The Long, Miserable Summer
By Ronald T. Farrar
All through July and August last year, a college professor far from home watched his wife undergo a torturous, but carefully conceived, treatment for a rare cancer. This is his personal diary.
Immediately, our family began pushing her to go to Hopkins. I never dreamed, when my husband, Mark, and I came to Baltimore in 1987 for his internship and residency in internal medicine (and stayed nine years, through two fellowships and a year of chief residency), that Hopkins would remain so embedded in our lives. We live in Virginia now. But as soon as we heard the diagnosis, I thought: Hopkins. Head and neck cancer. Charles Cummings.
And so my parents made that 10-hour drive up I-95 from Columbia, S.C. In a daze, they met with Cummings, who sent them to see radiation oncologist D.J. Lee, M.D., Ph.D. Lee felt that surgery offered the best hope for cure. But Cummings, a meticulous surgeon, scrutinized the images and recognized the inoperable. What we were dealing with was hideous: a treacherous tangle of cancer, coiling around her carotid artery and snaking toward her brain stem. Cummings not only wasn’t certain that he could get all the tumor surgically; there was a high risk that Mom could have a stroke on the operating table. The picture was bleak. Mom’s odds weren’t even 50-50. They were 30 percent.
Here is why I think Charles Cummings is a great man: One, because—although her tumor certainly gave him pause—he went after it hard, aiming to cure. Two, because her type of cancer, called mucosal melanoma, and its location were so very rare, I believe he came up with that cure by the seat of his pants. It was a guts move, one John Wayne might have devised for her tumor: He blasted the hell out of it. In a delicate surgical procedure on July 1, he guided the ultra-precise placement, by Lee, of nine tiny radiation seeds, each the size of a pencil point. Then, over the course of a grueling summer, while the seeds destroyed the cancer from the inside, Lee cooked it from the outside, with 28 doses of external-beam radiation.
The treatment took a heavy toll, and my mother suffered. Already thin, she became skeletal, as her mouth burned and blistered, her taste buds went berserk, huge chunks of tumor and mucosal tissue sloughed off in her mouth, her salivary glands dried up, and she battled nausea, pain and worsening fatigue. When she tried to sleep, she choked. In an ironic twist during this miserable summer, her brother, Clyde Jr., who had survived throat cancer (his was different, a clear result of decades of smoking and drinking), died of esophageal cancer. Mom was too sick to go to the funeral.
Every day, my mother put on her makeup and good clothes and sat in a dismal radiation-oncology waiting room (fancy new Cancer Center, where are you?). Many fellow patients—plus nurses, radiation technicians, dental-clinic staff, and physicians—became friends.
Good things happened, too, during this summer from hell. Friends and many total strangers prayed for my mother. Not a day went by that she didn’t receive a card or phone call from someone wishing her well. The prayers and treatment worked a miracle: She beat the odds, and is now cancer-free. Before coming to Hopkins for the summer, my father, Ronald T. Farrar, an award-winning author and professor of journalism at the University of South Carolina, offered to step down as dean of graduate studies. The offer was promptly rejected; instead, USC gave him a laptop, and he telecommuted from a rental condo in Cross Keys, five miles from Hopkins Hospital. He also kept a journal. My Dad never intended for his journal to see the light of day, but agreed to let HMN publish some excerpts in the hope that it might help somebody facing a similar ordeal.
- Janet Farrar Worthington
Tuesday, June 30: We make the long drive up from South Carolina today and get moved into our apartment. Plenty to do when we arrive, not much time to worry about the surgery tomorrow.
Wednesday, July 1 We wait for hours, and her surgery time comes and goes. Much delay attributable to fact that the crack Hopkins crew lost the permission paper Gayla had signed days ago. Eventually the crisis ends when somebody decides to quit looking and simply ask Gayla to sign another one. She does. Finally, she goes in. Dr. Cummings and Dr. Lee tell us it went well. I return to Cross Keys alone and spend a lonely night in a strange place.
