Personal Essay
Friday night.
Marty tells me he’s bleeding again, worse than before. He complains, “I’m afraid to wear khakis. The blood might stain them.” But I don’t want him to go to the Hilton in jeans–we’re picking up an old friend who’s in town for the National Broadcasting Convention. She and her new boyfriend are staying at our house for the weekend; I have activities planned for all of us.
I’m tired of our life being interrupted by this problem anyway, tired of dealing with doctors, tired of telling them there has to be a solution, that their diagnosis can’t be right. I’m especially fed up with all those urologists acting as if I’m a pain in the ass for wanting my husband to stop bleeding from his penis every time he urinates. They seem to feel that I’m a special burden, interfering all the time because I myself am a doctor.
But I don’t want to fight with them. That embarrasses him and gets him care from angry physicians. He wants me to be his wife, not his doctor. Besides, thinking back on the times I complained about doctors being difficult patients, about how they were unreasonable in their expectations or wrong in their self-diagnoses, I’ve vowed to try and forget I’m a doctor when he’s the patient. I’ve forced myself to think: They’re right; we’ll have to live with all that bleeding coming from his prostate gland. Nobody knows why it’s happening and there’s no cure. At least there’s no sign of cancer.
We’re finally at the point where we can rationalize living with this, trying to have as normal a life as possible. After all, it’s not as if prostate problems are rare over forty. Many of our friends have had biopsies to check for prostate cancer, though none of them have admitted to suffering from BPH (benign prostatic hypertrophy), which is the diagnosis Marty’s been given. That’s a far more common condition—but one considered an old man’s problem. Discussing BPH forces guys to imagine embarrassing examinations: doctors’ probing fingers in their rectums, pressing on swelling glands that wrap around the urethra like a donut around its hole, obstructing the flow of urine from the bladder. They don’t want to think about the treatment, either, often a trans-urethral prostatectomy (TURP), roto-rootering out the gland like a pipe clogged by a tangle of hair, a surgery that can lead to impotence.
Multiple doctors have felt my husband’s prostate and declared it normal size. His PSA, the blood test for prostate abnormalities, gives no indication of cancer. I’ve even been able to nag him into bending over and taking it up the ass for me, as he said with a grimace, letting me feel it myself, to check that no gravelly area of cancer has been missed. I remember thinking, He’s being silly, acting like this is a big deal, He ought to try a full gyn exam, and I never thought I’d ever do a rectal on him, and, thankfully: They’re right, it does feel normal.
One urologist explained the normal exam: “The hypertrophy must be like a donut with its hole closing up, all central.” Obstruction from BPH increases the chance of infection, which can lead to bleeding—Marty’s main symptom, and sometimes a big prostate bleeds with no identifiable cause.
That urologist refused when I asked for a prostate ultrasound to see if this donut-hole theory was true; he feared that a shadow of clot or infection would be taken for an area of cancer, forcing him into performing a dangerous biopsy on a non-cancerous but germ-ridden prostate. A TURP, he said, would also be too risky and probably not stop the bleeding.
After another painful episode of Marty standing over the toilet for hours throughout the night, unable to pass more than a dribble at a time, we convinced one doctor to spare us 11 pm trips to the emergency room. He gave us catheters for home use, two long, semi-rigid rubber tubes to snake up through his penis, bypass the obstructing clots, and let the urine out.
The first time Marty saw a catheter dangling from a nurse’s hand, the tube a depressing drab red, lubricious with KY jelly, his eyes widened, his breath shortened, and he almost fought the nurse off, saying, “Isn’t that one too big?”
She assured him that the smaller ones bend, sliding in less easily, but only the pain of a full-to-bursting bladder forced him to allow her to proceed. Then he watched; his face crinkled with dismay.
A short time later he was inured to catheterizing himself and to some extent, I’ve become inured to viewing him as a patient, not just my husband. And after more than four years of being told he has a prostate problem, it doesn’t occur to me to think The catheter goes in easily, that donut theory’s a bunch of crap.
