[sic]: A Memoir (15 page)

And then sometimes, nobody really knows what the fuck is going on, but the patient’s dying anyway. That’s what happened to me. I have vague memories of this period, when something started to go wrong. I have to depend on my mother’s diary.

There is a problem with Joshua having a temperature of unknown origin. A team of infectious diseases specialty is summoned by Dr. Q., who says no one has figured out what underlying bacterial disease is causing the fever. He admits he and his staff are stumped. He orders different IV antibiotics and many additional blood-draws.

I remember sensing a change in tone on the part of the staff, and I remember the blood-drawings, the transfusions; but I don’t remember feeling that I was actually in real danger. I might not have understood; my memory may be failing; or I might not have been made aware of the situation.

Throughout this period Joshua receives several blood transfusions, day and night. He is supposed to have 3mg of IV Tylenol before each transfusion, but because his platelet counts are in a dangerous state and his hemoglobin level is so low, there is no time to administer the Tylenol. Now the orders are to “transfuse STAT.” This is a very serious time for us.

Since he cannot talk, he writes me a note which reads—as well as I can make out his handwriting, because he is in so much pain (and it is in the middle of the night)—

“—what kind of side effects will happen without the 3mg of Tylenol not being used prior to the transfusions?

“—Doesn’t the Tylenol reduce the fever?

“—What was I given at ten—what pain killer? I got relief.

“—Should I take . . .” [Unfinished sentence.]

Here, Nothereal first appears in my mother’s diary. My mother’s transcription of the dialogue between patient, doctor, caretaker, and pain management staff is fascinating in its expression of the fragile complexity in calibrating the collaboration of different specialists.

After the next morning rounds with Dr. Q., the pain management team again returns. I notice that a lovely, petite, dark-haired female doctor is part of the group. Another P/M doctor or nurse asks Joshua what his pain level is on a scale of zero to ten. Joshua cannot reply. F. says, “I know you are in a lot of pain, Joshua. Are you at ten?” Joshua then whispers, “No, seven.”

The doctor increases the Fentanyl. The conversation continues (some paraphrasing):

JOSHUA
:
I am not sleeping. Does the Fentanyl lead to sleep deprivation? I haven’t slept for one full hour [i.e., without interruption] in a month.

F.
:
You are not supposed to have hallucinations. They are related to the pain meds. If we get rid of the pain meds, you will have more pain and you will not and cannot get any sleep at all.

Then F. turned to me.

F.
:
[to me] We don’t want him sleeping all day and then not at night.

ME
:
What does it matter? The bottom line he needs sleep. He’s not going anywhere. Why does it matter when he sleeps?

F.
:
Has he tried the throat lozenges?

ME
:
Obviously, he can’t use the lozenges because he cannot swallow.

F.
:
If he needs a rescue every fifteen minutes, then the pain management is not working.

ME
:
Well, I know that. That is why I want more attention brought to pain management. That is why you’re here, right?

F.
:
Maybe you’re not pressing the rescue button hard enough.

ME
:
Well, here is how I press it. (I get up and walk over to the card and press the rescue button and, of course, it registers.) And, Joshua definitely knows how hard to press the rescue button. Plus I’m with him all the time, and I see when he presses the rescue button. All I know is this (and I look at the entire pain management team): my son is in constant pain and pain management, I’ve been told, is part of his treatment and recovery. I don’t see any decrease in his pain and I want to see some pain management action NOW.

The lovely, petite, dark-haired female doctor (who, we learn later, is Dr. [Nothereal]) says something to F. about can’t she (F.) see the effect Joshua’s pain is having not only on him but also his mother who is here 24/7 observing this? The pain management team exits.

Shortly thereafter, the nice nurse-practitioner, A.G., comes in to talk to us. Obviously, she has been told by Dr. [Nothereal] that I had “words” with F., that there are issues between me and the Pain Management team. A.G. is encouraging, pacifying, and compassionate. She assures me that she is “on top of the situation.”

My friend Mark had given me his wife Bonnie’s sister’s daughter’s discarded iPod—a little pink Nano obviously more suited for an eight-year-old Asian girl than for me. This fact was funny, and it was also funny that Mark gave it to me without earbuds. Like—gee, thanks. An iPod, with no earbuds. This deeply troubling situation provided my mom the opportunity for a break (she needed one), and so she embarked on a strange odyssey to the Apple flagship store, an odyssey that involved several wrong turns, a memorable encounter with a kindly Madison Avenue doorman, and (really!) a frenzied rickshaw ride down Fifth Avenue during rush hour. When she returned to the hospital, long after sunset,

Dr. [Nothereal] is alone with Joshua. It is long after her shift, but I am glad Joshua is not alone. She tells me that she would like Joshua to be put on a sedative medication called Haldol instead of Ativan. She also tells me she suspects that Joshua has reached a plateau with the Ativan, that it is no longer helping. She says she has left orders to the nurse to administer Haldol every five hours, but that if it seems like Joshua needs more, I should call the nurse and say “he’s worse and more confused,” and that he needs another Haldol, even if the five hours has not elapsed. She tells me she has put this into his night order book.

