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November 26

St. Peter, St. Cloud

Today was a trip to St. Peter’s in St. Cloud with a good friend, Shawn, a strong firefighter with the biggest heart.  Following Mass we took a picture with Father Leroy Scheierl, all of us Paynesville natives so we covered who we knew in common. St. Peter’s is a long church with a lower ceiling than most, certainly not ornate, but strong in spirit with kids streaming through the hallways and running on the playground of the parochial school housed under the same roof.

Father Leroy’s homily spoke so clearly to me. He related the reading from Daniel 2:31-45 and gospel from Luke 21:5-11 to how fleeting life is but how difficult it is to let things go. Despite the transitory nature of life, we get attached to things. The reading was about a gold/bronze/iron idol that was destroyed, even the remaining dust blew away. Father Leroy clarified that Nebuchadnezzar (one of my favorite Biblical names to say aloud) dreams about kingdoms to follow. The kingdoms led up to the One Kingdom, which was disturbing to the Jews who were so proud of their Temple in Jerusalem. Biblical history shows the Temple was destroyed 30 years after the death and resurrection of Jesus as prophesied. As with other homilies in the end of Ordinary Time, Father Leroy highlighted hope and encouraged us to enjoy life. The tangent is that “we are in the world, but not of the world.” In our time we need to put our primary “focus on God and his mercy which will never pass.” This homily really resonated with the disconnect I had in both focusing on my life in the present while preparing for the inevitable end, in an awkward balance with one foot “in life and in death.”

Hovering

Hovering. The perfect word for my experience came to me after Father Leroy’s sermon. I could actually decide if I wanted to focus on my “in life” foot. Certainly some moments were “in death” foot like waiting for results when I try so hard not to perseverate on the worst outcome. I had always regarded this stage as emotional cancer. Anyone waiting on results from a biopsy or mammogram and has imagined the worst has suffered from emotional cancer. I had reassured several friends and family members who were recently diagnosed or waiting on results that for me having a treatment plan after long days and nights of little sleep brought great relief. It in no way diminished the unmitigated terror of having cancer, but it gave me focus. Stage IV meant regularly scheduled PET and MRI scans which meant more emotional cancer.  And oddly, the scans were both appreciated as necessary surveillance but despised for bringing reality to my fears as the cancer progressed. I tried various methods to cope and despite having dozens of scans, I was always dumbfounded at how time crawled between scans and getting results like some slowly melting Salvador Dali clock. I usually gave into the anxiety at night with a book rather than tossing and turning, but it took a pretty good book to keep my attention. One book, Michael Finkel’s The Stranger in the Woods: The Extraordinary Story of the Last True Hermit, held my attention enough that I read it overnight after my first high density brain MRI with results expected the next day.

Scott and I have often shared those interminably long minutes waiting in a doctor’s office to get test results. Those long minutes generally follow restless nights. I tried to schedule follow-up visits on the day after PET or MRI scans to limit the time and have also found a few sleep strategies.

After moving to MRI’s every five months from three, I had a normal amount of anxiety for the February 2020 scan, but when I took a call from the oncology radiation department the day before my results, my anxiety was maxed out when I heard, “Are you able to talk?” The radiologist’s report showed two new areas of concern. I took the information then forged ahead to the shop to tell Scott, whose Linda radar is finely tuned and knew something was wrong as soon as I said, “Dr H’s office called…”

The report was long, laden with length, width, height. It looked like 10 tumors-worth. I printed out the five previous MRI reports. Scott took notes as he read to determine how many new tumors we were dealing with since the previously treated four tumors are  areas included in every report. The reports were read by different radiologists so their interpretations differed slightly as well as some different terminology and phrasing. Thankfully Scott deciphered the information and made a list of tumors and a handy drawing of a brain to show where the new plague had been found. Four new and one previous possible larger by a millimeter. I slunked to the desk to see how big a millimeter was. So tiny!! 25 mm – 1 inch. All the new tumors were smaller than the first four and all in new locations.

Scott’s logic and calm demeanor balanced my emotions. I don’t believe I was over- emotional, but being told I had more brain tumors was a blow. Eight total now. It was getting crowded up there. Surgery was never an option as it destroys so much tissue and the tiny cells left behind serve as seeds. The areas removed also give new tumors a better spot to grow. I had a pretty good green thumb with plants and could also apparently grow some brain tumors too.

The follow-up visit was an offer to treat the tumor with TrueBeam, stereotactic radiation surgery (SRS). I was happy to accept and knew what to expect. The first batch was treated with CyberKnife at St. Joseph’s, the oldest hospital in Minnesota, in St. Paul in October 2018. We left home at 5am. I had every anti-nausea medication at hand, some  were literally just off hand -travel sickness wrist bands.

