UNDERSTANDING MY PROGNOSIS
When my local neurosurgeon confirmed I had a brain tumor, he wrote down three possible diagnoses based on its location. He quickly reviewed the possibilities, said the team at MD Anderson would go into more detail, and warned me to be careful Googling the first one, "low grade glioma." That was a fair warning. I quickly decided I wanted anything but a glioma. Ultimately, however, that’s what I had.
After conversations with my medical team, this is what I determined to be an accurate (although subject to caveats) medical summary with respect to low grade gliomas:
“Low grade glioma is a uniformly fatal disease of young adults (mean age 41 years) with survival averaging approximately 7 years. Although low grade glioma patients have better survival than patients with high grade (WHO grade III/IV) glioma, all low grade gliomas eventually progress to high grade glioma and death.”
The quote is from a research study published in the Journal of Neurosurgery, which is the official journal of the American Association of Neurological Surgeons. The phrase "uniformly fatal" is what sticks out to me the most. I’ve said it over and over again in my head.
Look, I still feel like my prognosis kinda sucks, but I don’t want to paint an overly gloomy picture. Some of the more positive aspects of my prognosis are:
every patient responds differently to a brain cancer diagnosis
a lot the patient data used in research studies is stale and doesn't necessarily reflect the outlook of someone diagnosed today
I am younger and healthier than many people diagnosed with a low grade glioma, and
doctors are now able to identify genetic markers in tumor tissue to help determine the aggressiveness of the cancer (I had favorable results from the genetic tests).
HOW MY PROGNOSIS RESONATES After adopting this summary, I started looking into my future 5 years at a time. 5 years is the time period used to gauge life expectancy when discussing low grade gliomas; e.g. I might have a 75% chance of living more than 5 years if x, y, and z are true. I started thinking about what I would get to experience within each 5 year period. In 10 years Abigail would have graduated high school and possibly college, Henry would be a teenager, etc. A lot of heavy, heavy thoughts came to mind. Initially, I dealt with these thoughts at a somewhat beneficial time; I was at home, not working, and recovering from surgery. No one expected me to be there for them consistently during that recovery period, so if I got bent out of shape mentally for a couple of days it only caused an incremental level of disruption to our lives.
90 DAYS AT A TIME
Fast forward from what it was like to initially accept my prognosis, through the 12 months that followed to now. My ongoing care plan is to have MRIs every three months. I have had 4 follow up appointments so far, all with great outcomes / no evidence of tumor recurrence. I am thankful for that. What I am going to share about is the experience leading up to those appointments and the things I have done or think I should do to better manage the impact these 90 day checkpoints have on me and my family.
First, it’s notable that immediately after an appointment resulting in a clear scan we are all very happy and energized. To a greater degree than any other time, I push my cancer diagnosis to the back of my mind knowing that I won’t have to deal with the possibility of needing another brain surgery, potentially chemo, radiation and so forth for at least 3 months. Then, there is an increasing focus on the next appointment, the possible outcomes, and the heavy thoughts that ruled my mind when I first came to terms with my prognosis. As we get closer to the next appointment and those thoughts slowly return to the forefront of my thinking, we deal with challenges like these:
Trouble sleeping. When it’s bedtime and there’s not much to occupy my mind, that’s when cancer concerns can dominate. I stay up later and later the closer we get to the next appointment. My worries lead to actions like re-reading my medical records and the same medical studies I’ve read before (as if the findings will change) which can have a negative impact on my mental state. Not sleeping affects Megan and the kids, too. One way or another they know I am restless, and that makes it hard for them to feel secure / be at ease at bedtime.
Not being present in the moment. I get lost in thinking about what might happen and miss out on being there for my family, now. Recently, Abigail was telling me about a situation with friends, and the feeling of concern I had for her immediately triggered a greater, more abstract concern I have about her future. While she was confiding in me I was trying to remember the year I bought my initial term life insurance policy, how old I would be when it expired, and how likely it might be that I pass away before the term is over. I wasn’t help in the moment because I hadn’t listened to her, instead I was mentally years down the road focused on something I can’t control and may not even matter.
Stress from trying to balance professional obligations. My job is demanding, and I put a lot of pressure on myself all the time (don’t get me wrong, I love the work I do and am thankful for the career I have had so far). The challenges are staying focused, motivated, and empathetic close to an appointment. A lot of the stress that builds leading up to an appointment stems from concerns for me and my family. Work falls outside the direct scope of those concerns. I can become less engaged at times and less willing to dig in to solve certain problems I don’t deem significant enough to draw my focus away from the impending scan.
SOME THINGS I HAVE FOUND TO BE HELPFUL IN COMBATING THESE CHALLENGES:
Exercise. Exercise is the primary tool I use to quiet my mind, get centered, and reset my mental state. I run as much as I can physically manage, sometimes ride a stationary bike, lift weights, and work my core. There are limitations and certain nuances that I am learning to account for (e.g. don’t run after 10 PM if I want to go to sleep before 2 AM).
Spending free time with family and friends. Spending time with family and friends helps by lightening the mood and shifting my focus for at least the time we are together. It seems simple, but I am usually surprised by how long we go without picking up the phone to arrange a meal with the people we care about. When we do, we never regret it, and it always makes me feel better.
Having fun with my wife. When Megan and I get 1:1 time, it’s always fun. Our personalities mesh that way. I can talk to her about anything, so even in times where things aren’t so fun, sharing my thoughts and concerns with her helps as I know she will listen and provide honest (almost always optimistic) feedback.
A FEW THINGS I HAVE NOT TRIED IN EARNEST BUT WANT TO:
Therapy. Several people going through their own cancer experience recommended working with a therapist. I can totally see this being helpful and plan to give it a try.
Meditation. I have tried Meditation a handful of times via some of the more popular apps. To my surprise, it was highly effective. I felt more relaxed and positive. I just have not worked to make meditation a part of my regular routine, yet.
Plugging into the brain cancer community. There are many people experiencing similar and more difficult challenges due to a brain cancer diagnosis. I found patient groups and associations actively working to support each other and loved ones. Becoming more active with these folks and entities is a goal I set for myself.
Thanks for reading.
Nick
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