Anyway, I get my way this Friday night; we join our friends for drinks and then dinner. When we come home there is a faint bloom of stain near his fly. “No one could see unless they were up close,” I reassure him. “And who got up close to your fly?”
Saturday morning
He’s bleeding pretty badly, passing clots every time he urinates even the small amount he manages to get out. The clots explode from him, spraying the back of the toilet and the wall with droplets of blood. Neither of us has gotten any sleep. I thought I was used to this, but I feel at the end of my rope.
“And now my back hurts on the left side, just about waist high,” he complains, pointing to where his kidney is. “Almost exactly where it used to hurt a bit when we first fell in love and I’d pick you up and swung you around.” He goes on to say that now it’s hurt for a few days; he just didn’t think to tell me. Even more than me, he wants things to be normal.
I react with a volatile mix of anger and anxiety at his mix of stoicism and concern. Suddenly, I can’t take him being in pain, or the worry about the loss of blood, or his continual problems. It’s been going on so long we’ve become accustomed to the bleeding little by little, the slow increase in frequency and severity creeping up on us.
My husband first noticed blood in his urine more than five years previously. When it started, we were living in Colorado; he’d just talked me into retiring early to write, and to help another of my best friends die of cancer. The local urologist, who always clumped into the emergency room in hand-tooled boots and a ten-gallon hat, was a colleague of mine. He put my husband on antibiotics to cover infection, then, went in through his penis with a diagnostic cystoscope. During this procedure, which allowed him to look only a little further than the bladder, he was certain that he saw blood coming from the left ureter, the tube that drains the left kidney. But when he injected dye up into both kidneys, x-rays revealed no evidence of out-of-place lumps or bumps in the urine collection system.
Marty and I discussed the possibility of looking directly up into the kidney, but unlike now, when curved fiber-optics have improved tremendously, the ureteroscope was a rigid tube and could easily have caused enough damage to force the removal of a kidney. Instead we compromised on host of studies: a CAT scan, an injected-dye study of the urinary tract (intravenous pyelogram, or IVP), an ultrasound, and tests of urine that my husband had to collect in huge bottles over twenty-four hours, saving every drop. The next day, we traveled to Denver for an arteriogram, an injection of dye into the artery that supplies the kidney to look for abnormal blood vessels like the kind cancers produce to feed their wild, rapacious growth. Everything was negative.
Another friend, an oncologist at the university, insisted that we see a world-famous oncologist specializing in the urinary tract.
The world-famous urologic oncologist did a rectal and said to Marty, “You have nothing seriously wrong with you, just a minor prostate infection. It would be a waste of my time for me to see you again.”
I didn’t keep my mouth shut of course; it was early in the game and I wanted to make sure that everything really was all right. The doctor shot me a dirty look when I explained my urologist friend had seen blood coming from the left ureter. He raised an eyebrow and looked at my enormously healthy-looking husband, who never smoked and never drank, who abused none of the medicines that could cause kidney tumors, who had no family history of genitourinary cancers, who was no longer bleeding, and said, “Well, that small-town cowboy must have been wrong!”
My husband, at least, was happy with that pronouncement.
A year later, repeat tests were still negative. Marty only bled a small amount once or twice during that year, joking that now he knew what it was like to menstruate. Each time the bleeding was declared another minor infection and, treated with antibiotics, promptly disappeared.
“Great,”our oncologist friend said about the normal results, “if it were cancer we’d see it by now.” More welcome reassurance.
When he started bleeding more and more over the next four years, he saw different urologists near our new home in California. One saw him every month, and every month found at least a trace of blood in his urine, but when Marty asked about further testing, said it was unnecessary.
This new back pain pushes me into action. We’re going back to the emergency room, and I’m going to insist that something be done. Leaving a note with the keys to my brand new car, we sneak out of the house at 6:30 am, leaving our friends to tour the city alone.
