Although Sean cared about her greatly, it was essential for him to distance himself from the immediacy of her suffering, to leave work behind, to go home to his wife and children, to run, and to play his music. He had not caused her leukemia and had limited powers to cure it, yet he did his best to ease Victoria’s suffering without becoming overwhelmed in the process.
CHAPTER NINE
patients speak: the healing garden
Is it true that the wind
streaming especially in fall
through the pines
is saying nothing, nothing at all,
or is it just that I don’t yet know the language?
—MARY OLIVER, WIND IN THE PINES*
To plant a garden is to believe in tomorrow.
—AUDREY HEPBURN
I have shared the perspectives of fellow physicians as they cared for mortally ill patients and family members. But, what of the patients themselves? How has illness shaped them? Victoria’s journal gives her a voice that lives beyond her death, but what of other patients whose lives have been irreparably altered, but not ended, by their experiences as patients? I bring you the stories of four patients. Not only were they generously willing to share of themselves, but their stories are inspiring. Each patient has had to reimagine their lives, accommodating to losses forced upon them. In the course of these adjustments, they have reordered priorities and found meaning and purpose.
The first two are my own patients; they had brain surgery for cancer. In some ways, they couldn’t be more different, yet in others, they are surprisingly similar. Irving Lugo is a physician who developed lung cancer that spread to his brain. He continued to care for others while undergoing treatment for lung cancer. William E. Williams is the young man whose brain surgery I described in Chapter Three. He developed leg weakness after his surgery and has had to adjust to this while living with the possibility of his brain tumor recurring. The last two interviews are with Mary Magrinat, a breast cancer survivor, and Sally Pagliai, whose husband died of stomach cancer. They channeled their losses into positive action, creating the Healing Gardens at Cone Health Cancer Center, in an effort to bring the healing presence and rhythms of nature into the sterile hospital environment.
IRVING LUGO
I have spoken with physicians who, like me, witnessed the deaths of family members. I have explored whether it made any difference in their subsequent treatment decisions and, in discussions about prognosis, whether it made a difference if the patient had medical expertise (in the case of Stacy’s aunt Diane, it probably did but not as much as I had thought it might). But I had never spoken in depth with a physician who was himself being treated for a mortal illness.
I had the opportunity to do so with Dr. Irving Lugo, a psychiatrist who is being treated for stage IV lung cancer. I got to know him as a patient through our brain tumor program. When he presented with lung cancer, on staging workup, it had already spread to his brain. Matt Manning and I treated these brain metastases with stereotactic radiosurgery. We performed follow-up scans every three months over the course of several years to assess for new tumors, and Irving periodically underwent additional radiosurgery treatments to treat the new areas with focused radiation, at the same time sparing his normal and unaffected surrounding brain.
At one point, we were unable to determine with MRI imaging whether a new enhancing area was a recurrent tumor, for which we would perform additional radiosurgery, or an area of radiation necrosis, the late result of radiation damage from the tumor-killing doses we had previously delivered to a large frontal metastasis—in which case, the worst thing to do would be to deliver additional radiation. Instead, we elected to perform a craniotomy to remove this abnormal area, thereby providing a diagnosis as well as solving the problem altogether by removing this swollen, irritated part of his brain. I performed Irving’s brain surgery and it went smoothly. He was nervous about the idea of having his skull opened but did extremely well with the surgery and went home the next day.
Through all these experiences, I grew close enough with Irving to speak with him about my sister’s illness and her death, which was occurring contemporaneously with his treatments. I told him that I was trying to come to terms with my grief and, at the same time, wanted to understand the impact that mortal illness in a physician’s family has on the physician. In getting to know Irving, I also wanted to know how his illness was informing his decisions and attitudes as a physician. I wanted to know why he had decided to continue working and how he was able to attend to the needs of others while himself coping with stage IV lung cancer.
A native of Puerto Rico, Irving has been practicing psychiatry since 1984. At the time of his lung cancer diagnosis he had recently left his position at Cone Health, where he was on staff, and returned to private practice. When they first came to Greensboro, he and his wife, Lizette, had planned to stay for a few years while Lizette finished her doctorate before returning to Puerto Rico. But she was employed by North Carolina AT&T State University, and before they knew it their daughter had turned twelve, so they established their home in Greensboro. They always felt they would go back, but a few years have become twenty-something. Still, Puerto Rico was always home.
Irving and Lizette used to spend all their free time and vacation money traveling home to Puerto Rico to see their families, but since his illness he has had a greater sense of urgency about doing the things they had once planned for “later,” such as traveling to Spain and completing their wills. They went to Madrid, to Seville for Holy Week, and then to visit family in Barcelona. Catholicism is a lifelong part of Irving’s culture, and he has raised his son and daughter in the church. He has always been a liberal Catholic, taking the good and ignoring what he does not believe.
