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November 11
St. Anne, Kimball
What a genuine priest! Father James Statz adeptly connected today’s feast day of Saint Martin of Tours, Bishop, to the news that our bishop is of the age, 75, where he needs to submit papers for a replacement. All the cardinals in red, the symbolic smoke and overall replacing-a-Pope-pomp came to mind, but I had never paid attention to how bishops are selected. Father James asked us to pray for the next bishop as so much of the sex abuse scandal needs to be addressed. I had not heard a priest speak with such conviction about this scourge. He connected it with the gospel: “It would be better for him if a millstone were put around his neck and he be thrown into the sea than for him to cause one of these little ones to sin” Luke 17:1-6. In his description of the fully operational millstone he saw in the Holy Land, he created a stark visual of a very heavy donut-shaped stone dragging someone to the bottom of the ocean. He asked us to pray for those who have left the church because of the sex abuse. His homily made me both uncomfortable and appreciative in its honesty, like any onerous subject.
A long-time friend, Sarah, joined me for Mass and we talked afterward for a long time about our faith. As a general rule, I avoided discussing those hot topics of religion or politics with anyone so it was refreshing to have a heart-to-heart with a friend, no judgement regardless of beliefs. Sarah would always be a kindred spirit; there is something about sharing Mass that binds souls together.
The Written Word
Listening to the difficult topic reminded me of how I had struggled with my cancer diagnoses and the written word. Reading the words “spiculated mass, longer than wide” and “highly suspicious for malignancy” on my first biopsy pathology report took my breath away, something about seeing the diagnosis in print was more solidifying than hearing them aloud. “Malignancy” I knew as the antonym of benign, but “spiculated” was a new word and the image of a glob of cells with tentacles ready to infiltrate never left my mind.
In my experience, I quickly determined that two words that are difficult to say, hear, and write are “my oncologist.” Prior to meeting Dr. D, I completed a family history with Mom’s help. Cancer was not prevalent in either side of the family, just malevolently sniffing around the edges. Thereafter, updating my history for dental or annual physical was usually a lot of checks in the no column and one check for cancer. My blood work usually fell in the normal ranges and I did not need corrective eyeglasses until I was 51. Due to a concerted effort, even my earlobes are particularly youthful and not stretched out as I was mindful never to wear heavy earrings and I protected my hearing by never listening to loud music through earbuds or old school headphones. From 1989-1998 I was a lacto-ovo-vegetarian. From 2016 forward Scott and I intermittently fasted, eating only between 11am and 6pm. To make up for the ill-advised pursuit of a golden tan for many summers during my youth, I slathered on sunscreen so my skin would be less wrinkly and freckled and my knees would not be lost in saggy skin. I tried to keep my weight in a normal range. I had taken pretty good care of myself, but now had volumes of medical records, thousands of powerful written words describing me.
Other words elicited strong reactions. In a text or email or embossed on a greeting card and sent with the best intentions, the message “God doesn’t give you anything you cannot handle,” actually rankled me. I just did not picture God doling out pain and suffering he had carefully measured for the recipient. My God was a loving God, not punitive. Cancer was a physical malady, not some punishment or moral awakening. I never regarded anyone who made the comment poorly but rather tried to embrace that they felt I was well equipped to handle the Big C.
“Strength and courage” and “brave and warrior” were other words written that I appreciated, but did not fully embrace. Regardless of a bevy of words that come to mind, it was hard for me to explain that cancer was an affliction I had and the treatments were done to me, something external not an intrinsic conflict. The best I could do is make an analogy to the internet before social media, when most people were passive users of the internet, not adding or contributing in any way, until social media exploded and users became active posting comments and photos. I felt pre-social media about cancer. Even though I was active in my attitude and nutrition and sleep and exercise, the attack on the malignancies themselves was external.
At stage IV, a cure was no longer an option. The word survivor was a misnomer. Much of pinkified breast cancer and even the American Cancer Society referred to me as a survivor, but that was patently inaccurate now. It was “treatable” now and I had to be thankful for even that. My stage IV CaringBridge title was “At least there is not a stage V…” but at stage IV now I worry about the day we decide to give up the fight. Twenty months after stage IV diagnosis, I was diagnosed with four new brain tumors in new locations from the first four, like they are staking out territory. Apparently, the “Location, location, location” mantra of real estate also applies to brain tumors. My first nine had been in locations that were treatable, every brain MRI with longer notes comparing the previously treated tumors in words accompanied by tiny measurements that determined if I would have a few months of stable health or need more radiation. Short clinical phrases that determined my future.
Since my original diagnosis the term NED (no evidence of disease) and the phrase “dancing with NED” meant cancer-free, but the term changed to NEAD (no evidence of active disease). Once I found stage IV referred to as a chronic condition, I embraced it; chronic was much more digestible to me than terminal. The power of the written word. NED is ballroom dancing, while NEAD is more like an awkward jig with my arms up on guard for any active cancer detection.
Metastatic. I struggled to write the word metastatic. Often I misspelled it, which forced me to focus on it even more. Other words packed a punch too. Progression sounds like a positive thing except when it means the cancer has marched on. Double negatives snarl understanding like having positive HER2 status is negative while having negative nodes is positive. The mere mention of Dexamethasone made me anxious and Ondansedtron, an anti-nausea med, caused my stomach to turn over. The end of life terms “hospice” and “palliative” gave me pause but not dread as my experiences with my parents’ deaths had been peaceful and faith-affirming. I hoped to face death as they did, but I sure wasn’t ready to get to the time to face death.
Other cancer-world phrases set me on edge. “New normal” was one of the most abhorrent. Oh, it’s new, but what is normal? Nothing was normal about living with stage IV cancer so I would not embrace that term. I shunned that phrase along with “cancer journey.” Blech. Who would ever take that trip? Imagine the ad campaign: hair loss, constipation and/or diarrhea, nausea, vomiting, etc. To me, a journey is a path you choose so it did not pair well with cancer for me. For me cancer was more of a trudge, dragging my feet unwillingly, feeling crabby and loaded with an uncomfortable backpack and heavy boots.
One sentence. Twenty-five words. Reading words written by others could be a challenge, but sometimes writing them myself was a real test. Writing my medical leave request from ROCORI mid-January 2019 took a ridiculous amount of time. I’d type, erase, type, erase as I weighed my options. Maybe… I wasn’t suffering horribly, I had some great days. But the unpredictability. Maybe…no. Except for the brain tumor barf-a-rama, I did not have symptoms from the cancer, but I also had no idea when tumors might appear and the brain tumors obviously could have detrimental effects: loss of sight, hearing, balance, etc. I could not guess how long I would remain stable or if treatments for any progression would be tolerable or require immediate leave. I envisioned starting class, then needing to write endless sub notes for a revolving cast of substitutes. None of it good for me or the students. No. I could not sign on to a year of teaching, not even part time with the unpredictability. And I hated it. I hated the loss of control. Finally, I typed the twenty-five words in one sentence and sent them along with my doctor’s note.