In January of 2003, my mom was diagnosed with bone cancer. We quickly learned that cancer in the bones is normally a secondary cancer representing a metastasis from a primary source. In her case, she had two primary sources: a tumor in the lung and one on the base of her tongue. It was unusual to have two primary sources and the local tumor board discussed her case.
A Second Opinion
We went to the Cleveland Clinic with records in tow to get a second opinion. The doctors who reviewed her case were very compassionate. They let us know that Mom was terminal, and there were no curative treatments because the cancer was too progressed. They offered “palliative care” as her best path forward. None of us knew what the word “palliative” meant but it sounded official. We asked how much time she had left and the docs would not answer saying that everyone’s journey is different, and it’s best not to stamp the time left with a guess. I wasn’t sure I agreed with them but we made the journey back home to Dayton, OH to figure out how to proceed.
What is palliative care?
The first thing we did was look up the word “palliative” and researched her prognosis. Palliative is defined as “relieving pain without dealing with the cause of the condition.” The use of the term “palliative care” has a broader application and can be used in conjunction with curative treatments (see Resources), but in my Mom’s case, it was meant to provide comfort care and help manage the pain associated with the cancer that riddled her body. We found her prognosis at www.cancer.gov where it was predicted that someone with stage four metastatic cancer would live for 6-8 months. Our Mom died on August 15, 2003 which was 8 months after diagnosis. For my family, it was helpful having a prognosis and a timeframe to help determine the management of the disease progression.
My Mom’s worst fear?
Our Mom was a nurse during the Korean War and she understood what was happening medically in her body. Her worst fear was pain. She imagined the pain of her disease and it was overwhelming. Her number one request was to manage the pain so she could spend time with her grandchildren. Palliative care gave us hope that her pain could be managed with the realization that the treatments were not curative – she would die from the cancer – but the journey could be less fraught with pain and anxiety if the intended treatments were successful.
How did the palliative treatments work?
The first treatment was chemotherapy to control the growth of tumors. Again, this was not a curative chemotherapy but was intended to generally slow down the growth of the cancer systemically in her body. It was rough on her and she became more fragile and we had to shave her head. Turns out, my Mom had an adorable head and it suited her.
Then, there were radiation treatments targeting both the lung tumor and the tumor at base of the tongue. The purpose of radiating the tongue area was to slow the growth of that tumor so she would be able to eat normally throughout the progression of the disease. Otherwise, it was thought that the tumor would grow much faster than the other cancer, blocking her esophagus and creating massive discomfort and pain. The strategy worked except the radiation treatments created acute pain in her throat for two weeks and she couldn’t swallow. She was miserable and we brought her to a pain specialist who said it would be terrible for two weeks and then it would be better. She really wanted a morphine drip/pump for the pain but the doctor said it was not advisable to install a pump because it was short term pain. She had stronger doses of pain relief in her patches and true to his word, the pain ended after two weeks.
With metastatic lung cancer, there are two typical pathways for the cancer to migrate: either to the liver or the brain. For our Mom, it went to the brain. There were more radiation treatments targeting tumors in her brain in the hope that she would retain more cognitive capacity during the disease process. Looking back, it’s hard to say what kind of impact it had.
When did hospice come in?
Thankfully, we engaged hospice at the end of March which was comparatively early to the average patient (we had hospice for five months). During the entire 8 months of her illness, she was never admitted to the hospital. We had one egregiously bad day in the ER because her lung had filled with fluid. As that crises eased, the Pulmonologist told me that it’s time to engage hospice. Even though I knew she was dying, I was shocked to hear his words and the thought of hospice “sealed the deal.” When hospice entered, it was an essential milestone in our journey. It marked the end of any lingering, unseen denial.
My sister and I told Mom about the hospice conversation with the pulmonologist. Our Dad felt that we shouldn’t tell her because it was defeatist and she would not have the will to live. This can be a typical reaction to hospice even in today’s environment where there is greater awareness of how hospice helps. Mom had a strong emotional reaction and cried. My sister and I reassured her by saying that hospice will help us manage the pain. Like me, it was shocking for my Mom to hear that it was time for hospice, but it also created truth about the reality of the situation and the inevitability of her death. The conversation was hard but the outcome was positive because Mom rallied to put together her last wishes which made it much easier for everyone once she passed. We could honor her in the exact way she wanted.
Hospice helped every step of the way.
The first thing that came with hospice was a hospital bed which my Mom needed because she could not easily get in and out of her bed even with our assistance. The hospice nurses helped control her pain, the aides came and helped her shower, a volunteer massage therapist helped her body feel better. Most importantly, hospice was available to ask questions and set expectations as the day-to-day realities unfolded. Hospice uses a team approach and a patient can use all or part of what they offer. For us, hospice was a true partner in our caregiving for Mom. We employed them early which we highly recommend. Caregiving is hard work and having hospice as part of the team helps keep everyone strong and resourced.
In retrospect, would we do anything differently?
Metastatic stage four cancer is terrible. I look back and wonder if all the palliative treatments were prudent. How would the physical nature of the cancer manifested without the interventions? Mom was sick, uncomfortable, miserable at times and slept a lot. Did the treatments create more misery than the cancer would have? Was her quality of life improved? It’s common to look back and wonder if things could have been different. We didn’t have a Palliative Care doctor because I don’t think there was one in Dayton at the time. Given that she was never admitted to the hospital, could eat until nearly the end and her pain was controlled, demonstrates success. And it’s still a terrible journey.
I’ve always felt that my Mom’s cancer journey was managed well but sometimes I feel her in my heart and wonder what it was like for her. Comfort is the goal of palliative care and sometimes the side effects of the treatments can make the person worse off. It’s not possible to relive history, but one thing I know for sure is that we all did the best we could which was pretty darn good.