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November 8

St. John the Baptist, Meire Grove

When my Mom’s older brother, Mike, passed away, his funeral was held at St. John the Baptist. The church featured delicate and decadent gold leaf paint from top to bottom surrounding the altar. Fifty-two lambs line the outline of the altar and ceiling. I was no expert at stained glass windows, but St. John’s had some of the most intricate pieces. The story of Jesus’ life was chronicled from communion rail to communion rail, the only church I visited that still had theirs in place.

Father Enneking gave a wonderful homily and eulogy for Uncle Mike. Mike would have nodded in approval, probably two slow nods. In life, Mike showed his approval often with a few of his characteristic deep nods and murmured assent. He was a man of few words as I knew him. My childhood memories are of my bachelor uncle at Ludwig family gatherings with a cigar in the corner of his mouth, a long-neck beer in one hand and a handful of cards in the other. The family turnout for his funeral was impressive, with cars lining the few streets of Meire Grove and increasing the population exponentially. His step children did an amazing job of coordinating the funeral and their love for him was apparent.

After the funeral, I believe Mike would have nodded in appreciation during the meal when all the cousins reminisced about him and caught up with each other.  Some of the stories were repeats, others were originals, and all were followed by laughter. Just when I thought I knew my kid brother, Joe, a cousin would tell some eye-raising tale and Joe would counter with even more amazing exploits.  Since Scott had to leave directly after Mass to return to work, Joe offered me a ride home. We followed most of the old school bus route, making a game of listing the kids who lived in each house. Throughout the day, old memories made way for the new stories.

Genetics

After finding out I had breast cancer, the majority of people commented, “Oh, you have the family gene.”  While it felt like 80% of people I encountered assumed it was genetic, my genetic counselor reported the odds that it was genetic closer to 8%. My history included no first line relatives-no one in my immediate family-and no BRCA  I or II, the BReast CAncer gene, found in three second-degree relatives-grandparents, aunts, nieces, cousins-with breast cancer. With one of twenty-three female first  cousins, signs pointed to other sources than genetics given the one-in-eight lifetime risk.  When three of six female English teachers were dealing with a  breast cancer diagnosis at the same time, the 12% lifetime risk was blown away by our 50% ratio. Concerned about a cluster, a few coworkers mentioned their worries so I explained that if we used the numbers of breast cancer cases in the whole school, we were well below the average, which made them feel better until they realized more cases would likely occur.  The longer I had breast cancer, the less I liked the numbers.

A few months after my first diagnosis in 2008, I had a referral to genetics because at age 38  I was considered early onset, which was a hallmark of BRCA.  Since then, four women in my life were diagnosed before they were 30, mere babies in the breast cancer world.  My oncologist, Dr. B, was relocating to practice in a warmer climate and it made me nervous; he had been so caring and thorough that I was afraid of the void to follow. I wanted him to see the genetics results and give me his advice if the results were positive for BRCA.

In January 2009 I met with the genetics counselor, a woman I’ll call Puce, the grayish purple color of fleas.  By then I had clocked some time waiting in waiting rooms, but in genetics I was taken aback. All the young couples and many pregnant women were clearly waiting for genetic results for their babies and a heavy sense of foreboding pervaded that crowded room.

Conversely, the patient room was bright and spacious. Puce entered with a smile and a huge binder. She explained that they liked to have their patients armed with some background knowledge of genetics, but most of it would likely be beyond my comprehension and so most patients had family members with them. I apologized that Scott had not been able to get away and honestly I understood most of what she explained. She reviewed my family history, asked a few questions and became excited when my head circumference was a bit large. “Cowdens!  It could be Li Fraumeni or Cowden syndrome with your family history.”  She explained that colon cancer in a family member could have some connection to Cowdens. “Cowden’s is marked by diminished intellectual capacity,” she added. Um, what?!  Since I clearly understood what that meant, I was confident that I did not have it. What I did have was a wounded ego.

Immediately after meeting with genetics, I had a blood sample drawn. At that time Myriad ran the only BRCA I/II testing in the US and it was expensive–over $5000 dollars. Thankfully mine was covered by insurance as I was under 40. My tiny bits of tumor took the trip to Myriad in Utah while other cells hit the road to California for Oncotype testing.  The genetics results would be ready in one week.

After ten weeks, I called. I was mildly anxious to get my results but was patient since I knew the department was very busy.  Instead of calling, I would think of the expectant parents and how their babies’ genetic testing trumped mine. If I was BRCA positive, I would eventually want a hysterectomy to reduce risk of ovarian cancer that often paired with breast cancer but the urgency was far less than during pregnancy.  The receptionist verified that the results were in and had been in for a few weeks, but the genetics department was so understaffed I’d need to wait five more weeks for an appointment. I had not been impressed with Puce’s cold demeanor and was loath to see her again and my test results being held hostage further ground my gears. The results were not even entered in the system so my oncologist could relay them, but in a locked drawer in the office, the insurance claim already paid.

