Dreaming Out Loud, Chapter 32
Here is Chapter 32 of Dreaming Out Loud, the book about my mother’s stroke.
Lung cancer. These words frighten me. Hamilton Jordan, Jimmy Carter’s chief of staff as well as a well-known cancer patient, once remarked that the three scariest words in the English language are: “You have cancer.” He may be correct.
I cannot help but think how terribly unfair life has been to my mother. She was afflicted with breast cancer and fought it off. Fortunately, the doctors discovered it early. A series of radiation treatments and a medication called Tamoxifen prevented a recurrence, but then came the stroke. Now, she faces an aggressive form of cancer at a time when she is so weakened I wonder whether she can withstand chemotherapy.
In the wake of this startling discovery, we stand around the examination nook with our mouths hanging open. Dr. Old School beats a hasty retreat after he breaks the news. I had hoped he would turn to Paula and say, “now, wait a minute, little lady. Let’s not jump to any premature conclusions. The x-ray shows a mass, but that doesn’t necessarily mean it’s cancerous. Let’s take things one step at a time.” He does not say these things. He turns off the x-ray light, snatches up his film, and shuffles away without further comment. A soothing bedside manner is not among the tricks he learned in the halcyon days of practicing folk medicine.
The next hours pass in a blur. We are so exhausted from sleep deprivation and so emotionally frazzled we exist on automatic pilot. Only mom appears relaxed.
I cannot fathom her attitude. She exhibits the same lack of emotion she displayed when she learned Hortense had died. It is as though no problems exist; nothing is to be feared. If she ignores something, it will go away.
The on-call physician eventually lumbers back to our nook and begins the paperwork to admit mom into the hospital. He pages the pulmonology and oncology departments for consultations. Sitting on a stool far too small for his gelatinous body, he hunches over a stack of forms and charts —hardly a difficult stretch for a figure so hunched over in the first place.
Nurses scurry back and forth in service of the ancient doctor. I have not brought my power of attorney paper with me, but he nonetheless allows me to sign forms admitting mom into the hospital and authorizing a battery of tests to explore the nature of the mass. We must accomplish these tasks with all deliberate speed, for time is of the essence. We need a treatment plan, and we need it now.
I marvel at how quickly an apparatus is put into place. Mom’s case must be one of the more interesting to come through the doors among the garden variety broken bones, bruises and scrapes, and household accidents that regularly fill up the waiting room. I watch the faces of the staff as they yank the quasi-curtain open and closed throughout the rest of the night and into the morning hours. They are curious, pitying, even solicitous. Whatever they are, they are not bored. Most of the time, hospital personnel strike me as bored, but we have attracted attention because we have blown the bell curve of cases they usually see.
Paula is unhappy with Walton Regional Medical Center as the site for mom’s cancer treatments. “It is one thing to bring her here in the ER for pneumonia, but I think she should be treated for cancer in a better hospital.”
I shrug. “Okay. What do you recommend?”
Paula has worked as a practice manager with Piedmont Physicians Group in Atlanta for almost six years. Although technically not an employee of Piedmont Hospital, one of Atlanta’s premier health care facilities, she is intimately familiar with the hospital’s doctors, staff, and facilities. If she believes that Piedmont Hospital is the best place to go, I will defer to her judgment.
Unfortunately, mom cannot be transferred to Piedmont right away. She must receive a referral from her primary care physician, Dr. Carr. It can take several days before they have a bed available on the oncology unit. In the meantime, we agree to leave her in Walton Regional and allow their doctors to perform a needle biopsy. If we can arrive at Piedmont with a definitive diagnosis in hand, perhaps we can commence a speedy course of treatment. No one has told me anything, but I have the impression we must get cracking. Masses grow larger every day, and daylight is burning.
I have telephone calls to make, but I am punch drunk from lack of sleep. Paula needs to call the school and tell them Shelby will not be there today. She also plans to take a personal day off from work. Our lives move on; we must plan accordingly.
After mom is moved upstairs into a room, we bid her goodbye with promises to return in the afternoon. She is groggy from lack of sleep and the multiple doses of medication flowing into her bloodstream; she does not protest as we depart.