Thursday, July 2: G is discharged this morning. She has an appointment with Dr. Lee at 11 a.m. He insists that she pass inspection from the Dental Clinic. Gayla is distraught at the prospect of losing any of her teeth. The tragic example of her brother, whose radiation may well have been botched (and whose teeth were pulled “prophylactically”), continues to haunt. We go there, and wait. Finally we get in to see a young dentist, Dr. Claudia Storch, who gives Gayla a sympathetic hearing. Eventually, G gets a clean bill of health. Thus a trauma is averted, and G gets to keep her teeth. We leave the dentist’s clinic about 6 p.m.–only five and one-half hours there–but with a good feeling.
Friday, July 3: A happy birthday for me. I walk (locating a fine track at a nearby high school). Gayla goes to a grocery store to stock up on provisions. We’re making the condo look pretty homey by now. Dinner tonight at Macaroni Grill, a high-energy place. Grand occasion.
Monday, July 6: Radiation appointment at 10 a.m. Very foreboding. Gayla is fitted with a rigid plastic mask designed to hold her head precisely in place throughout the treatments. Something straight out of a Vincent Price movie, the mask is a frightening, extremely close-fitting net of plastic that has nightmares written all over it.
Tuesday, July 7: Nothing scheduled today, so we take a long drive to the Eastern Shore, all the way to Ocean City. Lousy lunch, but we walk on crowded beach afterward. Weather absolutely perfect. We get lost on the back roads, but eventually make it across the Bay Bridge and home in time to eat some of the sweet corn we purchased. Good day, all things considered, and we needed to get out for a while.
Wednesday, July 8: Raining hard when we wake up. Gayla is apprehensive, understandably, about the onset of radiation treatments tomorrow. She says she knows her life will never be quite the same. Her saliva glands are evidently to be lost, maybe forever. On the other hand, her teeth were said to be vulnerable also, and she belied that grim prediction. Long telephone call from Clyde Jr. He is in really bad shape, can barely talk. His spirit remains high, and his affection for his younger sister is powerfully moving. He deserves better medical care than he got. Gayla doesn’t sleep much tonight.
Thursday, July 9: I’m up early and walk before breakfast. The treatment itself isn’t quite as bad as we had feared, though the mask—secured to the table, effectively keeping Gayla from moving her head, or even opening her mouth—is horrifying. Still, the radiologists are nice and the thing is over with fairly quickly. She has survived #1.
Friday, July 10: Hopkins seems to have accorded Oncology patients a certain unusual respect. They’re given special parking spaces, protected by courteous security officers. The patient check-in system is automated: G simply slides her orange card and up from a nearby printer pops her appointment and any special instructions. It seems about as efficient and humane as possible. This afternoon, Gayla begins to develop mild side effects—dry mouth, especially. She has this complicated regimen of stuff to do at home each day—fluoride treatments, jaw-stretching exercises, all sorts of dental procedures. This afternoon’s mail brings wonderful messages. We are blessed with great friends who seem to know the right things to say.
Tuesday, July 21: Bad news. The radiation machine is broken, so no treatment today. G is distraught, for another day is lost, she thinks. The delay won’t affect her treatment, but each day away from home is painful and expensive, and the summer is rapidly winding down.
Wednesday, July 22: Machine still broken. Another day lost.
Thursday, July 23: Radiation equipment functioning again, so Gayla gets her treatment, though an hour late. More waiting for a conference with Dr. Lee. While we wait, in an open examination room, we overhear a loud, young radiologist talking on the phone, presumably to another physician about a case. He parades all he knows, in an overbearing voice painfully audible to all who wait in the half-dozen nearby consulting rooms, and he talks about “an 18-month mortality expectation” and other grim pearls of wisdom he is determined to trot out to impress the party on the other line. It takes a substantial effort to demoralize that many cancer patients within earshot at one time, but this fellow succeeded. We eat lunch at the famous Bel-Loc Diner (plate lunch, plain food, good price).
