On 11/5/15, I underwent an awake craniotomy with maximal resection of a Glioblastoma Multiforme from my left frontal lobe at the University of Michigan. The week from diagnosis to surgery was the best and worst week in my life. I had a very public diagnosis even prior to my official announcement via e-mail, texts and Facebook. By the nature of my work, I recognized 5 emergency room physicians prior to settling into my room. “Do you want to keep your visit private?” I was asked by an intake clerk. That was an impossible task. One ER physician (Amy Bishop) was actually at my house earlier that day for a play date (or whatever my wife would call it) while I went to clinic. “No, you can use my real name.”
The week was between diagnosis and surgery felt raw emotionally and physically, accentuated with the help of steroids (decadron). Seriously, I am not sure what the draw to narcotics is — decadron is where it is at. Norco is merely numbing and sedating. I would swoop high and low, signing off reply all e-mails to colleagues with ‘love,’ curling up in the fetal position and crying early in AM (my bad time), or in neighbors houses as we went trick or treating on Halloween. At other times, I just had a calm sense of gratitude. Oh, and I really felt like I was getting things done. Being productive. Fueled by 3 hours of fragmented sleep, coffee and steroids, I was able to watch The Walking Dead at 4 AM, keep up with Slate podcasts, and e-mail with a fury. Never mind the midnight, 2 AM, and 4 AM snacks (and subsequent weight gain), acne, and reheating dinner leftovers at 8 AM. Decadron is life concentrate.
After a night of minimal sleep, we travelled to the University of Michigan on 10/30/15 for a surgical opinion. My case was medically straight forward, so almost any surgeon would quickly agree: resect as many bad cells while keeping as many Craig cells as possible. That was reassuring. I was otherwise healthy, and the tumor was in a location that maximal resection was possible. Otherwise, a biopsy for diagnosis and / or partial resection would need to suffice. Depending on patient health status, this would be followed by chemotherapy and radiation. These tumors present based on location with headaches, tumors, personality changes or local compression causing focal deficits. For me, chemotherapy and radiation would be a given, and overall health would make me a candidate for experimental therapy.
We met our surgeon at 9 AM. Calm, cool, and collected, Dr. Shawn Jumper felt like the eye of the storm, and we just needed to stay within his range. We left with an order to get a chest / abdomen / pelvis CT in the hopes of finding some other metastatic disease (see Lance Armstrong / testicular cancer, or lymphoma), functional MRI, and eventually a speech pathology consult the following week. We had a surgical plan for 11/5/15. Staci, Katie, Dad and I felt good. Amy and Mom were at home, keeping some sort of normal routine for the kids.
Figure: On the top left, posing with Dr. Shawn Jumper. On the bottom left, keeping a routine at home with Aunt Amy. On the right, big time Bigby coffee.
The week that followed was filled with second guessing and opinions, but kept trying to remind ourselves of the ‘vibe’ we had with Dr. Jumper. With multiple generations within the health field, and a sister in the field of oncology, it almost exceeded our ability to investigate. Go to Duke. Anybody But Duke. MD Anderson. Cleveland Clinic. Why not Grand Rapids? Certainly all good options. It is a luxury and a curse to have connections. Classmates at University of California San Francisco, neurosurgeon trained at Duke, radiation oncology at Cleveland Clinic, oncologist trained at Northwestern, and countless private opinions, and I was still barely able to read about the diagnosis. In the end, it was the vibe we felt in clinic, comfort of a trusted institution, and the horror of having a complicated course 1,000 miles from home kept me in Ann Arbor. Proximity counts.
Besides standard (Western) opinions, I was also welcomed into the world of alternative therapy: balancing pH, vitamins, removing toxins (I have toxins?), anti-oxidants, and what not. I am completely aware of how difficult benefit is to prove in medicine, and certainly this list did not meet that rigorous standard. The stories were attractive, though. When you have something that is largely deemed incurable, you desperately seek out anecdotes from long-term survivors. What did they do? Where were they treated? In the end, their survival probably had as much to do as good luck as the initial diagnosis was bad luck. Fortunate mutations, response to treatment, biology, and host. But the victors get to tell their stories, and what they perceived as causing victories (just like skinny people get to tell you how to lose weight). I asked my surgeon what he thought about redo surgeries. Inherently, he admitted, results are biased, because those patients deemed reasonable candidates for redo surgery are just different from those denied. “They do well,” he said. I stick to a healthy diet, exercising (ran with Todd Chassee and Darryl Elmouchi that first week in addition to numerous walking partners), and a craft beer each night. Prove to me that does not work.
After a several days of my sister e-mailing, sending out films, phone consults, we stuck to our original plan at University of Michigan. Game time was 8:30 AM. We got out of bed at 2:30 AM after not sleeping at all, had a light breakfast (sorry anesthesiology, but it was still before midnight in California) with coffee. I could not imagine anything worse than brain surgery in the setting of caffeine withdrawal. I am not sure what would hurt more, no coffee or the saw. Amy stayed at the house to shuffle kids to school with mother-in-law Gail to join after work. Staci and I left Grand Rapids at 4 AM with parents and Uncle Jim driving behind. Katie came up later that morning. Team effort.
