Whatever a person might believe, the spiritual connection is powerful. I think that the more you have accessed that connection, the better. It’s a very important part of my life.
Irving has been pleased with his care at the Cancer Center and with his medical team. He feels supported but not because he is a physician. He has found that the staff strikes a healthy balance of providing information and support.
We spoke about how his illness has affected his family.
It is still something we don’t talk a lot about. Each time I go to an appointment, my wife texts me, and if I do not answer within five minutes, she thinks something is wrong. But we are good. The exercise of creating our will … has put our situation in perspective.
My wife often contemplates her own death. She requested to be cremated, but I told her, “No, I want my full body in Puerto Rico.” She balked at the idea, so the compromise is that we are going to have my body preserved for the Mass, and after that they can cremate. In Catholicism, the ashes cannot be scattered. Although every other Catholic will do that, in my tradition, there is a cemetery.
We took care of the graves in Puerto Rico. We purchased flowers for Mother’s Day, Father’s Day, All Saints’ Day. We bought flowers for Christmas. It is a sacred memorial place, and my father’s grave is there. As a compromise, my ashes are to be brought to this spot. I asked to have my remains placed in my father’s grave, which will be my mother’s grave one day, too.
When I became sick, my daughter was in California and read three books on spices for cancer treatments. She flew to North Carolina and insisted on cooking these weird recipes. Initially, green tea was the thing. So, three times a day my wife would knock on my door and bring me green tea. I drank a lot of green tea. It was important for my family to feel useful, like they were doing something.
Everyone has been so kind. My son-in-law, Ben—I love him to death—has been very, very supportive. I was hesitant about involving my mother, because she worries. Interestingly, focusing on me has given her a new lease on life because she wanted me to be well. I think that keeps her going. As long as I’m okay, as long as her kids are fine, she is okay.
Paul, the neurosurgeon in When Breath Becomes Air, said he and his wife were going to separate after their residencies and it took his illness for them to get together again. He said he would not wish such a disease on anyone as an impetus for reuniting. There are two sides to this story. There can be some positive, surprising things that come out of illness. Friends whom I have not heard from in forever have been in touch, letting me know that they are praying for me.
I wanted to know if Irving felt that he was making decisions differently as a physician than he might if he were not trained as a doctor.
As a physician, you want to preserve life at whatever cost. And sometimes the cost is pain and suffering and a burden on the family. We have to get to a point where the decision comes from the patient. The physician needs to be a consultant. Often, if the doctor says to do this, then the patient will comply, even as you, the physician, are wondering whether the treatment might be going nowhere.
You are trying to do the best thing for your patient; you are doing everything, and even some more, but eventually you reach a point where you know it’s time for an honest conversation.
We say it’s not going to happen, but we never know. We need to put certain requests in place…. Do I want to be given hydration, nutrition, life support, all these kinds of things? We may have to face these decisions in the future. In my case, I have decided that I do not want any intervention.
There might always be one more medicine that could prolong my life for a couple of months. For me, it’s important to be prepared to die and to die with dignity.
You know, my church is against everything that I am saying because in Catholicism you honor life from conception to natural death. Even so, I think people should be given the right to choose whether they want to terminate their life. Prolonging life and suffering or making your family suffer does not preserve your dignity.
Is he in support of assisted suicide, I asked and, if so, how does he reconcile this with his Catholic faith?
In Catholicism, the image of the suffering Christ is very strong, so you align your own suffering with this. I watched 60 Minutes the other day and they were debating these ideas. They described an elderly couple; the wife [had] become terminally ill and wanted to end her life. Her husband, or partner, was instrumental in getting the law approved in California. They gave her some pills, they took a walk, and then they went to bed. They cuddled and she passed.
The man in the interview described the memory as peaceful. In contrast, another woman was put into an opioid-induced coma and she took ten days to die. The family witnessed her agony for all those ten days.
The point was that if the care provider could have allowed her to die without suffering, isn’t that more humane than prolonging the pain? I am pretty clear about my wishes when it gets to that point for me. I would be ready to let go.
We spoke about what advice Irving has for patients who found themselves in situations similar to his own. His focus reflects the kinds of choices that Stacy’s aunt Diane had made for herself, to stay local and not uproot to a larger, more famous medical system for care.
Look at your life. What are the changes that you need to make? Focus on each day, on your relationships; find peace in yourself. Prioritize what means the most to you. Materialism is so rampant, and we give so much value to things, money, fame. We don’t give value to community and to self-sacrifice, this body.
Be more self-aware; [do] a little meditation and work. It is not a good thing to bury yourself at work, and maybe I did some of that initially. It is important to find balance in your life.
Your relationship with your team of doctors really matters. When I was first diagnosed, my sister, a physician in Texas, said to me: “Just come to Houston.” By then, I had met my team of caregivers in Greensboro and felt confident in the treatment they advised. I have heard stories about people who have bad experiences in other places. Feeling comfortable communicating with your doctors and asking questions is paramount.
