I was 22 when my mom took me aside and told me she had been diagnosed with lung cancer. I was devastated. I am an only child and my mother had been my anchor, mentor and guiding light my whole life, the thought of not having her around was difficult to comprehend.
I was largely left out of the planning for treatments and procedures. My parents felt that it would keep me from living my life as a young adult, and so I continued as I always had, not questioning this choice. My mother always made decisions without wavering on her choices, she knew what she wanted cancer was no different – she was the decider in our family and that role continued to belong to her. I moved to find a new job, always keeping in touch via phone, email and occasional visits, but never part of decision making for treatment plans.
My mother underwent surgeries, chemo and drug trials for the first part of her treatment. Losing her hair and lamenting the ugliness of the whole process, but continuing to travel and live her life as she had prior to the diagnosis as much as was possible. She responded favorably to a drug trial, remission came, and with it a sense of relief; maybe this was over and we could return to normal.
Three years later, while I was in grad school in Italy, she called to tell me that the cancer was back, it had metastasized, a scary word she told me meant it had spread to her brain. It was a short conversation and I think we both hung up in tears. We were 6,053 miles apart.
When I returned home, I made a point to stay with my parents for a month before going to work. Fortunately for me, I was just finishing with school and hadn’t yet started my career. We watched The Soprano’s DVDs, went to the farmer’s market, went on walks; she was doing well and seemed like herself. I moved to a large city, found an apartment and a job. When I was 27, my mom and I even went to Paris, she walked the whole time, looking healthy, never complaining. Her treatments continued, and then came the news from her oncologist that her cancer wasn’t responding this time around. In other words, the cancer was growing again. Radiation was the prescription and my mother took it without question. My interactions with her after Paris were mostly over the phone; we’d talk about everything except cancer, just like we’d always done. I’d ask my dad, the sole caregiver, how she was doing and he’d always say she was fine, maybe a little different than last week, but “fine, really.” Apparently, they both were.
Then came her first fall. It scared the hell out of my dad, he had custom slip proof rugs put into all the hallways, but it kept happening. I went home for Thanksgiving and found my mother to be a shell of herself. My father had vastly underrepresented the situation, she was frail, couldn’t get out of bed on her own, was periodically delirious, and needed to be lifted out of bed to get on and off the toilet – a task I had no idea how to do safely and ended up almost hurting both of us. The last day I was home my dad asked me about hospice. I didn’t know what to say since I really didn’t know what “hospice” actually entailed, but I knew he needed help, so I said yes. The nurses came within a few hours, confirmed what we knew in our guts to be true: my mother was in desperate need of outside care, and we signed on that afternoon.
My mother died in her bedroom five days later with me, my dad and her sister at her side. The hospice social worker had called me 2 days after I left the house, told me my mother was actively dying and that I should return to their house immediately. The hospice team was the reason I was even present for her death, to be holding her hand at the time of her last breath, we could not have gotten to her peaceful passing without them.
Mom took the standard, ‘aggressive’ track; we know this by the range of treatments she undertook, and especially from the fact that she pursued experimental treatments. Sometimes they actually work, as was the case here. Just note that, within the context of clinical research, this is uncommon to the point of unexpected. (Experimental protocols are typically designed to suss-out side effects more than treat the disease.) It is unclear whether mom and dad knew they were on this aggressive track, and whether they understood the fact that subsequent treatment protocols tend to get harder to tolerate the farther down the list you go.
It’s important to note the moment of metastasis. More than likely, at this point, as time passes, one is very likely only to feel lousier and have less and less energy. In other words, this change offers a big clue as to how a patient is fairing and what their needs are going to be, and therefore how to plan for the near term. Knowing that someone won’t be ‘bouncing back’ from metastatic lung cancer means caregivers might want to start looking for help around the house before things become overwhelming, whether from friends or professional aides.
Radiation, especially of the brain, will throw any body for a loop. Extreme fatigue and memory and personality changes are common, and often lag behind the actual doses of radiation by a few weeks. For whatever reason, I’ve rarely met any patient who felt prepared for the effects of radiation treatment.
Treatment decisions should be taken as a moment to pause and ask a lot of questions. You may need to especially push the doctor for a true sense of what to expect regarding effects on your quality of life. One reason to gain clarity here is because the daily realities might affect whether you choose to take the treatment in the first place, and it is always your right to say ‘no thanks’ to any treatment. Many times the patient assumes the best thing to do is go on to the next treatment simply because it was offered. Advances in medical technology mean that there’s almost always something else to try; whether or not it’s a good idea to do so is a personal and case-by-case proposition, so don’t assume that because something is offered, taking it is the right choice for you.
Whether dad is stoic or trying to protect his daughter’s feelings or is just too close to the picture to see mom’s declining health from one day to the next, it’s interesting to read that dad said all was “fine.” Knowing the scene that the daughter found when she got home and knowing that this dance with cancer was many years old, it is clear that they could have benefited from more help around the house. When people are not able to tend to what are called the ‘activities of daily living,’ this is a big clue that they need help -- more help than one person can provide for very long by themselves before also falling apart.
-BJ Miller, MD
ADL: ACTIVITIES OF DAILY LIVING
The things we normally do in daily living:
1. Functional mobility, the ability to walk and transfer in and out of a chair or bed.
2. Personal hygiene, oral care and grooming, including skin and hair care
3. Showering and/or bathing
4. Toileting, which includes getting on/off toilet and cleaning oneself
5. Dressing, which includes selecting appropriate attire and putting it on
The spreading from one part of the body to another. When cancer cells metastasize and form secondary tumors, the cells in the metastatic tumor are like those in the original (primary) tumor.
There are some notable exceptions (e.g. testicular cancer, blood cancers, et al), but metastatic disease generally means the cancer is, from that point on, incurable
Experimental treatments are typically a choice after standard treatments have been exhausted; what’s astonishing in the clinical world is how often patients don’t know that experimental treatments generally connote:
a) end-of-the line treatment (not always, but usually)
b) that these treatments are not expected to be effective; these research protocols are meant first and foremost to understand side effects and the dangers of the medication.