[As presented at the American College of Physicians-Alaska Chapter meeting http://www.acponline.org/meetings/chapter/ak-2008.pdf on June 26, 2008]
Many months ago, Rich Neubauer asked me to speak to this esteemed group of physicians and guests about my experience as the spouse of a physician with serious illness. At the time, I agreed.
However, as this date approached, I began to panic. What could I possibly offer this audience? Did I really want to think back on difficult experiences, relive painful moments? Some people are not reflective by nature. "Life happens, and then you get on with it." For others, painful events can paralyze their daily living. With me, I cannot predict when my current "get on with it" attitude may suddenly morph into "wallowing in it." That, my friend, is the nature of grief.
In the last fifteen months, I have read much about the value of confronting grief. Events leading to grief, when acknowledged by others, seem to lighten the individual burden. Ignored, or suppressed, grief works much like an iceberg, the underbelly eventually emerges, often at unexpected times, and often explosively. Once I realized this talk was an awesome opportunity for me to share my story and grief, I relaxed. I now offer you nothing but this very personal story. So thank you in advance for listening to this story and participating in my healing.
To begin, let me tell you about my husband, Tom. First, the vital statistics, he was born in 1949 and he died Feburary 4, 2007, a Superbowl Sunday. I was his only wife, and he my only husband. He was the only father for our only son. He lived a life he loved and he made sure he enjoyed each and every day.
I've brought a copy of Tom's obituary. It is filled with details of his life. However, you will not find within it many of the details I tell you now.
When Tom was 17, his mother died of a brain tumor; at the age of 18, Tom's brother was diagnosed with severe schizophrenia, and at 19, Tom was diagnosed with advance-staged Hodgkins Disease. It was quite a run of bad medical events for a family.
For Tom, he was fortunate that experimental radiation treatment at Stanford University saved him from demise. So, at this early age, Tom learned first-hand the patience part that can go with being a patient. A couple years after his recovery, Tom chose to pursue medical school training. This was a new goal and although his father was a renowned medical researcher, Tom's primary life goals revolved around surfing and rock climbing.
Tom, as a lover of world cultures and people, entertained a career in tropical medicine. After a fun training in London, Tom eventually realized that without a spleen, his interest in a tropical medicine and exotic travel might be foolhardy. That said, he ultimately choose neurology as his primary specialty because he said it was the most interesting. Personally, I think he's right and I'm sorry he's not around to enjoy the emerging discoveries of neuroscience.
Tom had a stint as a neuroscience researcher at Stanford and Yale. Yet it was in 1991, when he began as a full-time practicing neurologist in Anchorage, that he really shined. He enjoyed seeing patients and hearing their stories as well as solving their medical issues. Although Tom's days were long, he seemed to have a knack for enjoying the present, be that with his patients or with his medical colleagues. I don't know if Tom was born with the "enjoy each day" persona or if it developed based on his early adversity, however it was clearly a part of how he lived his life. After Tom died, I heard from many patients who adored him. I believe his genuine interest in their lives was as healing as the medical advice he dispensed.
Since I was allocated an hour for this talk, I decided I would begin with Labor Day weekend in the year 2000. Our family was intending to spend the three-day weekend on our sailboat in Kachemak Bay. Having already organized for the trip, I was simply waiting for Tom to break free from hospital rounds. I also knew his chit-chatty habits could be a time sink. Finally he called. He would be home after a stop at the Costco pharmacy. It's a long story, he said. Then the story came forth -- a chance encounter in the hospital corridor with a cardiologist colleague led to a brief discussion and an immediate invitation for Tom to have a "stress test." I had no awareness that Tom had concerns of potential symptoms of heart disease. Perhaps Tom really didn't either, because when the impromptu stress test ended and the cardiologist told Tom the test was abnormal, Tom's first thought was that he was joking and such a joke was in very poor taste. Unfortunately, it was not a joke.
So in addition to a prescription for nitroglycerin, Tom was scheduled for an angiogram after this somber holiday weekend. I asked many questions...but we had to wait for answers.
Tuesday arrived and Tom saw patients in the morning. In the afternoon he slipped away for his angiogram. Within an hour of the results, Tom was being prepped for three-vessel cardiac bypass surgery. His left main was 98% blocked, two others 95% and 85% blocked. Shit, I had barely figured out what an angiogram was. I learned later this surgery is called a CABG (cabbage), and in doctor lingo his situation was referred to as the "widow-maker".