Nothereal at vigil, long after her shift has ended. This I remember; not words, but the feelings, and I’ll bet there weren’t a lot of words anyway.

Around this point—not a terribly good omen—old friends from college and high school started flying in to the city from all over the country. I was just happy to see them; I didn’t really realize why they might have been doing this at this point. Again, we must rely on my mother’s record of events.

Joe, a friend of Joshua’s from high school, arrives from Chicago to stay for a few days to see Joshua and give me a little relief. Joe is staying at a nearby hotel, but stays each night until about one or two in the morning. He tells us he’s going to get another meal and sleep. He will return very early the next morning—which he does. During the course of the day, Joshua has several more vomiting episodes of increasing violence.

Joe also observes the frequent visits and phone calls from Dr. [Nothereal]. Joe asks me if it looks to me like Dr. [Nothereal] “has a crush” on Joshua. I reply affirmatively. We both smile at each other. We both feel that Joshua is also aware of the extra attention he is receiving from Dr. [Nothereal] but he (Joshua) says out loud that maybe it’s just the medication that is influencing his observations or feelings.

Now very late Saturday night or, perhaps, very early Sunday morning, an emergency chest x-ray is suddenly ordered. Dr. [Nothereal]—who is present as a visitor, not a doctor—and Joe are in the room with me. An x-ray attendant arrives and helps Joshua into a wheelchair. The attendant pushes the chair, I guide the IV cart and Joshua grabs hold of my free hand and says, “Mom, are you coming?” I tell him yes, and that Joe is coming also. Dr. [Nothereal] speaks up and indicates that she is coming as well. As we all get on the elevator to go to radiology, I notice that Dr. [Nothereal] is in tears. Joshua is still holding my hand and he’s facing the elevator doors; the wheelchair fits snugly in the elevator. So Dr. [Nothereal] and Joe are behind him and, therefore, he is not aware of Dr. [Nothereal] crying.

We get off the elevator and are led to the radiology department. On the walk there, I ask Joe—who has now also seen Dr. [Nothereal] crying—to stay with her and comfort her, as Joshua will not let go of my hand. While Joshua is in radiology, I wait in the hallway. Finally, I see Joe come around the corner. Dr. [Nothereal] is not with him. I ask him if she’s okay. He says that he tried to settle her down as well as he could, that it is a certainty that she has feelings for Joshua that are not just medical concerns, and that she says she doesn’t know how I can stay so strong when she, as a person in the medical profession who has become attracted to a patient (which is a forbidden “code” in the medical profession), cannot. She tells Joe that she cannot any longer stand to see Joshua in pain. Joe says he comforted her, tells her that we all appreciate her medical expertise as well as her compassion. He said she composed herself and said she was going back to her apartment, about a block away from the hospital. Joe had offered to walk her there, but she said it is not necessary. Then Joe and I wait until Joshua is wheeled out of the x-ray room. The attendant, Joe, and I then get Joshua back to his room, all the while Joshua is holding my hand. Joe and I get him back into bed.

Joe is due to leave Monday morning and stops by early that morning before he leaves for the airport. I am so sorry to see him leave. He has been so helpful to both Joshua and me. I wish he could stay.

Early Sunday morning, Dr. [Nothereal] visits Joshua again. He has had another violent night. She checks his medical chart and says to me, “I ordered no Ativan; I ordered Halydol. The nurses did not follow my orders.” She shows me the medical chart and her orders. No Halydol was administered throughout the night and she shows me that she ordered haldol IV .5mg every 8 hours, by the nurse, not on a PRN (as needed) basis. She also notices that she had ordered no more swish-and-spit procedures of the mixture of water and lydocain. She had ordered that the nurse should take a sponge stick, dip it directly into the pure lydocain and gently swab Joshua’s mouth and tongue that way. This was not indicated as being done in the record either. She is furious. She exits the room in a fury.

