I’ve thought about posting almost every day for the last 10 months. A lot happened in the last year or so, and in my mind I wrote about the experiences (good and bad). For various reasons I convinced myself it was better to leave those thoughts and experiences unshared. Sometimes it was because people I love were going through a tragedy or great adversity, and sharing about my stuff seemed unimportant. Other times I didn't share/post because I overanalyzed every possible topic and worried about what people might think; that led to procrastination. I've also been constantly reflecting on why I am doing this and whether I should continue.
What I determined is I regret letting this outlet lay dormant for so long. I regret the time I’ve spent doubting that being open about this experience was a good idea. I am frustrated with myself when at times I think this undertaking is cliche. When I am honest with myself, I want to do this, and for the right reasons. It's just harder than I thought it would be. When I kicked off this blog, I was riding a wave of energy and motivation. I had just come to terms with my prognosis. As each follow-up appointment since then resulted in clear MRIs, the motivation dissipated. That's unacceptable to me. I shouldn't pretend like my situation is any less serious than it was 3 years ago; in fact, it's more perilous now than it was then according to science and median survival rates and such. I am recommitting to this effort of sharing my experience. Hopefully from this point on I stop talking about how I want to do this and just share about what's actually going on.
So the main goal of this post is simply to post. Restart this effort to help myself and maybe others by being open about living with brain cancer.
Health Update
My MRIs in February 2022 were clear, and my next surveillance appointment is tomorrow, June 30th. If the MRIs are clear (i.e., no signs of tumor recurrence), I will move to a bi-annual follow-up cadence. The prospect of having scans every 6 months instead of every 3 or 4 months is a big deal. It would be a great development. I shared before about how stressful it is and the toll it takes on our family in the weeks/days leading up to these appointments.
The other notable development is that as of January 2022 both my original neurosurgeon and neuro-oncologist (the primary members of my medical team) moved to other medical institutions. There was a comfort in having my original team continue to manage my care. Their involvement provided reassurance that I was in good hands. Because of this change, I am considering moving my follow-up appointments to Baton Rouge, but I am hesitant as that could cause complications and added stress if there is tumor recurrence. If that were to happen, I might need to be quickly transferred back to MD Anderson for surgery, treatment, etc. Whether to keep trekking over to Houston or move my follow-ups closer to home is a more difficult decision than I thought it would be. I will probably decide after the appointment tomorrow. Truth be told I kinda like the vibe in certain parts of Houston.
What’s Next
I’ve been dealt a very rare hand, and I want to do something useful with it. I just have to commit to this effort (and other efforts in the same vein) and not be discouraged if it takes a while to find a groove.
Nick
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