Diagnosis: Afterparty

I was literally just starting to find my new normal in all of this.

I had finally found routine again. I created spreadsheets mapping out each chemo treatment, tracking any side effect, and a litany of daily audits including protein intake, what workout I did, how I’m feeling mentally & physically; all color coded in two-week segments for all 12 rounds of chemotherapy. I really blurred the line between “fighting cancer” and “onboarding for a mid-level corporate role.” I found comfort in my new juicing routine and eating vegan (with one exception of eggs in avgolemono soup- I will not allow cancer to take away avgolemono soup!). I bought a gentler shampoo & conditioner to combat any future possible hair thinning or loss. I was staying consistent in my running and strength training. Spontaneous cries dramatically reduced from at least once a day, to maybe one time last week. (And only because someone has sent me something nice or done something nice for me- they’re good cries, I promise!)

I was so on top of everything that I didn’t even feel the need to blog. Everything was so normal, there were no new thoughts, and I had nothing consequential to say. I even hesitated to say I was finding my new normal, because nothing feels wildly different yet. Which is historically when life likes to schedule a plot twist.

What my new regimented routine hadn’t accounted for was that this path, 12 rounds of chemotherapy, was always just the backup plan. Plan A was to get into an immunotherapy clinical trial at a top 10 national cancer institution, and ideally some chemotherapy on the side. So, when my oncologist’s office handed me some screening paperwork for the other hospital, I was ecstatic. However, when my oncologist’s office called me the next day to say that the new hospital has all my information, I wasn’t expecting to feel so sad when they told me, “In order to not be disqualified from any trials, we’re cancelling your upcoming chemotherapy appointments.” Which, from a scientific perspective, I get. How can you measure how well your cancer trial is working if your test patient has had a bunch of chemo elsewhere?

While it was exciting to know the plans were in motion to transfer to this new institution, I felt a bit adrift at sea. No appointments on the calendar. No treatments scheduled. I felt like I was in the same boat as the weekend I got the diagnosis; unsure where this was all going. Part of me wondered if there’s ever been a cancer patient who’s been disappointed to actually hear they wouldn’t be getting chemo as scheduled. Somewhere out there is an oncologist who trained their whole career to hear literally anything else. Granted, had none of this happened, this weekend into next week would’ve still physically been the same- the next chemotherapy treatment wasn’t going to be until March 4. But still, having something on the calendar really makes me feel like there’s some kind of progress. Having nothing on the calendar and all my spreadsheets suddenly no longer (currently) relevant, I felt like I was back at square one. I skipped yesterday’s workout because I was so bummed and let it get the best of me. Luckily, one of the books I had planned on reading this year is titled “The Perfectionist’s Guide to Losing Control,” so perhaps that will help with all of this in more ways than I had anticipated when I bought it last year.

However, that despondent feeling disappeared when the new hospital called me today to set up a consultation with a new oncologist. There are still some test results that they’re waiting for, to know where to place me in what trial, but it sounds like I’m officially swapping over to the new hospital, to get the ball rolling there. Once the test results come back, I’ll already be in their system, with their oncology department. And as a white middle-aged dad likes to say when it’s time to leave a restaurant, we’ll be ready to rock and roll.

So officially moving up to a nationally recognized cancer center, with the extremely high chances of getting into an immunotherapy trial? Huge win for the week. Another win this week is that my baseline PET scan results came back showing that the cancer is solely in the colon and liver. No other organs have been affected and from what I can understand from it, my lymph nodes are also safe for now- the best possible result!

Looking towards the future, there will never truly be a “normal.” I’ll be able to get really close to it, but the new normal is really going to be that normal is ever-changing. Learning to pivot, adjust, and become comfortable with the unknown. And to simply keep adding the wins in the W column as they come in.