There’s only one nurse attending to all the patients in the infusion room. You learn that it’s best to endear yourself to her. If she doesn’t like you, you tend to have a very bad day. If she decides that she wants to help you, as opposed to having to help you because it’s her job, the day goes much more smoothly. You realize that she’s seen human suffering every day for a long time, and has had to create a hardened shell in order to survive.
Knowing that you are going to be there for an extended stay, you let Jim equip your little bag with “keeping busy” items. He bought you a Walkman, which goes in the bag; you bring books on tape and a tablet if you want to write or sketch. Most of the time, you just sit and observe the workings of the room—the people coming, the people going—and think about what the other people who are hooked up to needles and bags are there for.
It’s a long day.
ANOTHER DAY OF INFUSION. You are all settled in and the IV is going. Jim has left to go to work. You think it is going to be the latest in a sequence of boring days. You know what the next week will bring—a hangover without the party.
But you’re wrong. It’s not like the last time.
Jim has e-mailed all your friends, alerting them to the fact that you are being infused; they show up on a prearranged schedule. People keep materializing. Everyone takes an hour and comes and sits with you. So most of the day, you are simply being entertained. It’s a wonderful surprise.
AT THE END OF THE DAY, you are finishing up, and you are waiting for Jim to pick you up. A short man with patches of reddish hair and a really bad comb-over, who has been hooked up to his IV for almost as long as you have, has been watching you hold court the whole time. Now all your friends are gone, all the other patients have left, and it’s just you and Mr. Comb-Over.
You turn and smile at him, sharing the pleasant, anticipated moment of being done, finally, with the day’s treatment. But his round face is scarlet with rage.
“Oh, I’m glad to see something’s wrong with you,” he hisses. “The way you acted all day, you would have thought you were here on vacation in the Bahamas.”
He is angry with you for finding something other than unhappiness and rage at this situation.
You have spent the day laughing with your friends, but that is how you diverted your attention from your problems. You made light of things, sure, but you always made light of yourself, not of anyone else. You cracked good jokes about your situation. You stayed sane because you allowed yourself to laugh. Now this person is angry that you were laughing—not at anything in particular that you were laughing about, but at the fact of your laughter.
You look right at him and say, “I bet that really pissed you off that I was laughing.”
“Yes,” he mutters, “it did.”
“Well,” you ask, “what do you have?”
“I have colon cancer.”
“I’m sorry to hear that.”
His face is still red. He stares at you and says, “This hospital did it to me.”
You think about this for a minute, and say, “No one did anything to anybody here. We are here because this is what we have to go through. You know, with your attitude, you are going to die.”
Silence.
“Your attitude,” you continue, “is what is going to get you through this, and if you have an attitude that is negative and blaming, then you will not have any energy left to put toward your recovery.”
You keep talking. He starts to listen to you only after he finds out what has happened to you. You don’t volunteer it. He finally asks you, and you tell him that you have had a massive brain hemorrhage that has resulted in left-side paralysis, and that they are still trying to diagnose it, but they felt that the chemotherapy was at least a cautionary treatment.
He’s shocked. He says, “You’re younger than my youngest daughter. I have four daughters, and you are younger than my youngest daughter.”
This seems to make him able to see the human side of the situation. You keep talking. He is now listening intently to you talk about changing his attitude and being more positive about recovery. He nods and even smiles a little.
His wife and daughter come over and hug and kiss you and say, “Thank you so much. This is the first time in almost eight months he’s changed his mood. He just needed somebody who was going through something as serious as he was.”
“Positive thought,” you say, “is all you have. Remind him when he needs a boost.”
They promise they will. They leave.
Over the Edge
LAST OF THE CHEMOTHERAPY TRIPS. Thank God.
You opt for a chair beside a man who is there having some type of strong antibiotic or superdrug to kill the infection raging through his body. His wife is there. You can see how upset and worried she is, and she fusses around him all day. He has obviously lost a lot of weight; he’s gaunt and an odd color of gray, very sick. You sense he’s not going to make it, and pray that you’re wrong.
It’s a very sad room.
There are a lot of stories within these walls. Some of them are victorious, some of them aren’t. You think again about the things you said to calm down the guy who was mad at your laughing. Not laughing today. Just trying to get to the end of the session.
You reach into your bag for your prenatal vitamins and swallow them with the cup of water Jim has left for you. You can’t wait to see him again—he’s your rock.
All in all, you really do hate coming here. The ride to the hospital is always somber. You fight back tears sometimes to spare Jim. Maybe Mr. Comb-Over had a point. You know what’s ahead for the next ten hours, and it sucks. Whenever you weep here, which does happen, you try to keep quiet.
AT THE END OF THE DAY you say a prayer of thanks, because you’ve finished all of the precautionary treatments.