We arrive home to find Shirley vacuuming mom’s bedroom. “Miss Laura hates the vacuum cleaner, so I has to vacuum when she ain’t here.”
When we tell her of mom’s predicament, Shirley is horrified to learn of our choice of the Walton Regional Medical Center. “Oh, no, Michael. You ain’t put Miss Laura in no Walton Hospital. Please tell me you ain’t.”
“We had to, Shirley. She was in the emergency room last night because she couldn’t breathe.”
“They kill you in that place, Michael. I done tole you that.”
“We’re going to transfer her to Piedmont Hospital in Atlanta, but it’ll take a few days to get it worked out.”
Still shaking her head, Shirley finishes her chores. “C’mere, Mister, we gonna get us some food, little darlin.’”
It is time to place the call I have been dreading. I am the harbinger of doom in our family; I never seem to call my blood kin unless I have some tragic news to share. Extra, extra, read all about it: Breast cancer, a stroke, a pulmonary embolism, lung cancer — let me fill you in on the juicy details. Good old Mike, Mister Happy Go Lucky.
Beware of receiving a telephone call from Mike. Nothing good can come of it.
My first call is to the long-suffering Polly. She listens without comment and does not press me for details. This curious lack of inquisitiveness alone tells me more than she ever could about the depth of her concern. Polly and Laura lost their father to lung cancer. It is a serious, sickening diagnosis.
Once again, as happened when mom’s life initially entered in its twilight phase, plans are made. Friends and family are called and e-mailed. Travel arrangements are finalized. Conference calls and e-mail updates become the standard.
In the meantime, a team of physicians at the Walton Regional Medical Center descends on mom with plans to perform a needle biopsy. They must learn more information about the mass. Dr. Lance Knecht leads the team, but he is assisted by a pulmonologist, Dr. Shaddra Tongia, and a pathologist, Dr. Jeff Cohenour. The day after mom enters the hospital, they perform the procedure.
The pathology report is inconclusive. “Since there is no definite evidence for the presence of tumor in any of the four needle biopsy segments,” Dr. Cohenour writes in the report, “additional biopsies of this large 10 cm. mass which intimately involves the upper right and middle lobe bronchi should be obtained.”
Paula has enough experience in the medical field to understand the report. She is furious. Standing in the lobby and waving the report in my face, she is already planning our next move. “They fucked it up. They fucked up the biopsy.”
She reads from the summary. “It says here: ‘A definite diagnosis of tumor cannot be made on this material including the recuts and special stains.’”
I nod. “So what do you suggest?”
“Like I said before: we should check her out of the hospital now, today, and get her in to see Dr. Carr. Let him refer her to Piedmont and let’s get cancer specialists on the case. They can perform a bronchoscopy and find out for sure what this is. I’m sure it’s cancer, but we need to know more about the type so we can know how to treat it.”
“What’s a bronchoscopy?”
“Philip can give you all the technical details, but basically it’s when the doctor sticks a tube down your throat and into the lung. He can get tissue samples that are much more reliable than a biopsy.”
I wince. “It sounds painful.”
“She’ll be out with a general anesthetic the whole time. They know what they’re doing at Piedmont.”
“All right, Paula.” I inhale. “Let’s tell mom the plan. Unless she strongly objects, we’ll do it. I’ll call Dr. Carr’s office after we see her and we’ll try to get her into Piedmont today.”
Despite the grim prognosis for mom’s recovery, I feel marginally optimistic. At least we have a plan. I always feel better when I know what the future holds, even if it is not an especially bright future. A plan means we can do something, which is decidedly better than doing nothing. At least that is true most of the time.
We ride the elevator to mom’s hospital room on the second floor. When we step inside, the ubiquitous television is blaring. Shirley stands next to the bed. Mom looks up at us, but she is groggy, probably from the cocktail of drugs flowing through her veins.
“Hey, there, Michael, Miss Paula. I was just sayin’ to Miss Laura how I expect you’d be here any time now.”
Mom nods. “Yef, anytime scootch.”
