The Doctor as a Patient.
“How was your day? How do you feel?“ These were the questions asked by the Dermatologist when she called him.
“Feeling wonderful and great”, was his reply.
Silence.
“Look, I got the results of your biopsy earlier today. As I thought, it IS a malignant melanoma that you have on your back. You need to be seen by a melanoma specialist as soon as possible and you really shouldn’t wait. Do you have time this afternoon?”
“Ah, yes I guess, what did you say?” was the patients reply.
“Well I know people at the Cancer Institute, and I made some calls and they can get you in this afternoon to see the melanoma specialist and surgical oncologist. Can you be there at 1?”
“OK,” was his simple answer.
This unexpected phone call and the news he had just received seemed like a blur to the patient. He had heard the words and what the Dermatologist had just said, but it was as though his brain had not really captured and processed all of the information he was hearing for the first time. He felt as though he was in a mental fog. Surprised, confused, lost and disoriented, he tried to recall, process and go over the information he had just heard.
His morning had begun like any other workday morning. Up and out of his house before sunrise and arriving at his work by 6 am. As he does on occasions, he stayed in his car and began to read medical articles and papers before beginning work. This particular morning had been uneventful and very pleasant. He had seen patients’ in an office with medical residents that routinely accompany him on rounds and had just arrived at another of the clinics where he see’s patients. He was still in his car in the parking lot when he received the phone call.
He had been happy and carefree as he was doing what he loves to do, which is helping his patients and teaching medical residents, from whom he learned so much from. But unexpectedly in an instant, his life took a dramatic change, which he found hard to accept and that would put his entire future in doubt.
Malignant melanoma.
He didn’t remember much of this diagnosis, only what he had learned many years before while in medical school. He recalled that it was, well malignant. A very serious, life threatening condition with almost a 100% mortality. Similar to that of the AIDS epidemic of the early and mid 1980’s, when the diagnosis meant a certain death. He was stunned to receive the melanoma diagnosis.
“What was it I just told? I have an appointment scheduled for today, with a melanoma specialist and surgical oncologist for me? I have cancer?”
“How can this be? I exercise regularly, I feel great, in perfect condition, I’m always hungry and I live in a state of gratitude from everything I have.”
“WOW! I can’t believe this is really happening”!
As he entered the office, he remained silent and said nothing to anyone, mainly because he was in still in a state of shock from the news. He found himself unable to focus on his patients, or on his residents. He felt as though he couldn’t catch his breath. He felt as though he was being smothered and drowning, unable to take a full, deep, relaxed breath. He walked from one exam room to another, agitated as if he was looking for or rather fleeing from something. He was in a daze and in a state of bewilderment. Carmen, his trusted nurse and assistant that has known him for years, noticed something odd and asked him if everything was alright with him.
He confided in her and told her the news he had just received that he had been diagnosed with a malignant melanoma. They talked for a bit and then they prayed together. He then went on to the business of healing and attended to the patients he had scheduled, all the time trying to keep a positive, happy demeanor. But down inside he remained lost in a state of shock. He was physically there, but he was unable to concentrate on what he was doing or be present mentally. He was being spoken to, but he found it difficult to hear and comprehend what he was being told. His attention and focus was not on his profession, but rather on the life thoughts and concerns that he imagined most people having just received such an unexpected life altering diagnosis must feel and experience.
He kept thinking about the diagnosis, malignant melanoma. Malignant melanoma. MALIGNANT melanoma, emphasizing the malignant part.
After finishing seeing his patients, he drove himself to the University Cancer Institute. On arriving, he went straight to registration where he filled out forms and payment information. Overwhelmed about the days’ events, when asked if he had medical insurance, he said no and paid the visit with a credit card.
After signing paperwork, he was given a white plastic wristband with his personal information, making him an official, bonafide cancer patient.
Like some distinguished guest he was then personally accompanied by the Cancer Center coordinator to his first appointment with the melanoma specialist. As they walked through the Cancer Institute she made light conversation. All along the way he could hear her talk but was unable listen to what she was saying as he continued to be in a state of shock, in his own personal thoughts and alienated, as if in a distant world far removed from reality.
The specialist waiting room was a small area, located near a cafeteria. The smells of food mixed with smells of cleaning products and chemotherapy permeated the area. A somewhat strange combination as was his being there, he thought. Several people were waiting for their appointments, filling out more papers, trying to entertain themselves waiting to be called.