Before you leave, you follow up with Dr. Jerk. He feels you need another treatment. Dr. Neuro concurs, because he’s still trying to figure out the cause. So it’s all been a mistake. You have to go back again next month for another treatment and you have to sign something and you can’t see what the nurse wants you to sign.
You lose it.
You have been happy and jovial through all the appointments, right up to today, when the finish line is in sight, but this time, at the end of the appointment, the nurse tells you the plan has been changed, and you completely lose it.
It’s like being told you’re uncured. Like being told you have to go back to hell. You have been robbed of completion. The finish line has been moved ahead. And everything you’re feeling feels worse because of the intravenous poisoning you’ve just had to endure.
You feel lied to. Anything anyone says isn’t real. Anything that sounds like a statement is really a question.
It’s not fair.
Who decides what’s fair, anyway?
You hear yourself screaming, like somebody else is actually doing it.
You hear yourself yelling profanities, telling her that you are sick of this shit and that you don’t want to do it anymore.
It really surprises Dr. Neuro, because you haven’t done that at all through the whole process of your injury. He’s completely taken aback.
Jim has materialized somehow. He calms you down, but it’s tough. He brings you downstairs to the coffee room. You hear yourself crying and crying, saying over and over again that you don’t want to do it—you simply can’t do it again. People are staring. You don’t give a damn. Let them stare, it doesn’t change anything.
You hear yourself, as if from a great distance:
Had it.
Had it up to here with the fucking medical community.
Only one goddamned thing I want from you bastards in your white smocks and that is to be left alone.
Jim fixes your gaze and says, “Don’t you want to pull yourself together? This is the day when you were going to make your trip to the office.”
Your friends at work.
You’d completely blanked that this was your day to go back
.
He always remembers these things.
“I don’t want to go.”
Like an exhausted child having a temper tantrum. That shrill, that desperate.
The Blockhead Club
YOU DO NOT, IN FACT, want to go back to the office. But Jim has convinced you that you must pull yourself together, because they are all expecting you there for a little visit. So you do.
The silent drive to your office. Pulling yourself together.
As Jim drives, the roads go by like nothing happened and you are just late for work.
YOU ARE NOW HOBBLING through cubicles that seem both familiar and part of another dimension, part of an arrangement in space that must have been invented for someone else.
One of your coworkers shows you “your” new office space. They’ve tried to decorate it as you would. But you’ve never been there. It’s a stranger’s office.
You don’t belong here anymore. You recognize the faces, but you realize that you will probably never, ever belong here again.
You put on a happy face, you don’t let anyone know what is wrong or tell them that you will have to do more chemotherapy. They are nervous and tentative around you, in part because of what happened, and in part because you simply don’t look the way you looked the last time you were there. You are on industrial-strength doses of steroids as well as a cocktail of other drugs, and your face is swollen and misshapen, like a pumpkin head. The skin is very taut and puffy and seems like someone else’s skin. The drugs literally make your face hurt; it hurts to smile, but you do it anyway.
Smiling should never hurt.
YOU TAKE A BREAK and Jim escorts you to the women’s room.
You stare into the mirror. Your eyes are little slits from the swelling; your cropped dark hair frames your face. The steroids also mess up your hairline, pulling it down oddly. It now extends to your cheeks and chin. You’re a great candidate for an exhibit at the circus: the bearded lady.
It’s a rectangular face now. You have literally become a blockhead.
You splash some water on your face and make your way out to see Jim.
“I’M STARTING A CLUB,” you say.
“That’s good. What’s it called?”
“The Blockhead Club.”
You decide to draft members with the same facial structure. Janet Reno, for instance. She doesn’t know it, but she’s the president of the club. She can keep all the blockheads in order. Jimmy Johnson, ex-coach of the Miami Dolphins, is included too; his hair and angular face might even get him into the Blockhead Hall of Fame.
Looking around the office, you and Jim launch the first blockhead alert. Before long, you both instantly know who has just, unknowingly, joined the club.
You laugh.
Thank God.
THE DRIVE BACK HOME. The roads go by like nothing happened, and Jim is just taking you back home from work.
You say, “I’m not going to be on chemotherapy for the rest of my life, like Dr. Jerk recommends.”
Silence.
You say, “We’re getting a second opinion.”
“You’re Incurable.” “I Want a Second Opinion.” “Okay, You’re Also a Pain in the Ass.”
YOU GET THE FEELING people at the hospital don’t really want you to get a second opinion from outside their system.
They put up a major fuss about transferring your (huge) file, and tell you there are plenty of doctors within the hospital who can review your case.
You don’t want a doctor from within the hospital.
Dr. Jerk, in particular, is uneasy about the whole undertaking, but when you insist, he authorizes a referral and tells you that you can send your records to a specialist at another hospital. The records are quite extensive at this point—they’re like a manuscript for one of those long historical romance sagas, and a good deal more difficult to get through. But you send them anyway, and set up an appointment with the other specialist to review them. You make sure that the records arrive early, leaving the doctor plenty of time to become familiar with your case.