Paula kneels beside the bed. “You’re pretty sleepy there, Laura.”
“Yef. Purty sleep hair, Laugh.”
Paula stands and examines the IV bag.
“I brung some pretty flowers for Miss Laura. I got ‘em at WalMart. I don’t care what nobody says, WalMart ain’t a bad place for flowers.”
Shirley almost fools me at first. As I stoop to smell the flowers, I smile. Although I am no connoisseur of plants, I know a plastic arrangement when I see one. Of course, it’s the thought that counts.
Paula pulls a small chair over next to the bed, sits, and takes mom’s good hand in her hand and leans close so mom can hear. “I know you’re a little out of it right now, lady, but we need to discuss something with you, and it’s important.”
Mom can barely keep her eyes open, but she nods, knocking her glasses askew. Paula reaches up and fixes them.
“Thank shoe, Shirf.”
“You’re welcome.” Paula clears her throat. “Mike and I have been talking about your treatment, and if you agree here’s what we’d like to do.”
She quietly, confidently, patiently explains the need to visit Dr. Carr’s office and move on to Piedmont Hospital. Wisely, Paula does not rant about the deficiencies in the pathology report. The explanation requires less than a minute, but it is a clear summary of our plan.
When Paula has finished speaking, mom nods her assent. “She’s scootch for this one’s scootch.”
“That sounds like a good idea to you, then, Laura?”
“Yef, Miss Shirf.”
“All right then.”
Shirley is exuberant. “Oh, thank God an’ Jesus. I sure want Miss Laura outta this place!”
The best laid plans of mice and men seldom work as they are designed. We hoped to spring mom from the Walton Regional Medical Center that same day, but paperwork delays and scheduling conflicts with Dr. Carr’s office force us to wait yet another day. When we finally roll mom into her doctor’s office the following afternoon, she is exhausted from the tests, the discharge, and our car trip.
Dr. Carr’s nurse, Jessie, greets us as we enter. “Well, hello, again.” She kneels and gently touches mom on the left arm. “We’ve missed you around here, Miss Laura.”
Mom raises her eyebrows as if to say, oh, yeah? Really — you missed me?
“And who’s this pretty lady?”
“This is Paula. Paula, this is Jessie, the nurse who has been so good to mom.”
Jessie and Paula shake hands.
Jessie commandeers the wheelchair. “We’ll get you into an examination room and Dr. Carr will take a look at you shortly.”
Paula steps in. “We really just need a referral. Once we have that in hand, we’ll drive her right over to Piedmont Hospital.”
Jessie nods over her shoulder as she pushes the wheelchair into an examination room. We trail behind. “I understand. Dr. Carr just wants to see her for a moment.”
Jessie is as kind as she was during our first visit — all smiles and playfulness with mom — but her voice is not as loud or as animated. She knows about the grim diagnosis and the uphill battle we face. I see the troubled glances she shoots at Paula and me when she is standing outside of mom’s line of sight. The empathy beats off of her in waves. In some ways, her earnest, well-meaning pity bothers me almost as much as anything we have yet encountered. I suppose the pity can be appreciated on an abstract level, but the fact that mom is suffering from a condition that causes health care professionals to pity her is deeply disturbing.
After she has finished taking mom’s blood pressure and recorded various bits of vital information on the chart, Jessie stands to leave. “There’s a fold-up metal chair behind the door. I’ll see if I can find another one.”
Paula raises her palm. “That’s okay. I prefer to stand.”
Jessie looks dubious, but she nods and leaves the room, gently pulling the door behind her.
“Remember her, mom? Jessie was one of the good ladies and fine spiritual advisers you were so enamored of during our very first visit to Dr. Carr.”
Mom turns her head and looks up at me, befuddled at my nonsensical remark. “This one is sure scootch scootch.” She tries to ask what I am talking about, but the procedure requires far too much effort. She simply is too tired to listen to my jibber jabber. The allusion to an earlier, happier time is lost on her.
Dr. Carr quietly steps into the room less than five minutes later. He looks exactly the same, right down to the hush puppy shoes he wore during our initial visit. Mom does not compliment him on his shoes or, for that matter, any part of his nondescript wardrobe.
