right specialist.
  • Then the specialist saw me. He ordered more labs.
  • Those labs concerned him and he ordered labs that required supervision in a hospital.
  • Those labs confirmed a rare condition and his resident prescribed medicine.
  • My pharmacy couldn’t buy that medicine and I had to switch pharmacies.
  • I got on the medication and had a follow up with my specialist.
  • My family history concerned the specialist and he ordered an MRI.
  • The MRI results showed unexplained masses in my brain.
  • The specialist called the neurosurgeons at a bigger hospital.
  • The neurosurgeon on call told me to show up immediately for emergency evaluation.
  • I spend the next week getting scans and blood draws and even a spinal tap.
  • The bigger hospital sent me home while their cancer center reviewed the results.
  • The tumor board met and decided I needed a brain biopsy.
  • My neurosurgeon scheduled a surgery with him and an ENT surgeon.
  • I spend two weeks off work with the support of the Family and Medical Leave Act of 1993.
  • A pathology consensus review board agreed what kind of tumor I had.
  • And now I’m waiting for cancer center to decide on the care plan.
  • Once they decide on the care plan I will have some kind of radiation therapy.

My healthcare story by itself is like the game where people trade a paperclip to buy a house. And it can feel hopeless navigating the twists and turns.

My diagnosis is full of medical hope. My dad had a very similar rare condition and tumor and surgery. I could lean on his experience. I also never had a moment where the lab values pointed to cancer, like the CNS lymphoma my grandmother had. The prognosis is excellent.

But the hope of knowing how to handle what’s next? That was murkier the whole way through.

  • How do I make sure I get the right specialist? (Plot twist – the specialist I mention above is not from the “right” specialty)
  • How do I understand my diagnosis?
  • How do I keep track of my medications?
  • What do I tell my job?
  • Do I have the right support for lift restrictions after surgery?
  • Who can keep my cats alive while I’m at the hospital?
  • What is the next step and how long does it take?

It was these kinds of questions that ate away at me during my biopsy recovery.

I had all the advantages. But I still had very little idea how to be a patient, especially with a complex, chronic condition.

It’s this struggle that inspired me to write from what I know and what I’ve seen. I’m not a doctor, nor a lawyer. But as my mother puts it, I can “look at the back side of the tapestry and understand that the front side is something made beautiful.”

The back side of the tapestry is a mess right now. But the front side is beautiful – a successful course of care that can help make it easier for others.

If you’re in the middle of it, I want you know that there’s hope. Hope to find a doctor that is serious about your care. Hope to understand your diagnosis and treatment. Hope to have a plan for hospitals and doctor visits. Hope to find support in real life and online. Hope for complicated care.

I hope you’ll come along with me as I share from my work experience and patient experience. Together we can make a tapestry out of these tumors.