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November 28

Our Lady Queen of Peace Chapel, College of St. Scholastica, Duluth

“If we can’t take time out of our lives, are we too busy? What else are we missing?” Father stated he felt Thanksgiving was important as an intentional time to slow down and give thanks, “to see the gifts of God’s blessings.” He defined the lack of gratitude as “spiritual leprosy.” He quoted Abe Lincoln’s Proclamation of Thanksgiving, which had many elements to compare from the Civil War to our current political strife.

The monastery chapel had other similarities to Sacred Heart Chapel at the College of St. Benedict beyond serving as a convent church: warm holy water and no kneelers! Music was also very important with all the sisters’ voices joined in unison. The simple, clean interior echoed the beauty of the  surrounding snow-covered gardens. Scott and I recognized two sisters who had been teachers while we attended CSS, but most were unfamiliar, yet friendly faces.

Attitude

At this point, I was four weeks into my Church Crawl and realized each reflection I wrote was longer and easier to write. Though I was grateful for the life I had, I wanted healing in the worst way. It took me the full month to realize I had been healed spiritually. The deep-seated peace I had would make the future trials of tumor progression and PET scans and MRI reports of new areas of concern less frightening. I had added spiritual chemo to my armamentarium.

Is it possible to change your own personality? If you are a pessimist, can you become an optimist? I was not sure so I was grateful for my optimism and used humor, even dark humor, to see the bright side or silver lining, not without some frustration or anger or fear or doubt. Is my faith fickle if I am afraid? If you follow without question, perhaps it is a blind faith not a more true faith. My faith had been tested and was stronger for it. I tried to focus on the positive: my soul being stage 0 even if my body was stage IV.

Does being optimistic help overall survival? Despite wishfully scouring medical resources with every librarian talent I possessed, I had not found any evidence, but I know the doctors, nurses, and all medical staff appreciate a positive patient. Working in oncology would not be very rewarding if every patient challenged doctors’ orders or had the slash, burn, and poison synonyms for surgery, radiation and chemotherapy. I always thought it was important to stay positive for every chemo treatment. Calling it poison or toxic might be accurate, but why focus on the negative? It was carefully created, time-tested, top-notch medicine and I was damn lucky to get it.

My Dad wrote a poem about me and our dog du jour, Sheppy, when I was around ten:  “Sometimes you’re sad, sometimes you’re peppy, How come your eyes look like Sheppy?” I recalled multiple times he praised my positive disposition even before I knew what a disposition was.  Maybe it was a gift outright, or perhaps I needed this positive disposition to deal with the last chapter of my life.  A study by Kayleigh Hodges and Sue Winstanley boosted my spirits:

The psychological impact of a cancer diagnosis can extend through treatment, well into cancer survivorship and can be influenced by a range of psychosocial resources. At different stages in this trajectory, optimism is known to affect well-being directly. This study focusing upon the potential to flourish after cancer, investigates the relationship between optimism and positive affect during cancer survivorship together with four possible mediators: social support, fighting spirit, internal health locus of control and cancer worry, all of which have been shown to be important predictors of well-being in cancer patients.

Though it did not show any benefit in overall survival, for me being optimistic made the time I had better and I considered that a win. And even that thought process is likely a product of being optimistic.

“What is worse than getting chemo?  Not getting chemo.” It’s a pithy statement I coined, but my biggest fear was not the upcoming side effects, but anything that might keep me off my infusion schedule or the most dreaded: the day when no more treatment options were available. It helped having medical and radiation oncologists that we trusted, a team that kept us involved in decision-making. I could honestly say I never dreaded going in for an infusion, though a few weeks into daily dexamethasone was hard to swallow.  I knew the pills were reducing the swelling in my brain, but the side effects were piling up.

Attitude is key. I remember a description of surgery as a “planned accident.” Unlike an accident, it also comes with time to prepare for the injured state. I don’t know that it makes it any less painful and in some ways, the time worrying about surgery adds to the total trauma. But the element of surprise that accompanied all my diagnosis can’t be dismissed either. Chemotherapy could be described as “planned illness.” The long list of side effects could make the strongest stomach turn over. Thankfully, I was able to use distraction to lessen side effects with my first round.

