Surgery: Round 2

It’s hard to know where to start – sometimes feels like it’s been years instead of four months since life took this crazy turn. There have been a lot of seemingly unnecessary obstacles we’ve had to overcome during the last few weeks. The first included a change-of-date for Luke’s surgery, after we bought airline tickets & wrapped our heads around the upcoming plan. Dentists don’t do this, I had no idea this could happen with a scheduled brain surgery. Nevertheless, surgery was moved up a few days to Dec. 2nd. Not the end of the world, but it was a moment that I felt stretched.

This schedule change also meant leaving a houseful of guests after a lovely Thanksgiving and flying on the Sunday following Thanksgiving – one of the busiest travel days of the year. This in turn resulted in 6 hours wait time at the airport (after a 5 hour drive) and was followed by a complete cancellation of our flight due to mechanical issues. Thus, we spent an unexpected night in Salt Lake City and left for the airport at 4:45 am the next day. After boarding and de-boarding our plane in combination with yet more delays, we finally made it out on an actual departing 8:30 am flight thanks to a kind steward, who made room first for Luke and then for Elsa and myself at the last minute. We arrived in San Francisco a mere 3 hours late for our scheduled pre-op appointments. Unnecessary stress on stress. However, the airlines did what they could and everyone at UCSF made it work as well.

Luke’s sister and family picked us up with snacks and smoothies, swooped Elsa and deposited us directly at UCSF for Luke’s initial pre-op MRI. After the MRI we grabbed a quick bite and then promptly met with Dr. Berger – one of the best brain surgeons on the West coast and the same surgeon Luke saw in July.   His 8th floor hill-top office affords incredible views of the Golden Gate Park, bridge, oceanfront and downtown San Francisco.

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Upon meeting with him we reviewed the November 3rd MRI and today’s version to compare notes and determine the the plan of action.  There was some discrepancy between the MRI images due to the different machines used, which made it appear that things might have improved in the month since the first image; however, there was no doubt in Dr. Berger’s mind that there was definitely tumor present and likely some “scar tissue”, both resulting in swelling and agitation. Whether he went in now or in a couple of months, it would have to be done. For a split second, Luke thought he might be temporarily off the hook. Since our oncologist was out of town, Dr. Berger called in another for a second opinion. In the end, it was determined that now was the time. This was a good call in my opinion, as we were here, prepared and ready to get it out for another fresh start. It was also decided that given his previous surgery, tumor location and Dr. Berger’s brain mapping (while Luke was awake) that he felt he could safely do this surgery with Luke asleep.

IMG_0932This meeting was followed by an MSI scan. Magnetic Source Imaging is “a new technique for measuring brain activity; it records the magnetic fields created by electrical activity in the brain.” This procedure involved a magnetic room – one of only 20 across the country. Two days a week are devoted to Dr. Berger’s patients, the rest are devoted to research, primarily in regards to epilepsy. Luke laid down with his cranium in an MRI-esque contraption and settled in with some earbuds. He was then locked in while the researcher and myself situated ourselves on the other side of the massive door. The researcher played a series of nouns, to which Luke was asked to reply with related verbs – car = drive, etc. On the researcher’s computer a series of seismographic-like lines swept the screen. They were mesmerizing, beautiful and impossible for me to imagine how they would be applied. Tests were varied every 5-10 minutes. The researcher would go in, check on Luke and explain the upcoming series, then come out, push play and compute the lines. In the end, this information would be further applied to mapping Luke’s brain for the upcoming surgery. It took a couple of hours and would entail them staying late in order to have the final map computed & prepared for tomorrow’s 7:30 am surgery.

Dr. Berger also approved Luke for use of a clinical trial drug called ALA. While it’s standard care in Europe, Dr. Berger is trying to gain approval in the US. Luke is one of 300 patients at UCSF that will have the opportunity for it’s use during this phase of the trial. The morning of surgery, Luke will swallow this sour liquid. After Dr. Berger removes everything visible, he’ll turn on a black light of sorts, any remaining tumor will glow. The only downside is that he’ll have to remain in the hospital for 72 hours in a low-light environment. Apparently this medicine is more commonly used topically for skin cancer to be sure they’ve removed everything, but people can burn more easily right after its use. After the last surgery, Luke was released a day and half later – as caregivers, we felt that might have been a little too soon, so we weren’t really worried about the additional care and it seemed like a small price to pay for the benefits it might reap during surgery.

After getting a blood draw and collecting the necessary medicine we finished everything up around 6:30 pm. A long day, but so grateful that we were able to squeeze it all in and for UCSF’s help in accommodating our delayed arrival. A quick dinner at home with the family was followed by an early night’s rest.

Unfortunately, the next morning found Elsa with a fever and cough. I was torn trying to get Luke to the hospital in time and trying to snuggle her back to necessary sleep. Luke’s sister ended up running Luke up to the hospital for the 6:00 am check-in and returning momentarily to chauffeur me after I successfully got Elsa Bird back down. Tough to leave, but I knew she was in good hands.

I caught up with Luke in admissions. Then we reminiscently headed down to the 4th floor OR where Luke was issued a draped “room” in the back with the aforementioned dimmed lights. He changed into his surgical gown and conducted a few interviews with the anesthesiologist and crew. Dr. Berger came by for a quick hello and any last minute questions. Soon enough he was wheeled out and again we experienced the dejavu of the kissing corner. One last love, a solid reassurance from the accompanying nurse and away he went through the solid double doors.

It was drizzling and with Elsa feeling blue, it seemed appropriate to return to the family. We kept each other company and rallied for a walk to Golden Gate park, loading the girls (3 & 4) into the double bob and the 1.5 year old onto his mama’s back.

The OR called hourly to check-in. All was going according to plan. Around the 4 hour mark I got the call to come back to the hospital and wait in the surgical waiting room for Dr. Berger’s next call. I was ushered up 30 minutes later. Dr. Berger met me briefly in the hall. He said that he felt everything had gone well, though he did go considerably deeper this time. He didn’t anticipate any problems for Luke’s recovery.

Within the hour I was reunited with Luke in the Neuro-ICU. He was nauseous, but otherwise doing so well. Last time pain management ranked as the main priority in the crucial hours of recovery, this time his main complaint was a dry mouth and a 24 hour restriction on liquids or food. He was sweet-talking the kind nurse and then repeatedly slipping in – “Water?” Her compromise was an ice chip/hour. He was devastated and persistent.

Luke’s sister, Anna spelled me after dinner since everyone is ousted between 7 & 8, am & pm for shift changes. We were all thankful to be successfully on the other side of this hurtle with Luke in good spirits, talking and readily able to walk on down this road we’ve turned down – life, with all it’s ups and downs.

This Post Has 3 Comments

  1. char O'Brien

    What a wonderful report of such strength and bravery you all have endured. God Bless you all ! I believe all will be well! The angels are watching over you! XOXOXO

    1. mel

      BTW Claire, Char was asking me yesterday if there was any news on Luke at pretty much the same instant you posted this. Lots of healing thoughts are in your direction. xoxo

  2. Janet Dempsey

    I just wanna be there to give you all the tightest hug…true courage and undying love is the story here. You’re doing it Luke…putting the beat-down on this thing. Praying with constant hope & love for your life xo

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