My last post was about using visualization to promote tumor clearance, i.e. playing offense. This post is about playing defense. I find myself overwhelmed with negative thoughts that intrude at all hours of the day. A casual glance at the cancer survivor literature shows me that I’m not alone on this, and that many people recognize morbid thoughts to be the essential non-medical challenge of cancer. To give one awful example, shortly after we moved from Barnes to the Rehab hospital, I was watching baseball with my dad, when the awful thought intruded that had I died, my funeral would have been that day. As evidence of how cognitively impaired I was at the time, I spoke those awful words out loud and burdened my dad with that terrible, terrible thought. I might have even said the same thing to Jing later that day… memory from those days is still a bit fuzzy. Under normal circumstances, I would never burden other people with such awful images (like I’m doing now to the entire world wide web – yay hypocrisy), especially my dad. One of my happier thoughts through this whole ordeal has been that I got to be the one who’s sick instead of my kids, so I feel like I can maybe understand how awful this whole thing has been for my parents. Why would I put the image of my funeral in his head? Why would I tolerate it in my own head?
It’s certainly not doing anyone any good, and it’s not helping me fight this tumor. But cleansing your mind of bad thoughts is a difficult business.
Don’t imagine an elephant. You see what I mean?
I’ve started to keep a running tally of what I consider to be bad or at least unhelpful thoughts, and in a half day (4pm to 10pm) yesterday, I ended up with 15 hits. That’s about two and a half bad thoughts per waking hour. You gotta measure it before you can manage it. Hat tip to my friend Karyn who, like me, believes that metrics are the way to greater wisdom.
Hypothesis: since the surgery, I’ve been periodically hypoglycemic. As in, if I haven’t eaten recently, my hands get a tremor, and I get weak. My endocrinologist wife doesn’t find this too concerning since it’s symmetric and goes away quickly after feeding, so I’m not going to worry, although I will say that any symptoms on the neurological spectrum are troublesome when they first appear. Since I’ve recognized this issue, and taken steps to eat 5-6 evenly spaced meals per day, it’s pretty much resolved. Point being: perhaps bad thoughts correlate with low blood sugar? I’m keeping tabs. I’ll let you know the outcome. By the way, thanks to the many friends and neighbors who have helped feed us since the beginning of this ordeal.
If bad thoughts can’t be squashed before they pop up or chased away with an extra meal, perhaps I can drive them away with good thoughts? With that in mind, I’ve come up with a list of future happy moments to visualize, vividly, and intensely, where I am very much an active participant in the scene. Like yesterday’s post, these need to be happy, personal, vivid images.
3. Carolyn’s first big girl bed. Hard to believe she’s moving to a toddler bed in less than a year. She’s still so tiny.
4. Quinn’s next daddy/daughter dance. Quinn’s preschool does a yearly daddy/daughter dance, involving ~200 screaming children in a tight gymnasium, exactly the sort of scene that’s given me seizures in the past. But since my oligoastrocytoma has been cut out, and as long as I keep taking my Keppra, I should be in the clear. I’m looking forward to the next one.
5. Sophie’s first concert with the St. Louis Children’s Choirs. Yay Sophie!
6. Taking my wife back to Maui to re-visit the place where we got married. We were going to wait until our ten year anniversary for this trip, but what the hell, life is short. As soon as my travel ban is over (this autumn), we are headed back to Hawaii. Hopefully the neurologists will let me snorkle.
7. April 12, 2025. The ten year anniversary of seizure day. Big party at my place. BYOB.
8. The acceptance of my lab’s first big research article. We have a lovely data set generated in collaboration with my friend Dr. Karyn Esser at Kentucky, which should make some noise when it gets published. I just need to get in good enough shape to do the work and write it up.
9. The award of my lab’s first Federal grant. You’re not one of the big kids until you have some Federal $$$, and I currently have three irons in the fire. When one of those lands, we’ll be in great shape.
10. Tenure. This whole experience has reinforced just how lucky I am to have such excellent colleagues in the Department of Biology at UMSL. It will be a good day indeed, if they choose to make me a permanent member of their faculty.
11. The graduation of my first PhD student. Unlike my graduate adviser, I really, really want to see my students succeed. Hearing my excellent student, Jiajia Li, defend her dissertation and join the secret handshake club will be a very happy day for me. She is going to be a monster postdoc for someone, and I’ll take a great deal of satisfaction in her success.
12. A normal work day. At some point this autumn, I’ll be approved to drive again, and I can drop the girls off at school, make my way to UMSL, work like a normal adult, talk to my colleagues and students, and get back in my car, and pick up the girls from school. In between I’ll stop to fill the car up with gas. This used to be my thing… Jing and I switch off cars, and I always made it a point to leave her with a full tank of gas. It started when she was pregnant and didn’t want to breath in gasoline fumes. In any case, the tradition has persisted, and it’s become one of the many little things you do in a marriage to show how much you care for and love your spouse. Given the million things Jing does for me these days, I’d love the chance to do some of the ordinary stuff I used to do to make her life easier. I’m tired of this goddamn illness making me an incomplete husband/father/etc.
13. Italy with Jing. Twice now, I’ve had a ticket to Italy in hand, only to be denied the trip for various misfortunes: the first was due to French thieves in Nice, and the second was a seizure after a little girl’s birthday party. Perhaps I’m not getting the message that I shouldn’t go to Italy? Or perhaps, I shouldn’t be so superstitious. Fuck cancer, I’m taking my wife to Italy. Maybe sooner, but definitely for our 25th anniversary (December 2032). By then, the girls will be old enough to appreciate Rome and Venice, and they may even have boyfriends (!!) to take along with us. This will be difficult to visualize since I’ve never actually been to Italy as explained above, but all the same, I can visualize buying tickets on Kayak, making reservations, etc. Visualizing planning, that should be good for rehabilitation of executive function, right?
14. Write up the book about this whole experience. Many readers of this blog have encouraged me to turn this into a book. I agree, and I think I have some good material here. That being said, I want the book to be about a cancer survivor, not a cancer patient. And I don’t want to jinx things by presuming a status that isn’t confirmed yet. Visualizing the moment when I can turn this blog into a book is a particularly sweet image.
In any case, these are fourteen happy thoughts that I will visualize to drive out the bad unproductive ones. People who know me well know how much I love checklists, and how much I hate unchecked boxes. Like JFK, I’m throwing my hat over the wall on this one; I consider these 14 items to be a formal and essential “to do” list.