For four cycles in spring 2009, I had chemo for breakfast in Paynesville. Scott met me at 8 am and the pharmacist put my meds together as soon as he arrived. The oncology nurses took great care of us, each comfortably ensconced in the burgundy leather recliners. I brought crosswords and games to fill the time and had the nurses play the Asimov quizzes I clipped out of the Star Tribune.

After administering the pretreats, the nurse would return heavily masked and gowned from head to toe while infusing the AC combo. All the gear was daunting. All garbed up, the nurse would stay and chat as she slowly and carefully injected the medicine in case I had a reaction. Adriamycin aka Doxorubicin, aka Red Devil, was a highly toxic, red-hued chemo drug. It stops damaged cancer cells from continuing to grow, while cyclophosphamide stops cancer cells from reproducing, making them a formidable pair. Unfortunately, the Red Devil would often be toxic to the heart, causing permanent damage.  Before AC treatment began, I had a MUGA, multiple gated acquisition, scan of my heart to establish a baseline.

The attention was both nice and frightening. After AC, I always visited the bathroom to evaluate exactly how red my urine could get then flushed twice with the toilet covered by Chux (those disposable blue rectangular pads put under patients in hospital beds) to minimize exposing anyone else to the chemo even after it had exited my body.  Pee once, flush twice. That always gave me pause–just how powerful the drugs were was both oddly frightening and inspiring. After the infusion, Scott returned to the rehab department and I drove  to work in Cold Spring. I remember pausing a few times to check if I felt different, but everything seemed fine. I made it through the day and gathered up my knowledge bowl team after school  to bus to a meet in Sauk Rapids. A group of parents rode with us just this time in case I would need any help. The meet went as planned and I kept waiting for any side effects to kick in. The busy night likely kept me from feeling ill and since that had gone well, I believed my positive mental attitude helped me from looking for symptoms. I refused to be nauseated and resoundingly denied feeling fatigued. Mind over matter.

Before I had breast cancer, I equated chemotherapy with its grueling list of side effects.  I had to understand how it worked to appreciate it, to go from viewing it as poison to an amazing, precious medicine.  Initially, chemotherapy was studied on mice implanted with leukemia cells. The studies found that “chemotherapy killed a fixed percentage of cells at any given instance no matter what the total number of cancer cells was.” The percentage was unique to each drug. “If you started off with 100,000 cells with a drug that killed 99 percent in a single round, then every round would kill cells in a fractional manner, resulting in fewer and fewer cells after every round of chemotherapy; 100,000…1,000, 10..and so forth until the number finally fell to zero after four rounds.” From mice studies, years of clinical trials were needed to determine the proper doses and time between in cycles that would yield the best result without side effects forcing patients to stop treatments. Huge studies were needed to test combinations of drugs with different arms getting different cocktails once it was apparent that chemo combos were more effective than single agents. Being armed with the knowledge of how chemo worked helped me trudge through thanking those thousands of people who participated in the drug trials.

After my last AC treatment, I fetched cheeseburgers and waffle fries and ate them on the media center counter with Sheila and Anita who helped keep the place afloat. They had been my confidants with whom I shared grisly side effects like when, as predicted, my hair started to fall out two weeks after the first dose of chemo. I pulled a few strands and nearly all came out in my hand with the most gentle tug. Those two knew we could laugh when I explained that the loss of hair on my head was also confirmed by hair elsewhere on my body when I went to the bathroom.

But not all days were met with a bright and sunny attitude. Shortly after the stage IV diagnosis, I journaled in CaringBridge:

My spirits are strong (oh I had a hissy fit last week, but then went to Adoration and re-centered my sou –I  surely felt Mom’s presence in that little chapel.) Thanks for all the love and support and prayers.  Once again I am overwhelmed. I have a second degree relic of  the patron saint of brain afflictions, Saint Dymphna, who was martyred in Ireland, which Mom got from her brother Brother Robert when he was stationed in the Vatican. I figure since she is lesser-known, she hears my prayers more than all those POPULAR saints.

Ultimately, I wanted to be my tumors’ tumor: indefatigably doing whatever I could physically, mentally and spiritually to trounce the wayward cells. With every positive attitude adjustment, I imagined those cells falling into a pit of despair.