Caregiver 1

 A Caregiver in Cancerland

I never intended to be any kind of caretaker. I loved being a mom, but the intensity of the care infants need 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, her 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 in Port Orange, Florida, near where Elaine 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.. Elaine had met Dr. Chew, and she liked him. Especially since he has the perfect credentials for a blood cancer patient, botha s an oncologist and a hematologist, and he had ordered the biopsy. So we looked for a PCP in their network the day  after her discharge. Several 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 never 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 the 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 began to try to get into see Dr. Chew to find out the results of her biopsy. Was it what everyone suspected...Hodgkin lymphoma? It was a brick wall. The receptionist didn't know what to do with our calls. Meanwhile, Elaine 's lab results were posted in her 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 it was a great idea. Then 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, and is, all we want. 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, 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 in Cancerland has become a state of crisis, and we didn't even have a firm diagnosis yet.