The Treatment Plan –
As I prepared to receive my treatment plan, my health crisis was approaching the two-month milestone. What had once seemed like an endless march of major events – scans, surgery, recovery, pathology – followed by long waiting periods to figure out “what’s next,” was finally coming to an end.
If my cancer diagnosis was the Macy’s Thanksgiving Day parade, I was approaching the moment when Santa appears, signaling the transition to the holiday season. In my health parade, I was transitioning from diagnosis to treatment.
Once I got out of my own way and opened up to the idea that my family could help me prepare for my treatment plan review with my oncologist, I embraced it wholeheartedly. I named my sister Sharon as my Vice President of Research.
This was one of the best decisions I have ever made.
With Sharon taking charge of the process, I was able to establish some healthy boundaries with Google. When facing cancer treatment, immediate access to information has its pros and cons. For now, we agreed that Sharon would handle the research in preparation for the meeting. There would be a time when I would find online cancer resources and message boards helpful, but this wasn’t it. Too soon.
Sharon also became the intermediary between me and my family to aggregate everyone’s input and questions about my diagnosis. Although my Mom had reminded me that Sharon is “excellent in these types of situations,” I was blown away by how genuinely excellent she was.
Sharon became my buffer between all the scary stuff online and my family’s fear and anxiety regarding my condition. I had been through a lot, much of it physically painful. However, there was no physical pain greater than the emotional pain I felt when I heard the worry and concern in the voices of the people who love me. Sharon’s willingness to become the advocate and caretaker for our family at this critical moment was a profound thing to witness.
When Sharon arrived in Seattle, she presented me with a document that neatly organized all the questions we wanted my oncologist to answer. Many of the questions concerned chemotherapy, but there were other topics such as genetic factors, research studies on Sertoli-Leydig and whether I was at risk for other types of cancer.
As we traveled to my oncologist’s office, I noticed that my anticipatory anxiety level was much less in comparison to previous visits. This was probably because I had received the bad news in advance – I already knew I had cancer and that I was headed for chemotherapy. There would be no burying the lead in this meeting.
As we walked back to the exam room, I introduced Sharon to my oncologist’s nurse. Once again, I marveled at her sunny disposition as she asked Sharon where she was from, the ages of her daughters and whether this was her first visit to Seattle.
The room we entered was less formal than the consultation room where I had received my diagnosis. The first thing I noticed was that there was no desk. The chairs were set up in a loose circle, which created an unexpectedly intimate setting.
When my oncologist entered the room, he greeted my sister and me quickly, then launched into the details of my treatment plan, which I have summarized as follows:
The Tumor Board agreed with the diagnosis of Sertoli-Leydig and the findings of the pathology report. Due to the rare nature of the cancer, the Board concurred with my oncologist’s recommendation that I should undergo chemotherapy.
Every three weeks, I will receive an infusion of two chemotherapy drugs over five to six hours.
In between treatments, I will follow a schedule of blood work, which will help monitor my body’s response to the drugs.
My “chemo day” will take place on a Wednesday, which means my heaviest recovery days will be Saturday and Sunday as the side effects will take 48 hours to manifest.
I will need to take a dose of steroids the night before treatment, which will help my body tolerate the chemo. I will also receive a prescription for anti-nausea and pain medication, which I will take for 3-4 days following my infusion.
I can expect to experience side effects such as body aches, neuropathy and fatigue, which will increase with each treatment. The side effects will be most severe during days four and five following treatment but will subside as I progress through each three-week cycle.
I will begin to lose my hair 15-19 days following my first treatment.
If I manage my energy and get lots of rest, I will not need to take a leave of absence from my job.
After delivering the outline of my treatment plan uninterrupted, my oncologist took a pause and asked, What questions can I answer for you?
Sharon and I both had a copy of our prepared questions in our hands. Before I looked down to see what remained unanswered, I took a long exhale. I may have been holding my breath while listening to the details of my treatment plan.
My oncologist’s demeanor was the opposite of his nurse. His review of my treatment plan was meticulous, evidence-based and very succinct. However, in no way would I consider the delivery cold.
I felt a warmth of a different kind.
The absence of a desk created a minimal space for the chairs, which my oncologist, Sharon and I occupied. During the conversation, he leaned in and made continuous eye contact with both me and my sister. He did not look at his watch once. I have no idea how much time was set aside for the appointment, but I had a strong sense that it would run as long as I needed.
These observations may seem like little things; however, when going through a cancer diagnosis, there are no “little things.” Everything is a big thing.
My oncologist never attempted to literally or figuratively hold my hand, which was ok. Hand holding was Sharon’s job. My oncologist gave me comfort through his competence.
He sought counsel from his peers before making a final decision on my treatment.
He talked to me, not at me.
He was patient as Sharon and I went through our list of questions.
He listened and gave thoughtful answers.
Many times, it’s through hindsight that we realize the impact and importance of things, but I did not need time or perspective to know that I was receiving excellent care.
After almost an hour of conversation, Sharon and I looked at one another, searching each other’s expressions to see if there was anything more to ask. We had answers for all the questions we prepared.
But I had one more question that was not on the list. It was the only question to which I wanted an answer, but wasn’t sure I had the courage to ask.
I decided to jump in the pool.
Was there something I could have done to prevent this?
Once again, my oncologist leaned in and looked me in the eye.
Christine, this is as random as random gets. You will get through this.
It was a short answer, but these were the exact words I needed to hear.
And for the first time in nearly two months, I had a definitive answer to “what’s next?”
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