Note: The introduction gives a synopsis of the diagnoses and treatment in chronological order. Then each chapter is a self-contained vignette that does not follow my experience chronologically but just tells bits of the story as the Spirit moved me based on the readings or gospel for the day. They can be read in any order as they have a theme for the day.
Introduction
Once upon a time a gene gone rogue grew and grew like mad. What inspired the gene to grow without control was not clear, but it grew, and in time other genes broke from the normal course until a pack of cells formed from the genes glomed together to form a hideous spiculated mass. The surgeon deftly incised the tumor to start the fight. Chemotherapy repeatedly attacked mutant genes hiding anywhere in the body with each dose halving the enemy, then halving that half and finally halving the remnant half. The epic battle continued with radiation blasting any remaining traces. Alas, the tenacious mutant genes kept their unregulated growth until the body was overrun. The end.
Ultimately, I hoped for a narrative-like start of She’s Having a Baby. If you nodded, you watched this movie circa 1988 and envisioned its memorable opening, and if you didn’t nod, you are savvy enough to find it on YouTube. Suffice to say, cancer growth is not sexy. Its theme song might be “Nothing’s Gonna Stop Us Now” or some grating screamer song. I would also prefer a happy Hollywood ending, but cancer is no simple disease. It is rife with complications and so many unknowns all compounding the challenge to treat, let alone cure it.
“Gene by gene, a cell slouches toward cancer–acquiring one, two, four and then dozens of mutations that tip its physiology from controlled growth to dysregulated growth,” physician and author Siddhartha Mukherjee writes in The Gene: An Intimate History. Mack, my son, read the 592 page tome for his molecular biology class at the University of Minnesota Duluth (UMD). Since I was on medical leave with more time and vested interest, I read it too. Mukherjee possesses an incredible skill in explaining complicated medical and biological processes with fascinating examples. Understanding cancer helped me deal with cancer. The historical background made me appreciate how far oncology has come, but also what an impressive foe cancer is; “The difference between a normal cell and a cancer cell amounts to only a few tiny mutations among the cell’s one hundred thousand genes.” Tiny mutations that cause a whole body-full of trouble.
Without giving the plot away, cancer has always been present and slouching throughout history; as long as there have been genes, there has been cancer. It wasn’t until 1970’s that scientists determined to their disappointment that “cancer arose from normal cells that had acquired mutations in growth-controlling genes, ” Prior to this, much of the scientific community thought parasites or viruses caused cancer. Scientists hoped to find the virus or single simple cause of cancer, but the unregulated growth thwarted finding a cure: how to stop rogue genes and restore them to normal growth. Quite simply, without knowing precisely why cancer starts growing, the goal of curing it is a vexing challenge.
Cancer grows unpredictably. Malignancies may go dormant, but then start actively growing again. Cancer may also spread, metastasizing throughout the body. Detecting metastatic cancer spread adds another hurdle since scans and imaging may not detect the micromets until they are well established. Exasperatingly, the mutations themselves may change over time so drugs previously effective no longer work; when the mutations mutated, the target changed.
Additionally, it’s possible to have different subtypes of cancer. The pathology from the biopsy identified the first lump I found as ductal carcinoma tumor. Imaging a week later detected another tumor mere inches from the first in my right breast. Another biopsy diagnosed lobular carcinoma. Then eight years later, the recurrence in my nearby lymph nodes tested as yet another subtype. What the heck!? Even within one tumor there may be cells that present different subtypes adding to the challenge of finding the right drug combo to wipe out every cancerous cell. And that is only concerning breast cancer. There are over 100 types of cancer with each likely needing a different treatment. The more I learned, the less hope I had for a cure. It even became one of those words that sounds funny the more I said it. Cure. Cure.Cure.
This book is not going to be all pedantic and glum, but I was a teacher and I felt that despite all the cancer awareness causes, very little is known/understood beyond the colorful, glossy marketing campaigns. When I was first diagnosed at age 38, I had no idea there were types of breast cancer. I just thought you had breast cancer.
