Neutropenia

“From too much love of living,
From hope and fear set free,
We thank with brief thanksgiving
Whatever gods may be
That no man lives forever,
That dead men rise up never;
That even the weariest river
Winds somewhere safe to sea.”
-- Charles Algernon Swinburne 1837-1909


This entry covers the period from Wednesday, August 29 through Saturday, September 1. (You know, the day Michigan lost to Appalachian State)

I had a bad night. Around 4 PM yesterday (Wednesday) I began to feel feverish. I had sweats, cold chills, and my temperature was 101. Having been told to call the clinic if my temp exceeded 100.5, I dutifully phoned Dr. Ahmed’s nurse, Denise. She asked if I lived close enough to come in for a blood draw. Assuring her that I did, I jumped in my truck and raced for the clinic. You’re probably asking why a temperature of 101 would merit this kind of caution? One of the side effects of chemotherapy is neutropenia. Neutropenia is a condition marked by an abnormally low level of neutrophils (the white blood cells responsible for fighting bacterial infections). What this means is that bacterial exposure the healthy person is unaffected by can become life threatening in a person undergoing chemotherapy. As I’m pulling into the parking structure I get a call from Denise saying, Dr. Ahmed wants you to go to the emergency room. I’m thinking, what? You want me to go to emergency, be evaluated, and possibly be admitted! No way, I say, am I going to subject myself to an atmosphere of disease--an environment crawling with who knows what virus’ and bacteria--that can only compromise my already inadequate immune system. After speaking with Dr. Ahmed, Denise calls me back. She instructs me to have my blood drawn, get a chest x-ray and report to the University of Michigan Cancer Center (UMCC) Urgent Care area. Hearing this, I race into the clinic, and get the blood draw and x-ray; what I forget to do, however, is register with Urgent Care. Boy was that a mistake. Before I say why, allow me to briefly explain what I mean by “bad night.” Finally, the fever, chills, and night sweats predicted by the literature on chemo and its side effects were upon me. Along with the drenched linens and fever dreams comes that futile attempt to use those same wet sheets for warmth. At around 5 A.M. the fever broke.

That morning (Thursday) my temp was normal and I felt better. First thing, I e-mailed Dr. Ahmed, asking her if she thought the chemo was related to the cancer, the chemo, or both. So, you may ask, why was it a mistake that I didn’t go to urgent care? Because they didn’t have a chance to evaluate me, and given that the Urgent Care Clinic was booked the next day, it was decided that I needed to go to the emergency room. So the first call I got that morning was from another of Dr. Ahmed’s nurses, Thecla, who, repeating Denise’s instructions from the day before, advised me to report immediately to the emergency room. When I adamantly refused, she coolly informed me that my ANC (absolute neutrophil count) was so low that a failure to comply might easily result in death. She went on to say that my neutropenic condition would guarantee special treatment, assuring me that I would be isolated and have priority in the suffering queue. I told her the only way I might consider it was if Dr. Ahmed herself called me. While I think the world of my doctor, and the U-MCC, methinks the idea that a neutropenic patient would be well served by going to the emergency room seems flawed. But I’m getting ahead of myself. Dr. Ahmed called. Her thought was this: the combination of a high fever and a low white blood cell count required that I receive infusions of antibiotics (as a prophylactic measure) as well as an injection to boost my ANC. She also advised that I resign myself to being admitted for the night. Reluctantly, I said that I would go in, but any IV treatment would have to be administered there. If it came to staying the night I would walk. At 1 PM I entered the emergency room. I left at 7PM. What follows is a description of that time.

After taking my vitals (normal temp and blood pressure) they took me back. Firstly, be advised, good doctors, neutropenics are not isolated, and are given no preferential treatment. If anything, I would say they are probably pushed down the list of those in need of urgent care, since someone in a serious car accident would probably demand more immediate attention. Which, of course, puts the neutropenic in a position of being exposed to a host of germs for an extended period of time. I was taken to a room with a privacy pull curtain. This cubicle, like the others surrounding the medical personal area afforded little privacy, and absolutely no escape from the sights and sounds of U-M Emergency. There is no escaping the cacophony of woe and misery served up by a part of the hospital that, because of our health care system, is little more than a way for the poor and socio-economically disadvantaged to obtain medical treatment. How could this place not be a veritable cauldron of contagion. If you recall my description of the latrine on the Northwest Jet to Marquette, this was worse. The nurse who escorted me noticed a sign keeping the door ajar, which said, “Wet Floor.” If one didn’t actually step inside, which my escort and I did, the assumption would be that the place had just been cleaned. We looked at each other much as if Ace Ventura, Pet Detective, had just stepped out of there. Whoa Nellie! By the by, I did receive two separate infusions of antibiotic, and an injection of Neupogen, a drug that induces the bone marrow to produce white blood cells.

