Caregiver in Cancer Land

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I never intended to be any kind of caretaker. I loved being a mom, but the intensity of the care infants needs caused me to consciously decide that two was plenty. Interestingly, life has decided that I will be one. First, my husband has had multiple medical conditions, and then, on a cool late August day, I flew into the hot seat as the caretaker of my 36-year-old daughter, who had been admitted to the hospital with low hemoglobin. As I walked into the room, a nurse practitioner had arrived to tell her that an oncologist had been called.

At first, we were touched by the caring staff at Halifax Hospital Port Orange, FL, near where Elain lives but after a biopsy and 3 units of blood, Elaine was sent home. Elaine works for a major national chain and has excellent insurance. We were told while at the hospital that she needed to establish a primary care physician (PCP).  Elaine had met Dr. Chew, an oncologist and hematologist and she liked him, especially since he had the perfect credentials for a blood cancer patient, and he had ordered the biopsy, so we followed his directions and looked for a PCP in her network the day after her discharge. Several PCPs we called weren’t accepting new patients, but I found one and set an appointment for a couple of weeks away.

Elaine’s condition was not good. She could not eat, or even drink, more than a mouthful or two without vomiting. She had lost over seventy pounds. She was very weak, as her hemoglobin had never reached a normal ten, even with transfusions. No one from Halifax Hospital, nor its related oncology service, reached out to Elaine. I was there, making ice cubes from Pedialyte to float in the Gatorade that kept dehydration away. I kept the household, which also included three pets, going. We still didn’t have a diagnosis.

We began to try to get an appointment with the oncologist to find out the results of her biopsy. Was it what everyone suspected…Hodgkin lymphoma? We hit a brick wall. The receptionist at his office didn’t know what to do with our calls. Meanwhile, Elaine’s lab results were posted in her online patient portal. When she shared them with a physician friend and asked her impression, she said they supported the diagnosis we expected. After days of calls and holds and waiting for a return call, we got an appointment. And, then we lost it.

Dr. Chew wasn’t able to treat Elaine without a referral from a PCP. There was no point in an appointment just to talk diagnosis if treatment wasn’t a part of it. So, we called the network PCP’s office. I asked to get an appointment sooner, because of the need to start treatment. They offered the Friday preceding the Monday appointment we already had. When I said that I would have to look for a different PCP, she responded brightly “that was a great idea.” Then she said she hoped that I would have a good day. I told her that didn’t seem likely. She didn’t say anything about that.

I hung up and found a PCP to see Elaine the following day. We ended up waiting 16 days from biopsy to diagnosis. Again, that’s with GOOD insurance.

It was an agonizing time. As much as we dreaded chemotherapy, having seen my husband, Ron, go through it 3 times, it was all we wanted. To know that, with chemotherapy, Elaine would be able to eat and drink in normal quantities, that the spleen which was pressing on her organs would be shrinking… to know that, a cure could, ultimately, be compromised by the lag between her hospitalization and the beginning of treatment, and to have NO POWER to move this process along was demoralizing. Every day had become a state of crisis, and we didn’t even have a firm diagnosis yet. It was the beginning of our life in Cancer Land.