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.

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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.

Introduction: Documents in the medical chart have a certain structure and flow, whether it is a History and Physical (H+P), consult note, or daily progress note.  This helps health care providers communicate quickly and clearly in a standard fashion (with varying degrees of success).  I tried to imagine what my H+P in the chart would look like, and that’s in bold. The rest is my response to my own H+P.  Call this creative writing, or maybe just writing.  Pictures are generally not included in an H+P, but this is my blog, so anything goes.

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Chief complaint: aphasia

Every health care provider’s note should start with a chief complaint, or a reason for the visit. The chief complaint is why the patient presented, ideally in his or her own words. It should answer, ‘why did the patient come here today?’ I have listened to patient presentations, but still had no idea why the patient was actually here that day. Yes, the diabetes, hypertension, and a prior myocardial infarction are all important, but what made him walk through the door?

My chief complaint October 29, 2015 was inability to speak. That’s aphasia. I was aware of my problem, but did not understand it. But let’s not get ahead of ourselves. The details belong in the history of present illness. There, the provider has a chance to shape the patient’s story into a coherent narrative and argument.

History of Present Illness: Dr. Craig Alguire is a pleasant 39 year old man who presents to the emergency room after two episodes of aphasia.

I never had the patience for adjectives like ‘pleasant’ or ‘wonderful’ or ‘delightful.’ I keep it blank for everybody. Play it straight. What if a positive adjective could not be mustered? What would a blank space reveal? And who wants to be just ‘pleasant?’  Also, I type my notes, so my fingers appreciate brevity.

He was a previously healthy 39 year old.

Previously. That’s an word ominous in the History and Physical genre. It means the history will be easy to take, no confounding variables, but gives the note a sense of foreboding.

He was active, doing some form of exercise each day. In fact, the first episode of aphasia occurred while he was on his stationary bike.

No, I was the healthiest 39 year old I knew. I had a birthday a week prior to symptoms onset. I exercised with some degree of intensity for at least an hour a day. I loved the feeling of pushing it too far, even feeling a wave of exertional nausea. I was making a training schedule in my head to improve my 6:00 minute per mile pace to 5:48 at the 2016 River Bank 25K. I can tell you now since I don’t have to live up to it…I was going for sub 1:30. Probably could not do it, but the plan was my distraction. My hobby.

Finishing the River Bank Run in 2013.

Bike trainer selfie of sorts.

EGRA Masters swim practice, after the diagnosis, before the surgery.

Figure: On the left, finishing the RiverBank in 2013, caught by the camera as I was trying to figure out where to meet Staci after the race.  In the middle, a selfie on my bike trainer.  A view I would need to see much more of to improve at triathlons.  On the right, Masters swim practice 11/2/15.  Andrew Maternowski, me, Danielle, and a rare Jeff Flermoen siting.

I was on my trainer on a Thursday morning. Since that date was very memorable, I can add a great deal of specificity: that would be a P2 Cervelo bike on a Kurt Kinetic trainer at 6:00 AM. I was watching HBO GO with my parents’ password on my iPhone 6 Plus. I was 10 minutes into it, and I felt the urge to talk, but could not. I could only form a stuttering, “I..I…I…I” and then it resolved within 30 seconds. I mean completely resolved. It ceased. I felt the urge to take a deep breath, and I could talk again. So, after I walked upstairs for a water break contemplated calling my wife at MVP, I just got back on my trainer, and then ran a mile on the treadmill. All systems seemed to be a go. No gross neurological defect, no gross indication not to go to my clinic.

I ran through a differential diagnosis in my head, or a doctor’s list of possible causes of a particular problem. My limited differential included stroke, mass, seizures, and anxiety. But why so focal and brief? Stroke would be the most common cause of aphasia, but I was at a low risk for a stroke, even if paroxysmal atrial fibrillation were present. My blood pressure was borderline but fine, and cholesterol, although with a low HDL, certainly did not raise suspicion of early vascular disease. Dissection of one of my cerebral arteries could cause intermittent symptoms, but that would be such a focal dissection and so rare. I did not smoke, so stroke just did not make sense.