Irving feels fortunate to have been spared significant side effects from his treatment, such as deafness, which can be the result of some types of chemotherapy.
If I lost my hearing, how could I practice psychiatry? Not working was never an option, unless they told me I only had six months to a year. Then I would stop. Otherwise, I was going to practice here or in Puerto Rico; I love this too much to walk away.
Approximately one year after this interview, Irving began to experience headaches, tinnitus, vertigo, episodes of light-headedness, “kaleidoscopic” visual events in the right and left lower quadrants, nausea, balance difficulty, and irregular blood pressure. A repeat MRI of the brain did not show significant change, but a lumbar puncture (spinal tap) showed cancer cells in his spinal fluid, a condition known as carcinomatous meningitis. He underwent whole-brain radiation treatments and elected to retire from working as a psychiatrist. As of this writing he continues under treatment for his cancer and further scans have stabilized, as have his symptoms. The staff at the psychiatric hospital threw him a wonderful, emotional, and supportive retirement party. In the aftermath of Hurricane Maria, a Category 5 hurricane that destroyed much of Puerto Rico in September 2017, he has reconsidered his plans to return to his homeland.
It has been a privilege for me to hear Irving Lugo describe his transition from healthy to cancer patient and to witness the decisions he has had to make. His experience exemplifies current successful modern cancer care, which converts a previously fatal illness into a chronic condition, punctuated by episodes of treatment. He has tried to maintain normalcy as far as possible, incorporating these treatments into his life as another set of chores, adjusting his expectations as his disease progresses, striving for dignity for himself and his family as a backdrop for his decisions.
WILLIAM E. WILLIAMS
Wi
lliam E. Williams is a slight, bald, soft-spoken man with a winning smile and a hearty laugh. A musician and worship pastor for a large church, he arrived in our local Emergency Room following a generalized seizure at age thirty-eight. I operated on him for a brain tumor at the time Victoria was hospitalized. At first glance, William’s head looks normal, but on closer inspection I can see a thin scar and the imprints of the small titanium plates used to reattach his skull to the edges of a surgically created bone flap through his thinned, irradiated scalp. He otherwise bears no outward signs of his struggles with brain cancer. He is now forty-four.
My interview with William was one of the first times I have talked with one of my own patients, years later, about his experience. Other people I’d interviewed were either healthcare providers themselves or had connections to the medical profession. What was it like to navigate the healthcare system without those connections? I wanted William’s perspective on being a patient, what it was like to go through brain surgery and overcome a surgical complication, and how he lived with the specter of brain cancer at such a young age.
I was thirty-eight years old. I had never had any major sickness in my life. So it was a shock. I didn’t have any symptoms. No headaches, no blurred vision, nothing. All of a sudden one day, I had a grand mal seizure, and that’s how I met you. And it turned out to be a grade 3 glioma. At the time I had no health insurance, so I was able to get on Obamacare and that’s how we were able to pay for things.
When I had a seizure, I was actually driving. I had stopped to get gas. I turned the pump on and sat in the driver’s seat waiting for it to fill up and that’s when it happened. My nephew was with me.
He lost consciousness. His nephew called an ambulance, and when William woke up, he was in the hospital.
I had surgery [in December 2014], and that was to remove the glioma. Chemo, radiation, both started immediately after, like in January or February. And I stayed on chemo for, I think my last chemo treatment was February 2016, a year later. And radiation was like three or four months, so that ended March or April 2015. I did occupational therapy and physical therapy. I made a pretty much full recovery. I still get checkups every six months, MRIs, and so far, so good. And that was six years ago.
At the time of William’s surgery, we had to make the decision to take out the whole tumor, and that means being more aggressive. His tumor was growing into and around normal brain (these were the motor control areas of the right side of his body); ensuring removal of the whole tumor meant risking damaging normal brain.
When he woke after surgery, William experienced some paralysis.
I discovered that I could not move parts of my right side—actually, all the right side. My right hand as well. But it was worse on the leg side.
… I could walk, but just not well. You go through stages. I remember being in ICU, then they moved me into a regular room. I was using a walker. It just felt like I had a club foot. So, it took me a while to kind of deal with that, and I kept going to therapy and stuff like that so eventually it got back to normal. I exercise and notice that this whole side, my thigh on this side, is shorter, thinner. It took me a while to be able to have that coordination to actually jump or run. I’m right-handed, but I don’t use my right side as much as I use my left side. There was numbness and paralysis [in the arm and hand]; it just wasn’t as severe as the leg.
Aggressive removal was the best decision we could have made, yet afterward, it felt like failure. I grieved. Victoria’s illness was sensitizing me to the continuing effects of my actions on my patients and on their networks of family, friends, and caregivers.
I was preoccupied with worry about my sister at the time, and when William lost the use of his leg I felt both unanticipated sadness and something akin to guilt. He had trusted me. I was the guy who said, I’m going to take care of you. I’m going to cut your head open. Everything is going to be fine. If we hadn’t taken out as much tumor, it would probably have regrown and the returning tumor would likely have caused him weakness as well. The surgery was the right thing—but the person doing the surgery carries a burden. I had made a commitment to William that he would be fine, and he was not fine. I grieved his loss, but also my own. I couldn’t just stuff that grief away and move on to the next patient; I had to feel it.