During pre-op, there was a scan of the carotid arteries. Tom's were fine, but there was the detection of a "mass" in the area of his thyroid. I distinctly remember being told the "mass" should be evaluated after recovery from surgery. At the time of these words, Tom's brain was filled with Ativan. Later, he had no recollection of a thyroid mass.
Tom's heart surgery was a success. He was out of the hospital in three days and back to seeing patients in the office within two weeks. Although he had cardiac rehabilitation classes he planned to attend, he often didn't make it due to the nature of life in private practice. It was hard for Tom to throttle back and say no to requests from colleagues and patients. He didn't want to disappoint them.
Four months after Tom's heart surgery, I convinced him there was a thyroid mass that needed evaluation. Verifying the need, he was subjected to the painful pokes and prods required for cell biopsy. Since cell type was deemed indeterminate he would need a thyroidectomy. This time he checked into Alaska Regional Hospital, feeling he should share his business with both hospitals since he had privileges at both. I'm blurry on details of this procedure, most likely because the post-analysis was good. No thyroid cancer. However, Tom now required a lifetime of Synthroid and monitoring TSH levels.
Later I discovered the medical literature documents the significant, though latent, side effects that often result from the type of radiation Tom received for Hodgkins. Despite this, Tom had never pursued regular follow-up with a physician. For the first time, he was under more regular surveillance -- with an endocrinologist.
Also, this was also a fortuitous time in that the Alaska Native Hospital was looking for a second neurologist. Tom applied and was hired. When he closed his private practice I know many of Tom's patients and colleagues were saddened. From my perspective, I was thrilled. I knew the private practice life could be unrelenting. Now Tom could focus on patient evaluation and treatment and he did not have to run a business. He came home for dinner, he was around for birthdays -- he thought he had the best neurology job in the whole country. He had a more wholesome life.
Fast forward to 2004. Tom was at work showing a medical school student a new stethoscope, he demo-ed by putting it on his own heart. What he heard surprised him. A loud rub. At least, that's what I was told. So four years post-bypass surgery, Tom made a first visit to his cardiologist. This latest twist was aortic stenosis. A valve replacement would be necessary when symptoms were too much. Okay. The cloud over Tom's heart health was darkening.
Nonetheless, life was pretty normal. In Spring 2006, Tom, inspired by a group of doctors from his work, signed up for a 2 ½ mile swim from Alcatraz Island to the mainland of California. He also was riding his bicycle to and from work. However, I had noticed Tom seemed low-energy and run-down. I fretted when he was later than expected on the home bicycle return, which included a lengthy uphill. I wondered about Tom's choice of activities, particularly since the diagnosis of aortic stenosis.
In addition to noticing Tom's general malaise in that spring, I had endured many nights with Tom coughing frequently. It kept me awake and I suggested he should be checked out for his cold was lasting too long. Finally, June 15, 2006, a day I will never forget, Tom called me at my work. He had been for a chest x-ray. It showed a large mass on his lungs as well as lots of lung fluid. "What does that mean?" I asked. He replied, "It's something that will probably kill me."
I left work to join Tom at the hospital. This same day included a quick visit to the oncologist, a more extensive visit with the pulmonologist, and eventually a radiologist who drained fluid from Tom's lung cavity. Next day, we would learn more about the cell pathology. Once again, Tom was in charge of patients in the morning, and was the patient in the afternoon.
Uncertainty creates a restlessness, a limbo. One lies awake at night wondering what is ahead. By the next day, enough procedures had occurred that we had a diagnosis. Non-small-cell lung cancer, stage 3B-inoperable. So much for the concern about the heart! This was an unexpected twist to the prior medical concerns.
What now? Standard protocol in any life-threatening diagnosis would be a second opinion from a research medical center. Traveling out of Alaska in the middle of tourist season is not an easy trip to book. We ended up flying all night to Boston to see a lung cancer expert at the Dana Farber Cancer Institute. Tom was not unhappy that I could only find first class tickets. At 6'4" and feeling crummy, he wanted to be well rested. "When I have my appointment, I want to have good "performance status" and look like I'm worth saving." Is that how physicians think? Whatever, first class was less than fabulous but at least Tom had some extra leg room. All this for a 30 minute appointment.