With the usually heavy city traffic absent at such an early hour, we get to the emergency room in only twenty minutes and, surprisingly, are taken right in–perhaps because even the hostile, gnome-like admitting clerk can tell that my husband is sick, really sick.
The intake nurse listens to the story, which Marty downplays so as not to seem like a wimp, and says, “You deserve a private room.”In the room, in a hospital gown that’s humiliatingly short, he gets to tell the story twice more: to another sharp-featured nurse, then to the ER doc, a competent and kind young woman, named, unbelievably, Dr. Hurt.
When the urologist comes in he gets to tell it yet again. A small, intense man with acne-scarred skin, this doctor’s seen my husband before. The last time was six weeks previously, when he gave us the take-home catheters and antibiotics and told my husband to have a repeat IVP when the bleeding stopped. The bleeding never did.
A few lab tests and a successful urination later, the urologist is anxious to send us home. He tells my husband, “The problem is due to using the catheter unnecessarily and thereby causing another infection. I’ll see you in the clinic on Tuesday. Only use the catheter if you can’t urinate at all for four hours.”
Marty nods agreeably, but since he’s even paler under the fluorescent lights, I refuse to leave. He looks like patients I remember, patients who were dying. The urologist seems to have no sympathy for the pain, for the fact that obstruction with a blood clot can come and go, or for our exhaustion. I demand more be done.
I get rewarded with a CAT scan and the doctor’s hostility. “After all,”he reminds me, since weekend CAT scans are a big deal, “you were trying to force me to do a prostate ultrasound which might have pushed us into a biopsy with uncontrollable bleeding.”
While Marty’s being x-rayed, I go to the cafeteria for coffee with our thirty-year-old son, who’s driven up from his apartment to help. We’re on our way out to the elevators when the doctor arrives, looking for us.
He’s apologetic, frightening me, since a doctor apologizing often means they’ve missed something big. “It turns out,” he says, “the problem is kidney stones.” Kidney stones were checked for, but never diagnosed. “Regretfully, one stone seems to have blocked the ureter, causing blood clots in the renal pelvis. The obstruction has destroyed half his kidney by backpressure. Not something new, not in the past few weeks,“he adds, which I take to mean: Not since I met him. It’s not my fault his kidney’ s badly damaged. The news is upsetting, but it’s also good, a problem that we can do something about. He says he’s glad I forced the issue.
I start to cry and, motioning to our son to stay back, walk with the doctor to the door. “You have to understand,”I sob, “We’ve been married for twenty-seven years. I don’t want to lose him, don’t want him to lose a kidney. We’ve been unable to enjoy life, travel, or even make love because of the fear that he’d bleed. That’s why I wanted you to try and fix his prostate, if that’s what it was.”
“I understand,” he replies, looking sympathetic.
Back in the ER he delivers the mixed news to his patient. Marty is immensely cheered by the news that his problems may have a solution, though he does grimace when the doctor says he’ll need a nephrostomy tube, a catheter that will go in through his back to his kidney, relieving the pressure until they go in after the stones.
Kidney stones often run in families but we know of no family history of stones. They’re a common problem; a really painful one, pushing down the narrow ureter to be excreted, and they can cause infections, but the main worry is, if non-painful and therefore undiagnosed, they can obstruct and lead to loss of kidney function. This is apparently what has happened. No wonder the doctor’s now sympathetic.
He sends us home with a scheduled office visit on Tuesday and a promise that he’ll set up the procedure sometime during the week.
We go home and lie to our friends, telling them that Marty has a minor infection. They’re too blissfully in love to concentrate on our problems. Besides, they’re leaving for LA on Sunday.
Monday morning.
Since discharge from the emergency room Marty’s has had about six hours respite from the bleeding, which I ascribe to all the IV fluids they gave him dissolving the clots in his bladder, but now he’s bleeding more heavily than before. He looks like a ghost.
“We’re going back. We’re not waiting for the Tuesday office visit.” I don’t add that I’m worried he won’t make it until then.
“But my back pain’s better!” he protests.
I instruct him to lie to the hospital staff.