THE HOSPITAL IS over an hour away by car. Jim is taking time off from work to drive you.
You arrive early, which is good, because you have to go through the whole process of being registered in admitting, and getting a hospital medical card, for your one-time visit. That chews up another hour.
In the doctor’s office, you and Jim wait.
Your records are sitting there on his desk, and you’re tempted to start reviewing them yourself to make sure you’re every bit as familiar with them as the new doctor will be when he arrives to see what secret notes doctors write but don’t share with you. You’re reminded of the Seinfeld episode where Elaine goes crazy trying to find out what her therapist jots down on that pad.
But you don’t peek.
WHEN THE DOCTOR, a trim, nervous-looking man with carefully combed auburn hair, finally arrives, you stand up and shake hands and say hello and sit down again and ask him what his initial take is on the records of your case.
And he says to you, “I haven’t looked at them yet.”
You close your eyes and take a deep breath to squelch your anger.
You and Jim are there solely for a second opinion based on your (now massive) medical file. Jim is missing work for this. You sent the records weeks ago. And the doctor knows absolutely nothing about you except that you have been referred to him.
Dr. Jerk the Second.
He’s actually trying to “read” these hundreds of pages right in front of you, sifting and glancing through them. He is shuffling through the dozens of folders for the first time right now, and creating his “second opinion” for you on the spot. You are going to feel extremely confident with this man’s thoughts on your well-being. Sure.
DR. JERK THE SECOND is younger than Dr. Jerk, and not, apparently, any more inclined to make waves than he is to read medical records. The safe option is to agree with Dr. Jerk’s treatment plan. And that is exactly what he does, without even so much as a physical evaluation. Yes, chemotherapy will be necessary for the rest of your life.
He’s done. But you’re not.
“Well,” you say, “my first opinion of you is that you’re arrogant. And my second opinion is that you’re a jerk. Thanks for absolutely nothing. I hope you still have enough of a conscience to realize that we shouldn’t be charged for this nonvisit, or for your nonopinion. But you may already be a complete zombie, like some of these other doctors, so I’m not placing any bets on your conscience actually existing anymore.”
End of meeting.
YOU AND YOUR HUSBAND have driven far beyond your home and worked your way through the alleys of another hospital in the hope of receiving objective advice from a doctor who did not know Dr. Jerk. In fact, you realize, every doctor “knows” every other doctor—through consults, conferences, and studies. They simply stick with each other’s diagnosis. It doesn’t matter what specialist you consult. You will never get an original opinion, because they will be basing their opinion on the original specialist’s notes. And when is one specialist going to challenge the opinion of another one?
Walking to the parking lot, you say to Jim, “I’m pissed. What a total waste of time.”
He nods.
He unlocks the car doors. He helps you into your seat. He walks around the car and settles in behind the wheel.
You both sit there completely dumbfounded that another human being could casually condemn you to chemotherapy poisoning for the rest of your life.
You say, “I don’t need the chemotherapy. Most likely I never needed it.”
He stares out the windshield toward the expressway.
“Whatever happened to my brain happened because of something I did before I had the hemorrhage. My intuition tells me that. I am absolutely certain of it, Jim. Once we get rid of whatever it was that caused the hemorrhage, we can let time heal my wound.”
He nods a little tiny nod and starts the car. He’s scared.
DR. NEURO SAYS h
e’s not sure he agrees with Dr. Jerk and that he would like you to see the expert on strokes.
“Dr. Renown,” he tells you calmly, “is so much more knowledgeable than I am about strokes. He can give us some insight.”
You can’t believe he said that. Dr. Neuro has an M.D. and a Ph.D. in neurology, and he humbly says someone else is smarter than he is. Your best interests are what matters. He’s not stuck in some diagnosis tug-of-war. He always speaks respectfully of the opinions of other doctors, but he honestly isn’t sure about this diagnosis.
You love Dr. Neuro.
DR. RENOWN is an older man, with thinning white hair, and his wise, kind eyes beam out from behind little wire spectacles. He has a gentle manner. The first thing he asks is, “What do you think happened to you?”
Well, you like his approach so far.
You explain that you’re here to see him because you are now scheduled for your fourth angiogram in six months and you’ve also been told you need to be on chemotherapy for life. Dr. Jerk’s opinion is that without it, you will end up on a respirator and die an awful death.
You explain that your intuition is telling you that you’ll have another stroke if you go through another angiogram—you just know your body couldn’t tolerate it. You also need an opinion on the chemotherapy, because you don’t feel it’s what you need. You feel you need time to heal, that’s all.
You tell him about Daisy, and about the drugs they wanted to put her on, drugs that would probably have killed her. How you knew the doctors were wrong then. And how you know Dr. Jerk is wrong now.
After listening, Dr. Renown puts your films up on the lighted board and shows you the progression of your healing. Then he says something that makes your heart glow.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 21