It was a relief to return to Anchorage. Being treated in Anchorage is so much simpler than a big city hospital setting.
It is a blur from here. News had passed like wildfire to family and friends. All of the sudden, the phone rings constantly. The same questions over and over. Our house has a morbid pall over it. I lie awake at night. I look at the Internet and try to learn new terminology. Did you know that not every physician's spouse is in the medical field? I had to educate myself about much. Tom's oncologist said it was the "wild, wild west" in the experimental treatment world. He would do whatever Tom decided. Clinical trials, different types of lung cancer, staging... Through the years with Tom, I gained familiarity with neurology lingo. After all, I overheard night-time phone consults, drug-company talks, and was not beyond glancing at table of contents of Tom's many journal subscriptions. But when it came to oncology, I was a complete novice.
Somehow, a treatment plan emerged. First a pleuridisis. Simultaneously, lung fluid was sent to a biotech company in California for a gene mutation analysis. With the right mutation, a targeted treatment with the drug Tarceva would the choice, otherwise standard chemo. Tom endured a painful pleuridisis and nine-day hospital stay for recovery. After getting out, we finally received the results of the gene mutation analysis. Results, not positive for Tarceva as first-line treatment, so chemotherapy it is. Radiation was not considered viable due to prior radiation levels to which Tom had already been subjected.
Although some people are skeptical of the medical establishment, Tom was not -- he believed in it despite its unsolved challenges. Knowing the gravity of his situation, he chose to pursue clinical trials available in Anchorage. He qualified, enrolled, and was randomized to the group that would receive the monoclonal antibody Erbitux (aka cetuximab) in addition to standard protocol chemotherapy. What stands out in my memory during this phase was Tom's interaction with the clinical trial nurse. The trouble began right off the bat. She recognized Tom from prior medical settings and her first words were, "So now you get to see what it is like to be a patient." Easy-going Tom almost blew a gasket. With anger he retorted he knew well what it was like to be a patient.
Compounding this disastrous interaction, the clinical trial nurse moved on to explain the mechanism of action of the drug being trialed. At this point, Tom interrupted and indicated that this was the mechanism of action for a different drug. Indeed, she conceded, she was giving the wrong drug talk.
I can only conclude it must be intimidating to work with physicians as patients.
It occurred to me as I was writing this, the physician who becomes a patient is not unlike an adolescent. Those who have raised adolescents may understand best. These creatures oscillate between mature thinking and immature, self-centered, irrational action. Their grown-looking bodies can deceive us of their inner immaturity. One must be astute in judging which part you are dealing with. For the physician as patient -- I would suggest an approach where they must first be accorded patient status, while secondarily honoring their medical expertise and experience. It surely must a challenge.
In August 2006, Tom's 18-week six-cycle regime of chemo began. His clinical trial required a weekly infusion. Tom never wanted a port for all these infusions - he had obsessive concern that it was going to get infected. Nonetheless, starting IVs was an ongoing challenge due to radiation scarring. IV start anxiety led Tom to take an Ambien to relax on infusion days. Unfortunately, it once again meant if I was not present to hear an exchange of medical care/treatment info, Tom usually forgot it. Again, conveying information when someone is drugged is not always effective.
Depending on the phase of the chemo cycle, Tom's life was okay to miserable. He continued to work and attend university Russian class as he could. Boldly, he bought a season pass for downhill skiing.
For a moment, I want to address the issue of paperwork and bureaucracy. Having a significant illness generates a full-time job managing paperwork. One helpful move by Tom's health insurance company was the assignment of a case manager. We were assigned one person with a direct phone number who would handle all claims, pre-authorizations, and advise us of upcoming requirements. This was a commendable practice and eased some of the bureaucratic maze.
Tom had disability insurance. It didn't pay much unless he was fully disabled. Medically, this would be uncontested. However, psychologically, disability designation was not a choice Tom could accept. Paradoxically, Tom who always looked forward to vacations and time off, once he became very sick, what he wanted more than anything was to have a normal day. He often commented, when very sick, normal days are what you wish for most.