Again the intake nurse, a new one with curly hair like Shari Lewis, takes us right in. Marty sits down, gets his blood pressure checked, and says calmly to the nurse, “I didn’t bleed for thirty-six hours.”He smiles reassuringly to demonstrate he’s not a problem patient.
I know how hospitals work: The squeaky wheel gets the grease. We’ll never get help if he doesn’t cooperate, if he makes light of the situation. I yell, “No, not true! You were up all night in the bathroom passing huge clots. I’m the one cleaning the wall behind the toilet! You’ve been bleeding like crazy!”
He clenches his teeth at his wife correcting him in front of the nurse. When we get into the room I lean over him and say, “I love you, but if you don’t tell the story my way we’ll just be discharged again, without anything happening.”
He’s too weak to argue. I get grumpy acquiescence.
The same urologist arrives. He’s mad at me again, too. It surprises me that he’s not nice, since he was so conciliatory by our discharge on Saturday. He acts as if I’m totally unreasonable and states firmly that the ureterostomy has been scheduled for Friday.
This time I explode, spraying the air between us with spittle, “It’s going to be done as soon as possible!”
His face set grimly, the doctor leaves. My husband, surprisingly, looks grateful.
Another nurse comes to say they’re taking my husband to the Special Procedures Unit for the invasive radiologist to put in the tube. I accompany him, but they won’t let me in the room. Returning to the ER, I run into Dr. Hurt, the same emergency room doctor who was on duty Saturday.
I’m shaking with anger, ashamed to feel out of control and unprofessional in a hospital, a setting where I previously played the role of competent and in-charge. Dr. Hurt stops to talk to me.
“This is a doctor’s worst nightmare!”I cry, wiping my nose with the back of my hand, “My husband’s going to bleed to death and I’m powerless and no one will do anything!” I’m embarrassed to hear myself say I want to strangle the urologist.
“Don’t worry,” she replies, putting a hand on my shoulder. “I’ll call the urology department and see if another doctor will take over your husband’s care.” At last I have a colleague.
She returns in a few minutes and says that a Dr. Deshadaravian will come.
I go back through the maze of corridors to the Special Procedures Unit. Marty’s not there, he’s now in Ultrasound, where I pull aside a curtain and find four people clustered around his stretcher. I immediately think: Too many people. Something’s really wrong.
The technician has the left kidney directly under the Doppler probe. The monitor screen’s computer-simulated color shows arterial blood flowing away from the probe like beautiful blooming flames. This is no blood clot. It’s a tumor.
“I looked at the CAT scan and it didn’t look like a clot,”the radiologist says, disagreeing with the radiologist who read on Saturday, “I wanted to check it out before I stuck a needle in and breeched Gerota’s fascia.”
It’s good that he’s so cautious. Gerota’s fascia is a thin but tough layer of tissue that covers the kidney, isolating it from the rest of the area in which the kidney resides, a second enclosed body cavity behind the abdomen itself. A tumor that doesn’t extend through the fascia has a good chance of not having spread far; it has a markedly different prognosis than one that extends beyond the kidney capsule. Sticking a needle through Gerota’s fascia into the tumor could, on withdrawal, seed cancerous cells along the needle track.
I look at the hypnotizing color display on the monitor, thinking: How could it have been missed on the ultrasound six months ago? On Saturday in the CAT scan? If Saturday’s radiologist had been on today, would he have just stuck the needle in? But then optimism unexpectedly rears its head. This radiologist doesn’t know it’s been there for five years. It’s probably not malignant. The situation’s worse than if stones were the problem, but I’m uncharacteristically cheerful.
The radiologist isn’t cheerful—instead he’s annoyed, refreshingly annoyed. At last someone’s not angry with me; he’s angry at the misreading on Saturday. He says, “We’re going to get to the bottom of this today! We’ll get an MRI and make sure it’s a solid tumor.”