Stage I: October 2008
Unlike every cancer movie, nobody ever sat at a desk across from my husband Scott and me as we held hands, opened a folder and actually said, “You have cancer” to me. We knew the results would be delivered by phone the day or two after the stereotactic needle biopsy. When I was home I caught myself watching the phone hoping both that it would and would not ring. Even though we expected it, Scott and I both jumped when it rang. While I answered the phone, I instinctively put my hand on my chest as if covering it would keep it from being malignant. Then I recoiled: the bruising was still a small spot, but like the news of the diagnosis, it grew larger and darker. When Dr. C said, “I wish I could make a house call,” I knew unequivocally, it’s cancer. He explained the process to follow, appointments and consultations and surgery, but I traced the patterns in our granite countertop and tried to shake the disbelief. After the conversation, I asked Scott to confirm that I had cancer. His face already held the answer, but I needed to hear it.
Wednesday night was church night, so I gathered my materials and herded our boys, fourteen-year-old Mack and eleven-year-old Ben, in the car to get to religion class by 5:30 since it was too late to cancel. My life had been upended, but the routines had to go on. After parking beside the parochial school to avoid the students dashing between church and parochial school, I looked down as I hustled in the small school to get to the classroom on the second floor unnoticed, but Terry, the religious ed. director, dashed toward me with her arms outstretched saying, “Oh Linda, I just really need a hug from you.”
“You need a hug,” I thought numbly, but giving her a hug resulted in receiving one in return. I made it through that hug without crying so I knew I could get through an hour of religion class of fifteen rambunctious fifth graders. Ben was in this class and I definitely needed to keep my composure for him. My overall goal as a religion teacher was to make enough fun that students might want to come next year. I always felt ill-equipped, like my faith was not enough to extend to others, so I made sure each lesson was an experience I would want to have as a kid, not an hour of reading and lecture. Thankfully my plan started with an elaborate game of telephone to start followed by a reading about the finding of Jesus in the Temple hoping to show how rumors and gossip get started and flourish. I had long held a disgust with the overuse of “surreal,” but I felt every minute in a slow-motion lens. This heightened state of awareness may have been what Thoreau wanted, but I wanted desperately to go back to basic surface living.
Hopefully the lesson was meaningful. For me it provided a chance to watch Ben and try to pause this happy time, not to be spoiled by the diagnosis. After we returned home, Scott was a trooper and gathered the boys in the basement to tell them. They all slogged up the split level stairs to some long and sob-filled hugs before going to bed. And so started the first of many nights of poor sleep.
My cancer trudge started with “invasive ductal carcinoma.” I had found a lump in late summer, but waited through a couple of menstrual periods to see if it was a cyst or something hormonal. I was 38. I had looked up the statistics The American Cancer Society listed lifetime risk for women at one in eight, but at my age, the percentage fell to one in 400. Even my height was in my favor as several studies found those of us under 5’ 3 were 10-20% less likely to get breast cancer. The numbers in my favor assuaged the niggling worry about odds. After my diagnosis I would never again trust statistics for my health.
When I made the appointment for my annual checkup, I mentioned the lump to the receptionist and was disappointed that I had to wait a few weeks for an appointment. When I mentioned the wait to my doctor, he was not pleased and left the consult room to directly instruct the scheduler that lumps got jumps. Thereafter my chart had some magical verbiage in it that if I wanted an appointment to move heaven and earth and get it scheduled.
With every diagnosis, I learned that having a treatment plan gave me a positive focus from the swirling nightmares. The appointment schedule was intense. My physical was Tuesday, Oct. 28 with an ultrasound that same day in Paynesville and a mammogram the following day at the Breast Center in St. Cloud, then a breast needle core biopsy early the next Tuesday with results the next day.
Following the phone call from my primary care doc, my treatment transferred to my medical oncology. Only one week after my physical, I found myself in the care of an oncologist, Dr. D, whom Scott and I trusted from the start. Besides, Dr. D referred to me in his notes as “pleasant white lady.” At the end of that first appointment, after placing imaging orders for a PET scan and a surgical referral for a lumpectomy, he stood up, turned toward the door then paused, turned back and sat down. Tapping his forehead with his finger, he looked at me, nodded his head and explained that he wanted more imagining and ordered a breast MRI.
Unlike other scans, the breast MRI required me to be face down with my arms above my head and being prone made me feel vulnerable. That scan on Veteran’s Day changed the course of treatment as it showed two more tiny tumors, .8mm and 1.4 cm, in my right breast. More tumors meant another biopsy. The next day Scott and I met with a general surgeon, Dr. A, to discuss and schedule the lumpectomy and possible clinical radiation trial. We met in a tiny conference room where he described the procedure, risks, and recovery process. answering all our questions, he spoke very quickly without seeming hurried. “I think he’s fond of you,” Scott whispered after we left. Well, I had been at my most charming with some belief that a positive relationship would yield better care. Even before we got to the parking lot, I felt so much better having the surgery scheduled.
