I had my first follow-up MRI after the initial 3 months of therapy on 2/9/16. This was the hardest punch I could deliver to glioblastoma multiform (GBM). Dr. Hervey – Jumper did a maximal resection followed by temozolomide, radiation, and an experimental immunotherapy. I staggered a bit after surgery. I became a mall walker (not that there is anything wrong with that). I transitioned to walk – runs, runs, but back down to walks after a few headaches. I needed to build myself up slowly. Any disturbance in my schedule lead to headaches. Poor sleep? Headache. No caffeine? Headache. Too much caffeine? Headache. Not enough Staci? Headache. Too much Staci? Never happened. If that initial MRI didn’t look good, I could still fight, but my arsenal would be vastly depleted. It would probably be repeat surgery with second line therapy. There are plenty of reports of people doing well long-term after an early second surgery, but I just wasn’t mentally ready for it. I needed at least a few more months with Plan A.
I was able to compartmentalize my family, work, love, and GBM much better. When the MRI was within 24 hours, I did not even dwell on it. I had a few patients to see, and kids to put to bed! GBM could wait. Even sitting in the MRI scanner felt relaxing.
“Don’t fall asleep!” I vaguely heard the technician through my earphones over the howl and clicks of the MRI machine. I twitch when I fall asleep, and this is not ideal for imaging small structures. I only became nervous once we (Amy, Katie, Staci and I) were roomed and Dr. Priya Kumthekar walked through the door. I tried to get any clues from body language. She smiled. Good, right? Or maybe it was a sympathy smile. Not sure. After we delivered (off loaded or dumped a better word?) Mom’s crocheted gray ribbons to my Northwestern medical team, we got down to business. I am not really sure what the NW team thinks of the volume of crocheted gifts, but my mom needs to do it.
“Every resection has a rim of scar tissue around it. It can be more prominent in places. The perfusion scan is textbook for scar and no early recurrence. It looks good, but I can’t say great without viewing your old film from UM.”
I wasn’t sure how to react. I’ve focused on not letting myself get down, so it became difficult to feel up. I knew there would be ambiguity. There will never be a ‘normal’ scan. I needed a simple recap of the MRI.
“This is a good thing,” said Dr. Kumthekar, seeing that I did not understand.
Oh, it is good. Good is good. People talk about only remembering one or two things a doctor says, especially around topics like cancer. I, however, was just lost in in the details, unable to deduce the one or two take home points. I needed just a ‘good’ as the bottom line and move on.
So Amy, Katie, Staci and I stood up for a group hug. I don’t like the competition or war analogy for fighting cancer, but this was a small victory. Priya asked to join in, and the young doctor was included in our circle (I still can’t believe my neurosurgeon and neurooncologist are younger than I am). A few tears, multiple texts, and a sigh of relief. And now, reflecting back, a sense of gratitude fills me. That capped of stage 1, and we were entering the (prolonged?) maintenance phase. It took a lot of people to get me here. I had a lot of help, and an embarrassing amount of support from family, friends and colleagues.
It is kind of weird to move on to the regular business of an appointment after that.
“Hold out your arms, palms up, close your eyes,” the doctor said.
“Do you have a tremor?” The seizure meds could do that, even after stopping them, and who knows what else.
“No. I mean, I have always had a little shakiness when nervous.” Let’s not add to my diagnosis list with an essential tremor! I wanted to keep my medical file as clean as possible, not interested in further self exploration. GBM, clots, partial seizures, and liver function test abnormalities is more than adequate for a lengthy interview with a medical student. Actually, I got used to the tremor when very excited, even growing up. I learned to take it as a sign that I would do well. I only got shaky at very important events, probably just some nervous adrenal overdrive. That also contributed to my career choice in non-invasive cardiology (instead of invasive) or lack of patience for skill sports like golf. My muscles paradoxically need to be in action to completely relax. Holding a needle steady to enter a femoral artery during a myocardial infarction, or a club steady under pressure would not be my forte. But persistence and speed under pressure, well that’s another story. Once the race started, I could just relax.
My sister Katie had the audacity to suggest I had a chronic cough. “Post-nasal drip? Or asthma? I guess your chest CT was normal…” I’m fine. My world has become a big examining room. Too many doctors around for my own health.
“Have you noticed any cognitive decline?” asked my nurse practitioner Meg Schwartz. Well, that would take a lot of insight. There is a neurological condition, often caused by a stroke, called hemispatial neglect. I think about this a lot. In this condition, the patient has some visual defect, often from a stroke, that also limits the awareness of the defect. A patient might not be able to see to the left, but more interestingly, he is not aware of the defect and appears to just ignore that area. A person standing in the defect could be completely ignored. Half the face could go unshaved. Do I have some ‘blindspot’ to my own cognitive deficiencies? Am I actually still working, writing or running, or are people just humoring me? I am doubtful since I am acutely aware of any physical stumble, misspoken word, or forgotten moment. And my tumor is close to my motor cortex guiding my right side. Any recurrence would most likely lead to right sided motor deficiencies or maybe speech impairment. Can Connor now beat me in HORSE in his room? Yes, but that’s not cancer. He is almost 8. Let’s crank the hoop up to 10 feet outside and play again this spring. I need to score a few more victories before a big time losing streak to a kid with better basketball lineage on his mother’s side.