While sitting, he realized that he in fact did have medical insurance and the card had been in his possession all along. Having never needed to use it and being in a state of shock, he had forgotten all about it.
After a few minutes a nurse called out his name and took him in, to take his vital signs and ask additional questions.
“What type of insurance do you have? Do you have any medical conditions? Are you taking any medications? Have you ever had surgery? Is there a family history of skin cancer? How do you think you got melanoma? Do you have swollen glands, weight loss, any pain? Have you had fever? Have you already had any type of imaging scan? Are you married? Do you have family? Do you have children?”
As he answered these questions, he found himself thinking how uncomfortable and absurd it was that these questions were being asked of him.
He so desperately wanted to tell the nurse that he felt great, he felt alive and energetic and that this was just all a big mistake. He wanted to shout out and let everyone know that only four hours before, he was happy, in a perfect state of health eating pastries and drinking a café Cubano in Little Havana without a worry or concern. But he answered her questions and returned to the waiting room to wait his turn with the doctor.
Meeting the doctor.
In the exam room, they gave him a typical hospital gown, the ones that stay open and expose the entire backside. They asked him to remove all his clothes so the doctor could examine his skin from head to toe. The exam room was cold in temperature and sterile in decor. There was a large window facing east with sunlight trying to find its way in but closed with a drop down plastic blind so as to comply with privacy regulations.
Although he did not say anything, he began to feel uncomfortable and apprehensive on being told the doctor would have a nurse and three medical residents who would also examine him. The fact that his back was cold due to the hospital gown and that his butt was totally exposed for the world to see, also didn’t help.
It was now the doctor, who was the patient.
Finally the melanoma specialist entered and introduced himself. Light conversation ensued and while talking, the specialist immediately fixed in on an area of the skin that although appeared normal to the patient, was of interest to the melanoma specialist. Pulling out a magnifying glass he began to scan the skin in closer detail. Naked, only in his underwear, the patient could feel the heavy, purposeful gaze of five pairs of eyes transfixed over his body.
At that moment, he felt more like an object, like a model of anatomical pathology and less like a human being.
“Look at this,” the doctor exclaimed to his students. “I’m not sure, but this appears to be an aplasia. Were you exposed to the Sun when young?”
“Yes doctor”, was the answer. “I grew up in Miami, and as a child spent summer and vacations with my family on Miami Beach. In high school, I would hang out with friends at the beach and on Key Biscayne and as an adult I had friends over on almost every weekend swimming and barbecuing by the pool.”
“See this lesion” (referring to an area of skin, above the collarbone), “it appears to be a melanoma that your immune system seemed to have controlled. When you see the surgeon later, tell him that I would like for this lesion to also be removed. Do you have a camera on your cell phone? Let me have it to take a picture of this lesion for you.”
“Have they given you the results of the pathology report?”
“Yes, but not in detail and only over the phone,” he answered.
“Would you like a copy of the report?”
“Yes,” he answered.
As they continued screening his skin, he for the first time was given, and had a chance to review a five-page pathology report. With one eye closed, and moving the pathology report far away from his eyes as a defense mechanism so as not to see pages that may contain life altering descriptive words, he quickly scanned the report.
After the first pass, he then brought the report in closer, and specifically looked for words that may indicate the degree of severity of his condition. Words like “malignant”, “metastasis”, “penetration”, “dissemination”, etc.
Apprehensive but accepting his situation, he then for the first time read the report in its entirety to be able to inform himself of the severity of his situation. “Penetration, high mitosis rate, profound” was printed on several of the pages. He tried not to give importance to these descriptive words used in the pathology report, so as to not allow that the description contained within the report to creep in and stay embedded in his subconscious mind.
“We have a special system of spectral photography which we use to analyze suspicious skin lesions and areas that allows me to see the different layers of cells. It’s not a painful, procedure, but takes about 10 minutes to take the pictures. Just lay down on the exam table, we’ll place the lens over the area we are concerned about and we’ll come back in a few minutes.” They all left the room and turned off the lights as they left.
Finally, for the first time since he had been giving the life altering news earlier that morning, he found himself alone, at peace in a quiet room. He felt relieved to have a few minutes to rest, unwind and decompress. He was emotionally exhausted. During those minutes he can’t recall if thought of anything. It was quiet and peaceful. He only heard the rhythmic, mechanical sound produced by the camera that had a calming effect on him. He began to fall asleep, finally thinking, I can now rest. The tranquility was short lived. Before he knew it, 15 minutes had passed and the doctor, another melanoma colleague, the medical residents and a nurse burst in, awakening him from a blissful rest.
