Evolving

Part of the aging process, unfortunately, often includes the death of our parents. This is a real challenge for most of us, and doing so with grace can seem impossible. I’m sure that my way of dealing with my parents’ deaths could have been much more graceful. And I am also certain that I am still struggling with both of them. This post is about my mother. I miss her every day, despite her cantankerous nature as she got older.

Not long after my father’s diagnosis, I received an email from my mother. I didn’t get many emails from her, as she was just learning to use her computer. But the title of the email was “Bad News”. I wondered why she would ever want to communicate bad news via an email, but quickly opened her letter.

“I am afraid I have bad news”, she shared. “My mammogram and biopsy showed that I have breast cancer. I don’t know the extent of it, but I am going to get my treatment here. Once the surgery is scheduled, I will let you know.”

I was flooded with a mix of emotion. First, I was dismayed at why she would choose to write such an email rather than speak with me directly. Next, I was frightened at the prospect of my mother struggling through whatever this diagnosis would require, especially given my father’s recent diagnosis of Alzheimer’s disease. But perhaps most prominent was a lack of confidence in whatever health care professional had given her this diagnosis. My mother and father lived in a very small rural town in the South, and my knowledge of their past health care competency was not impressive.

That evening, I called my parents. I asked my mother to tell me how, when, and by whom she had been diagnosed with breast cancer. I asked her to be more specific – what type of tumor had they found, and what were her treatment options? I should have remembered that in their generation, and perhaps especially in southern small towns, *the doctor* was never questioned, nor was s/he forthcoming with information. When a diagnosis and treatment plan were given, they were not to be questioned. If they were, then that patient would be labeled as “difficult”, and future health care could very well be compromised. This had happened to several other family members who lived close by, and who were perhaps more assertive about their own care.

Neither of my parents were able to provide any more specific information. Mom did say that the biopsy was not “clear” and so they sent it on to the university hospital nearby. They would find out the results in the next week or two. This was not enough information to satisfy me. I asked for the name of the clinician she had seen, and his phone number. My efforts to obtain more details from her doctor were not successful, and rather than continue to press him, I decided to do my best to convince Mom to let me arrange for her to be seen at the tertiary hospital where I lived for a second opinion. After several discussions, she agreed.

I contacted the cancer center, and spoke with a social worker. I had worked as a hospital oncology social worker before, and “knew the language” to use in order to make progress arranging her treatment. I asked the social worker which oncology physician she would recommend, explaining that I would be bringing her to her appointments, but it would be important for the physician to engage her directly. While I could be her advocate, I wanted to be certain that she felt as much control over her treatment plans as possible.

I arranged for the mammogram, biopsy, and all medical records to be transferred to the cancer center. I told them that it was urgent, since she would be evaluated in one week. They agreed to send the information as long as I would cover the cost. Although irritated at the time over this seemingly minor cost, given the expense of her care thus far, I let it go. It would be the first of many irritations I would experience trying to help arrange for her care.

They arrived to our home the day before the scheduled appointment, and both were trying to act as if nothing significant was happening. They smiled, hugging us and our children, and didn’t even ask about the appointment. Just before bed, I explained that we would be spending several hours at the cancer center, and at the end of the day, we could expect to at least have some answers.

The next day was grueling for all of us, but the staff were extremely kind and helpful. I felt immediately that we had made the right decision by having someone else look at Mom’s test results. At the end of the day, and after many additional exams and tests, the lead physician invited us into her office. She was soft spoken, and even had a southern accent, making my parents feel even more comfortable. Quietly, she explained that she had some surprising news for us. She said that the diagnosis of breast cancer was not correct. There was no evidence of breast cancer. However, there was a different diagnosis that she would like to discuss with us. She turned to my mother and said, “Our strong opinion is that you have a type of non-Hodgkin lymphoma – a blood cancer. I’m sorry to have to tell you, but it seems that your illness is probably advanced.” Mom asked her if she meant that the cancer had “spread”, and she indicated that it had. I asked if she was able to stage the disease. She (very appropriately) turned to my mother and asked if she would like to have that information? She said that she would, and the doctor said, “Your cancer is a stage 4. This means it is more of a challenge to treat successfully. But we do have some options I would like to discuss with you.”

Mom was to begin chemotherapy the following week. It was an aggressive therapy known as CHOP, each letter representing the first letter of the medications she would receive. Her first question was whether she would lose her hair, and the answer was that yes, she would. Over the course of the next 6 months, mom endured the chemotherapy as well as she could. She lost her hair after the first couple of weeks, and my father bought her the best, most realistic wig they could find. She wore the wig for the first few months, but it was summer, and hot, and the wig became just one more discomfort that she was not willing to tolerate. It was shocking to see her without hair, and it was hard to see her in and out of the hospital with low white blood counts.

However, after the six months of chemotherapy, she was considered “in remission”, and was able to return home with my father. We all understood that the likelihood of the cancer returning was high, but we were grateful for the additional time we could have together. I didn’t want to think about her illness, and instead focused on visiting as much as I could, and perhaps even more importantly, arranging for my children to spend as much time with their grandparents as possible.