In fact, she is practically asleep. She seems to be in danger of sliding from the chair. Her head is droopy and her eyes are half lidded. She will respond to questions, but it seems more than she can achieve to form whole words. She has dropped back into her old pattern of substituting “scootch” for a word she cannot think of immediately.
Without talking to Paula or me, Dr. Carr conducts his examination. He listens to her heart and lungs. He looks into her eyes, ears, and throat. He presses parts of her body with his hands. He frequently looks at notes in his chart. No one, even mom, speaks. Finally, he looks at Paula and me.
“So you want to have her admitted into the oncology unit at Piedmont.” It is not a question.
“I know many of the doctors there, and I believe Piedmont has some of the best oncologists in the state.”
“I agree.” He turns and scribbles something in the chart. “I have staff privileges at Piedmont, so I will make the call right now. How will you get here there?”
Paula is already reaching for the doorknob. “We’ll drive her. We’re on our way now.”
Piedmont Hospital is a prominent health care facility situated on a 26-acre campus on Peachtree Road in the Buckhead section of Atlanta. Founded as a 10-bed sanatorium in 1905, today it offers more than 480 beds and provides some of the best medical care available in the southeastern United States. It is not the only first-rate health care establishment in Atlanta, but Paula is familiar with then place, and that is good enough for me. At Piedmont, mom will have access to the best treatment medical science can offer.
We arrive about an hour after we leave Dr. Carr’s office. The check-in process goes as well as can be expected. Even so, several hours pass before mom is wheeled into Room 231. She seems more alert than she appeared in the Walton Regional Medical Center, but her attitude remains far more nonchalant than I like to see.
During the next week, we develop a routine. Paula and I work at our respective jobs during the day. We meet at a fast food restaurant for a quick dinner, after which we set up a vigil at mom’s bedside until about 11:00 p.m. We depart for home, arriving around midnight. After suffering through a night of fitful sleep, we repeat the process the next day.
I discuss mom’s situation with my cousin, Dr. Phil Mead, at least once a day, sometimes more. He offers to speak with any of her health care providers if I need him to do so, but apart from soothing my frazzled nerves and translating medical jargon into easy-to-understand English, he can do little for mom. Perhaps his most useful task is to call Polly each evening so the matriarch, in turn, can disseminate the latest news to family and friends via telephone and e-mail.
The doctors, nurses, and other health care professionals poke and prod at mom, sticking her with needles, performing a bronchoscopy, and running a CT scan. Mom constantly complains about the invasiveness of these procedures, but they provide us with a complete picture of her condition.
The picture is dismal.
I will never forget where I am when I learn the news. It reminds me of the clarity that surrounds traumatic historical events. People of a certain age remember where they were when they learned of the Kennedy or King assassinations, the shooting of President Reagan or Pope John Paul II, or the terrorist attacks of September 11, 2001. Nothing focuses one’s attention like hearing devastating news.
I am behind the wheel of my Ford Taurus, stuck in the notorious traffic of metropolitan Atlanta, on my way to the hospital after knocking off from work. A few minutes earlier, I spoke with Paula. She is finishing up a project at her office, and it will be at least an hour before she arrives at Piedmont. Mom is alone in the room when her oncologist, Dr. Eric D. Mininberg, makes his rounds.
He has been briefed on mom’s aphasia and apraxia, and I have left my cell phone number with the on-duty nurse. So he will not have to repeat the information, he calls me on my cell phone to talk with mom and me at the same time. He knows I have a Power of Attorney, so he is not betraying the concept of doctor-patient confidentiality.
Dr. Mininberg identifies himself and explains that he has finally received the bronchoscopy results.
My heart beats heavily in my chest. “And?”
“Where are you now, Mr. Martinez?”
“I’m on my way to the hospital. I’m one of the zillions of cars stuck on 285.”
“How long will it take you to get here?”
I look at the clock on the dashboard. “It’s hard to say. Probably 45 minutes, maybe longer. Why?”
He sighs. “I have to finish rounds. Perhaps I can return before you leave. We can discuss it at that time.”