I want to start hearing questions about powers I may have possibly acquired from radiation. Multiple superheroes have acquired their powers from radiation: Spiderman (bit by radioactive spider), the Fantastic Four (exposed to ‘cosmic’ radiation), the Incredible Hulk (too close to a government run experimental gamma bomb).
“Your handgrip is stronger, Craig, have you noticed any super strength?” No, this is just baseline.
“Ability to fly?” Only in the water or with running shoes on.
“Super intelligence?” Funny you ask. With part of my left brain removed and irradiated, I can only imagine I would be more right brained. So, out with logic, math, and linear thinking, and in with creativity, imagination, and feelings.
So yes, I am doing well so far. That is a good thing. Good is good. A stumble up the stairs, an essential tremor, occasional clearing of the throat or cough. well, that’s just me. Cognitive decline? You be the judge. Cardiology is pretty easy compared to facing a blank screen and typing.
Figure: Left, Allison swimming the butterfly. Photo credit David Chandler. Right, Craig swimming the butterfly. Photo credit John Ackerman.
The Cancer Card, the Play. Based on actual events or real imagination.
Narrator: Craig is talking to an undisclosed dental office in Gas Light village. Craig had a dental appointment scheduled for 12/11/2015, but that would coincide with the end of week one of radiation and chemotherapy. On 11/27/15, he called the office. Let’s listen in.
Craig: “Do you have any appointments next week? I am not sure if I’ll be able to make 12/11.”
Dental: “no, we pretty much are booked for a few weeks. We could reschedule at a later date…”
Craig: “That won’t work. Any day next week would be fine. My schedule is pretty clear.”
Craig: “I’m starting chemotherapy and radiation for brain cancer 12/7/15, so it would be great to get that appointment done prior to starting therapy.”
Dental: “Oh, can I put you on hold?”
Craig: (winking at audience) “Sure.”
Pleasant hold music for 30 seconds.
Dental: “Well, it looks like we do have an opening for Monday at 1 o’clock. Would this work for you?”
Craig: “Monday at 1 PM is perfect.”
Narrator: The scene is Gaslight Starbucks. Craig walks in with Staci and Mia. They bump into a friend.
Wendy Wohns: “It is so good to see you. How are you feeling?”
Craig (pulling off his head to show his newly bald head with a scar): “Fine. Great.”
Wendy Wohns: “Are you back to work?”
Craig: (speaking loudly so the barista Kyle can hear) “I’ve been back to work part time after chemotherapy and radiation for brain cancer. I am not a hero, I just want to get back to work and enjoy Starbucks like everyone else.”
After a hug, Craig steps up to counter.
Barista Kyle: “Glad to see you again. Your order is on us today.”
Craig: “Okay, I’ll have a tall coffee. What about Staci and my 2 year old Mia? She loves those suckers.”
Mia: “Pink cake pop.”
Barista Kyle: “Um, sure.”
Craig: “And a soy latte for my wife, extra hot, if not too much trouble…”
Narrator: Staci and Craig got a Groupon for Fzique, and exercise studio in town. Staci bought a Groupon, but Craig felt left out, so she bought two. It become a date on Thursday morning after dropping off Mia with ‘Grandma’ Susan Wolford. Unfortunately, they accidentally missed the deadline to use the last spin class. Staci emailed the owner, and then Craig called one of staff.
Craig: “Oh, hey, we accidentally missed the deadline for one of our classes.”
Fzique: “Well, we heard this was your ‘date night.’”
Craig: “Yeah, so romantic. We are weird like that. About that class…”
Fzique: “We thought we would offer you 6 months of one class per week for free…”
Craig: “Wow. That’s generous. Now, will that start after the class we missed?”
Well, that should be good enough for now. I was typing this at the Junior Olympic swim meet in Zeeland and at practices at the EGR pool, trying to make use of hours of down time. I swam a Master’s meet last week in Grand Haven, and it reminded me how stressful swimming is as a participant. So many things can go wrong just from the start, that’s it just a relief to find your goggles still on after you hit the water. I am not sure how all those kids do it again and again. Allison, my oldest, is just a thrill to watch. As a small 11 year old, she barely hits the shoulder of most of her 12 year old competitors. She makes up for smaller hands and shorter limbs with a very rapid turnover and an all out effort. I can’t help but smile at her passion. She improved all of her times, getting close to state cuts in several events. I’ve heard Annie Schmidt’s dad used to say ‘dynamite comes in small packages.’ When she came out of the locker room at Zeeland High after the final session, I hugged her, but could only whisper, “I’m proud of you.” If I tried to say anymore, she would have heard my voice crack or seen the tears.
“I’m hungry,” she replied.
Figure: Left, Allison prior to morning practice. Middle, Allison on the podium for the 50 backstroke. Right, Alli and her Waves teammate Ella Gjorgjievski.