At HealthEast in Maplewood, we started the consultation worried but by the end had hope. Harvard-trained Dr. C, was optimistic, thorough and an admitted fan of video games. Plus she gave me a hug.  Dr. C. reinforced what Dr. H in St. Cloud had told us: the individual tumors could be treated by SRS as long as they were small enough and in treatable locations and numbered less than a dozen. Larger tumors or if more than 12 tumors needed whole brain radiation (WBR), usually ten days of treatment. Tumors that grow after WBR can be treated with SRS, but WBR was a once-in-a-lifetime treatment. The side effects listed were daunting as you might expect when dousing a brain in radiation. My biggest fear was memory loss followed by loss of function. I braced myself after every MRI to face WBR, my low hope threshold. When tumors were found I was initially disappointed then quickly relieved if it was treatable. If no new tumors were located, I pretty much danced jigs for a week celebrating the good news.

During the SRS procedure, I listened to classical music and prayed. I focused on belly breathing and swallowed only when the laser was relocating so I would be as still as possible. The laser repositioned itself, zapped, and moved again. It almost seemed like it was looking at me, quizzically like a huge white Pixar animated bird. I strained to hear the sounds of apoptosis, those filthy rotten mutant cells frying. I detected a faint electric smell and mentioned it. Some people smell it, most do not. Each session lasted about 45 minutes. My cheeks were checkered from the tight mask.

While I was in treatment, Joe, the bow-tied, natty-dressed dosemistrist explained all the physics to Scott. The team had carefully plotted each beam to hit the tumor, then move the laser so the same area of the brain is not impacted as much. Each tumor was like the center of a star except with radiation beams coming in from many angles instead of radiating out. Following treatment, I had a few days the next week after where I felt tired, but otherwise no side effects. I had four patches of hair fall out, but since I was facing chemotherapy that would cause it all to fall out, it was not a concern. Most importantly, it worked: all followup MRIs showed the tumors had shrunk. When the latest plague of tumors was detected, St. Cloud had their own radiation option ready and I was scheduled three weeks faster. Twenty-one days and nights I did not have to wait was an amazing relief.

Note: Sometimes the agony of waiting led to rampant stream of consciousness writing.  It’s a bit zippy in there. This is perseveration at its worst. I won’t even attempt to edit so this is the raw version:

And I’m nesting. I have brain surgery in two hours and 48 minutes. You can’t tell but I am typing at 70 wpm and my mind is racing at 490 wpm. The nesting is a good thing. I have a surge of energy and have cleaned the house. And the housecleaning implements too. I have washed the dustpan, people. It is that bad. I am not saying the house is spotless, but I have this urge to get everything in order, ship-shape. Even writing this note for I have a wee tiny fear of losing my memory. It’s on the list of things the brain controls along with scads of other functions I currently enjoy, but do not take for granted. I just typed that. I can type! The niggling fear makes me antsy. Yesterday I found a piece of paper in my address book with three cousins’ email addresses and two words:  mafia and leg hair. What the heck?  I don’t know what that means today and I don’t think emailing them is a great idea. I remember that the note was written in a church basement at my aunt’s funeral, but cannot recall the conversation around mafia and leg hair. I google the words in case it’s a cool band or a book. Nope. Do you know how few google searches are unique? Few. What if I do not remember the other notes I jotted that today I can clearly understand. I have this frame story half finished and the rest planned. I can’t finish if I can’t remember.

I fear I am losing you, dear reader. Now for sure since I called you dear reader and I hate when writers do that. Eww! It’s pretentious and cloying and since when did I become a Bronte sister? But this is my mind before tiny beams of radiation are aimed precisely at four new tiny lesions and the niggling fear makes me worried I might not have the capacity to add to this streaming hot fresh mess. If this is the last thing I write, how awful. Drivel. Sniveling, whining drivel. I want to be inspirational, not annoying. This paragraph will need a disclaimer. What if I need a disclaimer? Or a shooting license like Hammacher, a character with a head wound in All Quiet on the Western Front that we read in senior English class. His shooting license explained his odd behavior attributed to his brain injury. Ugh. I can actually taste the fear, warm and primordial. Peppermint gum to the rescue for that.  I feel too frazzled to pray and too frazzled not to.

End scene.

Once I got to the Coborn Cancer Center radiation department, the setup process was the same. The radiation therapists formed a mask from a plastic mesh like a giant yellow flyswatter, which was first heated up and then  cooled on my head front and back. The pieces are bolted together and the whole unit bolted to the table. Thankfully I was not claustrophobic. I joked with the rad tech that I pretended it was a specialized spa treatment. “What kind of spas do you visit?!” he bantered back. The upbeat demeanor of the whole radiation department helped calm me.  I did not doubt their skill or the seriousness of the situation, but the cheerful vibe was a balm.  It also helped that it was as painless as a dental x-ray, though much longer.

I felt fine after the 40 minute treatment and met Scott in the waiting room to visit the radiation oncologist. We scheduled an MRI to check the tumors in June. It was intensely complicated, painless, and over quickly  unlike many other medical procedures. I just had brain radiation and now I’m out and about like it was a haircut.

Memory and brain function are hard to self-monitor. It seemed that I was forgetting more, so I invariably turned to Scott to answer that question during medical exams. Just for myself, I had baselines for my memory: my average crossword puzzle speed, Sudoku speeds, and new piano music. Every time I played a new song, my heart sang.