15
November 19
St. Nicholas, St. Nicholas
From miles off Stearns County Rd 2, the twin steeples of the St. Nicholas church could be seen spiked above the horizon. As I drove toward them, I recalled the baseball games Mack and Ben played on the field down the road. St. Nicholas had the mainstays of a classic Stearns County burg: a bar and a Catholic Church. On my way to the main entrance, I passed vehicles lined up in the church parking lot, so I was surprised to find the doors locked and the lights inside off. Was it somehow symbolic? Perhaps. I tried a side door that got me into the back of the church, all dark and silent. Picturing the layout of St. Margaret’s in Lake Henry, I found another door leading to the basement and went down with my hopes up. The next door opened into a small room where I was relieved to see a handful of people gathered on a few pews in front of a small altar. I surmised that the reason was huge savings in heating the smaller space instead of the enormous church. Finding the Mass reminded me of the relief I felt every time an infusion started. Over fifty times, I breathed a sigh when the double-checker started the pump to drip the meds. Missing a dose was a fear I had, giving the cancer a chance to get ahead like the fable where the turtle passes the hare.
A very tired and sick Father Statz, completely different than the healthy version I saw in his Kimball parish, made his way down during the rosary and gave a short sermon on the prayer “O, Lord I am not worthy that you should enter under my roof, but only say the Word, and my soul shall be healed.”
Complications
As a child I would squish my eyes tight shut during Mass as I prayed, “Lord, I am not worthy to receive you, but only say the word and I shall be healed” then peaked with one eye to see if any scars or wounds or splinters had been healed. As an adult, I prayed, “O, Lord I am not worthy that you should enter under my roof, but only say the Word, and my soul shall be healed, ” still with my eyes closed but now a shiver ran down my spine and my mind raced as I worried that my soul was not prepped. The Mass and most rote prayers changed for me, now acutely aware of the frequent messages of life after death and the hour of our death. I felt existentially pinched: young at heart, but old in my soul. I mourned the years I would lose, the chance to properly retire, watching Ben and Mack navigate their adult years, decades more happily ever after with Scott. Most of my heart was filled with gratitude that I felt so well and did a happy dance every morning I woke without brain tumor symptoms, especially when the original diagnosis included mets all through my spine, an indicator that the cancer had run unchallenged throughout my body. The lowest days were past, but a deep sadness remained. I didn’t feel sorry for myself and tried to focus on my blessings, but holidays add a sharp pang of fear that I might not see that celebration again. Putting away summer inflatable toys was always deflating, pun intended. And Christmas decorations were especially hard to take down both for the end of the holiday and also in fear that I might not be taking them out again.
In 2016 we attended our friends’ wedding in Spicer, MN, on Scott’s birthday: November 19th. The ceremony was heart-warming with extra touches as two families blended into one and an entire churchful of friends and family cheering on the union. The reception was decorated with cranberries and ice. I had been battling a cold and was in the middle of chemotherapy from the stage III diagnosis following a biopsy of my lymph nodes inches from where the original tumor started. We danced a bit, but my cough put a damper on the evening so we left early.
I remember shivering on the way home, shivering uncontrollably in what I later learned was the medical folk term “rigors,” but at that time I attributed it to being cold. On Sunday morning, I took a leisurely bath and then took my temperature: 101.2–that temperature that means off to the ER. I tried to rationalize it away, then told Scott who sprang into action.
One of the many parts of the chemotherapy regimen is the ED note signed by my oncologist that allows me to budge in front. I had never been to the St. Cloud Hospital’s ED but was anticipating a long line. Instead there were zero patients, but my ED Pass definitely caught the intake nurse’s attention and I was quickly roomed. In a few minutes the hospitalist arrived and ordered blood work and a chest x-ray. I honestly was not feeling unwell, certainly would have never sought medical attention outside of the chemo, and was surprised when I was admitted with sepsis. Poor Scott was much more aware of the seriousness of sepsis, but never let me see how concerned he was until months later when he confided that he did not sleep the first night, but kept checking to make sure I was still breathing.