The melanoma specialist and his colleague were anxious to review the images. They concluded that the new area of interest was possibly another melanoma that had not fully developed due to the body’s immune and defense system being activated and preventing its development.
The doctor informed him that the next step was to see the surgeon and to plan on having a wide-excisional biopsy of the area where the previously biopsied lesion was, as well as on this new area of interest.
He would also have to have screening scans such as CT scans, nuclear imaging and/or PET scans looking for areas of metastasis.
These scans would be able to identify the lymphatic drainage from the skin lesion area, so the surgeon could also remove lymph nodes looking for metastases. The melanoma specialist then asked him the questions he had previously heard, “are you married, do you have a family, do you have any children?” (He began to think these questions were the type of questions asked to patients in grave, poor prognostic conditions.)
He had heard so many negative and alarming comments being made about his cancer, that before the doctors left the room he heard himself blurt out and ask them how long he had to live.
“Well, it depends on how extensive it is and if there are metastases.”
“What?? Seriously?”
As he dressed, they departed with “good luck.”
After dressing he quickly returned to the cashier to pay for the second appointment, with the oncological surgeon. He figured, as he had used a credit card previously, it would save time on more paperwork and the payment of a probably high deductible, so he again charged his surgical appointment.
He was then directed to the surgical waiting room. The surgical waiting room was a larger area than the first. In the center, dividing the waiting room was a large fish tank with small, colorful, tropical fish. Surely the tank was meant to try to add color to a drab space, and create a relaxed, less stressful environment for those who were waiting.
Here he saw cancer patients in all stages of illness. Cancer survivors with their family members, some wearing hats and scarves covering their scalp, a few women without a follicle of hair, looking beautiful with their baldheads exposed for all to see. The majority appeared to be older than him, many where thin and almost no one seemed overweight. About half appeared ashen and pale in tone. It reminded him of a scene from the movie, “Joe versus the Volcano”, were everything seemed drab, colorless, and in slow motion.
What stood out to him the most was that all the patients were waiting accompanied by someone. A friend, a family member, someone.
He noticed three elevators in constant motion and use, bringing patients up to the surgical floor for their appointments. While a few people would wait for the elevators to leave, like a finely tuned machine, the elevators seemed to provide a continuous, never ending supply of cancer patients. “These cancer doctors will definitely have job security for many years to come” he thought.
In those moments of waiting, and seeing the flow of sickness, an air of sadness and doom permeated the waiting room.
After a morning unlike any other, after the questions he had been asked, after what he had been told, seen, heard and read, he felt defeated.
“Depending on if there are metastases” to be able to be told how long he had to live was also not great encouragement.
He began to analyze the words the doctors chose to inform him.
How is it possible that doctors say things, without realizing the impact the words they use have on patients, especially patients with a diagnosis such as cancer, he thought. Couldn’t they be more empathetic and use softer, less impactful words to inform patients of their diagnosis. Why so cold, blunt and authoritarian.
As a student of medicine and the psychology of medicine, he understood the importance that words have on patients. The words chosen and the manner in which the doctor communicates with the patient, has a huge psychological and subconscious impact that DOES impact on wellness and healing. The last thing anyone should do, and this is especially true for those who wear a white coat and are in a position of authority over patients at a very vulnerable time, is to choose words and communicate in ways that eliminate the possibility of hope.
“What am I doing here?,” he thought.
At that moment, again he could not believe that he was sitting in a surgical oncology waiting area, surrounded by cancer patients, at the Cancer Institute with another wrist band, this time yellow, waiting to see a surgeon.
After about 35 minutes, he was called in to meet with the surgeon.
Upon entering the room, a Dermatology resident received him. After some pleasantries, she began to study his medical chart, reviewing his history and pathology report.
She started talking to him about the diagnosis of melanoma, taking care not to reveal much information, so as not to get in trouble with the surgeon. The resident told him that her father too had also been diagnosed with a melanoma on his face, and that he too had undergone a wide removal as well as dissection of the lymph nodes, similar to the surgery that he was to have. She mentioned that he was well and that there were new techniques and advances in the treatment of melanoma and that, although still a very dangerous type of cancer, there was also increasing survival rates and more options than before. For the first time in the entire day, the words of this resident were the first encouraging and uplifting words he had heard after hours of depressive information.