By now, I had decided to use one of these online web-tools for keeping people up to date on the medical status of Tom. With the help of the free web-tool, Caring Bridge, I was able to cut down on phone calls and also let people know what was going on. It was funky at first and I explained to Tom that it was a big help to me. Over the months, Tom often enjoyed time with a laptop and to read comments and email friends and friends. When I closed Tom's "patient page" on Caring Bridge, I was able to print out the entire log. Someday, I will read it in full. But I'm not ready yet.
Friends and family wondered what they could do to help. It took some time to realize it was important for people to help in some way. Someone came and vacuumed my house. Food was prepared, although Tom's appetite often was poor. I learned to ask people to drive Tom to infusion appointments, take our dog for a walk. Our son, Colin, was not too thrilled with outside people being in our house and constantly talking about illness. At 15, he wanted life to be normal and happy again.
My anxiety increased as I watch Tom's side effects come and go. No one seemed to pay attention to all Tom's medical issues at this point. After Tom's initial oncology assessment, he was launched into a "conveyor belt" of chemotherapy. Infusion nurses handled the weekly protocol. I hope by now you realize Tom was not a simple medical case -- it was as though these silos of medical specialty had no director. I felt that I needed to do it. And I needed to do it fast. I often was inclined to want to contact physicians and ask questions. Tom very much resisted. I think he felt they were busy and he really did not want to be a demanding patient. That was his approach.
That Thanksgiving we spent with good friends. It was almost a normal life. In early December, Tom had his last chemo treatment. Follow-up CAT scans showed a decreased tumor. During the oncologist appointment Tom was told, "You are doing great." Although we knew Tom's situation was terminal, we were looking forward to a respite from debilitating treatment. Tom got an A in his fall Russian class and enrolled in the next level class for spring semester.
However, in those dark days of winter, improvement was elusive. Tom never rebounded from his final chemo. His weekly infusions of Erbitux wreaked havoc with his magnesium levels. At one point, Tom was scheduled to go daily for magnesium infusions. These daily trips were very taxing. In retrospect, Tom probably contributed to this through his choice of vocabulary. He would tell a nurse practictioner that his exercise tolerance is poor - if I was asked I would say Tom could take only three steps before stopping. Perhaps home visits for infusion would have been more humane, but I didn't learn about those till later.
Then, one infusion Friday in January, Tom was very weak, sick to his stomach, and dizzy. The infusion was delayed. We were sent home. The next day, I felt increasing concern as Tom's symptoms were not abated and dehydration became a concern. Although I knew Tom wasn't big on having me call his physician, especially on a weekend, I asserted my own judgment, and brought Tom to the E.R. There, in a negative pressure room, I vividly remember the on-call oncologist, who did not know Tom well, telling him he was the patient and he would have an MRI of the brain.
I knew what Tom feared most -- metastases to the brain. The next day, Tom had the MRI. After, he asked the lab tech if he could look at the scan. How many MRI scans had Tom read in his life? This one was a really scary to read. As he looked, I saw him become visibly relieved. No brain metastases. He was wheeled back to his room. A short time later the phone rang, it was the covering oncologist. Tom's MRI was abnormal. WHAT? While Tom did not have cancer spread to the brain, he had suffered a small stroke. Tom jumped out of bed, IV fluids attached, and attempted to travel back to radiology to see the scan. Fortunately, nurses came to the rescue and helped him into a wheelchair with appropriate arrangement of all his IV tubes. Now entering the bowels of the hospital, Tom met with the radiologist. A different view of the MRI scan was flashed up on the monitor. This was the part that showed the stroke and its imploded areas. Even I saw it. Tom was very silent. He thanked the radiologist, and crestfallen, returned to his room.
This hospital visit became prolonged. It was a relief to me to have a bigger picture of his medical complexities being addressed ... pulmonology, cardiology, oncology, endocrinology. Tom's primary oncologist returned. Pulling me into the hallway hospital, he asked if I could handle Tom dying at home. I must say, I was speechless. The last words I had heard him say about Tom's medical situation was that Tom was doing great. And although I knew Tom has suffered some setbacks, I still had a few shreds of hope. Were we not looking at a different clinical trial, and rejoicing with the shrinking tumor? I didn't quite follow the path of reason. I was told I was not facing reality. That was painful -- had he assumed I was experienced with this illness process, or that Tom was explaining his health status to me?