An awake craniotomy is what it sounds like. They put me to sleep for the foley catheter and placing my head in a halo, but then sedation was lessened, and I was the star of my own surgery.
I am not even sure what to say about current cancer diagnoses and social media — that may deserve another blog. I certainly have not adequately thanked everybody for their thoughts, prayers, time, and resources given to me and my family.
Figure: A sampling of some unusual gifts. I learned to ask for things, but cautiously. A ‘couple’ Trout Steak Revival CDs from the McNamaras, a signed football (making it difficult to shake this football habit of mine), and a lucky cup from Jeff Decker. I’ll get that back to you.
So below is my first person narrative of my surgery. Since I was awake for it, and an active participant.
An Awake Craniotomy First Person Narrative
“Hello, Karen,” I said as my eyes opened.
“Hi Craig. How are you doing?”
That’s a difficult question to answer when part of your skull is removed, brain is exposed, head held stable by screws from a halo structure. “Fine. No, great.”
It felt like curtains were going up at the theater. Darkness followed by a small stage filled with actors. I was watching the stage, but also needed to perform. I could only see a small portion of Karen’s face over her mask and below surgical cap. But I was expecting her. She promised she would be here. I only met her a few days before, but she was a familiar face in an unfamiliar environment.
I was not really sure what to call her. Karen? Dr. Kluin? She had so many initials after her name. That’s okay, she’ll just assume it is the sedation making me a little less formal. Amy and Umberto were also in my field of vision. I knew they were my anesthesiologists (attending and resident). I could not see my surgeon since he was cranial to my field of view, appropriately enough.
It was true. I felt great, and was ready for this. An awake craniotomy is a team effort. The surgeon, scrub tech, nurse, anesthesiologist, speech pathologist (in my case), and me. Where most surgeries are passive, this was active.
I ran through the names of the people present just to show off. “Oh, Hi Amy and Umberto.”
“Okay, let’s review our cards, ” Karen instructed. The images were from the 1950s, but why change what works. The first picture showed a nice middle class house, probably supported by a burgeoning auto industry. This was followed by clock, pitcher of lemonade, dog. I scored 4/4. Easy. The tumor was close to my motor cortex and speech forming (Broca’s area) in my left frontal lobe of my brain. I could wiggle my toes and do rapid right hand movements. All systems go.
“House, clock, pitcher of lemonade, dog.”
I trusted Dr. Jumper. When faced with a terminal illness, people get desperate. I was torn between convenience and brand name glioma centers like Duke. I wanted the best surgeon, the best hospital.
I did a pretest with Karen a few days before for a baseline. I aced the cards, the comprehension paragraphs, the detailed images. Embarrassingly, I was below average in coming up with as many animals as possible in a minute. I choked. What use is reading all these Ranger Ricks with the kids if could not impress anybody? I should have just imagined myself walking through a zoo.
The plan was to play music to put me at ease with music that I requested. This lead to a funny exchange immediately prior to bringing me back to the OR. The administrative assistant asked my family for the CDs as I was being wheeled back to the OR. “Dr. Jumper does not have them?” The administrative assistant gave the impression the surgeon did not have my MRI images. No, he was requesting the audio CDs for my comfort. Either way, a bit disconcerting for my team. He could operate just fine without my Trout Steak Revival CD.
“House, clock, pitcher of lemonade, dog.” Wiggling my toes and doing rapid hand movements like a champ.
Versed is truth serum, and I even let Dr. Jumper know what I thought about various curbside consults we received. And I confessed that I actually ate after midnight since I knew everybody would be better off if I had cereal and coffee in my stomach that calendar date.
Dr. Jumper stimulated too many Craig cells, and my right side tightened as I did an involuntary biceps curl. My surgeon was the puppet master, and me just a performer. His tools were rudimentary, but effective. Whatever he was poking around in contained too many Craig cells to resect. I slowly relaxed.
“…house, hum… watch or clock, drink,…pet” all a bit delayed, some only tangentially accurate. Save that area, too.
The tumor was mapped, time for my nap. I woke up a bit later with staples in my head, an IVs in my leg and arm with an art line, serial compression devices on my legs, foley in the bladder, and drain in my head.
Figure: On the left, my brain with a lot of cancer. On the right, my brain with much less. I remembered seeing an iPhone during my surgery, and asked my surgeon to send me the images. A video was also taken of my response time and accuracy to Karen’s questioning, but too long to share.
Amazingly, the rest of the hospitalization was event free from a neurosurgical standpoint. If I did not have urinary retention from the f’n foley (foleys can only be addressed that way), then I could have walked out post-op day 1. On to recovery.
Figure: Discharge day, 11/7/15.