Next, the biopsy from the two tiny tumors followed the surgical consult. Before the biopsy, the radiologist admitted she was warned that the .8mm tumor was so small it might not be possible to find, but Dr. K told me she was confident and determined to locate the minuscule mass. The spring-loaded core needle biopsy was painful, but also welcome. In spite of the fact that the whole process left me gobsmacked, I was also curious so I had the radiologist show me the sample she captured; the tiny, white and curly speck floated in the test tube’s clear liquid.
Scott was not able to be there, but the case coordinator was comforting and helped me decide that I now needed a mastectomy as the multiple tumors would not allow for a lumpectomy. She discussed plastic surgery options with implants, but adding anything foreign did not appeal to me, so she mentioned a new surgeon, Dr. G, who had just started performing a relatively new procedure, DIEP (deep inferior epigastric perforator) flap. It sounded preferable to the other options so she left to arrange a consult appointment.
Right after lunch the next day, the case coordinator relayed the results over the phone: Invasive Lobular Carcinoma, AKA, The Double Mammy Whammy. The nurse assured me that although this type was less common than ductal, it responded well to treatment and thankfully the same drugs for ductal worked on lobular. Armed with guidance from my primary care doctor about the latest diagnosis, Scott and I mulled the options on our way to the surgical referral at 4:30 that day. Lobular cancer had a predilection to spread to the other breast. We had already shifted from lumpectomy to mastectomy. At the moment we passed the Dairy Queen, I knew I wanted bilateral mastectomies (BMX). I wanted it all gone. Gone. All. Gone. It took months before I would think of ice cream flavors when I passed the Dairy Queen and not surgical options.
The plastic surgeon’s explanation of DIEP flap surgery offered pros and cons. Pros: warm and soft breasts with no need to replace implants, no need for future mammograms as nearly all tissue would be removed, plus they would naturally adjust with weight gain or loss as stomach tissue would. Cons: a long scar from the surgical site, infection risk, and possible flap death. Based on the fat I had accumulated and the skin stretched from two pregnancies, I could expect to replace the 36B I had. We were sold. We’d have to coordinate with the general surgeon who would perform the BMX then plastics would follow with immediate reconstruction. While we were there, the general surgeon called. He had seen my lobular diagnosis and wanted to make sure I considered bilateral mastectomies. We were so impressed that Dr. A sought us out, on a Friday night at 5:30 no less. He had us meet him in his office immediately to schedule the ten hour procedure. December 19th. I burst into tears when I heard the date. It seemed like an eternity, but the other option of having the mastectomies as scheduled on November 18th, recovering and then another surgery to do the reconstruction was not appealing. The whirlwind of appointments came to a screeching halt until the surgery. With a plan in place, I slept more each night.
Chemotherapy followed surgery. The Oncotype Breast Recurrence Score Test was a newer option that used my tumor sample to predict the benefit of chemotherapy, examining 21 genes to determine the likelihood of recurrence in the next 10 years. It was costly but covered by insurance. A sample of the tumor was shipped off with a score mailed off two weeks later. My score was 18, intermediate. A low score meant little to no benefit from chemo, a high score meant chemo was strongly recommended but I had the nebulous mid-range. Dr. D recommended chemo as with my young age I had more time to recur. A nurse had mentioned he had lost his wife to breast cancer so I felt his advice was especially poignant. I believed doctors are often asked how they would treat their own family members, so knowing his connection made the decision easier. It was always tough to make medical choices, but I did not want to be conservative and then regret my decision. In hindsight, chemo was absolutely the right decision.
Five years of tamoxifen followed chemo. Tamoxifen was prescribed to block the hormone receptors on cancer cells from getting estrogen to slow or stop the cancer growth since mine was estrogen positive. The side effects were mild except for continuing early menopause symptoms. Not having any menstrual periods was a bonus, but the achy feet and hot flashes were frustrating, occurring occasionally throughout the day and like clockwork at 10:07 every night. I didn’t realize how junky tamoxifen made me feel until I no longer took it.