My port had been irritated along my neck where the tubing threads into my vein. The top was red with a stitch that hadn’t dissolved so the chemo nurse who accessed my port on Thursday helped snip it off and clean up the area. The oncologist did not seem concerned when I showed him. Now four days later, the infectious disease specialist ordered the port removed as it was likely the source of the infection. Only two weeks old, the port likely had been harboring bacteria since placement and now deadly bacteria were running amok in my body, spreading with every heartbeat. Mostly, I was unaware of the seriousness except for the haunting memory of a close friend/coworker who had died of sepsis ten years before. Plus the intake nurse’s careful inspections of every inch of my body for a source coupled with the ever-present concern on Scott’s face heightened my impression that this was serious.
As a recovering librarian, I was always loath to Google medical symptoms. A few reputable sources I trusted that indicated the mortality with immunocompromised patients ran up to fifty percent, doubling my concern even though I hardly felt ill except for a nagging cough and fever. Having sepsis as a cancer patient receiving chemotherapy was a bad combo; it was the first time I really was aware that complications from treatment might be the end of me, not cancer. I was kept comfortable with delicious frozen Italian ices that I ate in succession, running the floor out of raspberry then lemon flavors. My temperature was never high though. Naps ruined night sleep for me so I avoided them, but took a break from the frozen treats and noticed how warm my mouth felt. The next temperature was 102.4 and probably more accurate as I hadn’t had anything cold for a few hours.
On that Sunday night, I accessed my school files online and put together a plan for the short week before Thanksgiving. A storm on Monday closed the school so I missed only two days. The substitute was Mark, one of the best, who would follow the plans for the four different classes and could handle the students as he had earned their respect. My plans were not to pop in a video, but the work I had set up on my calendar for myself. Having a poor substitute was the worst part of being gone. To attend a staff development meeting in school, I spent 20 minutes writing a plan for my 70 minute video production class for a new substitute. She wrote me a full page of notes and then sought me out for a 20 minute tirade about how awful ROCORI students were, interesting since she was a recent alum. In the end I spent forty minutes preparing and dealing with fallout for a seventy minute class I did not teach. Suffice to say I hated missing class and would refuse to attend meetings or conferences if it pulled me from class.
Early Monday morning, Dr. S, the infectious disease specialist, rounded. The nurses mentioned that he grew up in Germany and forewarned of his somewhat terse bed-side manner. After he introduced himself, I tossed out, “Es frucht mich sehr zu kennen zu lernen,” followed by, “I spreche nur weinig Deutsch.” I’m pleased to meet you, but I do not speak much German. I told him I was teaching All Quiet on the Western Front, which was translated from German and followed German soldiers in France during World War I. The students appreciated the brutal honesty of the book. Dr. S was won over, sitting by me on the built-in couch and gabbing away. All the schmoozing in German paid off: Dr S was instrumental in my getting home by Thanksgiving. Mom, who grew up speaking German at home, would have been so proud.
On Tuesday, the labs from the port came in on Tuesday and showed the port was infected. I needed a new method for delivering heavy-duty antibiotics 24/7 for two weeks so a PICC line was ordered.
Scott never left my side except for a few tests and procedures. I was wheeled in my bed into the hall for someone to bring me to imaging. Anytime I was left in the hallway I sang, “Just me and the blues,” until someone moved me along. The orderly maneuvered the gurney through the hallways, down elevators and left me in a line of gurneys outside imaging. “Just me and the blues,” I sang until a nurse explained the procedure where a radiologist used ultrasound to guide the PICC line in a vein in my arm to my chest so my heart could pump the meds along. I agreed and signed the form.
The radiologists were working with long lines of procedures as the next day was Thanksgiving. They basically took the next case. I had never experienced such impersonal care. I am pretty confident that the radiologist gave more care to the bologna on his sandwich than to me. He never greeted me, but quickly repositioned the ultrasound screen and started snaking the PICC line after numbing my arm. I watched the screen and saw the line shiver as I felt a pricking sensation near my scapula, but the radiologist seemed nonplussed so I was not concerned. It was fascinating to watch the line move through my body. A quick bandage from the nurse and I was back in another line, bluesing away until an orderly moved me back to my room.