Then one morning I got up at my normal hour, eight, precisely an hour after rising at my previous normal hour, seven (the nurses have to wake you every hour, which becomes a source of vague irritation after a few weeks). I was looking forward to my morning helping of—well, nothing, actually, because one of the prime vexations of the transplant is a weird thing called mucositis, which is when the lining of the mouth and throat and esophagus is annihilated, so you can’t eat or drink or even swallow; the entire mouth and throat becomes a plastic white shell that cracks and bleeds even when you’re not vomiting chartreuse bile like Linda Blair or, unlike Linda Blair, regurgitating horrendous mucus crystals, bizarre coral-sharp glistening black structures that scrape along the unprotected digestive tract, splitting it, before coming out of your mouth and falling to the floor and shattering there. But what I’m describing here is pain, and it is not pain that I felt when I started, that morning, to die.

Of all the things I’ve set out to describe, this one presents the largest challenge, because the incentive for action—for escape—was not pain. It would be easier to say that it was; in many cases I’m sure it is; but it was not in my case. Not pain even in Nothereal’s very broad definition of the word. I’ve gone through dozens, maybe hundreds of words
à la recherche du bon mot
, and the best I’ve been able to do, surprisingly, is the oddly neutral “discomfort.” But it’s the most accurate, I think. What does it mean, normally, to be in discomfort? Let’s hypothesize a scenario: you’re at a bar, say, when the mediocre techno’s a little too loud. Techno’s bad enough, and this isn’t even good by those standards. The stools are too high, so there’s nowhere to anchor your legs, and you feel, faintly, the onset of a muscle cramp. The place is overcrowded; just behind you and to your right, a bunch of people from the DA’s office downtown are busy transferring aggression after the week’s frustration; their voices purposefully intrude. One woman in particular directs an earsplitting, rueful laugh at your eardrum, all the while taking care to pretend that, as far as she’s concerned, you don’t exist. The guy with her keeps ordering nauseating cocktails like diet vodka Cokes or Dewar’s in 7UP, and the bartender sets ’em up on the sticky bar right in front of you, and a blue-sleeved arm continually reaches out an inch from your face to grab them, and each time you wonder if they’ll spill on your slacks. You know that in a few minutes you’ll have to urinate, but God knows where the bathroom is in this place, and how long the line is. It’s slightly too warm inside, too humid; the windows are foggy; there’s the slight odor of—well, you know, cheap perfume and sweat and beer and maybe something rotting somewhere. Maybe you’re with a couple of friends you don’t know too well, and one of them’s already been drinking too much, and the other, for some reason, may not like you. But for some reason you’re socially obligated to talk with them, although the one guy’s talking too quietly for you to possibly make out what he’s saying, and the drunk guy’s shouting too loud and he’s not looking for a response anyway, and you’ve got another chemo session tomorrow—you know, any bar in New York at six in the evening. And you just want to get out of there. That was the feeling, magnified. You just want to get out of there. But you can walk out of a crowded bar; I couldn’t walk out of the hospital. That’s the best way I can put it. There are two kinds of people: those who fear death, and those who fear not death but—as Orson Welles noted, not to Merv Griffin two hours before his own death but as a younger man—
age
: a fear they mistake for thanatophobia. It’s not nonbeing itself that terrifies them, but wrinkles, the loss of beauty, varicose veins, difficulty walking, general wear-and-tear, forgetfulness, broken hips, the loss of control of one’s body, the impossibility of walking, the assisted-living scenario, dementia. But not nonbeing itself. I wonder how the actual approach of the moment of death strikes such people: it might be a surprise. Of course the moment of death isn’t a moment at all, but the end of moments, and according to Zeno’s paradox of locomotion, in order to get there you must get halfway there, but in order to get halfway there you must get halfway to halfway there, in other words quarterway there, but even in order to get quarterway there you’ve got to get halfway to quarterway there, which is eighth-way there, and so on. As the morning sun streamed in, my halfway there was a sudden deep ache in my lower back, and my quarterway there was a sudden spike in fever (the worst I’ve ever experienced and the worst feeling I’ve ever felt, and it occurred to me why the Christian imagines Hell as hot), and my eighthway there was the ache in my back swirling around to radiate through the torso and then to the arms and the legs and then to the wrists and ankles, then to the fingers and toes and, discovering a barrier to expansion, curling back to the wrists and ankles and hammering spikes into them. Halfway to eighthway I stopped counting because I saw hospital staff rush into the room, and a plethora of tubes shoved into the plethora of UBS-like connectors attached to the catheters in my chest and arms, saw two of Picasso’s weeping women, the mother and the lover, Beata Maria Virgo Perdolens
and Dora Maar. I was aware that there was much to say to my mother and to Nothereal. But there was so much
other work to be done, and I had such a short amount of time. There was above all else the body, and the need to escape from it; and that need eclipsed all else. Biologists call this escape “death.” I realized I had to get out of there, and I told everybody. That if they didn’t do something pretty soon, no very soon, no, now, I was leaving. For a person like me who fears death rather than aging, oddly, the experience wasn’t, at least in this case, frightening.