Marty is whisked off to the MRI suite and given a little Valium for his severe claustrophobia. I bend over the stretcher, jokingly tell him, “You know I love to have MRIs! No one can bother you when you’re in that tiny little coffin-like tube!”
“Not funny,” he replies.
The MRI definitely shows a solid mass four centimeters long, localized to the kidney, but no other abnormality. The radiologist throws in a CAT scan of the chest to look for spread of the tumor. It’s negative. As it should be with a benign tumor, I think to myself.
Back in the ER we meet Dr. Deshadavarian, a melancholy appearing, narrow shouldered man with gray hair who looks ten years older than my fifty-five year old husband. He’s actually a bit younger, and a refreshingly calm, kind presence. After hearing the whole story and examining his new patient, he states he will arrange for surgery. Marty’s kidney needs to come out, not something unexpected with a four-centimeter mass present.
Then he looks at the blood clot filled urine in the bag that hangs from the catheter tube and says, “You’ll go home with the catheter. We’ll do surgery within a week or ten days when we can schedule it.”
Marty’s is in shock, obviously frightened at the news that he definitely has a tumor, but manages to nod. He doesn’t want to believe things are so serious, that he needs anything immediately. If the doctor says wait, he’s willing to go along.
But once again, this game plan’s not acceptable to me. It occurs to me that, perhaps, we should go to another hospital. But starting over will take more time, and this is already the third urology department we’ve been to in this area. “He’s staying right here,” I insist. “You’re operating as soon as possible. If you wait a week he’ll bleed to death. At the very least he’ll need transfusions and risk hepatitis or HIV infection.”
Dr. Deshadavarian’s shadowed eyes widen; he pauses for a minute. I hold my breath, then let it out an audible sigh when he shrugs and says, “Okay, he stays. We’ll operate as soon as we can. I’ll see if I can get Dr. Thomas, the head of the department, to operate with me since I understand that you had a problem with the previous caregiver.”
I tell him if the urologist I just fired is a good surgeon and can assist more readily than Dr. Thomas, we certainly won’t let our disagreement stand in the way.
“And,” I add, “I want to stay in the hospital with him overnight.”No problem–they’ll arrange for me to have a chair which folds down into a bed.
Surgery is scheduled for Tuesday evening, after they’ve completed office hours and all the previously booked surgeries. My husband grabs my hand, only reluctantly letting go as he is wheeled out of the emergency ward upstairs to a room.
Monday night
At home I thought our queen-sized bed was too small to comfortably hold the two of us. Here in the hospital, I’m glad to lie on a single-patient stretcher with my head on my husband’s chest.
Tuesday morning
In the morning I leave him watching the Olympic re-runs and the local traffic report (“At least I don’t have to fight that to go to work,”he mutters) and go down to the cafeteria. I bypass unreal appearing Danish and muffins reeking of artificial vanilla to get the kind of breakfast I haven’t enjoyed in years: home fries and real bacon, not the soy-based kind I eat at home. I always liked hospital cafeteria food for its reckless, delicious, saturated fat bad-for-you qualities. Fits in with the level of comfort doctors and nurses gain in the face of human disaster; like walking up to death and shaking hands.
The coffee, however, turns a disgusting shade of gray when I add milk. I’m not used to bad coffee anymore. Since Marty is NPO, nothing by mouth, I don’t return to the room with my food. That would be cruel—he may be exhausted and sick, but he’s still hungry. Instead, I eat at one of the Formica tables, sharing the large, mostly empty space with an Aztec-faced woman quietly reading a pocket-sized bible.
As I’m clearing my tray into the waste receptacle a young man enters. I can tell that he’s a doctor, a god amongst mortals; his confident upright stride gives him away. He moves as arrogantly as a galleon on the high seas, white coat billowing behind him like a mizzenmast sail. I wonder if I was that obvious when I was in training.
In the up elevator, I realize that my time away from working as a doctor hasn’t made me uncomfortable in the hospital. The long hallways, black-scuffed by the rubber edges of stretchers, feel like home. I have no problem walking into rooms marked Staff Only and getting plastic spoons, reading in the dim light of early dawn out in the hallway wearing no bra under my sweats, or listening to the moans of other patients. I cherish the illusion that I’m somehow in charge.