Thankfully, my blood work showed the antibiotic was working so I decided to try to appreciate the PICC line fed by a device that dispensed the oxacillin with a quiet buzzing every three minutes. On Wednesday afternoon, Scott was trained in changing out the antibiotic and a nurse would visit at home to change the dressing. We gathered up our belongings and were homeward bound by 5pm.
At the same time we opened the door to the foyer from the garage, Mack and Ben entered from the front door, after carpooling home from college in Duluth. The door was still open when Mr. Herrig, my coworker and their favorite Spanish teacher and golf coach, appeared with a piping hot Thanksgiving casserole. It was the most crowded and best foyer meeting ever.
After a long cozy weekend, the boys returned to UMD and I prepared for the week. On Thursday I dashed home so a home health nurse could change the bandage on the PICC unit. Scott was a pro at changing the medicine twice a day, but the bandage required nursing skills. That morning I noticed my shoulder looked a bit puffy and showed the nurse. She blanched and immediately grabbed her phone, “I have a patient who needs an ultrasound now.” Her “now” was louder and firm, and the tone in her voice made Scott and I wince at the same time. I did not go back to school but drove directly to the Paynesville’s hospital where the radiation tech who did ultrasounds for both tumors now found that my jugular had been poked during the PICC installation. Within minutes the ED doctor prescribed blood thinners and a Pharmaceutical Doctor walked me through giving myself Lovenox shots. It was scary, but another example of how impressive the human body is. The jugular was clotting and meanwhile other veins were expanding and taking on more blood similar to off ramps on a highway. For the next six months, I would need to be on blood thinners and have frequent blood tests. It was an alarming event only a few days following the sepsis scare.
Tuesday, five days after the “hey, your jugular was poked” news, I started feeling a bit lightheaded during my planning hour after first period. Was it the chemotherapy or maybe the blood thinners? I felt better after sitting and made it through third hour and then fourth hour, which was split by lunch. I made some photocopies, dropped off some papers in the guidance office for a homebound student then visited the nurse office. I mentioned my lightheadedness and asked if I could take my blood pressure. It was not your usual reading: my right arm was off-limits due to lymphedema and the left arm had a PICC line so we had to use a lower leg. The reading was so high (220/128), she made me immediately sit down, brought out a wheelchair and made me promise to get to an ED as she wheeled me back to my classroom.
Poor Scott. I had rarely taken care of him; he was seldom ill, rarely took off from work. I called him at work, which I avoided since he’s at work and since calling is usually a sign that something is wrong. We decided it would be better to have him pick me up than call an ambulance. I called the office and in minutes the principal was at my door to cover my class. I handed him the lesson plan I had scratched for the rest of the hour and fifth hour too, then looked around the class and picked a young man who had recently joined the National Guard to walk me to the office. As we walked I told him I picked him because he wouldn’t panic if I passed out and could run fast if need be. Scott pulled up in minutes and we took off for the Paynesville Hospital. He called them to let them know we were en route and they directed us to clinic triage. The clinic triage nurse took my blood pressure on my lower leg, still alarmingly high and found a wheelchair. We were off to the ED for the third time in ten days.
Thankfully, Dr C, my primary care doctor, was on-call in the ED and was familiar with my situation. He ordered a CT of my chest. I coughed a few times, then laid still as the scan began. “Impressive phlebitis” was the diagnosis: inflamed, painful blood vessels. Oncology was consulted and ordered prednisone to calm them down and both doctors were in favor of my decision to take a leave from work. I finished out the four days of the term then spent twelve weeks at home taking care of myself as my new full-time job. My December 1st Facebook Status update:
“Tomorrow is the end of fall semester. My recent health scares have me home for winter semester until mid March. I can do this! It may sound like a good vacation gig and I don’t dread the idea, but I really love my job. I am usually ready to go back to school by the end of June in the summer. I got this. My body has thrown revolts to convince me to stay home. In the last week: Sepsis, blood clot and inflamed vessels in my chest so I am making peace with my soul so nothing else in my body decides to break down! How odd to complain not about health — getting better everyday–but about work. About not getting to go to work. But when you have a job you love, it’s not a job! I have the best coworkers and the students are amazing. I will be so ready to return all better!”
Since it was winter semester, I put it in my mind that I was on an extended Christmas break. I slept in, read a lot, and recuperated, but was excited to return to work.