Later that day, I recall asking a covering pulmonologist, could Tom die soon? Yes, he told me. Tom is critically ill and something could easily happen at any moment. This was the direct response I needed. Our 15-year-old son, Colin, had not been willing to come to the hospital. He procrastinated each offer, saying he would wait for Dad to come home. After receiving the sober assessment, I realized I wanted to insist he visit his Dad in the hospital. When pushed, he did and I am very glad. As it turned out, Tom soon was released from the hospital and sent home. We enrolled in home health care, to help with nutrition, safety and physical therapy concerns in the home. They visited once and I was given a card with a 24-hour contact number for support.
Three days later, I had the chance to call that number. It was evening. Tom's status had changed significantly. He wouldn't talk, and he seemed to be sweating profusely. I called the number and was told to give him an Ambien. I did. It was a long night. In the morning he pushed away pills, vomited green bile, and rattled as he breathed.
I remember an oncolgist who lived near us had said call me anytime, I live near you. I dug out his number and he arrived at our house within minutes. He offered assessment. And comfort. He contacted the primary oncologist and relayed his findings. Discussion resulted in arrangements to improve Tom's comfort. Oxygen was delivered and a nurse came to set up home IV for fluids. I was ecstatic these could be arranged at home.
I later learned this nearby oncologist had a father die of lung cancer when he was 16. Again I pondered -- what drives physicians to become physicians? In today's world of paperwork and bureaucracy, I hope you can think back to those early motivators.
The delivered oxygen was deployed. The home IV equipment was delivered but there was a glitch. No one could get the IVs started on Tom's irradiated and dehydrated veins. After heroic attempts by three different people, it was decided to transport Tom to the hospital. There, he could have a medi-port installed the next day. I called 911 and asked for a medical transport. An ambulance came, four men to lift Tom from his bed and into the ambulance. I got to ride with Tom in back of the ambulance. His visiting sister Britt remained behind to coordinate with our son who was skiing at Hilltop. Tom apologized for vomiting in the ambulance. It was a quick trip and soon Tom was settled into a hospital room. More tries to get IV started. They called the flight nurses to try their skills. Finally, an ER doctor put an IV into Tom's jugular vein. It was quite miserable to watch. Tom signed paperwork to have a port installed the next day. Wow, what a day. It was 7:40pm and the cafeteria would close soon -- I told Tom I would be right back -- "Don't go anywhere."
Minutes later I returned, Tom's head was turned away, the blankets disrupted, he was not moving. I put down my tray of food and ran to the nurses' station. There a cluster of nurses were giggling and laughing. I begged someone to come to the room. It was confirmed Tom was "gone."
I am convinced Tom chose when to die -- he did not want to die at home, he could not die with family present, and he just was out of steam. I now made phone calls to Tom's sister and to my son. They came to the hospital to say good-bye. A small quilt had been laid over Tom. This comfort quilt had been donated by a local quilters group. It gave some dignity to the shock of death. Tom was the first dead person I had ever seen.
It was the end for Tom, but not for the rest of us. In the aftermath of his death, I learned Tom would not be eligible to be an organ donor due to his medical history. I was disappointed since it was a psychological comfort for me to think of him bringing benefit to others. I treasured letters of comfort from his physicians and appreciated greatly those who attended his memorial service. Tom counted on his colleagues and he trusted them. It was really important for me to see they truly cared. One predicament, what to do with the piles of unused medicines, was solved when I learned of a nurse who, in spare time, collected such items to dispense to third world countries. Again, searching for some positive gain from such a heartbreaking event was critical.
I'm almost done, but wanted to tell you about one more event. One week after Tom died, I received an invitation to join a group of librarians going to Russia. It was a trip Tom would have loved. So last fall, I traveled to Moscow and St. Petersburg. I brought some of Tom's ashes. Now, at Moscow's Novodevichy cemetery among Russia's greats, Rostropovich, Chekhov, great Russian scientists, and famous leaders, lies a part of Tom. I am certain Tom would be pleased.
I thank you for patience in listening to my story about Tom. I applaud you for attending a conference on a topic like this and am thankful to each of you for the important work you do.