From my first visit to the Coborn Cancer Center, I had a small fancy orange and turquoise notebook I took with me to all my oncology appointments. I wrote questions for upcoming appointments and kept track of test results. One page in huge letters proclaims “DONE!” in 2014 when I had completed five years of tamoxifen and my second oncologist, Dr. E and I agreed to part ways. “Can I say I’m cured?” I asked. He pursed his lips and explained that he never told his patients they were cured since there was no guarantee that cancer was not active in part of the body but yet not measurable. Even “clear” PET scans are not proof enough. This reality remained a sliver of recurrence worry. I celebrated being finished with chemo while missing the halcyon days, like our family trip to San Diego prior to my diagnosis. I could see the lasting remnants of cancer in my pictures, not only short hair but smaller smiles and worried eyes. Now my life was before and after cancer.
The next page began, “9/15/16 lump in R armpit” but the entries became just questions as I relied on MyChart online medical records for results. When I was diagnosed with stage IV, I started a new book.
Stage III: September 2016
The second diagnosis came eight years later in September 2016 with a Friday call at 6:38. Seeing the clinic number on my phone was a relief in knowing we’d have results without having to wait over the weekend, but also a full panic as I had uneasy premonition. Just a few days before I had been talking to a friend on the phone and rubbing my arms, sore from yoga when I felt a lump, a tiny lump in my armpit. I could only detect it when my arm was up holding the phone. I cut the call short as I gingerly felt with my fingers what felt like doom in my heart. With eight years since the first diagnosis, a recurrence was less likely as they tend to happen in the first two years, but I had more doubt this time than the initial diagnosis.
Anxious to get the earliest appointment, I saw a new doctor. Although I only saw her one time, I was impressed with her concern. Over the phone, her broken voice told me without words, but I made her repeat the results since this tumor was a new subtype for me, Her-2 (human epidermal growth factor receptor) positive and hormone negative, a complete switch from the initial tumors. I thanked her for delivering the news; I could tell it was difficult for her too, the last call she needed to make that day, bad news put off to the end.
Short of hearing diagnosis myself, the worst was telling our sons. While I called Mack, Scott called Ben. Ben was in his first year and Mack his last at UMD. By chance they were hanging out together playing video games when we called so we broke the news over speakerphone followed by repeating that I’d be fine and would not hold back any information. We all broke down after the call, a big crying family mess.
My stage III diagnosis was nearly four years to the day after Mom’s started. Dad died of prostate cancer on New Year’s eve 2015, Mom had died less than six months later in June 2016, I found that life-wrecking lump in Pinktober, plus we had to put down our only family pet, Jet, who had been diagnosed with cancer that month too. I could almost hear Mom say, “Do you feel like a scab, kinda picked on?” Though I missed them and wanted in the worst way to talk to them, it was a small blessing not having to tell my parents that my cancer had recurred.
Once again a flurry of appointments followed the diagnosis. It was mid-October, MEA weekend, and I had plane tickets for a long weekend with girlfriends in Florida, but I knew I would be worried and wanted to get everything done without missing school so I stayed back. Instead of toes in the sand on long walks by the ocean, I had a brain MRI, a PET scan, an echo-cardiogram and lab work. All the imaging and procedures were done before we saw Dr. E. His approach was a perfect fit for us, Scott and I were totally on board with having everything in place before that visit.
Dr. E was crestfallen when he came in. It had been eight years since the original diagnosis and two years since we decided I didn’t need yearly follow-up visits. We thanked him for seeing us and shared the Coborn Cancer Center description of him: “Dr…. is brilliant, compassionate and thorough. I had full trust in all his treatment plans and consider myself fortunate to have been in his care,” then admitted it was from a patient satisfaction survey I completed years before. When he asked if I wanted a second opinion, Scott and I shook our heads in unison. A friend asked if I would switch doctors since the treatments had failed, but I felt more like he always had my best interest and did not feel he had failed in any way.
Once again some of the anxiety was alleviated when we had a treatment plan in place. I would have six TCHP (Taxotere, Herceptin, Carboplatin, Perjeta) treatments followed by Herceptin and Perjeta in three week cycles to complete a year. Vascular port#2 was implanted to handle chemo and spare my veins from being accessed by a year of treatment and lab draws. PET scans were scheduled to check the progress and surgery, axillary node dissection, planned in February when the Taxotere and Carboplatin were done.