I actually did consider a mass, but why intermittent symptoms, completely resolving? And I actually thought if present, probably no rush to get this diagnosed. ER door to cancer diagnosis time was not a marker of quality (as we have fixated on in cardiology for acute myocardial infarction care). And then I thought about all the weird and inexplicable symptoms patients over the years have told me about. A mentor of mine just suggested to acknowledge those, but do not try to explain the inexplicable. So off to work I went.

Dr. Alguire went to his went to his clinic, and felt fine. At the last patient appointment for the morning, the symptoms occurred again. The patient stepped out to get the nurse, and EMS was called. And again, the symptoms resolved within 30 – 60 seconds.

That’s when I realized something was wrong, and I could no longer be in denial. I actually told Staci about initial symptoms prior to leaving for work, and sort of shrugged. She suggested I tell someone at the office, and I did (Jeff Decker and Tom Boyden). They suggested a few cardiovascular tests because we are in a cardiology clinic (echo, carotid dopplers, etc), but I was willing to do a ‘watchful waiting’ approach.

I was consciously aware of my typing with patients throughout the morning, and how ‘normal’ it felt to make multiple mistakes at 50 words per minute. The older doctors would kill to navigate our electronic medical record EPIC at this speed.  I texted my wife at 10:59 AM, “Still alive, feeling fine.” On my last patient prior to heading downtown at the Meijer Heart Center, it happened again. I stuttered a few times, and my patient assumed I was nervous (he was 6’5 police officer, so maybe he gets that a lot on the job).

“It’s okay, just relax,” he said. I flipped over his EKG and wrote, “I can’t talk.” He jumped up to get my nurse practitioner, and it was like a code blue was called. I was ushered to my desk, given 4 baby aspirin (for a presumed stroke), an EKG (sinus rhythm), and EMS was called. Again, I was fine within 30 seconds…but not really.

You can write off one episode of something weird, a second one prior to lunch needs to be explained. And it was witnessed by a bunch of well trained medical providers. I called my wife to tell her it happened again, that I was fine, but she needed to meet me at Spectrum Butterworth Hospital.  So much for watchful waiting.

I left my desk on at pod C by a stretcher, but I could have outpaced anybody to the ambulance. Nothing like leaving your primary site of work by ambulance to arrive at your other ‘office.’ My nurse Jane Ballard could even see me being loaded in to the ambulance from the second floor and texted me to get off my phone.  After calling my wife, my second call was from one of my older sisters, Katie. She is an oncologist, as if fate was playing tricks with me.

He presented to the ER feeling fine and back to baseline.

I arrived by stretcher, but I could have biked from the office, or maybe even run the few miles faster than the roundabout way we drove.

Past Medical History: None

The last physician I saw (besides myself in the mirror every morning) was my pediatrician. My dad used to just fill out my sports physical without doing the exam (no turn your head and cough). It would be filled with smart ass comments like, ‘poor exercise tolerance,’ or tends to ‘whines with excess exertion.’ Those were the days when we took those sports physicals less seriously, I presume, because nobody questioned it.

Medications: None

Okay, a couple of ibuprofen every few weeks for a headache.

Allergies: None

Although I did tell ER doctor Trevor Cummings I was allergic to Tylenol and NSAIDs, but that medicine that started with D seemed to always work well for me and my pain (okay, that is an insiders joke). I felt fine, did not need anything.

Social History: Does not use tobacco products, drinks 5 beers a week. Cardiologist. Married, 4 kids. No illicit drug use.

The social history is what and who you are, but gets boiled down to smoking and alcohol for the most part in the Emergency Room. Not included: married his high school girlfriend, and no other really serious girlfriend. I still look furtively over my book at night while she changes into her pajamas and smile like I was getting away with something.