When we spoke, I asked him what it felt like to have a complication after surgery and then deal with the doctor who did your surgery.
It’s not what you said. It’s the manner in which you said it. I felt like it was going to be like not a big deal.
I couldn’t fathom my brain being open. But you assured me that you’ve done this before and it’s going to be fine. So, I went into it with a certain peace. I woke up, didn’t know what happened. Didn’t feel any pain. I was like, “okay.” But then I realized shortly after I woke up that I [didn’t] feel anything … It’s almost like I’m glad that it was that way because I’m a worrier, so if you had told me it could cause paralysis, if you had told me anything like that, I would have been going into surgery with that on my mind.
When he first realized that he couldn’t move his leg, he felt panic.
Because of course I’m thinking about music. And so I’m like, What does this mean? That was my first thought. And my dad was there. He was like “Don’t worry about it. It’s going to be okay.” And he started praying.
Was William angry at me? At circumstances?
Actually Dr. Stern, I was very pleased with you. I’m not just saying that because you’re sitting in front of me. When I got out I was singing your praises …
I’m grateful. I’m glad I met you. I’m glad that you were my surgeon. And please don’t ever feel guilty about anything. You’re doing a great job. You’re saving lives.
As he worked in physical therapy to regain mobility after surgery, William was also undergoing courses of radiation and chemotherapy.
The worst part about radiation was preparing for radiation. They put this mask on. Oh, man, I cried. And literally it took, the nurses had to give me time. They brought my dad in there and he just consoled me. I just couldn’t. I don’t know what it was about that mask, and then they ended up giving me one with the face cut out. I’m not claustrophobic; I think that was the moment that the magnitude of what I had already gone through hit me. And then now there was these other steps. It’s like, this isn’t over. I think it’s a control thing. Being pinned down by your head and your face and there’s holes there that don’t move. It was just a lot, a lot to take in. But I got used to it because you have to go every day, like four months.
[Chemotherapy] wasn’t too bad. I just had to get used to it because I took the pill, so I was on the pill [Temozolomide] and it made me sick for a while, and it made me very tired. But it wasn’t anything like the horror stories I had heard. I was prepared for the worst so it wasn’t that bad. I remember being very nauseous but it was more so in the beginning stages and then my body got used to it and so it was fine. Radiation was probably worse than chemo because I felt it. I was experiencing that.
It was about four months before he felt that he was beginning to get back to “normal.” Nearly six years on, he still lives with the effects of surgery and treatment. He is on medication, and has regular MRI scans.
The fact that we see no enhancement or return of tumor is very good, but the surgery also meant that William lost the ability to walk with ease; he lost some of his ability to play music. While he continues to work as a musician and worship pastor, the post-surgery paralysis has had an impact.
I’ve made a lot of recovery, but still not quite. My rhythm is different, and my coordination definitely suffers….
My main instrument is organ. I’m still able to play, just not as well as I’ve played. My skill level is not, my coordination is not there…. Sometimes, if I play for a long time, my hand will lock up. That never happened before. Oh, I forgot that I still have seizure activity. It’s nothing like before, but I’m on medications for seizures.
But my
church has been gracious, so I still have my job. I just don’t play as much. I play when I have to or I want to. But we brought in some other musicians that can handle that and I’m more administrative. I still teach music, I can still sing, so I do those types of things. We just shifted my role a little bit.
William tries not to dwell on his prognosis, which anticipates recurrence of his tumor, but says that of course he thinks about it from time to time. He found his first oncologist—who speculated that with the use of a particular medication he might have seven years to live—unencouraging. So he fired her, and began treatment in Charlotte with Dr. Ashley Love, whom he calls “absolutely amazing.” I asked what Dr. Love did differently.
She gave me hope. Of course, the treatment, well first of all, the first oncologist I had, she recommended a medication that was … a dated medication for my situation. So that was the first thing. [Dr. Love] was up on her game. She knew what she was doing. But then on the first day she brought in a testimony. One of the girls that works for her had the same thing I had, and she had been cancer-free for I think like eleven years. So immediately, I had hope. Where this other lady was like, “Well we can try to get you seven years.” And [Dr. Love] had a wonderful bedside manner and stuff like that. And I needed that because I was traumatized by the whole experience. After two or three years I moved my oncology back [to Moses Cone in Greensboro].
He is currently seeing my colleague Dr. Vaslow, a brain cancer specialist who reminds him of Dr. Love and makes him feel comfortable.
I asked William how he has managed to deal with his diagnosis, received at a young age, and its aftermath. Not playing in church has been an enormous loss, one he still grieves. He is in counseling to work through issues related to his diagnosis and treatment, as well as with his prior experiences of trauma.
Grief Connects Us Page 18