Battling Breast Cancer, Bureaucracy and a Blood Infection That Was Never Supposed to Happen

I have been living with metastatic breast cancer for three years with no major hiccups. I have “good” insurance. I am informed about my condition. I advocate for myself, and I have resources and support. I have clinicians at two of the best hospitals in the country looking after me. Consistent chemotherapy, of the sort I have received for three years, can be relatively unremarkable as long as you employ the right medications to mitigate the side effects. But I’ve also learned that our current healthcare system is not well equipped to handle the administration of long-term cancer care, where even the smallest bureaucratic decision may mean life or death.

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Because chemo beats up on white blood cells, potentially leaving patients susceptible to infections, one of the most crucial mitigants is a white blood cell booster shot in the days immediately following treatment. The booster I had been using was called Neupogen. It is expensive: one shot costs about $300, and often I would need three at a time; and it has to be delivered by a specialty pharmacy. It arrives in a styrofoam container with ice packs and various neon labels, and inside are pre-filled syringes that must be kept in the refrigerator. My husband has gotten good at administering the shots. He takes a syringe out of the fridge and lets it come to room temperature. I lay face down on the bed while he swabs the injection site (my butt) with an alcohol prep pad, and he swiftly yet gently sticks the needle into my saddlebag, perpendicular to my body. After three years of administering shots at home (including hormone shots while I was doing egg preservation), it doesn’t faze me. We do one per day for as many days as the doctor advises.

Tuesday, August 21, 2018

On Tuesday, August 21, 2018, I went in for a routine chemotherapy infusion at the hospital. My white blood cell and neutrophil counts were already below the normal range, but my doctor advised I proceed with chemo and do three Neupogen injections following treatment.

On August 21 I had two refills remaining on my Neupogen prescription. I called my pharmacy to order a refill to be delivered no later than Thursday, August 23. I never had a problem with overnight delivery in the past, and the representative who took the call did not flag any issues.

Wednesday, August 22, 2018

On Wednesday, August 22, I had not received confirmation from my insurance company that the Rx was filled or scheduled for delivery, so I called back. That is when I learned that my insurance sought to switch me to a different, less expensive injection called Granix. They were working with my hospital to get the authorizations that a new drug required.

Over the course of the following week, there was a lot of back and forth between myself and my insurance company, myself and my hospital, my insurance company and my hospital. I can’t say exactly what went wrong, because the crucial link in the chain was the coordination among the insurer, doctor and pharmacy to prioritize the filling and delivery of my medication, and all I could do was make calls, a couple of times a day, to each party. At work I’d have to duck into a quiet hallway or go downstairs to the street to make a call, then wait on hold, then give my name and date of birth, and explain the issue yet again. When the provider needed to get back to me, I sat through work meetings with my phone face up so that I could see an incoming call. If one came, I would excuse myself from the meeting to take the call, no matter what.

Friday, August 24, 2018

On Friday, August 24, I was on the phone with the rare, if not singular, brick and mortar pharmacy in NYC that was able to order Granix for pick-up, but the pharmacist said he was waiting on prior authorization from my hospital. At 5pm, with no authorization yet obtained, my hospital’s phones route away from the individual doctors’ offices to an emergency line, and I spent the weekend in limbo. The medicine was in Manhattan, and without my doctor’s authorization, I could not get it.

Tuesday, August 28, 2018

Granix was filled by my pharmacy on Tuesday, August 28 and delivered to me on Wednesday, August 29, eight days after treatment and a week after I needed it. My husband gave me three injections as originally instructed by the doctor, but I think the damage was already done.

Sunday, September 2, 2018

On Sunday, September 2, I experienced a dizzying sensation, with pain radiating in my abdomen and strong pain in my neck. I took ibuprofen, applied a Tiger Balm patch and felt better. However, in the middle of the night I had chills and on Monday I woke with a fever, which kept getting worse. Cancer patients don’t have the luxury to wait and see the way healthy people do: every physiologic symptom, reaction or oddity could signify disease progression or a dangerous ancillary condition. It was Labor Day, and I would have loved to spend the last day of summer in the sun, maybe going to a picnic or the park. I did not want to deal with this, but we went to the hospital.

There I learned that I had an opportunistic bacterial infection. Klebsiella are common bacteria that live in many of our intestines and do not normally present problems. However, when given the opportunity—like when the body’s immune cells are quite low—they can get into other parts of the body, such as the blood. If left untreated, they can become exceedingly difficult to fight with antibiotics. My blood tested positive for klebsiella, and I was admitted to the hospital on Monday to receive IV antibiotics through Thursday.

Friday, September 7, 2018

The infection responded, and I was released without further complications.

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In the end, my insurance paid over $70,000 for, and I endured, four days in the hospital. Had I not gone to urgent care right away, it could have been much worse. I acted quickly because my fever was a serious symptom, but also because I could. My husband and I had the luxury of taking a taxi to the hospital; we had the convenience of our laptops to pass the time in the tiny hospital room; we had friends and family come to the rescue to feed our cats; we were both able to take days off from work and not lose our jobs or any income on those days. If we had kids, jobs that were insecure or paid hourly, or other obligations that we couldn’t delegate or ameliorate, it would have been much more upending to prioritize my health.

I should never have been put in that position. I should never have had to wait a week to receive a medication that keeps me healthy—a wait that ultimately put my well-being on the line. I should never have had to spend four days in the hospital hooked up to an IV. I should never have been sick, and I should not have been so scared. As a woman living with metastatic breast cancer these are feeling I already know all too well.