Family History: non-contributory

Most of family history reported by patients is non-contributory, but may give insight into anxieties. Father died of cardiac arrest at 69? You are 68? Noted. Primary brain tumors generally do not have a family history. In fact, two cases of GBM in one family still appears to be chance more than hereditary. Anyway, my family history was benign.

Review of Systems: Reviewed 10 out of 14 systems, and negative except as mentioned above.

I will have to admit, I probably don’t know 14 systems, and why only 10 of them are generally reviewed. This is primarily for insurance purposes.

Physical Exam: 170 / 95 mm Hg, pulse 80 bpm, respirations 12 per minute, 98% pulse ox on RA.
General: no acute distress
HEENT: no jvd, no carotid bruits
Pulm: clear to auscultation
Cardiac: RRR, no murmurs / rubs / gallops
Abd: soft
Pulses 2 + throughout, no edema
Neuro: Non-focal

The physical exam is probably overly emphasized in the minds of patients, where physicians know the bulk of diagnoses come back from the History of Present Illness.  But I do believe in vital signs, and I was hypertensive. Despite my calm outward appearance, I was in fight or flight mode.

Labs: Normal

This is where a formal case report or presentation would pause and state “a diagnostic test was performed.”

Imaging:

Non-contrast head CT: Moderate localized mass effect with subcortical attenuation, centered at the superior gyrus of the left frontal lobe….Neoplasm is the primary differential consideration.

My cardiology consult, colleague and friend broke the news. This was not a stroke. Unbelievable when you are disappointed with that realization. As most radiology reports conclude, this one suggested a second study.

MRI Brain W+W/O Contrast: There is an aggressive appearing, enhancing mass lesion…evidence of hemorrhage with the lesion. High-grade glioma is thought most likely.

Figure: My MRI, my brain, my tumor.

I do not remember the receiving the news, one of the few things I do not remember from that week. I only remember hearing the neurologist’s footsteps coming down the hallway, pausing for about 10 seconds in hallway, and Katie weeping. Put that in the ledger of a bad prognostic findings when your sister the oncologist is openly weeping prior to breaking news.

Assessment and Plan:

Dr. Alguire is a 39 year old ‘pleasant’ man who was ‘previously’ healthy presented with episodes of aphasia and a new diagnosis of brain mass most consistent with a high-grade glioma.

Brain mass: differential includes primary brain cancer (high grade glioma) and metastatic disease. Infection also possible.
-consult neurosurgery
-steroids and anti-seizure therapy with Keppra

Aphasia: likely secondary to partial seizures

Any good internal medicine note will have a differential diagnosis. As patients like to say, “I am not a doctor, but…” Well, I am a doctor, but not a radiologist, neurosurgeon, or pathologist (the proper pathway for a diagnosis of a brain mass). However, I looked at my scans and winced. This was brain cancer, and almost certainly glioblastoma grade 4 (or glioblastoma multiforme).

Nobody needed to tell me what my oncologist sister Katie,did not already say by crying in the hallway. There was a golf ball sized mass in my left frontal lobe anterior to my motor cortex. This is the area of the brain that controlled the right side of my body.  Irritation locally caused a focal seizure involving the nerves controlling my speech.

“No symptoms?” Not until today. Felt great in fact.

And so I was admitted. My medical journey probably began on my bike that AM, but it felt acute on the hospital room. This is where my journey as a physician — from a family of physicians — started as I needed to navigate the health system from the other side. I was admitted to the hospital, but staying in the hospital is miserable and of no utility in our opinion.  My sister was already communicating with a neurooncologist at the University of Michigan while my scans were being read. Really, this was not an emergency.  I was not having unstable neurological symptoms, and there was no evidence of increased pressure in my brain.  By the time I settled into my room, I had an appointment scheduled the next day at 9 AM at the University of Michigan with Dr. Shawn Hervey – Jumper.  We only had 1 recommendation, but he sounded professional and accommodating on the phone.  I took my decadron and Keppra prescription, and asked for discharge while the hospitalist did his intake History and Physical.

