My last couple of posts have been on the grim side: posthumous messages, etc. So it’s worthwhile to detail a couple of items I’m extremely grateful for.
1. Friends, family, colleagues: I’ve been overwhelmed by the support we have received. Literally hundreds of people contacted us to offer help. I’d especially like to thank my colleagues at the University of Missouri-St. Louis who have been exceptionally generous and understanding during the last couple of weeks.
2. I’m grateful the tumor was in a relatively quiet part of my brain and accessible to surgery. The pre-motor cortex on my non-dominant side is pretty much ideal in terms of recovery and rehabilitation.
3. I’m especially grateful that the seizure happened at home, and we had access to world-class medical resources in St Louis. I was supposed to be on a plane to Italy later that week to attend a conference with my mentor and friend, John Hogenesch. My seizure could have been mid-flight, or in a hotel room in Florence, after a bottle of wine and some espresso, and John would have had to get me to the hospital – whilst speaking Italian – then call home to give the bad news. Also, had my academic job search turned out differently, we could have been far from any family with dramatically complicated childcare, which has been handled almost entirely to date by my parents who live nearby in KC.
4. I’m grateful I’m the one who got the tumor instead of one of my girls. If it had been otherwise, I would be bargaining (ineffectively) with some higher power to please let me take it for them instead. I’m the right choice – I have the health and mindset to fight this thing with the greatest effect. I’d rather be in the ring, fighting, than trying to manage my impotent rage at the unfairness of it all.
5. I’m grateful we were able to get a surgery date so quickly. My seizure was on April 12, the tumor was diagnosed that afternoon, and we were on our way to Barnes Hospital to have it cut out at 5am April 16, about 80 hours later. It didn’t necessarily have to work out that way – we could have waited for weeks. And, it would have been damn near impossible to go to work and act like everything’s ok for that length of time. Much better to get it over with and start the rehab process before you have time to think too hard about it.
Heading into surgery is like leaving for the airport at an outrageously early hour. No one is on the streets. You’re not allowed to eat breakfast, and you wouldn’t anyway, because you don’t have an appetite that early, and your mind is on the ordeal ahead of you. For reasons I can’t quite explain, I dressed up like it was the first lecture of the semester: my best work slacks, a light-blue button-down shirt, lucky thong printed with four-leaf clovers (Thanks John), and my best pair of slip-on shoes (this is an important detail, even without neurological issues, tying your shoes post-op is going to be a big challenge). A casual glance around the surgical waiting room tells me that I’m not the only one with the impulse to dress up for the occasion.
Which is funny, because as soon as you’re invited past the gatekeepers, the first thing you have to do is strip down and put all your clothes into a very morbid and depressing bag labeled “patient’s belongings”. Then you get your IV lines. In my case, they stuck my left hand twice, but couldn’t thread the catheter either time, so they called in the cavalry, and the attending had to put a line into my right hand. I’m unclear why there was so much difficulty; I have lovely juicy veins. In any case, the difficulties continued after I went to sleep; they put the arterial line into my left wrist, and judging from the extensive bruising (which is only just now resolving) and the multiple puncture marks, they had to take several stabs at it (pun intended). Right before the big show started, the surgeon came by to say hello. Jing asked whether he’d had his morning coffee (I think she was more nervous than me), and Dr. Chicoine responded that he doesn’t drink coffee, which is about as much of a response as the question deserved — at some point, you have to have to trust the professionals.
I had been placed under general anesthesia four times previously — once when I was a toddler that I don’t remember at all to correct a very minor issue, once for my wisdom teeth, once when I had my jaw broken by a baseball and had to have my teeth wired back in, and once to investigate a suspicious lump on my right testicle that turned out to be harmless (when thinking about that earlier cancer scare, I recall the “easy courage” of eighteen year-olds discussed previously in the post about Mark Helprin’s “North Light”). So, I had a pretty good idea about what falling asleep would be like: they’ll give you Valium through your IV, and your anxiety and memory will float away like dandelion seeds. Valium is awesome, seriously. After they pumped it in, I remember trying to focus my mind on picturing my children’s faces as clearly as possible, for as long as possible. Alas, that’s right when my memory cuts out. Which is very unsettling. I flatter myself that before all this I had an excellent memory and could re-play conversations in my mind as if I had recordings of them saved in my brain, a very useful trick I developed in high school with my good friend, Chris Lauer. In any case, one of the more unsettling aspects of the last couple weeks is how many sizable gaps in my memory there are. Valium went in, memory went off. Though apparently after the first dose of Valium I was still coherent enough to say that it “didn’t do jack.” So then I got more. If this story is true, and I have no reason to suspect otherwise, good for me. Like I said, Valium is awesome. A moment later I was awoken by a well-intentioned nurse enunciating very loudly and clearly whether I remember any of the surgery at all. I thought as long and as hard as I’ve thought about anything and answered truthfully that I did not. Then I got transferred to the ICU.
I didn’t care for the ICU much. Too many wires and tubes coming out of me. They were feeding me oxygen through my nose and kept chastising me every time I pulled it out (I didn’t like those tubes at all). One of the fellows yanked on my Foley catheter by accident, resulting in one of those “new lows” I referred to earlier. Nonetheless, besides prolonging the lives of very sick people, the other core virtue of the ICU is in generating lots of high quality physiology data — respiratory rates, O2 saturation, heart rate, BP, etc. In the murky depths of my ICU memories, I recall technicians commenting on how my numbers would go a little “wonky” whenever my wife left the room. Which sounds about right to me: I am literally BETTER when she is nearby.
