Have You Really Been Seen Today?
We welcome guest blogger, Charlotte Brooks. Charlotte lives in Texas, and as a child enjoyed an insatiable love of books and reading. As an adult, she began writing to help navigate the shock and grief at the unexpected loss of a friend. She has an MEd from Texas A&M University in health education.
This story is a sequel to her story published at Pulse-voices from the heart of medicine, last year.
I arrived for my appointment at the Leukemia Center with my new oncologist, Dr. Goodman. I have a rare blood cancer, a myeloproliferative neoplasm (MPN). After completing my blood tests, I found my favorite seat in the waiting room, where the generous windows allowed the sun’s warmth to enter and caress my tired body. The ubiquitous tan walls were interrupted by pallid abstract prints that stared back at me. I gently closed my eyes to hide their glassy glare.
I'm so exhausted; I have to address this pain and fatigue. It’s breaking me—erasing my life. I see myself disappearing, like I’m walking into a horizon, getting smaller and smaller. Cancer is my shadow, escorting me everywhere—a cunning thief.
My eyes opened, moist with tears, and I scanned the faces of my peers. I saw cancer, with skin dimmed by chemotherapy, hair sparsely covering the places it should be, and gaunt bodies strained by the weight of it all. I wondered: Which blood cell is cancer holding hostage? The waiting room was crowded with courage; I wish it didn’t have to be so large.
I reflected on how I got here, what finally compelled me to find a specialist. At my last visit with my previous doctor, I shared that I was experiencing chronic pain and fatigue. When I asked about starting interferon therapy, without looking away from her computer screen, she emphatically said,
“I don't use interferon because it causes flu-like symptoms, and the pain is not related to your MPN. You will need to follow up with your primary care physician on that.”
I felt invisible and disheartened, but I convinced my surging feelings to stay put. If she could have looked at me, really seen me, she might have noticed:
I wore my symptoms on my tired face, straining to hold my emotions in check.
Tears stand ready to rush down my face, exposing my distress.
The bone pain and fatigue have taken my full life and left an existence.
My mind never lets me rest; it’s too busy planting anxious thoughts about how I will work and manage my life with this overwhelming pain and fatigue.
The big smile I used to wear does not come often now; I miss it.
Instead, her callous response left a suffocating silence in the room. I knew that I had to find another doctor.
Then, I heard my name called, “Ms. Brooks?” I stood to leave my warm chair and walked towards my nurse, Leila, her beautiful smiling face framed by a curtain of sleek black hair. She greeted me with her gentle voice, “Hello there, let’s get your vitals.” My vitals were recorded, and I followed her to the exam room, and we both took our seats. She logged on to the computer, and she asked me, “How are you doing today?” As my thin voice creaked with emotion, I replied, “I’m having a lot of bone pain and fatigue; I don’t feel well.” She responded, “I’m so sorry; would you like me to get you a wheelchair?” I replied, “No, thank you.”
I wondered, did I look as bad as I felt?
She proceeded with the usual questions about the degree of pain, medications, changes to my health, etc. After inputting my responses, she handed me a copy of my blood test results and said, “Ty will be here in a few minutes to do your exam.” As she exited, I perused my test results and saw my elevated blood counts; no wonder I’m so exhausted.
Soon, I heard the physician assistant Ty approaching as he knocked on the door and sauntered in, tall and handsome, with sandy-colored hair and soft blue eyes. He said, “Hello, Ms. Brooks, good to see you.” With his kind demeanor, he asks, “How are you doing?” I shared, “I'm having a lot of pain and fatigue.” He replied, “Well, let’s go ahead and do your exam.” I climbed on the exam table, where he assessed my heart, lungs, and the places blood cancer likes to hide: the liver, lymph nodes, and spleen. He concluded there were no physical changes, but in his caring way, he said, “Your blood counts and symptoms are increasing; it might be time to start medication.”
I agreed that the watch-and-wait honeymoon was over; it was time for treatment. I replied, “Ok.” He said, "Dr. Goodman will be here in a few minutes to discuss treatment.”
In a few minutes, the animated knock at the door announced Dr. Goodman was here. He stepped in, with his cheery personality on full display; his bronze-hued face held a beaming smile. He enthusiastically greeted me with a “Hello, Ms. Brooks!” Dr. Goodman and I have quickly formed a warm rapport, talking about cancer, of course, but then just life. He is fully present and engaged. We discussed the lab test results and my increasing symptoms, and he proceeded to recommend interferon therapy. This is the same drug I inquired about with my previous doctor; I knew it was an immunotherapy that boosted the immune system.
Dr. Goodman explained, “Interferon pulls back the curtain and directs the immune system to go get 'em.”
He’s enthusiastic about its ability to bring my blood counts into the normal range and alleviate my symptoms. Some patients treated with interferon can achieve remission; I’m grateful for the opportunity to receive this potentially disease-modifying drug. There is only one additional step, Dr. Goodman explained:
“Because of your history of depression and the potential mental health side effects of interferon, a psychiatrist will need to clear you to start the treatment.” I replied, “I understand; this is so unexpected, thank you.” I left the appointment so relieved to be seen and heard and awash with hope that this treatment will bring me back to life.
After seeing the psychiatrist, as a precaution, I was prescribed bupropion, the antidepressant I previously took for depression. I must start this drug before I can begin the interferon therapy, and some unexpected benefits wondrously appeared! The chronic bone pain and fatigue vanished; I’m stunned, and no one on my treatment team expected this benefit either.
I was intrigued to understand how bupropion alleviates pain and fatigue, and I learned that it has anti-inflammatory and analgesic properties. After starting the interferon, I achieved hematological remission, with normal blood counts. The unforeseen synergy of these two drugs was life-changing.
Most importantly, I was really seen that day by each clinician involved in my care; they saw my distress and diminished vitality. They understood that being patient-centered is more than an approach; it requires a purposeful desire to see the patient holistically. While cancer pain and fatigue might not be quantifiable like blood counts, these symptoms are not inconsequential. The obstacles in treating cancer-related pain and fatigue in rare diseases should be urgently addressed. Should a future MPN treatment algorithm include the treatment of pain and fatigue? Absolutely.
My perseverance and decision to see an MPN specialist changed the quality of my life and the course of my cancer. When you have chronic cancer, the doctor-patient relationship will be a long one; be unapologetically persistent in seeking the best-available treatment. Never give up.
Now, I cherish my life with an enormous smile.