Marty is still watching the swimmers slice through the water, efficiently using the long muscles of their perfect bodies. A competitive swimmer himself in high school and the army, he still has that same outward appearance of perfect health: broad shoulders, slim waist, narrow hips. But the bright red bag of urine hanging beside the bed gives him away.
The children come to spend the day with their father: our son, muscular from weight training with his dad, and our daughter, her elegant slenderness turned into fragility by fear. They still can’t emotionally grasp why they can’t help, can’t even give blood to their B negative father.
Our son juts his jaw belligerently, insists, “I’ll donate a kidney so that Pop will still have two!”
I explain again what they already know, “Your blood types are incompatible; a transfusion or transplant from you could kill him sooner than any cancer.”
“Shit,” he grumbles, “We’re his kids; we should be able to do something besides sit around and act positive.”
I just wish the doctors would get to the surgery sooner than the 5:30 scheduled time so that his bleeding will end. Though the surgery will be extensive, with removal of his entire left kidney, the fat and lymph nodes around it, and the ureter with a generous cuff of bladder included, he really shouldn’t lose much blood from that.
That’s the planned surgery, anyway. Dr. Deshadaravian believes that the scans look like a transitional cell carcinoma of the renal pelvis, a cancer of the sheath that lines the entire urine collecting system. The area at risk for downstream spread includes everything all the way downstream. After this surgery they’ll have to repetitively look for cancer in the bladder.
Transitional cell cancers are caused by smoking or exposure of the kidney tissue to other toxins filtered into the urine. “After all,” I explain to my children, “that’s what the kidneys do–they remove poisons from the body by flushing them out.”Marty never smoked but Dr. Deshadaravian thinks perhaps the problem could have come from second-hand smoke when he was young, the small amount of ibuprofen that he took for athletic injuries, or exposure to agent orange and other biochemical agents while in the army.
Lulled by the presence of his family, Marty has suspended his worry; he’s placed all his trust in the surgery and in me to handle the minute-by-minute decisions. Happy with the good care provided by his new nurse, Gustavo, a charming, jovial young Brazilian built like a muscular Santa Claus, I leave him and our son, allowing our daughter to take me home for a shower and change of clothes. I return to find I’ve missed the doctor, who made a sooner than expected pre-op visit.
It’s been a pretty good day for Marty despite the fact that he’s hungry and thirsty and has received no anti-anxiety drugs. Two friends have visited, the last allowed in to see him. They laughed and joked, telling him he looks like Waldo from Where’s Waldo. My husband is handsome and vain; they’ve never seen him with his glasses on before. At least they keep him from focusing on the evening ahead.
The kids leave us alone for a little while. As soon as they’re gone he drops his cheerful façade. “I’m not afraid of the surgery,” he tells me, “I’m afraid of what comes after. What will our life be like?”
“We’ll live better than now, while you’re bleeding,” I insist. “We’ll travel; we’ll make love.” And then I add a bit of gallows humor, the kind of joke that people long married make, the kind that’s incomprehensible to outsiders, “It’s not fair. I’m supposed to die first. Don’t you dare welsh and leave me alone.”
Tuesday afternoon
Sudden pain hits him, the first severe pain he’s had. He sits upright, rocks in the bed, uncertain if the catheter in his penis or a distending bladder is the problem.
“Oh, oh, oh!”he yells. The children have never seen him hurting; we’ve kept his problem as private as we could.
I draw the curtain as our daughter flees the room, trembling so badly she can hardly move. She knows her father isn’t ready for her to see him naked.
It isn’t the catheter irritating his penis. The entire system’s blocked by huge clots, like bloated leeches in the clear part of the tube. Suddenly, his bleeding has accelerated and nothing will stop it but the surgery. He could bleed to death into his kidney. We ring for the nurse; when no one comes I run out to the desk.
