In a typical Hodgkin lymphoma case, a person first sees their primary care physician, (PCP), with a complaint of swollen glands. Further tests show that it’s not an infection but, likely cancer, that has caused the problem. The PCP, then, refers the patient to an oncologist. But, my 36-year-old daughter, Elaine’s, journey began in an emergency room which resulted in a 16-day wait before meeting her oncologist, Dr. Chew, and, finally, hearing the firm diagnosis that she had Hodgkins. By this time, I had sent emails of complaint to the hospital administration.
Dr. Chew is both a hematologist and an oncologist, practicing at Halifax Hospital in Daytona Beach, FL. It’s a huge organization, and it was just our luck that they decided to renovate the oncology department before Elaine became his patient. For six months, about as long as the treatments last, the oncology department will be on a floor formerly used as same day surgery.
On the day of diagnosis, we came into the building and waited to be called. Elaine’s vitals were checked, and we moved to an operating room to meet the doctor. Wait. What? The operating rooms were large and sterile looking. There was a noisy ventilation system, which is likely helpful during surgery, but it doesn’t facilitate great communication between patient and doctor. There was an exam table in one corner, and there was a folding table with three folding chairs and a laptop in another. It was not so welcoming.
Dr. Chew is a numbers man. He sat at a cheap folding table with his laptop. He scanned lists of lab values, sometimes making notes as he read. He confirmed that Elaine has Hodgkin lymphoma. He explained that she would need several procedures before she could begin chemotherapy. A port insertion and bone marrow biopsy were scheduled for the next week. A pulmonary function test and chemo school would also be completed before the next appointment. He gave us an order for bloodwork, and we were on our way.
You may think that is a pretty matter-of-fact declaration of a death sentence, but we had access to the test results and a physician friend had interpreted the results for us a week earlier. We were kind of relieved to hear Dr. Chew confirm that it was Hodgkin and that the treatments would begin soon.
Elaine was unable to eat or drink more than a couple of mouthfuls at a time without vomiting everything back up. She was dropping weight at an alarming rate, and her spleen was destroying her red blood cells. The anemia made every step, even staying awake, an ordeal. We wanted some relief.
The long days began at Halifax with the port insertion. Both that procedure and the bone marrow biopsy were done in the same part of the hospital but on different days. The port insertion came first. At Halifax, all visitors must show photo identification and wear a photo badge sticker, so I took care of that while Elaine checked in. We followed a staff member through the maze of corridors to the unit.
Elaine was given a bed. It was kind of like being in the emergency room, not a private space but with a curtain for privacy. I stayed with her until they took her to the operating room. I got a bagel in the cafeteria and went back to wait. We repeated this procedure for the bone marrow biopsy on another day.
The procedures were uneventful, and that week felt like progress. We also visited our local phlebotomy lab at Wal-Mart (yes, you read that right) where I shopped a bit while the lab tech drew blood.
I emailed the hospital administration again on the day before chemo school. While there was no response to my first email, which seemed to baffle staff members, the second got people fired up. I complained, specifically, about two staff members. The receptionist was not helpful nor kind to persons going through a time of crisis. The insurance coordinator was worse. Staff moved in to try to allay my concerns, but it just made me more upset. We needed to concentrate on the treatment since the doors had finally opened. I felt my focus was taken away from the real issue at that point. I was not conciliatory.
The next day we went to chemo school. As a result of my e-mail complaints, the staff had been trying to contact me. I wasn’t playing nice. There were sixteen days in which hospital staff were absent at best and downright uncooperative at worst. I had no complaints against the medical professionals who were providing direct care, but the system which supports their efforts failed us. It continued to fail us months later. She had excellent insurance, but she didn’t get excellent care, through no fault of her care providers. American health care is broken.
The following day began with a blood draw from the port before we saw Dr. Chew. He explained that Elaine had Stage III cancer, based on the fact that the lymphoma was both above and below the diaphragm. It was not in the bone marrow, however. Dr. Chew was very reassuring about the prognosis. He said, if Elaine completed the six cycles, with 2 treatments per cycle, her odds of a cure were close to 90 percent.
I’d had quite a bit of time to research lymphoma treatment, so I was not surprised when Dr. Chew said Elaine would have ABVD treatment where a cocktail of 4 drugs is given, or so I thought. In my mind, they mixed the chemicals, and she sat in a chair while the cocktail was pumped into her veins. This isn’t accurate, as she received each of the four drugs separately, one after another. The process takes hours, and there wasn’t enough time to begin treatment that afternoon. Plus, Dr. Chew wanted Elaine to get two more units of blood. She returned to the chemotherapy room to receive one unit that day, and she would return to get another before chemo the next day.
As I explained, the remodeling had left oncology patients in the same day surgery area, so chemotherapy had been set up in the pre-op/post-op part of the floor. There were 16 chairs, 8 on the pre-op side and 8 on the post-op side. Nurses were assigned by chair, so you seldom got the same nurse two treatments in a row.
It was a shock for me just to see all the other patients. None of the others were as young as Elaine, and one lady had a daughter bringing her each week. It was a contrast from the mother bringing the daughter in our case. Often there was a spouse. Some patients had no one with them. I will never forget the older lady who was in the chemo room with us, all by herself. As we left, she was sitting in her wheelchair in the hot Florida afternoon, waiting for her ride to show up.
The oncology department would become as familiar to us as our hair salon or dentist office, but it was strange and otherworldly at first. Everyone was so kind, and the staff and patients made it a calm and serene environment. That’s important to the patients who recline in their chairs, looking at phones or books or magazines, talking quietly to their caregivers, dozing, just chilling as the poison pumps into their systems. But, it’s our yellow brick road out of Cancer Land, and we embrace it, for the time being anyway.