Labels

Labels can be obnoxious, terrifying, and comforting. I use, as my example, my recent experiences in the health care industry. In order to get paid, a doctor must provide a diagnosis. The problem is, my diagnosis is still in flux. After three bone marrow biopsies and frequent blood samples, we still aren't entirely sure what's wrong, although we definitely agree that something IS wrong with me. But I'm finally becoming reconciled to some of the labels.

Initially, I was admitted to the tenth floor of the Lunder Building at Massachusetts General Hospital. Since I entered on a gurney, I never saw the label on the button in the elevator for the floor: Cancer. According to the official website, the tenth floor of the Lunder building was designed for “Medical Oncology” and specifically for bone marrow transplant patients. The hematologist at Cooley Dickinson Hospital in Northampton told me that he thought I had aplastic anemia, but that I would need a bone marrow biopsy to confirm this diagnosis. Nonetheless, this became my label.

The first person to mention cancer to me was a nurse, after I'd been a patient in Lunder 10 for several days. She told me that I had leukemia (until tests came back later that day – then my label changed again). At the time, I thought that aplastic anemia was “better” than cancer. It isn't. Many forms of cancer can be cured; aplastic anemia cannot.

I was discharged from Lunder 10 after my first bone marrow biopsy. It indicated that my blood was starting to regenerate, so I wouldn't be needing a transplant in the immediate future - days earlier, I had been planning to watch the July 4 fireworks from a window on the floor, as I had been told that I wasn't leaving without a transplant!  As I left, I still didn't have a diagnosis despite the suspicion that I had a B cell lymphoma. I was given an appointment for the hematology clinic, on the first floor of the Cox building at MGH.

A few days later, I returned to MGH. I was directed to the clinic, whose door was clearly marked with two different labels: “Bone Marrow Transplant Clinic” and “Leukemia Clinic.” Oh, dear. Neither of these was anything that I wanted to visit. Still, the receptionist was kind, constantly offering snacks, drinks, sandwiches, and candy to everyone who entered.

After I had made the trip in to Boston many times and had my visits cut from weekly to biweekly, to monthly, and ultimately to every other month, at some point, the labels on the door stopped intimidating me. I saw the same people in the waiting room. Some appeared to be getting better while others did not. But, I didn't see anyone like myself – everyone had a definite diagnosis and a treatment cycle. I was the odd one, getting repeatedly tested but never needing any infusions or transfusions.Maybe I could escape a label.

After the third bone marrow biopsy, my diagnosis was “finalized” as aplastic anemia. Although I continued to have symptoms suggestive of B cell lymphoma, I needed a formal diagnosis for my insurance. It had been five months since I first got sick and the only the thing that was certain is that my bone marrow had failed and was not rebounding to normal. Therefore, the only diagnosis possible was aplastic anemia. I wasn't happy but I understood the need for a label.

Then, just when we thought that I was in a stable place, things changed about two weeks after the appointment where my visits were cut to bimonthly in the second week November.

Just before Thanksgiving, I developed a new symptom – pain and numbness in my left jaw. I thought that the tooth that I cracked after Jack's ATF raid on my house – the one whose corner had separated about two years ago - had finally developed a cavity. I went to the dentist to have it x-rayed. There was nothing wrong with it. Dr. Archambault told me that sometimes, cardiac insufficiency caused left jaw pain and numbness, and that I needed to see my primary care physician immediately.

Dr. Rouzier didn't have any open slots, so I saw Dr. Maria Gallo. She had been my physical therapist before she went to medical school, so we already knew each other. I saw Dr. Rouzier in the corridor, and he told me to tell Maria that they should talk about my problem, whatever it was. And what it was, wasn't obvious.

Once again, I was an enigma. Maria ordered a special CT scan of my head to be done at Cooley Dickinson, to see if I might have an aneurysm pressing on the nerve. I walked out to my car and realized that I couldn't catch my breath - just like when my blood crashed in June. I went back in and asked for bloodwork. Maria agreed and sent me to the lab, where they drew blood. She called me later that evening, to tell me that my hematocrit was a bit lower than it had been for months and that she had talked to Dr. Rouzier. Maybe it was headed down, again. I would follow up with him the next day.

I remembered that when my blood was crashing back in June, I had intermittently suffered from an earache in my left ear without any ear infection. Maybe this was related as both areas are enervated by the same branch of the facial nerve. Or maybe not. I would have a larger battery of blood tests the next week, on the Monday after Thanksgiving, then another visit with Dr. Rouzier on Tuesday morning.

I wasn't feeling well all weekend. I wasn't feeling awful, but I thought that my hematocrit and platelets were dropping – I was really having a hard time catching my breath and I had bruises everywhere. I zipped up to UMass after teaching at HCC on Monday and got my blood drawn.

Practically as soon as I got home, I had a call from Dr. Rouzier. He had also left a message on my phone (I had forgotten to turn on the ringer after my class). My hematocrit was 23. My platelets were 63. My white count was as low as it had ever been. He had talked to Dr. Ballom to see what she thought. We agreed to meet Tuesday morning and make some decisions. Minimally, I needed a transfusion, but he thought I might be admitted for further testing.

Tuesday, Maripat drove me to MGH. Maripat recoiled when she saw the signs on the clinic door. I had forgotten about my visceral response, the first time I saw them. I had blood drawn for a type and cross-match and an IV installed. And we waited. And waited. And waited. I was interviewed by Dr. Ballom's new medical student, then she examined me. And we chatted about what to do next. We agreed that things had changed since our last meeting, and that I needed to have the CT scans that we had planned on scheduling in February or March as soon as possible.

No blood was forthcoming. I had apparently developed a lot of antibodies to proteins in other people's blood since the transfusions of June. Finally, I agreed to return the next day. I needed to teach a class at 1:30 PM on Wednesday, so we would have to start as early as possible.

I met John in the parking lot to Big Y at 5:30 AM. Traffic into Boston wasn't bad at 6:30, so we arrived at MGH at 7:00 AM, and got to the clinic before 7:15. John had to push me in a wheelchair as I knew that I wouldn't be able to walk that far. I directed him from building to building until we got there. He, too, wasn't pleased to see the sign on the door. I thought that he would prefer to eat, visit Padihershef the mummy, or even the medical museum, but he mostly stayed in the clinic waiting room, napping and looking at his ipad. I was surprised; he hates waiting rooms.

I had an IV installed and more bloodwork was done. The blood, promised for 7:30 AM, didn't arrive until 8:45. Then, my IV line perforated my vein, so my nurse had to install a new one in the other arm. She had to slow down the rate of flow, so the transfusion took a longer than expected. The second unit of blood was also late. We didn't leave until 12:30, two hours later than we had planned. But I was able to walk to the car in the parking lot. I didn't make it to my 1:30 class but I taught my 2:30.

I still have the label of “aplastic anemia.” I'm getting ready for a new label. The CT scans next week may locate a lymph node that has been turned against me. I think I want a new label, “lymphoma”. I think I'm ready for it, now. I'm not sure that my insurance company will appreciate a new label. It doesn't matter. I'm changing insurance at the end of the year!