Team Craig Update

I had repeat surgery 11/13/17 for what appeared to be recurrent glioblastoma multiforme.  As described before, I had a new, growing lesion anterior and inferior to my prior resection cavity, but within the original radiation treatment field.  Fortunately, the pathologist has the final say on most things, including whether there is cancer present or not.  In his or her opinion, there were no cancer cells.  Like most pathologists, you never get to meet them as a patient.  They are doctors for doctors.  That means, I can go back on Plan A with Vitamin P (pembrolizumab) every 3 weeks at Northwestern.  When Dr. Kumthekar said I could be back in the clinical trial, I almost cried, but not quite.

The last few weeks were a whiplash of emotions.  First, I heard there was likely progression on the MRI 11/1/17, and I would be removed from the pembrolizumab clinical trial.  I needed to let the pembro ‘wash out’ prior to considering other treatments.  We met Dr. Tate, and a repeat resection was scheduled for 11/13/17.  In the next week, we did pre-op testing, including a functional MRI (which is about 1.5 hours) and Neurocognitive testing (also 1.5 hours).

After the surgery, Dr. Tate told my family that it looked like a recurrent GBM, but not quite as expected. Post-op day 1, my neurooncologist stopped by to say she still thought it could be treatment effect, about “50 / 50.” What? Then Dr. Tate came back around that evening (remind your kids not to do neurosurgery since I saw him around 7:45 PM).  He still felt it was most likely recurrence. The reason this it matters is prognosis and treatment options.  Once you have recurrence, new and different therapies are needed, but it also starts a different clock.

A week after surgery, my phone rang at 10:30 AM on 11/20/17: Priya Kumthekar.

“Hello Priya.”

“I think I have some good news for you.”

“Uhm.”

“They did not see any cancer cells in your resection, but I am making sure Dr. Tate sent them all.  We are going to see if we can get you back in our clinical trial.”

So we sat on pins and needles for a few days, waiting for another round of contradictory opinions.  And then Dr. Kumthekar just emailed us confirmation on the Friday after Thanksgiving that we could be back in the trial officially.

When I told the kids, Connor said Northwestern should “stop messing with my dad’s brain.”  That is true in more ways than one.

Well, Happy Thanksgiving everyone!

Figure: Upper left, having my last pre-surgery meal at the Green Zebra on Sunday night, 11/12/17.  Upper right, walking with Staci a few hours before surgery in Chicago.  Middle right, my kids showing their support for Team Craig.  Bottom left, Mrs. Boersma’s class shows Team Craig support at school for Ella (in the middle).  Bottom right, I need to be careful what I ask for on this blog (autographed hat and picture of Ritzenhein via Mike Vredenburg).

 

Pre-op Testing

On 11/9/17, I did a long day of pre-operative testing. Functional MRI followed by neurocognitive testing. This was followed by an appointment with an anesthesiologist to see if I was healthy enough to have my only problem removed. Spoiler alert: I was.

I showed up for my MRI with a sense of dread. I knew it was going to be a long morning in the magnet followed by a long neurocognitive evaluation. I sat (well, laid down in tight quarters) while a MRI tech gave me instructions on what to think about. That’s difficult. Then, we did a series of object recognition testing where I would press a button each time I saw the same object. On the first go around, I couldn’t remember the first object I saw, so I just tried to remain consistent. I convinced myself it was the one with the backwards C and dash. The next day, I swam with Jeff Flermoen who tried to convince me that this was a real science. Got it, but I need to discuss with a non-radiologoist sometime soon.

After a short break, I saw Dr. Mackie, the neuropsychologist that works with Dr. Tate started with simple questions: name, date of birth, etc. And then the questions got a little harder.

“I am going to say some words, please repeat them:

“Carpet, hollywood, camouflage, green…” (okay, I am just making these up, now, but they went on for like 10 words). I couldn’t believe how many she listed, so I gave my best shot and got about 3 – 5. Not bad. And then she repeated them. And I got a few more. And then she repeated them, and I just smiled. That’s all I got for you.

And then she just kept adding numbers to a point where I would just try to remember the last couple. And then I thought, who are you to be testing me? Let’s flip this game around. Repeat after me, Dr. Mackie!  But that’s not how it works…

Figure:  Upper Left, serial compression devices keeping me in bed.  Middle top, art line and IV = more restraints.  Top right, finally walking post op day 1 in the ICU.  Bottom left, family support crew.  I was ready for the neurosurgical rounding team on POD #2 after shaving, eating breakfast, and waiting for them while sipping my Starbucks by the window.  Bottom right, my recovery at home with Stranger Things season 2 on the treadmill.

 

11/13/17 Surgery Day

The surgery itself was not that dramatic. No first person narratives this time. I was pushed back to the afternoon case. I met a large number of staff that were all great. There were 3 anesthesiologists including the attending, a fellow in neuroanesthesia (Arun), and a senior resident (Millie). All I could think of was that it must have been crowded back there between anesthesiology and neurosurgery. I also met a neurosurgical resident, Bill, but but I told him I may call him Billy after the surgery due to confusion with the senior resident anesthesiologist Millie. Not a lot of highly respected neurosurgeons named Billy in the midwest, I presume. They wheeled me back to the OR. We went down the hall, made a few turns, and into the operating theater. I took a lay of the land, they started giving me some propofol (I presume) and I left the conscious world for a few hours.

I remember waving to my parents on the way to the ICU and being strapped to the bed with bilateral serial compression devices, blood pressure cuff, art line, two peripheral IVs and a foley. I couldn’t even roll over. I was a bad ICU patient at about 3 AM, deciding it was time to swing my legs over the bed. With all those attachments, this was no small feat. The nurses came in, gave Staci a bad look, and set a bed alarm. I was to be a good patient for the rest of the night.

The next night on the floor, I was awakened at 3AM by the floor nurse. I had some pain meds, sleep deprived, but less contained to my bed. The nurse asked my name.

“Heather Slay” I said after some deliberation. The nurse looked confused. “Heather Slay” I repeated. The nurse walked out, checked the room number, and then came back in. Staci told me she just asked for my name. “Oh, Craig Alguire.” That was my 5 seconds of delirium. Fortunately, with all the sexual harassment scandals across the politics and entertainment, Heather Slay is a fellow soccer parent and GI Surgeon in Grand Rapids. I officially deny anything beyond that.

Figure:  Left, Staci and I at thanksgiving hosted by the Springers.  Middle left, Queen Elizabeth and her living furs.  Right, Connor and Staci showing off their basketball skills at a 24 Hour Buccaneer fundraiser.

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I am recovering well, trying not to do anything “too crazy.” That was the take-home point after surgery, or at least that’s how understood my discharge paperwork.

I am headed back to Northwestern this week for post-op appointments and follow-up testing. I am hopeful to get back on pembrolizumab soon and back to work sometime next week.

Figure: Left, Queen Elizabeth putting the star on the tree (Mia put it up at first, then we had to repeat it again for Ella since she felt left out).  Middle left and right: decorating the tree.

 

 

Figure: Left, Staci and me, hanging out at the Greenwell when all of our kids were at the Ackerman’s house.  Right, drinks and a dessert at the Grove.  After a beer at the Greenwell and my first ‘wine pairing’ at the Grove, I was more than a little tipsy.  I did not even touch my last two glasses of wine, but we certainly were celebrating a small victory in glioblastoma multiforme!