I cannot stand not knowing. A terrible diagnosis or not, I cannot wait. “Please, doctor. Tell me now. Whatever it is, we need to know.”
“I prefer not to discuss this news on the telephone.”
I am so mentally exhausted, so aggravated with this traffic, so ready for some answers that I find myself begging. I have no energy for shame. I only want the clear, unvarnished, unequivocal truth. “Please, doctor. Please. Just tell me. Tell us.”
He inhales. “All right then.”
“Would you mind placing us on speakerphone?”
He sighs. “One moment.”
I hear a click and then his voice sounds far away, as though he is speaking from the end of a long tunnel. “Can you hear me?”
“Yes, I can. Mom, are you there?”
I hear a murmur, but the words are unintelligible.
“Yes, she can hear,” he assures me.
“Okay. Thank you. Go ahead, doctor.”
It’s just as we thought: It is a ten centimeter cancerous mass.”
“There’s no question, then. It’s cancer.”
“There’s no question. It’s stage three lung cancer.”
“Stage three.” I pause as my heart thunders in my chest. “Is that bad?”
I hear the hesitation in his voice. “In your mother’s case, it’s inoperable.”
Closing my eyes, I pinch the bridge of my nose. “Has it spread?”
“Yes. Would you like me to read you the preliminary radiology report?”
“I don’t know how much of the report I will understand, but all right. Is my mother still awake?”
“I’m sitting next to her bed, but I don’t know how much she is following the conversation. She is heavily sedated.”
“Can I speak to her for a moment before you read the report?”
“Of course.” He pauses and his voice grows distant. “Miss Martinez?”
She says something I cannot quite hear.
“It’s your son. He wishes to speak with you.”
“Hey, mom. I’m on my way there, but the doctor is going to read the pathology report to us because he’ll be gone by the time I get there. Okay?”
“Okay to sureself.”
Dr. Mininberg’s voice sounds much closer to the speakerphone. In his clear, confident baritone, he reads aloud.
“Number one: Large right lobe heterogeneous soft tissue enhancing mass, measuring at least 10 centimeters in cephalocaudad dimension by nine centimeters in transverse dimension by ten centimeters in AP dimension, consistent with a primary lung neoplasm. Clinical correlation is advised.
“Number two: There is invasion of the right side of the mediastinum and hilum, with encasement of the right upper and middle lobe bronchi, and partial encasement of the bronchus intermedius.
“Number three: Infiltrative changes are noted within the right upper lobe, especially inferiorly, consistent with acute pneumonia in the appropriate clinical setting and/or local lymphangitic spread of tumor. Clinical correlation is advised.
“Number four: Small right pleural effusion.
“Number five: Mild right basilar atelectatic changes.
“Number six: Severe diffuse fatty infiltration of the liver.
“Number seven: Status post cholecystectomy.
“Number eight: Multiple old healed left posterior rib fractures with callus formation.”
He falls silent after he finishes reading the report. Although I do not understand everything, I get the gist of the report: Mom’s situation is bad.
“How can it be treated?”
“Chemotherapy is the standard treatment in such cases. As I mentioned, surgery is not an option at this stage.”
“Can you tell me about how the chemotherapy works?”
He pauses again as though he is collecting his thoughts. “Chemotheraphy is the standard treatment, but it is not recommended in Ms. Martinez’s case.”
“She is so weak and on so many medications, we do not believe that she could withstand the chemotherapy regimen.”
I am incredulous. “It would kill her?”
Again, I sense the hesitation. Ideally, this is a conversation best handled face-to-face. We do not live in an ideal world, as I repeatedly discover each day. “In all likelihood.”
“Well, if surgery isn’t an option, and chemo isn’t an option, what should we do?”
He pauses a final time. After a few seconds, I wonder if we have become disconnected. “Doctor? Doctor, are you still there?”
“Yes, Mr. Martinez. I’m here.”
“So what should we do?”
In a very soft voice, much less confident than before, Dr. Mininberg asks a question. I can barely hear his voice through the speakerphone. “Are you familiar with hospice care?”