TCHP was the gold standard for Her2+ tumors. While the chemotherapy agents Carboplatin and Taxotere provided a systemic attack, the targeted therapies Herceptin and Perjeta would attack locally. If Napoleon had been an oncologist, he would have approved this multi-prong approach. Over time, Oncology practice had accumulated plenty of evidence that more drugs were better at smiting mutating cells. If only one agent was used, more mutations could grow, but with dual agents, the mutations that could survive two chemo drugs dropped. I had legions of people to thank who participated in clinical trials before me for helping set the optimal combo of drugs and dosing and cycling. The mix of local and systemic treatments could be explained with an analogy published in The Journal of Advanced Practical Oncology by imagining cancer as a dandelion:
If you pull it up by the roots before it gets those fuzzy seeds (local treatment), you kill the plant. But if the dandelion gets those fuzzy seeds that blow off, you may see where some of those fuzzy seeds go; unfortunately, there are other fuzzy seeds out there that cannot be seen. These seeds have the potential for landing somewhere else in the body, and they might grow (metastatic disease). Systemic treatment is like spraying the whole yard with weed killer (this is like systemic treatment). Unfortunately, the weed killer can also affect normal cells, causing side effects.
Although the standard of care for HER2 was to monitor the tumor response to TCHP, it was hard at first to have chemo before surgery since originally I had surgery followed by chemo. In only two weeks after the first treatment, my fears were alleviated as I could feel the tumor was appreciably smaller. While the tumor slowly shrank, my hopes for a pathologic complete response (PCR) grew. A PCR meant there were no traces of invasive malignancy at the cellular level, the best possible outcome, but we would not know the results until the axillary node dissection in five months.
Only two weeks after port#3 was implanted and treatment started, the wheels fell off the bus. All the wheels, even the spare. Three catastrophic events in ten days put me on medical leave for twelve school weeks from mid November to March.Thankfully, the TCHP treatments continued uninterrupted. A PET scan in December was an early Christmas present: No Evidence of Disease; Herceptin had worked its magic and the lymph nodes showed no reaction. The areas that lit up before went dark.
After five months of TCHP, it was time for the axillary node dissection. The axillary node dissection involved removing 8 lymph nodes; 6 had active cancer when examined pathologically. Radiation was needed to clean up any cancer cells in the area. In chronological order, the radiation oncologist, Dr. H reviewed my medical history to me, asking a few questions along the way. Even though it was a fairly long history, he discussed it at length and in depth without once consulting notes. Suffice to say, we were impressed. After he explained how radiation worked, the side effects and risks, he said, “I would like to offer you radiation,” and we readily accepted. In a whisper so quiet if in print would be a 7pt font he added,“There is a possible cure.” I kept that tiny whispered word in my heart.
While we waited two weeks, a team of experts including the radiation oncologist, physicist, dosimetrists discussed, plotted, planned and consulted with other experts. Ultimately, they recommended whole breast radiation as opposed to a smaller area due to spread risk to sternum and chest wall. Scott and I felt completely comfortable with the treatment plan. I did not have radiation with stage I treatment in 2009 as the bilateral mastectomies removed all but a tiny amount of breast tissue. The lymph nodes had tested clear at that point. At that time there had been some problems in the radiation department with a few patients who received doses aimed incorrectly that damaged organs, tissues and bones but missed their tumors completely. Since radiation can only be done once in any given area, I was fortunate not to have had it initially as I needed it now and was blessed that I dodged any radiation issues.
After twelve weeks of medical leave, I happily returned to work but now faced 25 radiation treatments. A few landed on holidays, but most I scheduled at 3:45 as late as possible. Just like the students, when the final bell rang at the end of the day I had my coat on and bags packed. I dashed to my car to get out of the parking lot before the buses. If I was late, it was an eleven minute wait as they lined up and left together in a long orange snake. It took roughly 25 minutes to get from ROCORI to the Coborn Cancer Center. I took the windy, sometimes tractor-laden Country Road 2 to busy two-laned Highway 75 in St. Joseph then turned off to take Co Rd 133. The left turn light on Co Rd 133 was crucial to getting to my appointment on time. It was green. Every. Single. Day. Who knows if there is a patron saint of signal lights, but I felt blessed every time I cruised through and anyone waiting westbound on 75 appreciated my animated expression as I turned.