Gustavo is on the telephone. He interrupts the call to follow me into the room. Marty’s now standing, shaking in pain, our son beside him.
“The catheter’s obstructed!” I say, “His bladder’s filling up with blood!”
Gustavo rushes out to call the doctor; I disconnect the catheter to extract the occluding clot. It won’t come out. Gustavo gets what I need to remove the catheter, which allows a small amount of pressure relief. A new catheter will have to be put in.
Before Gustavo can insert a new one, they come from the operating room to take my husband to surgery. The orderly won’t wait, so he’s taken away in pain, hugging us one last time.
Our children turn to me. Old as they are, they still want to hear a tale of how their father will undoubtedly be okay. First I clean up the blood that was spilled when we took the catheter out. Housekeeping seems in short supply and the floor is still dotted with the same old spots that were there when we arrived on Monday, but I know Marty will be upset if he returns to find stains from his own blood drying on the linoleum.
The three of us go down to the cafeteria, where I can focus on feeding them now that my husband’s in someone else’s care. The food nauseates me.
I talk to the kids for a long while, hoping they won’t hate me if the reassurance I give turns out to be false. “Go home,” I insist, not confessing that I don’t want them to wait with me. If there’s bad news I want to tell them after I’ve had a chance to absorb it myself. I’m still Mom.
Maybe I’m doing the wrong thing, maybe I’m taking away from their position as adults, I think. But I feel selfish; I want to be alone without worrying about them for a little while. I convince them to go. “The best thing you can do for us,” I say, “is to go about your normal activities and enjoy life. That’s what we worked all our lives for, anyway.”
“There’s no reason to sit with me. I’m fine and Pop won’t remember you being there after the surgery. He’ll be drugged, it’ll be after midnight, and I’ll be there to take care of him. I promise I’ll call you and tell you he’s okay.”
Back up in the room I see the stripped black mattress gleaming dully in the fluorescent light. The sight makes my heart pound: I insist on getting linens. Gustavo helps me put the sheets and blanket on when I tell him how important it is to me. Bare, empty beds are for the dead.
Tuesday night
I’ve been reading Frances Maye’s “Under the Tuscan Sun,” an easy book to concentrate on, though I have little patience for her recitation of the horrors of renovation. It’s good to have something to read, to quiet the song that keeps running through my head.The chorus, “Button up your overcoat, when the wind is free. Take good care of yourself, you belong to me,” repeats in short bursts, but it’s the ending of the little-known opening verse that really gets to me:
…Goodness, but I’m afraid,
Somethin’s gonna happen to you!
You got me hooked, and how,
I would die if I should lose you now!
Any thought I have of napping is effectively eliminated by that damn cheerful music.
Dr. DeShadaravian finally comes to our room a little after midnight. “The surgery went fine; he’ll be back from the recovery room soon. He only lost about 125 ccs of blood. That’s about half a cup. But,” he continues, smoothly, “we had to transfuse him anyway because there was so much blood in his bladder.”
I hold my tongue. This is one of the things that most concerned me during the wait from admission to the start of surgery. Now we’ll have to fret about hepatitis and HIV infection. That’s the trouble with too much knowledge—makes it hard not to move quickly on to the next worry. I focus on being glad he made it through surgery and only needed one unit of blood. I don’t allow myself to say: If you’d discharged him, he’d have bled to death.
The doctor tells me that the tumor was not transitional cell as he had expected. Instead, when sliced through on the specimen stand in the OR, it had the typical appearance of a renal cell carcinoma: psychedelic yellow-orange bands running crazily through a ruddy mass.
The most common malignancy of the kidney, renal cell carcinoma is diagnosed most often in men in their fifties—Marty’s age. Usually picked up by blood in the urine or, more ominously, a mass in the abdomen or weight loss and wasting, renal cell tumors, like transitional cell, are directly linked to smoking, obesity, hypertension, diuretics, anti-inflammatory use, and environmental toxins. They’re inversely linked to consumption of fruit and vegetables. Marty’s always been a carrot- and fruit-o-holic and his link to the risk factors is weaker than most: a chain-smoking mother, perhaps the high level of pesticide on his fruit during the careless ’50s, and that exposure to Agent Orange and other biological weapons in the army.