Prior to his lung cancer diagnosis, Irving’s only health problem had been borderline high blood pressure, for which he was being treated with a beta-blocker. He had always been healthy, never smoked, kept his weight down, watched what he ate. Three years ago, he developed a dry cough that wouldn’t go away. Initially, his family doctor thought the blood pressure medicine was the cause but stopping the medication did not help his cough.
Next, his doctor tried bronchodilators, as there was a family history of asthma, and then a course of antibiotics for a presumptive diagnosis of bronchitis. When Irving still didn’t improve, his wife pushed for a chest X-ray. This showed an infiltrate, an abnormal patchy pattern, with some nodules, which was initially interpreted as pneumonia, but a second round of antibiotics did not improve things. A second X-ray showed that the infiltrates were still there, and then they did a CT scan. On the scan, they could see enlarged lymph nodes, and Irving was sent to a pulmonologist.
The pulmonologist gave him more medication for the cough and did a PET scan, which is done to assess the metabolic activity of the abnormal region on the CT scan. This demonstrated the lesions had increased radio-tracer uptake, suggesting that they could potentially be cancerous. He said there was a strong possibility that something was wrong, but the word cancer was not used. Clearly, it was implied.
I finally had a biopsy. I woke up from the anesthesia, and as I [was] lying there, the surgeon said, “I am sorry to tell you this, but I think you have cancer.” Then he walked away.
He told my wife the same thing and left abruptly. This was the first mention of the word cancer.
The plan was to give me IV chemo and radiation directly targeting the lesion. I went to the hospital and they measured me for the linear accelerator. I still have the little tattoos that they put on my chest. I was going to have radiation every day, and afterward I would start my first session of cisplatinum. I do not remember the second agent that the oncologist recommended. Initially, I went admitted as an inpatient, the caveat being that they wanted to wait for the biopsy results.
At the time, I was not familiar with the genetics of lung cancer. I was positive for the EGFR [epidermal growth factor receptor] mutation, and because it was stage IV—actually stage IIIB at the
time of my diagnosis—Dr. Mohamed, my oncologist, ordered an MRI of my brain. Initially, they found eight lesions. There was one large one and seven small ones.
My cancer was officially designated stage IV. Dr. Mohamed wanted to combine my course of cisplatinum with another toxin, just to be sure.
The treatment of choice here was erlotinib (marketed as Tarceva), but one common side effect is a severe skin rash. When I developed a rash, I was happy, because there is supposed to be a correlation between the rash and the effect on the tumors. Soon, the rash became like a burn, but I didn’t complain because I figured the chemotherapy was working. When I saw Mohamed, he gasped: “Oh my God—the rash!” Apparently, it was infected, so I started antibiotics and steroids.
Within the first three months, they repeated the chest X-ray, and the infiltrate was gone. I knew that the cough was getting better. The mediastinum nodes had almost disappeared, and the principal lesion was shrinking. Each time I had a scan, the lesion became smaller and smaller.
Dr. Lugo said that things have been stable for him since he has been under treatment, although the lesion in his chest is still present. While he had hoped for a cure, Dr. Mohamed has helped him understand that this is a chronic illness.
When they diagnosed me, I started looking [at survival statistics] on the internet, and it didn’t look good. There were some gruesome numbers, and scenarios where you drown in your own fluid because you cannot breathe. Patients who investigate their odds and are not supported and properly educated in terms of their disease—I can see how they might panic. I certainly did! Metastatic cancer is not my expertise, and as a practicing psychiatrist, I have not kept up with the science of oncology. Mohamed helped me to understand my prognosis. I kept asking him, because your prognosis makes a difference.
The last time I asked him was into my second year of treatment. “Just be grateful,” he advised me. “Live day by day. If your body had not responded to erlotinib, you would be dead by now.”
That was an enlightening comment on his part. I must learn to accept the fact that my disease is chronic and that the lesion is still there. Some of the lesions were coming back, but I could not afford to stop working.
I had opened my practice, and shortly after that I was diagnosed. My treatment was an enormous financial burden. Blue Cross Blue Shield dropped our reimbursement rate just because they could. What are you going to do, quit accepting BCBS patients? It was not a friendly environment for psychiatry, so I had to close the practice.
Irving received information from the cancer center about of how he could get financial help with the cost of his medication. But he didn’t qualify for assistance because he wasn’t destitute. “We are in that range of people who do not qualify for aid but are not wealthy enough to maintain treatment without insurance.”
The erlotinib was extremely expensive … $2,600 a month on top of the medical insurance premium that [my wife and I] were already paying. People assume that doctors are loaded with money, which is not true. I didn’t qualify for any of the health benefits. I did not have enough money to maintain these costs long-term, although obviously my family was willing to help. Without my knowing, my sister donated $10,000 to my care.
It came to a point that I was asking Dr. Mohamed to put me on the cheaper treatment because I couldn’t afford to continue with the more effective drugs. It was risky since the mutation does not respond to regular treatment. Erlotinib is still the first treatment of choice.
