On the week before my first interview for a hematology and oncology fellowship, however, my mother was diagnosed with metastatic breast cancer. She had hit that magical 5-year mark just 1 month prior and thought she was cancer-free from her original diagnosis when she felt “funny” as she slept on her left side, so she brought this to the attention of her doctor. The cancer had spread to her lungs and bones. I completely fell apart at the news and wasn’t sure how this diagnosis was going to change my future.
After much discussion with my family I decided to continue the interview process and complete the application for fellowship, for better or for worse. I am not sure how I came across on my first interview 2 days after receiving the news but soon after I matched into a fellowship program.
The 3 years of my fellowship were spent trying to balance the duties of being a mother, wife, and physician, all while trying to help my parents maneuver to and from multiple medical facilities to obtain cancer care and ultimately make difficult decisions with them at the end of my mother’s life, which came during the third year of my fellowship. The experience of losing a loved one to cancer during this pivotal time in my oncology training fundamentally shaped my understanding of the concerns, needs, and fears of patients and their families as they navigate the unpleasant realm of cancer diagnosis and treatment.
Most patients and families are filled with anxiety and fear prior to follow-up oncology visits, particularly when awaiting test results. When my mom first noticed a discomfort while lying on her side and thought she felt some axillary fullness, my entire family knew deep down that this represented recurrent, metastatic disease. Even though we knew what was about to come, we prayed that her CT scans would just show scar tissue, an infection, or any other etiology for what my mom was feeling in her body. When my mother’s first physician explained there were “shadows” on her lungs and bones, we were overcome with a second wave of fear and anxiety, and yet we again prayed that the biopsy results would show anything but cancer. I even tried to read my mom’s CT scans and fought back the tears when I read “innumerable pulmonary nodules” and “multiple sclerotic lesions.” I was amazed that for every follow-up visit that my mom had, we could usually tell what the test results were going to show by how she was doing clinically. Yet the anxiety of seeing the results in print was overwhelming. Most of the time the anxiety we endured while awaiting a test result was far worse than the emotions we felt after receiving bad news.
Patients and their families often see only what they want to see; they look for any possible reason for a patient’s decline other than the prospect of disease progression. My mom had done quite well clinically for about 2.5 years, until about May 2010. I was on my way to the NCCN conference when my dad called 3 times in a row and didn’t leave a message. I knew that meant he was upset. My parents had found out that day that her follow-up CT scans showed 3 new lesions in her liver. She had otherwise been feeling well. Her doctors decided to switch chemotherapy. Although scared, I was not completely discouraged since she had responded to 1 chemotherapeutic regimen for those 2.5 years. However, in the following months, she began to lose weight and feel more fatigued. In retrospect, I believe that even as a physician who was trying to be the voice of reason, I looked for any explanation for her decline other than metastatic cancer (because that’s what a good internist should do). I had decided that maybe it was depression.
I was convinced that she had heard the news of a new metastatic lesion and assumed this was an immediate death sentence and that this fear caused her to lose significant amounts of weight and energy. She was also found to have elevated blood sugar on multiple occasions, and I thought that this uncontrolled diabetes was surely contributing to her decline.
One week before my mom died, my dad called me to ask about her worsening shortness of breath. They had planned a trip to Florida for the following day. I hadn’t seen her in a few weeks, and my first thought was that she had reaccumulated pleural fluid and that they should have taken care of this before the Friday afternoon of a holiday weekend. I asked, “Are you sure she looks okay to get on a plane?” and my dad (a physician himself) responded, “I think so. It doesn’t seem too bad, it’s just noticeable, and she really wants to go to Florida.” I was to meet them there 2 days later but the morning I was to depart, my dad called from an emergency room in Florida saying that my mom couldn’t wait and needed a thoracentesis right away. When I arrived in Florida I saw a completely different person from 3 weeks prior. My mom was now wheelchair-bound, had ascites and pitting edema, and had to sit completely upright to breathe, despite the thoracentesis. I couldn’t believe that my father had not seemed to notice my mother’s dramatic decline.