The appointments were brief with more time spent setting up my position in a casting to ensure the radiation was precisely aimed. By the fourth day the dressings used to cover the three Sharpie dots used to aim the radiation on my breast began to irritate my skin. The radiation tech mentioned tattooed dots as an option and I had scarcely agreed when she snipped off an ink pen, swabbed it with alcohol, jammed it in my skin and voila, three ghetto tattoos. To counteract the weariness of daily appointments, I planned at least one errand to run every day, picking up a bag of cashews or take-out or socks just to keep it from being medical drudgery. It worked for me and I recommended my hack to others who faced radiation.
In August, 2017, I had elective salpingo-oophorectomy surgery to remove my ovaries and fallopian tubes as ovarian cancer risk-reduction given Mom’s experience. It was a short procedure with a quick recovery. Much to the amusement of the medical staff, I wore fuzzy brown socks with a beaver’s face and ears that poked up on the top to that surgery. With my year of Herceptin and Perjeta ending in October 2017, I celebrated with Pam and Correne on Marco Island in Florida making up for the trip I had cancelled the year before. My oncology follow-ups continued every three months. Once again I was living the life fantastic with only the pesky dread of recurrence, a slice of uncertainty with the awareness that if it returned it would be at an advanced stage and thus deadlier.
Stage IV: August 2018
Diagnosis three was abrupt. The week before workshop 2018 began and before everyone else jammed the photocopy room and the photocopier, I made my copies for the year, filed them away by class, color coded by unit. My lesson plan calendar was printed for the year and packed in my brand new golf-themed school bag. I was ready for 2018.
Thursday morning I played golf in the morning at Rich Spring, scoring a respectable 44 even though my game often slid as the summer waned. Once the back to school sales began in earnest, I golfed less. My left hand became more similar in shade to the ungloved right and the odd tan pattern on my feet from my golf sandals also faded.
After golf, I paddle boarded with my friend Correne across five lakes on the Horseshoe chain until we reached our favorite swimming spot on Bolfing bay before turning back. We talked about the upcoming year, new teachers, new classes, and our kids.
Late in the afternoon, I returned home and whisked through These is My Words, the book selected for discussion, refreshing my memory of the characters and plot. I carpooled with Pam and Correne to Karen’s: three English teachers, one vehicle, very little silence. As usual, the book club discussion was animated. I sat by Jennifer, whispering to ask about her recent breast cancer diagnosis and answering questions.
After that full day just before the end of summer, I crept into bed by Scott, who was already nearing sleep as he worked early. I slept well until I didn’t, waking with rolling nausea and bed spins deserved only from a night of drinking. After my cancer recurrence two years ago I hadn’t had even a drop of alcohol, so it wasn’t that, but the nausea would not subside. I was rarely nauseated and seldom sick to my stomach in my life. During one 23-year stretch I had gone without vomiting, not the tilt-a-whirl, pregnancy nor chemotherapy had made me toss my cookies.
Finally around 3 am, I dashed to the bathroom and was sick. I brushed my teeth then crawled back to bed. My childhood experience was that I always felt so much better after being sick, but this was different, a championship level of nausea that never abated. I dashed to the bathroom after 10 minutes. Back to bed. Dash to bathroom. Back and forth in a brutal cycle for over an hour until I told Scott I needed to go to the emergency department. I had brought my Mom to the ED once when she was in treatment for ovarian cancer, unable to stop vomiting until they gave her a shot. I wanted that shot. Between bouts of being ill, I got ready while Scott showered and dressed for work, the ED just down the hall from the Rehab department where he’d worked for the past 26 years. He noted that the vomit cycle was very even, every 15 minutes. Was it something I ate? I thought of everything I ate the day before. Anything in my stomach had longed passed. I was wracked by the nausea and was now throwing up bitter, thick, and bright Mountain-Dew-yellow-colored stomach acid.
Scott had called ahead so I was whisked to an ED room where the nurse, a former ROCORI student, took a quick history before Dr. C, my primary doctor, appeared. His tone was quiet and even, but I noticed his hands were clenched and knuckles white against his navy blue scrubs when he whispered, “I want you to get a CT.”
If my emotions could have been measured like an EKG monitors the heart, I would have flatlined. I knew the numbers. One third of women with stage III breast cancer would progress to brain metastases. I had gone into the hospital only concerned about the vomiting and not why I was so sick, why the cycle was so even. Thankfully the scan was brief since I had to lie completely still. Tears rolled down my face and pooled in my ears. I couldn’t wipe them away and had to hold back sobs that might otherwise have brought me to my knees.
