Living or Dying? It depends which insurance company you ask.

I’ve been living somewhere between the two worlds of living and dying, for twelve years now. My last treatment for the triple negative breast cancer that had metastasized to my lungs was exactly 11 years ago today, the day I am writing this.

I wish I could say that on that day some bell was rung to signify that it was my last, confetti was thrown, and all of the oncology staff cheered, but as my oncologist loved to say, “we didn’t have a crystal ball”. The most I left with was an appointment for x-rays in six weeks to see if the treatment worked, once the radiation cleared out. I believe the well wishes sounded a lot like, “Well, this will be one spot where your cancer won’t come back.”

My new schedule became appointments every six weeks, alternating x-rays and scans, with a full body PET scan every fourth rotation to see where the cancer would pop up next. The weeks went by. The months went by, and I was still clear. We stretched my appointments out to 3 months apart, still with rotating scans and x-rays.

I asked what my status was now, and they would only cautiously classify me as Stage IV, no evidence for disease (NED). For now. They tactfully didn’t want to mention the fact that metastatic breast cancer has no cure.

Celebrating my 53rd birthday! My 11th "bonus birthday"!
Celebrating my 53rd birthday! My 11th “bonus birthday”!

My appointments got extended to six months apart, still with a PET scan once a year. Some time around the five year mark, my insurance company started denying my scans; starting with the PET, then MRI, CT scans, and even the ultrasounds. Much to my shock, my medical insurance company deemed me cured. I asked my medical team their thoughts and they uncomfortably told me that they would never be able to agree with that statement, and that coming in for at least blood work every six months will be a part of the rest of my life. They don’t see me even stretching the appointments out to once a year, ever. They assured me that the scans will be covered at any hint of anything suspicious, it’s just the routine ones that the insurance company deems unnecessary.

I was furious that these decisions were being made for me based on money, not research, science, or my doctor’s recommendation. The thought grew in my mind that if the medical insurance declared me cured, I could now increase my life insurance. I called dozens of life insurance companies and got the same reply: I can’t get life insurance at a reasonable price, if at all, until I have been cleared of cancer for ten years. I was classified as way too high of a risk of dying from cancer.

Medical insurance companies are calling me cured and life insurance companies are calling me dying. I am literally living in a world between living and dying.

All of this, about money.

It was a huge day when the enrollment date came around on my ten year cancerversary and we were going to up my life insurance in a big way. My husband avoided telling me for a week that the life insurance company denied it and because they counted the years differently than we did and we had to wait another full year until we tried again. It got in my head, and for the whole year I felt like I was holding my breath waiting for a bad medical report like a terrible plot twist in a novel.

I got to cross that finish line last October. We were able to increase my life insurance. I’m still disgusted and feel like decisions were made on my behalf to save money for those insurance companies and not in the interest of my health. I will not hesitate to ask for any scans we deem necessary.

This post was originally posted on Project Life, , on March 11, 2022

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