Friday, July 24: The waiting room is pretty tedious. There’s a TV, tuned to Sally Jesse Raphael and all her whining, loser guests. Magazines are old and inappropriate—sailing, golf, gourmet cooking. We see many of the same faces day after day. These decent folks are really sick. Some, especially those also taking chemo-therapy, can barely stay awake. One is a service-station worker, one a musician, one a grandmother, one a rather distinguished-looking fellow who wears a T-shirt saying “Harvard Law.” Nobody dresses up for treatments. Most of the patients—Gayla is an exception—are too tired and sick to care much about how they look anyway. After radiation, Gayla heads for her weekly visit with the dental-clinic folks. Again, another long wait—90 minutes, for a 30-second consult. The dental-clinic waiting room had one magazine today, a two-year-old, coverless copy of Life. One fellow had been waiting for three hours. He was told that the dentists were taking a lunch break (wrong information!) so he dashed off for the cafeteria. He lost his place.
Monday, July 27: I don’t want to forget the first look we had of the Oncology area. The long, battered basement corridors, the dreariness of the place. It’s like all who enter are doomed. Many are, of course, but the decor shouldn’t tell them so in advance.
Tuesday, July 28: Good session with Dr. Lee, who continues to reflect optimism. Gayla’s side effects are really beginning to tell. In addition to the flow of metallic, bilelike fluid are the problems of dryness, aching ears, with almost total loss of appetite. Large blisters, in the mouth and on the tongue, and swollen gums make eating an almost unbearable chore. Gayla’s diet consists now of Ensures, plus odd, tiny portions of whatever seems less repellent at the moment . . . boiled eggs, pork and beans, pancakes.
Friday, July 31: Conditions worsen. The radiation treatment is getting far more intense, and Gayla is taking a terrible pounding. She can barely eat or drink anything, and I worry privately about the possibility of a feeding tube.
Thursday, August 6: Gayla has a fine meeting with Dr. Cummings. He says he can’t see a tumor, which means the radiation seems to be working. We feel pretty good about this, though he did not say she was cured, by any means. Dr. Cummings is hard to read; he is a very courtly person, a keen listener. Still, he is very cagey, and obviously he doesn’t volunteer anything. What we learn from him we pretty much get from direct questions.
Friday, August 7: Gayla’s voice is now gone; all she can do is whisper.
Monday, August 10: The roughest day yet for Gayla. After a very long wait, she gets in for treatment, which now has taken on a new turn, involving the creation of special blocks for her (to help avoid spinal damage). This takes an incredibly long time, with her suffering under a mask that is locked to the steel table, unable to speak or move while all the X-rays and adjustments are being done. She is dehydrated, exhausted, totally spent emotionally. However, her voice is coming back a bit, and she does eat an egg at dinner.
Tuesday, August 11: There is this image one has, out in the country, of Johns Hopkins—that is, the kind of place that attracts complicated cases from around the world. There is plenty of that; we see lots of rich-looking Arabs, in their flowing robes, but we also see lots of dirt-poor patients from the inner city of Baltimore. So far as I am aware, the Hopkins staff treats everybody absolutely equally; if a rich foreigner gets anything more, or if a homeless local patient gets anything less, I haven’t seen it.
A word here about the Oncology security people. To a man, they are uncommonly courteous, civil, helpful. Their main job seems to be to control the parking in the little Oncology lot. But they do much more—rushing to assist wheelchair patients (whom they instantly recognize) in and out of their cars, opening doors, providing a dignified escort to each man or woman who needs it. They know each of us, and they move heaven and earth to locate parking spaces in the incredibly limited lot. I once saw one of the security men bawl out a construction worker whose pickup truck was taking up a valuable space. I didn’t get all of the conversation, but did hear the guard say, “. . . and one of my people needs this spot.” Today, as Gayla came out of the treatment room, she asked a security guard where she could get some cold water. Immediately he dashed off, heaven knows where, and returned with a cup of ice. It was a most welcome gesture, but one not uncommon where these good men are concerned.
Wednesday, August 12: Gayla’s pain is too acute, so she talks with Dr. Lee and he tells her to take off until Monday, hoping the burns will heal during that time.
Thursday, August 13: We try to relax in the apartment, but Gayla’s mouth and throat hurt so badly that anything—even water—is agony to swallow. Various prescriptions are filled, in hopes they will help. They don’t.