What they actually did:
Piecing together the threads of what was done to me while I was asleep is no easy task. Briefly: a strip of hair about a centimeter wide was shaved from ear to ear, running over the top of my head. This is where the incision was made. They also drilled two burr holes behind my ears to anchor the surgical field and keep everything stable. The skin over those burr holes has only just now healed, although the spots themselves remain tender and sensitive to pressure. They removed a piece of skull about the size of a playing card directly over the tumor, and upon doing so, realized that three veins were within the surgical field. So, the tumor resection was performed around those vessels, which is a really amazing feat of surgical prowess, if you think about it. They removed as much of the tumor as they could, which is tricky, since this sort of glioma has no obvious boundary with normal tissue, and then used intra-operative MRI (which is just my favorite thing in the whole world these days, aside from Ruben sandwiches) to image the remaining tumor. There was still a sizable amount left, so they re-established the surgical field, and resected more of the tumor. Then another MRI; then another re-establishment of the surgical field, then more tumor removal. All together, there’s hard evidence to support the notion that this surgery was a gross total resection, which is exactly what I (and everyone else) was hoping for. My skull flap was put back where it belongs and secured with some titanium fittings. All told, they were in my brain for about 12 hours, which was a very very long day for the surgeons and for everyone who was waiting for updates. The big incision was stitched up with an estimated 80-100 stitches (a “boss scar” according to my friend Tim Mosca). Surgical bandages were then secured with heavy-duty staples. If you can imagine removing staple-gun staples from a 2×4 with a pair of needle nose pliers, and you imagine yourself as the 2×4 you’ll have a decent idea of what it was like when I had them out two days later. I apologize for the grisly image of my incision, but if I can bear to have it done, others can bear to look at it. Although, my little princess Sophie was not so brave when she saw the incision for the first time. Here is a candid shot of her reaction to seeing what they did to my head. I cherish this photo of Sophie; she has a good heart.
In the ICU
Like I said, I didn’t care for the ICU much. Memory is hazy, but I recall being outrageously thirsty for water, ice chips, juice, anything, and soon thereafter was vomiting liters of fluids. Either the narcotics or the steroids didn’t agree with my constitution. Jing shared an eye-roll with the ICU nurse when I rated my pain as 1 out of 10 in order to avoid medication. But honestly, except for the surgical staples and the brisk removal of the Foley catheter, I was never in any notable amount of pain. Besides, nausea is worse than pain any day.
“…for my fingers…”
I typically have some song or another playing in my head almost constantly, and when I woke up in the ICU, I found Paul Simon’s “Duncan” playing in my head. The connection took me a while to figure out.
“I was playing my guitar / Lying underneath the stars / Just thanking the Lord for my fingers / for my fingers.”
The good news was that sensation, strength, and coordination were all pretty normal on my right dominant side. The left side was more problematic. A few days post-op when we actually took some measurements, my left hand grip strength was less than 50% of the right hand’s. On a 9-peg test of fine motor coordination, the left side was 50% slower than the right. My friends from Nitabach lab, Ellie McCarthy and Michael Kunst, will confirm that I was once able to dissect 50 fruit fly brains in under an hour, so any weakness or loss of coordination in the left side is worrisome. ‘Course, in the ICU, like Paul Simon’s Lincoln Duncan, I was delighted to merely be able to touch my thumb to each finger in turn.
Other interesting sequelae:
1. For about a week after surgery, I heard unsettling clicking sounds, and occasionally sloshing sounds coming from my cranium. It was so loud, I asked my mom whether she could hear them too. She couldn’t, they being literally in my head. Apparently, this is common in patients who have had a craniotomy. I’m happy to say it’s subsequently resolved. For concerned craniotomy patients who stumble across this blog, I’ll say that the sounds ended within 7-10 days post surgery.
2. My sense of taste, especially for sweet things is altered. Imagine trying to grip the lid of a pickle jar with a hand that’s fallen asleep. That’s what it’s like trying to taste something sweet, like a soft drink or ice cream. Sweet things just don’t quite taste right. Speaking of pickles, and on the other hand, sour and salty things taste fantastic since surgery. Ruben sandwiches are just the best things ever invented (aside from intra-operative MRIs). I recall that when Jing was pregnant with Sophie, she craved sour and salty things too; perhaps pregnancy mimics craniotomies?
3. My sense of smell is probably twice as acute as it used to be. I can smell water now. That is, if a bathtub is filled, I can smell it in the next room. If the neighbors’ dogs go potty, I can smell it immediately. Not the most enviable super-power, I know.
4. There’s a patch on my scalp, about the size of the palm of your hand which is entirely numb. I’m hopeful this will resolve in time.
Earlier, I said that April 12, 2015 – Seizure Day – was the worst day ever. From everything we’ve heard, there’s a very good chance that Dr. Chicoine successfully achieved a Gross Total Resection of my tumor. If so, and if the damn thing doesn’t regrow, I will rank April 16, 2015 – Surgery Day – as among the very best days ever.