It was providence, I think, that my old position at Cone became available. They knew me, they knew my history. I had worked there for six or seven years before I left and they were really happy for me to come back, even with my diagnosis. As a benefit, I was able to participate in a group insurance; the cost of my medication with coverage dropped to $200 a month.
When you walk in the door as a patient, the first thing that they say is, “We need your copay”—even before “Good morning.”
Many patients go through the same thing. Even when you have a reasonable explanation for delaying a payment, the hospital billing office is calling a collection agency. It was an eye-opening experience. Of course, they have books to balance, but they need to remember that these are human beings and that they are in the business of people’s health. It has been interesting living on the other side.
Having said this, he feels he has the best team he could ask for given his circumstances. For the last two years, he has been coming to the cancer center for routine scans and checkups. He parks and walks to the hospital and appreciates the convenience and the pretty walkways and gardens.
I wanted to know what it was like for Irving to continue to practice psychiatry full-time while living with the specter of metastatic lung cancer.
Practicing psychiatry for so long, I am pretty self-aware, but those weeks following my diagnosis, when it wasn’t clear how well I would respond to treatment, there were some moments.
I remember a particular session involving a patient who wanted to be placed on disability because he had panic attacks when he saw his supervisor. He came to my office and wanted me to write another medical excuse for his work. Unfortunately, I lost it with him because I didn’t know the outcome of my treatment, and it was coloring everything for me at that time. I said to him: “Man, you walk through that door, you put one foot in front of the other, and when you feel anxious, you take a deep breath.” I told him that I had recently been diagnosed with cancer and that this is what I have to do.
That was the first time and only time I had allowed my own issues to intrude upon my practice. I do not know where it came from. Just because you are a psychiatrist does not mean that you don’t need some support and someone to talk to. I told myself, I am stronger than that, and I always try to respect that professional line.
The other sensitive subject for me at that time was suicide. I hear the word suicide almost every day. People with depression are in misery and they get stuck in their misery, which is tragic. When my patients, who were otherwise healthy, talked about killing themselves, and I wasn’t sure I was going to make it or not, that was difficult.
I was seeing patients at that time and was working with this brilliant student from Mexico. She had attempted suicide three times. I decided to tell her about my own precarious health issues. I wasn’t sure whether it would be good or bad for her to hear. I felt the need to share my own story with this young woman, not to make her feel guilty, but to open her eyes to the fact that there are many people who really want to live and don’t always have the choice. I tried to point out to her that she was not valuing her life. That was the second time that my diagnosis directly impacted my practice.
I asked if he felt time pressure, and if he had limited life left, did he want to spend his remaining days at work?
In the beginning, I was conflicted, because I thought, although we have been in the States all of these years, this is not home for me.
I thought, Oh my God! I am going to die! I got on a plane, went to my town in Puerto Rico, and visited the cemetery and my father’s grave. If I was going to die, I did not want to die in Greensboro. I started looking into how to get my medical license renewed in Puerto Rico, figuring out how I could join a practice back home. It would not be so hard to do.
My decisions were not necessarily based on work, but [were] more about where I wanted to finish out my life. It isn’t about the nature of work itself, because I love what I do. If anything, I think that my practice has kept me going; it provides structure and a sense of purpose. I get up in the morning; I put my energy into helping other people. It helps me keep my issues on the back burner.
If I were told that I was going to die soon, I would go home to be with my people and speak my language. No more speaking English with an accent. I would surround myself with the music, the salsa, all the familiar smells and sounds I knew growing up. I would go to the church. I lived downtown in Puerto Rico, and the church is always open. I would attend Mass and sit on the same bench where my fath
er used to sit, and that [would] be my life. Maybe [I would] work more on my art.
I used to paint, but then you get busy, and all those things are nearly impossible to keep up. So, when death did not come, and I had a better chance of survival, then plan B became not to change anything, just to stay where I am.
This is my life for now. I get up. I take the dog out. I get the paper, which is full of somewhat depressing news most of the time! I make coffee, and I do a lot of meditation. I have a rich prayer life that I’ve had since I was a little guy. I do a lot of self-sustaining, self-healing work. The support of friends has helped a lot. I was more private, but Lizette insisted on telling people about my illness. I don’t know how many prayer circles were praying for me.
When they diagnosed me, I was covering the Student Health Center at A&T as well as my private practice. They heard the cough that didn’t go away, and they were worried. I had to tell them what was going on because I didn’t know if I would have the stamina to keep doing everything. So, all these women formed a circle around me. They all hugged, and I was in the middle. I was this “stick” coming out. I mean, all that love in there. It makes a difference.
The rosary is an integral part of Catholicism. People were coming by and giving me rosaries, including one from a patient with whom I was very close in my practice. She said to me: “You know there is something going on with you. Tell me about it.”
I was in the process of closing down my office, and I [thought] that she deserved to know what was going on. She pulled a string of beads out of her purse. It was the rosary she used at her wedding. “Something told me that I had to bring you these today,” she said.
Grief Connects Us Page 17