My sisters were in the room with parents, Uncle Jim and Aunt Joyce in addition to Staci.  I’ll just remember my Aunt Joyce, Grandma Alguire’s younger sister, saying she would switch spots with me if she could.  I knew it was true, so I cried for the first time. Not for me, but just for the truth.

I’ve never written a book, no essay since college, and certainly no creative writings. Yet, I journal frequently over e-mail, texts (do not release those texts, you know who you are!), Facebook and Instagram. I draw the line at Snapchat, and leave that for the younger generation.  All of these have been a surprisingly effective and helpful outlet and inlet for support.   The image created above by Courtney Kerry swarmed my circle of social media and even the real world with T-shirts.  This blog will serve as a journal of experiences as a I change from doctor to patient, and hopefully back to better doctor.  It will include some creative writing, daily routines of cancer, education on brain tumors, and to be determined.  If my mom is the only one that reads this at the end of the day, well, it would serve a purpose.

I had a hot streak going for 39 years and 1 week.  Honestly, I simply loved to be alive.  I loved my routine, work, colleagues, friends and family.  Call it a combination of genes and environment leading to the right milieu of chemicals in my brain.  Maybe some would be inclined to say blessed, but that would make for a pretty nauseating blog.  “Another great day!”  I just had a positive outlook, but as a physician, knew that it was all fragile.

Here is a brief background.  Feel free to skim if you know me.  I was born in Grand Haven 10/22/1976 to Tom and Mary Kay.  Dad always called me a mistake, but I think mom had other plans.  I have two older sisters, Amy and Katie.  They both live in Grand Haven after earlier work and life adventures around the country.  They both have 3 girls each to complement our 4.   I married my high school sweetheart after dating for something like 8 years.  I’ll give Mary Kay credit for that nudge, too.  Okay, you were right, mom.  After graduating from Grand Haven, we both went to Michigan State.  I went on to the University of Michigan Medical School, and just did not see a reason to leave for 11 years: medical school, residency, chief medical resident, and then cardiology fellowship.  We got married and had 3 kids over that period followed by a fourth child in Grand Rapids.

Figure: Two generations of family.  On the left, those that I claim responsibility: Allison (11), me, Ella (6), Staci, Mia (2) and Connor (7).  On the right, my original 5 plus my wife, Staci:  Amy, Katie, me, Staci, Mary Kay and Tom Alguire.  

Glioblastoma Multiforme (GBM)

On 10/29/15, I was diagnosed with glioblastoma multiforme, or an high grade / aggressive glioma or grade 4 glioblastoma.  Honestly, the nomenclature is difficult for me to read through because it is full of gloom.  Research articles always start with an introduction to the problem, and no punches are pulled.   Even UpToDate (internet resource for doctors) reviews can provoke nausea more than chemo.  Yes, I know the magnitude of the problem, let’s skip to the meat of the article.  Do  not use this blog as a study guide, although I will plan to have a post on “Brain Cancer 101.”  I heard I had a terminal diagnosis on 10/29/15, but the termination point is yet to be determined.   Life is terminal.  As my neurooncologist Priya Kumthekar said, “we are all our own statistic.”  She followed that up with “Let’s rock this.”

I was assigned to write a book by my sister Katie (kd), an oncologist.  Book and blog sound a lot a like, and this is easier.  A blog lowers expectations.  I have a diagnosis and treatment that inevitably leads to some neurological decline. Please excuse any grammatical errors if any former English teachers are reading this.  Part of my brain has already been removed, and gets irradiated daily.

Thanks

Thank you to my family and friends. My mother who always believed I could do better, but knew I had it right with Staci. My dad who provides comic relief, sometimes unintentionally, but at times just seems to come through with absolute clarity. My big sisters who have always cleared a path, but circled back to protect the little brother that I still am. 

And to my cherished wife and children, Staci, Allison, Connor, Ella and Mia: I never thought I could love something so fully with every ounce of my being.

Let’s rock this.