Within 30 minutes we had the diagnosis: three brain tumors. An MRI followed and confirmed the progression to stage IV. Incurable.
Dr. C tracked Scott down in the rehab department to tell him. Scott raced to my side and we held each other, shuddering in agony until our sobs somehow synchronized and it made us laugh. We had this amazing love life and it was going to be lopped off early. We hugged harder to make up for missed future hugs. We were incredibly close, annoyingly to some, but somehow this brought us even closer. Brave Scott called the boys and we both contacted our families.
It was a Thursday and the next Tuesday was the first day of back to school workshop for teachers. I knew I would not be able to continue working; it was one of the toughest things to say out loud. With students starting school in less than two weeks, I needed to call my principal. Trying to be casual, I asked if he had found a good long-term substitute for another colleague and if he could find one for the year for me. He choked as he whispered, “Oh, no. What’s going on?” I squeaked out a reply. Trying to wake up from the all-too-real nightmare, I kept staring at the blue scrubs I had on and at my IV. Right before lunch, I was discharged. The steroids had stopped the nausea and I was in not pain, but it did not seem possible that I could return home with this new heavy diagnosis. The house was just as we left it yet somehow completely changed. Trying to wrap my head around my new timeline, I wandered in the yard, restless inside and out. In the late afternoon I posted on CaringBridge to spread the news so everyone would have the same information.
Five very long days later we met with Dr. E at an appointment originally scheduled in June as a follow-up. Just nine months without Herceptin and I had recurred. All the concern he felt registered in his pained expression. After discussing treatment options, he ordered a PET scan and a return visit for the results. A few days later we huddled around on the computer screen reviewing the results with him. The PET showed a small tumor on my rib bone, mets we would treat with another six cycles of TCHP followed by Herceptin indefinitely. Scott read ahead in the report to the section listing tumors throughout my spine. Having brain tumors had shaken me, but seeing spots lit up along my spine was devastating with their frightening complications from pain to paralysis to death. Dr. E popped up and left to quickly confer with the radiation oncologist and returned to report that the radiation oncologist was also confident it was physiological stress and not malignancy, but since the spine was difficult to read via PET, he ordered MRIs of the cervical, thoracic and lumbar spine. A few days later I walked to CentraCare Paynesville praying as I passed the noisy portable scanning unit. At the registration desk, my voice caught in my throat when I said, “I’m here for spine MRIs.” My mind was racing, but I managed to keep my body still for the two hours of scanning. Before I was even out of the scanner, the technician assured me she had sent the results electronically. I walked home and Scott came home for lunch. Waiting for the results to post while we picked at our lunch, we kept MyChart open and refreshed it between bites. Reading “Normal” on each scan was like getting a reduced prison sentence. The MRI was better able to view the spine than the PET so it trumped those results.
Though it seemed much longer, two days later we met with my radiation oncologist who showed us the MRI images of the tumors, and the one with edema near the vomit center that had triggered all the nausea and vomiting. Dr H explained how stereotactic radiation surgery worked, how the laser beams could be focused on points as small as the tip of a pen. One tumor was close to the skull. I would have thought that was a better location than the one deep in the brain, but it was not. The brain could withstand the insult from the radiation, but the skull and meninges would not tolerate that radiation. Dr H was positive that all tumors could be treated but had to refer me to a colleague in the HealthEast system in the Twin Cities. CentraCare had recently started offering stereotactic radiation, but were not treating brain tumors yet.
Before we could schedule appointments, we had to wait for insurance to approve treatment at HealthEast. The first appointment was more imaging since their high definition MRI had higher resolution, which showed another small tumor around 1mm visible on just one slide of the 180 images. At the next appointment the same day in a different hospital, we reviewed these results with the Harvard-trained radiation oncologist whose upbeat energy left us encouraged. Exactly what we needed at the time, Dr F was equal parts brilliant and compassionate. It took a few weeks for a plan to be finalized with a team of physicists, radiation oncologists and neurologists. Those were long weeks–like stretch the word “long” across the whole page long. The dexamethasone prescribed in the ED effectively treated the inflammation from the brain tumors so I was not nauseated or throwing up and it gave me heaps of energy. At night I would fall asleep hard but was unable to stay asleep very long. I was tired and worried, pretty much a highly-energized zombie. Once again I needed the treatment plan to feel any peace.