At my followup appointment a few weeks later, the oncologist was puzzled by the lag and recommended I call again and ask to  have the results sent to him. When I got home, I called and made the request to have the results passed along to oncology.  Stony silence. I asked to speak to a supervisor. A heavy hand covered the phone and I heard murmuring, then the receptionist flatly said, “I’ll transfer you.”  During the ensuing long pause I scrubbed the counters in the kitchen then started alphabetizing the canned soup in the lazy susan. Eventually a soothing voice answered, “How may I help you?” I never caught her name, but felt like Agnes was fitting. I pictured her in a dark office deep in the hospital. She took my information and agreed that this was wrong and would be corrected. She said she would return my call in precisely twenty minutes then hung up.

Exactly twenty minutes later Agnes explained that the genetics department was opposed to having results relayed over the phone. I  kept my calm and explained that I had already been informed twice that I had cancer over the phone and the genetic results were not going to ruin my life more than the cancer I was facing.  Carefully I added, “The waiting is more trouble than the information plus the way I was treated was just wrong.” I also offered to write letters asking hospital administration to add staff to the genetics department as they were spread thin.

“Hmmm,” she murmured and asked me to hold. I moved on to alphabetizing the spice rack while I listened to the tinny music.  Eventually Agnes returned to the line with a compromise: I would need to have a brief psychological evaluation and if I passed would then hear my results but must promise to come in for a followup appointment in six weeks. Now I was full-on offended. I had been civil and calm. Persistent, yes, but nothing warranting a psych evalulation. With all the humility I could muster, I agreed. The psych eval was a few quick questions by someone who clearly did not think this was a situation that needed evaluation and then was transferred to my geneticist. The music was interrupted by Puce who made it very clear that this was an abomination, that all results should be delivered in person. I didn’t respond to her admonishment but waited for the results…. “Negative for BRCA I or II.” In all my dealings with medical staff, this was a rare negative experience.

At the end of April, I did follow up in person in a brief appointment where Puce reiterated the results and asked me to keep the office updated with new cancers in the family, but cautioned that with only 8% of breast cancer being genetic, it was likely we would never know what caused my cancer.

It was a relief for me for my family to not be part of any known genetic syndrome, but also unsettling to not have a cause. Before I got my BRCA I/II results, I asked all my female first cousins if they wanted to know if I carried the gene.  Every single one wanted to know. “I love my girls,” one cousin said as she shifted her ample set, “I can’t imagine life without them.” I heard lots of sighs of relief when I told them my BRCA results were negative.

Without  a known genetic culprit, I still wanted to know why.  The Gene, Mack’s molecular biology textbook, helped me understand the four ways normal cells could acquire cancer-causing mutations: hereditary, environmental, spontaneous error during cell division, or via viruses. Additionally, some mutations were a combination of the four.  Regardless of the cause, all followed the same pathological process: “the inappropriate activation or inactivation or genetic pathways that controlled growth, causing the malignant, dysregulated cellular division that was characteristic of cancer.”  To summarize, Yuck. If there was something I did wrong, I could avoid it. If it was something I ate or drank, I’d give it up forever, but ultimately there was mostly the vast unknown. The unknown meant a lack of control and not being able to make changes to make my situation better was agonizing.

In 2016 after my recurrence, I returned for more genetic testing. The testing array was much larger as Myriad had lost their exclusive rights to BRCA testing. For years Myriad held the only rights to test for BRCA in the US and did not share their results with other labs or universities, stymying progress until a lawsuit took away their patents. The growth  in genetics was amazing as explained by my new geneticist, we’ll call her Magenta. She was young, energetic and spoke very rapidly and, like her predecessor, was animated at the possibility of finding a genetic result. It was eerie, their excitement at my predicament, but I suspected most cases were not matched and it might be a bit dull to have case after case unresolved. When I mentioned updating the family history with my Mom’s ovarian cancer and death from it, she asked if we could test Mom’s biopsy sample as well. Just a short consent form I signed as her daughter and another form promising payment made it surprisingly easy to get Mom’s tumor sample tested at the University of Minnesota. If that sample matched anything unusual in my profile, Magenta also suggested that we might test Uncle Mike’s colon cancer and gave me a form for him to complete.

Admittedly, I did not know Mike well and could not honestly recount a conversation I had with him. We were a big family: Mom in the middle of twelve brothers and sisters.  Since Mike married later in life and never had kids of his own, I typically only saw him at large gatherings like weddings and funerals, and not at the holidays we shared with families who lived nearby and had cousins close to our age.

A few months later, I saw Uncle Mike at our 35th annual Ludwig Reunion. Here’s where it got a little uncomfortable, even for me who was seldom shy or reticent to talk to anyone, since I had never had a conversation with Uncle Mike in my life and was now needing a very personal favor. I had typed out my request as I knew he was hard of hearing and asked my aunt to help me. During a break in the Solo card game, we swooped in. Mike read the note and nodded, smiled at me, and without pause signed the form. I still had never truly spoken to him. Ultimately, we did not need to test his sample as there was no match with Mom. It would be one of the most awkward conversations I never had.