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November 22

St. Boniface, Cold Spring

St. Boniface could hold 1000 people, but its layout made it feel intimate. Father Cletus had an apt analogy between the physical Church and individual selves as “temples of the Holy Spirit.” He emphasized the need to focus on grace as “lifelong participants in the church of God.”  Father Cletus’ homily related to the gospel reading of the mass, Luke 9:45-48, a short passage that spoke of Jesus entering the

temple to drive out those who were selling things.

I was excited to attend Mass for the Mass itself, but also to visit after with a longtime friend, Judy, a truly remarkable soul with deep seated faith. Unwavering in her beliefs regardless of circumstances, in times of joy and sorrow, steadfast in her love of Jesus, Judy truly lived the message of serving the Lord. I believed I could go to Mass with Judy on any day and find an example of her faith connected to the gospel reading. For years I had basked in her presence working together in the high school media center.  She helped students as her job, but also reached out to students in need, offering guidance and support as a lifelong participant in the church of God. Caring for others came as natural to her as breathing.

The Threshold of Hope

To protect myself emotionally before getting pathology or MRI and PET scan results I needed to create a flexible threshold of hope. I would hope for the best, but drop the threshold to right above “there is no treatment option,” which would be, in my estimation, the worst thing to hear. Several scans had mixed results so having a lower expectation allowed me to take in and process the doctor’s input without being emotionally distraught. Except that one time.

At the first appointment on Monday, March 6, 2017, Scott and I met with Dr. E, following my axillary node dissection on the previous Thursday. The pathology report would tell us if the nine months of TCHP had worked. I started chemo in October and the December PET scan showed very little active cancer so the threshold of hope was high.  Although PET scans could detect small malignancies, the real measure was pathology, cells examined under microscope by a pathologist to see if any cancer remained. I was hoping for the best result: pathological complete response. Back to Stage 0. The better the response, the better the prognosis. As the appointment proceeded, Dr. E looked closely at his screen, “Your patho is back…” and read the pathologist’s note that had just been posted and stated the cancer still persisted in four to six lymph nodes of the twelve total removed. The invading cancer had obliterated the structure of the lymph nodes so it was not possible to tell exactly how many nodes were affected. Because we had been told it would take seven to ten days for the results to come back and it had only been four,I was not prepared to hear any results, and especially not that I had a partial response. I cried, wept, sobbed, and bawled. You name the crying verb, I did it.  Normally I was not altogether stoic, but I could usually keep my emotions in check; however, this time I was not prepared. I had never been so unhinged. Poor Scott did all he could. Dr. E paged the nurse out for a box of kleenexes when I emptied the one in the room. While Scott tried to comfort me and I tried to compose myself, Dr E set up the plan for radiation and continued infusions of Herceptin and Perjeta through November to get a year of treatment.

We returned to the large waiting room to be called for infusion and I was more calm when the nursing assistant called to bring us back.  Obviously forewarned that I was a hot mess, the infusion nurse was especially kind.. The chaplain paid us a visit. The care coordinator, whom I had spoken to over the phone but never met in person, dropped by. Every act of kindness seemed to make me cry harder, as if the situation was so bad I needed all the extra support. I was crying because I was crying.

Eventually I stopped, but my face bore the effects. Even if I shed a few tears, my nose would turn red, my cheeks would get splotchy and only time could lessen the troll-like complexion. From that day forward, I would always have hope, but would temper it with the lowest threshold.

In his podcast,“Is it Ever Okay to Give up?” Father Mike Schmitz defines hope as “trust in another extended into the future.” I had often pondered how different I would feel if I did not have my faith, if I had no hope of a hereafter. It made me recoil. Being hopeless made me feel helpless. The physical and emotional aspects of cancer were intense. Corrie ten Boom, a Dutch woman who certainly understood hope having hid many Jews and helped them escape from the Nazis said it best in The Hiding Place: “Never be afraid to trust an unknown future to a known God.” My faith had grown so much that it would be akin to missing a limb without the spiritual support to lean on. And my faith grew as my cancer progressed, as the MRI and PET scan reports grew longer and the implications more dire, I could turn to the Lord and pray. I could give all my worries up and find something to be grateful about in my situation. I considered it a miracle.

As my stages progressed and prognosis worsened, I became a hope seeker with a bevy of questions. Could hope make a physical difference? Would being hopeful increase the length of survival? The Anatomy of Hope: How People Prevail in the Face of Illness by Harvard and University of California Los Angeles trained oncologist and hematologist Groopman added depth to my perception of hope. His book switched between stories of patients and research. In a chapter called “Deconstructing Hope,” Jerome Groopman writes of a colleague’s definition of hope:

I understand hope as an emotion made up of two parts: a cognitive part and an affective part.  When we hope for something we employ, to some degree, our cognition, marhaling information and data relevant to a desired future event. If…you are suffering with a serious illness and you hope for improvement, even a cure, you have to generate a different vision of your condition in your mind.  That picture is painted in part by assimilating information about the disease and its potential treatments.

But hope also involves what I would call affective forecasting–that is, the comforting, energizing, elevating feeling that you experience when you project in your mind a positive future.  This requires the brain to generate a different affective or feeling, state than the one  you are currently in.

This definition of hope divided into the cognitive and affective part helped me reconcile the division I felt.  I absolutely wanted the be-all-end-all, a cure, but I realized I needed to hedge my hope to prevent myself from being crushed by any other outcome. This left me in a perpetually nebulous state vacillating between the cognitive and affective .Having this explanation of hope helped me accept that bouncing between them was normal. Hope changed then for me from a word that took my breath away when I heard it to a more clinical observation of my reaction. Ultimately, it helped me to have hope in hope.

Quirky poet Emily Dickinson expresses it well: “Hope is the thing with feathers. That perches in the soul. And sings the tune without the words. And never stops – at all.”