Seeing the medical resident, on the other side as the examiner, assisting and working with an attending doctor, reminded him of when he was a medical resident.
How many patient histories, physical examinations and faces of patients did he see during his years on that “other side.”
For the first time in his life, he began to wonder about the experience of the many patients he had taken care of throughout his years of medical residencies. A flood of thoughts crossed his mind. “Was he compassionate enough? Was he able to appropriately answer any question they may have had? Did he find a way to follow up? Did patients feel a loss of control? Were they worried or afraid of the diagnosis he had just informed them of? Were they as fearful being given their diagnosis’ as he was at this moment? Did he listen to them or was he too busy to really hear what patients were saying to him? Had he done enough to try to comfort and give hope to all those he treated? Could he have done more?”
While thinking of these events that transpired decades before, the surgical oncologist walked into the room. After a quick introduction, he began to review the medical record and the pathology report. With the patient sitting three feet away, the surgeon turned to the medical resident and asked her for the stage of the melanoma the patient had.
“Stage 1” she replied.
“No. The depth of the biopsy is about 5.5 mm, which indicates a stage 4 melanoma.” The surgeon continued talking and discussing the report with the resident. As the patient was also a doctor, he became upset at the manner in which the conversation between the surgeon and resident was going.
“How can it be possible for these people to not realize that they are talking about the severity of a malignant pathology in front of the patient, in such a careless manner? As if their words had no impact or significance? Talking nonchalantly as if the patient, the person, the human being in front of them did not exist. Discussing just another of the so many ‘cases’ that they treat every week.”
Being a doctor in a healthcare situation like this can be helpful or it can be a burden. In this particular scenario the patient understood all that was being said. A stage 4 melanoma is a very advanced stage of disease, equating with a sure death sentence. As they continued to discuss “the case,” he could only focus on and think of the inappropriateness of the medical communication that was ongoing not to the patient, but amongst themselves. Rather than being alarmed, he was very annoyed and angry.
After his teaching moments with the resident, the surgeon turned to the patient and explained that he had a serious problem. He discussed the pathology report, treatment plan and prognosis. He mentioned he had to do a wide surgical excision and would also have to remove lymph nodes. As the location of melanoma was in the middle of his back, it could be drained by several lymph systems and he would need to have a nuclear scan to locate which of the drainage routes drained the area. The surgeon then asked what he sarcastically referred to as the ‘death questions’: “Are you are married? Do you have family? Do you have children?, etc”. He was also asked for the first time, what kind of work he did. He replied that he was doctor in private practice in Coral Gables and at several medical clinics and on the teaching faculty of local medical schools.
Silence.
They quickly looked at the patient information in the chart, as if looking for personal information that they may have missed, like patient occupation. They appeared taken aback and surprised.
This perhaps because at no time had the patient mentioned to anyone at the Cancer Institute that he was a medical doctor, nor had he signed or put “MD” behind his name. For that day, in his situation and with his diagnosis, he was there as one of the many cancer patients that come through the doors of the Cancer Institute and not as a doctor.
They apologized for whatever reason, and the surgeon’s tone and level of empathy changed. Questions were answered and surgery was set for the following week. They instructed him to be at the Institute by 11 am, at which time he would go to nuclear medicine for an imaging test that would help locate the lymphatic system that drains the area of the melanoma. He would then also take biopsies of lymph nodes, looking for any metastasis.
Surgery would take 2 ½ – 3 hours and be under general anesthesia. He was also told to take off a week, as the recovery period could be painful.
At close to 5 in the afternoon, after what seemed like a nightmare and an eternity, finally he was done with the consultations and exams and could go to the home. For the first time in his life, and probably the only time in his life, he was actually happy and looked forward with great anticipation to drive home in the middle of the congested rush hour traffic down I-95 and U.S.1.
During his drive home, he remembered nothing of the drive. He found himself in a state of suspended animation, driving as if on autopilot, without focusing on what he was doing. He remained in a daze where nothing felt real. He was overwhelmed and tired.
And so it was that I arrived at home at the same time as my wife, because that doctor, or rather the melanoma patient I write about in this story if you had not guessed it by now is me, Dr. Bordenave. Without knowing anything about my day full of adventure, or of my diagnosis since I had not called or told anyone, with a smile and a kiss, she asked “How was your day”?
To be continued.