Monday, August 17: What a horrible day! Gayla is too badly burned for treatment today, but goes in anyway. Dr. Lee examines her and tells her to come back Thursday. This is a devastating blow, and, when Dr. Lee leaves the room, Gayla begins to cry. She’s called for the normal Monday weighing, taking vital signs, etc., so I return to the waiting room. Minutes later, Karen, Dr. Lee’s nurse, informs me that Gayla got dizzy and was ordered to lie down. Her heart rate was going off the charts. A-fib, the nurse called it. An EKG is ordered. G is wheeled through those institutional basement corridors to the Emergency Room. Soon a young intern comes and takes her history. The intern’s a good listener, very thorough in her questioning. Another EKG is ordered. Eventually an attending shows up, and he, too, talks with G for a long time. The heart rate is still wildly rapid. But no other symptoms—no more dizziness, no chest pains, etc. Still, they decide she should be admitted for observation, and to get her stable. After about five hours in the ER, we are admitted to Osler, where our son-in-law Mark had served as ACS—and where I had once rounded with him and his bright group of interns and residents.
No private room available, so Gayla bunks in with a wretched, tragic person—a large, angry woman, terminal with brain cancer. She is supplied with sitters, privately paid for. But the woman is violent, and it takes several folks to keep her from wrecking the place. Why isn’t she sedated? During the brief moments she’s calm, the sitters eat, noisily, from plastic bags. They snack all night long. In addition, Gayla’s IV machine malfunctions and begins to beep every 20 minutes. It is a long, lonely night.
Tuesday, August 18: I go to the hospital and find Gayla totally exhausted. She feels truly awful. But new medication has stabilized her heart rate, and this is good news. I arrive in time to get some of the benefit of her roomie’s loud, ugly behavior, and understand why there was no sleep the night before.
Wednesday, August 19: Nothing to do today, thank heaven. Gayla (now back at Cross Keys) sleeps in, wakes up feeling better than she has in some time. The track is getting crowded. Fall football practice has begun, and something like 100 kids in full pads occupy the practice fields, utilizing what appear to be brand-new blocking sleds and other training devices. There’s a full complement of coaches and videotaping equipment, so that each practice session can be studied.
School is about to open. There is a certain vibrancy surrounding the opening of school—any school. This year, though, all these young folks, looking purposeful while I continue to walk in circles around the track, leave me feeling more than ever to be out of it. Age is a factor, and so is this unique, tragic situation that got us here in the first place.
Thursday, August 20: Classes begin at USC. For the first time in 34 years of teaching, I’m not on hand for the opening day of the fall term.
Monday, August 24: Clyde Jr. died today. Gayla is distraught, because of the pain her brother has endured, and because of all the wasted opportunities in his life. There is no thought of Gayla attending the funeral; she’s much too weak. Gayla’s grief compounds the other problems.
Tuesday, August 25: Good news! Dr. Lee says Gayla’s last radiation treatment will be Thursday–the day after tomorrow. This means we can safely count on leaving after she sees Dr. Cummings. Gayla has lost seven more pounds. I walk at the track, which I now share with the football players. The conditioning coach is working them out this morning.
Wednesday, August 26: Gayla’s next-to-last treatment is dicey, mostly because of the nausea. She is apprehensive about vomiting while strapped down to the table in her mask, being unable to cry out for help. However, she gets through in good shape.
Thursday, August 27: Wonderful report from Dr. Cummings, who says she is cured—for now, at least. This doesn’t mean the tumor might not come back, but the news is excellent! The radiation seems to have worked beautifully. We are on Cloud 9. A final lunch at the Outpatient Center’s Grille 601 and we head back to the apartment to pack.
Six weeks later: Back at Hopkins for Gayla’s intensely dreaded follow-up CT scan. It is the best possible news: Dr. Cummings is elated—the cancer is gone! Dr. Lee looks over at me and says the same thing. We both begin to cry. “Stop looking so worried!” he laughs. “It’s over.”
It isn’t, of course. We’ll be tracking this one, I guess, indefinitely. But now we’ll do so with optimism and even some confidence. All we had before was hope, and precious little of that.