Finally Lost It

Last week was remarkable for its downturn to the depths of ridiculousness (and I’m not speaking of a political situation), but I also had a feeling (at long last) that I may be nearing a resolution for my cancer treatment. I only hope that the delays I’ve experienced do not have a negative effect on my long term health.

I called my radiation oncologist’s office (at: The Oncology Institute of Hope and Innovation, neither of which descriptors have been part of my experience there) to see if any progress had been made on finding a brachytherapist, a task that seems beyond their ability to complete, even though they were the ones who recommended this treatment. The office manager Denise seemed unaware that I had been recommended to the UCI (University of Irvine) Medical Center by my primary care physician’s office, and said I should have no trouble getting in, to just call and make an appointment. I told her that UCI told me I needed the name of a doctor to get in for a consultation.

“Really?” she said. “I’ve never heard of that!”

Of course you haven’t, I thought, because this is cuckoo land where nothing makes sense anymore, especially noticeable when I’m talking to you.

I then noticed a call from a Renee at the group that is working with my Primary Care Physician to try and help me through this mess. The message said they were just checking in to be sure everything was going okay.

I called back and asked for Renee. When she picked up, I told her who I was and was just returning her call. She promptly said that she expected me to go to the workshop, and when she began to tell me the details, I broke in. “Workshop? I don’t know about any workshop!” There was a pause, and she began again with the workshop details, and I interrupted her with “I’m a cancer patient! You called to ask me how things were going!”

There was a brief silence, and then she said, “How are things going?”

I responded, “Not well” and proceeded to dump all my angst about continuing delays, brachytherapy that was thought to be essential but somehow never got scheduled, a PET scan order that never materialized, no access to my radiation medical records, etc. on her, ending with a reference to the existential, “I mean….this is my life!”

By that time I was sobbing in complete frustration, couldn’t speak, and handed the phone off to my husband Larry, who stepped up bravely.

Renee apologized and told Larry that she would have another worker there familiar with my case call back within an hour, and she hung up.

“I’m sorry,” I began.

“That’s okay,” he said grimly. “She got the message, big time.”

The other worker called and asked me to go through everything with him. I told him I hadn’t gotten the order for the PET scan my oncologist ordered, which I was scheduled to review with him in two weeks. He promised to check on it, and if necessary, to resend the order. I told him UCI needed me to have a name for the brachytherapist, which he gave me, and said he would send a second order over for that treatment.

Are you lost yet? Welcome to my world.

This morning, I called UCI, and they transferred me to the cancer desk. I explained why I was calling, and they confirmed that the order had come in. It had? Hallelujah! They said they would get me into the system and get back to me. Shoot….well….they did pick up right away, without making me stay on hold or promising to get back if I left a message, something that I knew from experience so far was hit or miss. I was talking to a real person who seemed on top of the situation. So some improvement.

However, I also got a call while I was out of the house from someone at a completely different medical group who wanted to know my complete cancer history. Where this came from, I have no idea. I told her I had no information in front of me and would have to call her back.

I talked to my pathologist friend, and she recommended that I file a complaint with the California Medical Board in regard to the radiation oncology office I dealt with. Delays in treatment, difficulty contacting them, withholding records, not following through with helping me find the treatment they recommended, were all causes for formal complaint, in her opinion. I went online to follow up, and found it very clear and easy to complete the form and send it off.

Something worked, yay.

In the meantime, UCI called back and said they were having trouble getting my brachytherapy treatment approved because it was coming from an IPA (Independent Practice Association), aka my oncologist. The woman I spoke with was very forthcoming, patient and informative, and said they were working on it, and to expect it to be resolved soon. IPAs became a thing when doctors realized that they gave them more choices and lowered prices, a good thing for patients. But they have also caused nightmarish results when it comes to getting insurance approval, and that’s the trap I find myself in.

This, apparently, is healthcare in 2025 America. And I live in California, which I’m guessing is way ahead of many states when it comes to providing a high level of care. But it’s become so complex that doctors are hiring people just to figure it out! And those people get caught in the web of rules and regulations that swarm between insurance, doctors, hospitals and patients like me.