Meanwhile I drove to school, but instead of setting up my classroom, I cleaned out my room quickly before the other teachers returned. The sad faces and titled heads of my coworkers was unbearable. Unaware of my situation, a math teacher breezed by and tossed out the usual, “Hey, how are you?” I burst into tears and pointed to the office for staff to explain. That poor guy! I spent one full day with my substitute teacher going over the calendars of lessons I had planned and showing him all the ready photocopies and scheduled computer labs Thankfully, he was calm and tech savvy. He only contacted me if absolutely necessary which helped me separate from my beloved job. But this leave felt like expulsion. Unlike the previous medical leave of twelve weeks, I had no end date to look forward to. I switched abruptly from a busy, heavily scheduled job to quiet, long solitude. I missed the students, the coworkers, even the nightmares about running late, not being prepared or not wearing pants.
Forty-nine days after the brain tumors made their presence known, we had the treatment plan and a date to start stereotactic brain radiation. Though I was skeptical, the procedure was, as promised, painless. While waiting for some vile side effect to appear, I moved hesitantly for a few days, and aside from being more tired for a few days, I felt well. Actually, I felt grand just getting more sleep as I was weaned off the steroids. Every weekday felt odd, like I had forgotten an appointment, but I realized it was missing the routine of work. The beautiful fall weather helped, but then the gloom of winter and the need to stay sheltered due to chemo was devastating.
The small spot my fifth rib lit up with active malignancy: I knew what to expect from TCHP and was prepared for all the side effects, which were ultimately less profound and with no near-death experiences like the previous cycle–all I credited to not being at work. Without the stress, I had plenty of time to sleep, exercise and make healthy meals. I was dealing with brain and bone mets and pretty much had two doctors; medical oncology focused on the bone mets while radiation oncology honed in on the brain mets. They often conferred, but their imaging and treatment were very much separate.
So I hovered. Over a year of stable life dancing with stage four in the wings passed before I could finish the book I started as a journal the first night I was diagnosed. I had spent the first year in a state of constant worry, but unlike the previous diagnoses, this one did not diminish. Several years prior a coworker who was struggling with a colon cancer diagnosis more than treatment side effects asked, “Will I ever have a day when that doesn’t start with me crying?” with tears in her eyes. Months later she admitted it was gradually getting easier and she had bounced back from other trials. Well, I needed to get my bounce back. Without my career one benefit of writing was a sense of purpose, but the biggest blessing was the spiritual healing that chased away most fear and doubt and left me with a calm inner peace. I had chemotherapy, breast and brain radiation, surgeries, and immunotherapy all to heal my body. It was time to find balm for my soul.
Eventually, inspiration came from a book I read: A Month of Sundays: Searching for the Spirit and My Sister about a woman who visits different houses of worship every Sunday. Maybe I could attend Mass every day in November at 30 different churches? I listed churches nearby, checked the St. Cloud diocese web page, and created a grid of churches with Mass times. Being in Stearns County was almost like cheating with the large number of churches nearby.John Roscoe and Robert Roscoe in Legacies of Faith: The Catholic Churches of Stearns County write:
Stearns County, Minnesota, contains a generous sprinkling of small communities with handsome Catholic churches. Most of these towns were formed as, and still are, predominantly Catholic settlements. No county in Minnesota, or even in the United States, compares in density of Catholic hamlets to Stearns County. With a population approximately two-thirds Catholic, this county contains fifty Catholic churches, the majority of which were built between 1871 and 1930.
After I posted my intentions with my September CaringBridge journal, a few people reached out to join me. Clever Mack coined the term Church Crawl. My friend Carol mentioned my plan to the Central Minnesota Catholic Magazine of the Diocese of St. Cloud so I was interviewed for an online article: “I always wanted to do a pilgrimage, like to Fatima or Guadalupe, but my health doesn’t allow for international travel anymore…Then I thought: ‘If I were going to make a trip, what would I do?’ I came up with my own kind of pilgrimage.” After each Mass, I wrote a reflection, journaling about the homily and how it connected to my life.
The word Diagnosis is from the Greek, to know, to discern. It worked on two levels: in medical parlance and in how I came to know and discern so much about myself and my faith in a successful pilgrimage.