But the good news is that, despite the long-missed diagnosis, there is no sign of spread into the fat around the kidney or any of the lymph nodes. We’ll have to wait until at least Friday for the pathology to confirm it is stage I, localized to the kidney, possibly cured by the surgery alone.
Wednesday morning
Marty’s hungry but not allowed to eat. He’s spent a surprisingly comfortable night because the epidural catheter placed in his back for surgery was left in for post-op pain relief. With the ability to inject a bolus of morphine as needed, his pain hasn’t gotten out of control. Besides, the drugs from the recovery room linger, anti-nausea medicines that allowed him to sleep through the hourly checks and mechanical beeps and chirps the pumps attached to him emit.
Without the benefits of medication, I’ve been dozing off and on. I’ve chatted with the nurses several times, remembering how sometimes, in the middle of a night of constant work, I hated everyone in the world who was asleep.
Aside from pump adjustments and vital sign taking, our family is determined to do what my husband wishes, take total care of him. No one takes care of patients as well as those who love them, I think. This is the way it should be. Anyway, the nursing shortage is reaching crisis proportions; the morning staff has complained of being asked to come in for extra shifts. There aren’t enough hands to make sure every patient is comfortable. No one, not even a doctor, can afford to leave a loved one unattended.
Yawning, I walk down the halls to the cafeteria for breakfast, looking at the artwork on the cream-colored walls. The hospital has some interesting pieces, but I think their money would be better spent on carts that didn’t squeak and rattle in the night.
Friday
The days have already settled into a routine of sorts; a room feels comfortingly familiar. I stay every night, since I’m too full of regrets and concern to sleep well anyway and since I hate the thought of being alone in our bed at home. Our son spends a few hours at the hospital during the day, allowing me to run to our house, our daughter visits in the evening so her brother and I can have dinner. They’ve encouraged their dad to prevent pneumonia by expanding his lungs with a little gadget that measures the amount of air sucked in and by assisting him in getting up in the chair the morning after surgery. The encouragement was needed—deep breathing hurt. Now he’s walking short distances in the hall, determined to get home as soon as possible.
The toughest time was Thursday, when the epidural catheter came out. Surprise! Pain, which the efficiency of the catheter lulled him into believing would never be present. But now he’s down to oral Vicodin only, a David of a medication against the Goliath of a surgery that has left nearly a foot of staples running diagonally across his belly.
He’s eating ravenously from the food we bring in to replace the inedible, bland patient diet. I buy Egg McMuffin clones from the cafeteria and Thai noodles from a local restaurant. Hospitals just can’t seem to make healthy food tasty.
Our daughter arrives, grinning from ear-to-ear. She’s figured out what she can do to help. In her hand is a huge shopping bag marked with the logo of a famous local chocolatier. Inside are boxes and boxes of truffles for the doctors and nurses. “I remembered how you indoctrinated us with a basic fact of hospital life,” she says. “The quality of care is directly proportional to the amount of candy given.” Grabbing a couple of boxes, she heads to the nurses’ station. One box is specially marked “Gustavo.”
Dr. Deshadaravian comes in to say goodbye. If things continue to go well, we’ll be discharged in the morning.
Monday morning
After a quiet weekend at home, Dr. Deshadaravian calls with mixed news. The pathology has returned. The tumor is definitely not benign; it is renal cell carcinoma. But it is low-grade, the cells not far from normal, and despite the five years that have passed from the first symptom, it is Stage I, no sign of spread beyond the kidney. Marty has an eighty percent or better chance of being cured. He needs no further treatment at present, but over the next five years will periodically be having tests to check for recurrence of the tumor.
The difficulty for us, of course, will be in believing the tests.