At 9 the next morning (Friday) I reported for the CT/PET Scan I had consented to as a part of a research study. Positron emission tomography is a diagnostic tool that identifies areas in the body that are affected by non-Hodgkins lymphoma. It evaluates metabolic activity in different parts of the body using a radioactive isotope. Here’s what it’s like. I was taken to a room (with a private bathroom) that accommodated two subjects. A partition separated two comfortable reclining chairs (with separate TV access) where the patients are prepped for the procedure. The first step, part of the CT diagnostic, required that I drink an approximately 12 ounce bottle of a contrast agent, which enhances the image of the organs. How bad is it? Not that bad, though I suspect it becomes more dreadful with repeated tests and as one becomes sicker. It has a chalky consistency, which is badly masked by a pseudo-vanilla flavoring. After the body is given a half hour to assimilate this malty treat, the technologist administers an injection of a short-lived radioactive tracer isotope. This metabolically active agent, a sugar (fluorodeoxyglucose), then becomes concentrated in the tissues. One hour later, and after a required purging of the bladder, I was positioned on a flat examination table and moved into the center of a PET scanner—a doughnut like machine, which detects and records the energy given off by the tracer. With the aid of a computer, this energy is converted into 3-dimensional images. OK, enough science, let’s talk about the discomfort factors. Consider the positioning: after a pillow was placed under my legs, I was instructed to place both arms over my head, in a kind of extended Yoga position, after which my body was wrapped in a cocoon-like canvas sheet and velcroed in such a way as to aid in my not moving. While this may at first seem easily tolerable, know that the test takes 35 minutes. Regarding the claustrophobia factor, as one is moved, facing upward, through the tunnel-like machine, the roof is approximately 5-6 inches from the nose. While this was less uncomfortable than my first PET (my cancer symptoms, pain in the abdominal lymph nodes, was such that the position itself was painful) it was still a less than pleasant experience. I don’t know how typical it is, but on both occasions I fell into a nap-like sleep for a bit of the time. I can’t say how long I was asleep, but it wasn’t long enough. Upon waking and, in a moment of panic, (the disorientation was such that I was unsure of where I was) I struggled against the urge to cry out and break free. Given my age and condition,I can only wonder at, and admire, the stoic acceptance which those patients more infirmed than myself routinely exhibit. I felt better as the day progressed, and had a pleasant evening.

At about 3 in the morning (Late Friday Night) I was awakened by an excruciating pain of unknown origin. Much like the symptoms that led to my diagnosis, it seemed to be evenly distributed between my kidneys. In fact it was my hips. I would describe it as throbbing and constant, as in a pulse. It also flared across my sternum, causing me to think the cancer might be raging out of control. Being familiar with the myriad side-effects associated with chemotherapy, the psychological fear of not knowing where the pain was coming from, combined with the extreme nature of the pain itself, caused me to reluctantly agree with Brigitte that we should go to the emergency room. This ER experience, only two days after my Wednesday visist, was very different. Aside from the obvious fact, at least to me, that I was there for a tangible purpose (to relieve a horrible pain), rather than the intangible possibility that I might get sick, it also took less time and had a positive outcome. Once admitted (the room had a door), and upon seeing my agonized state, I was put on an IV and promptly given an injection of Dilaudid, a powerful narcotic. As a student of language, I have always thought that certain human experiences, like the sensation of pain, grief, or sexual ecstasy, are, in a way, ineffable. That is to say, they cannot be described in words. And so it was with the wave of relief that descended on me. Suddenly, I became chatty with the doctors, profoundly thanking them for delivering me from pain. While they evaluated my urine, bloodwork, and chest x-ray, Brigitte, tearful, and fearful of the “unknown origin” aspect of the pain, consoled me that everything would be all right, although I’m not so sure she believed this at the time. As it turns out, she was right. Filgrastim, trade name Neupogen, is classified as a colony stimulating factor (biologic response modifier) which stimulates the production of granulocytes (a type of white blood cell), in therapies that may cause low white blood cell counts. It is used to prevent infections and neutropenic fevers caused by chemotherapy. What the docs found was this: a side-effect of filgrastim (occurring in about 10-29% of patients receiving this medicine) is severe bone pain. More importantly, we were informed that not only is there no relationship between the presence or severity of side-effects and the effectiveness of the medication, but that my white blood cell count was now normal and that I would be summarily discharged. Finding out the cause and consequence of the pain dispatched my fear that the treatment might have to be halted, or readjusted; or worse, the awful dread that the pain was directly related to the cancer, having nothing to do with the chemotherapy or its associated medications.