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November 12
Church of Our Lady of the Lakes, Spicer
Built in 2003 according to its cornerstone, Our Lady of the Lakes, was one of the newest churches I visited and the first in the Diocese of New Ulm. Honestly, I could not tell the difference, but that’s the goal, the Catholic Mass is the same throughout the world. One feature I liked was when the priest asked the congregation for their prayer intentions. Usually these are silent, but I liked hearing them offered aloud too. “The souls of the just are in the hand of God,” was a line from Wisdom 2:23-3:9 that Father Jerry highlighted and elicited the picture of God’s hand as painted in The Creation of Adam by Michelangelo. Strong yet gentle. Maybe this image prompted the attention I gave the communion distributor. Regardless, he was the personification of sheer unadulterated devotion; he took his time, made eye contact, and offered the Holy Eucharist with such meaning. It added importance and depth to the already spiritually-intense Eucharist. As an added bonus, when I turned around and extended my own hand to offer peace, I looked up to see dear Uncle Jack, Scott’s godfather, sitting directly behind me. We were both surprised to see each other and caught up a bit after Mass. I had a unique connection to Jack. His sister, his daughter-in-law and I were diagnosed within a month of each other and just weeks later we met at the Kotten family Christmas gathering, filling the back of Lake Henry’s Sportsman’s Den. We three ladies had an instant and deep bond and tried as best we could to support each other with calls, cards, emails and prayers.
A Storm in every Port
Thankfully, I never had an aversion to needles; however, I was a tough blood draw. When I was pregnant with Mack, I had a glucose test that checked for gestational diabetes. After gulping a sickeningly sweet beverage and the set time for it to metabolize had elapsed, I was prepped to have my blood drawn. The nurse tried to find a vein, tried another vein, tried a third then called another nurse who repeated this process. Time was of the essence so they sent me around the block to another medical facility and a nurse there had success on the second try. I did not have gestational diabetes, but did have bruised up arms. This happened again with other lab work. Each clinic could only have so many attempts before I was sent to another facility. I tried the advice: keep your arm warm, drink plenty of liquids, but my veins had their own aversion to needles and seemed to be too shy/stubborn to play nice with others.
In February 2009, before my first chemo treatment, Dr. D ordered vascular port placement because the Adyrimicin in my chemo regimen was among the most caustic, a drug if splashed would eat through skin. The port access would protect my veins.
Port #1 procedure. It was love at first twilight. Twilight sedation. Ahhh. After all the prep work I shuffled over to the surgical suite, crawled on the unusually long but very thin surgical bed with the room all dim except for blue light from monitors, everyone cheerfully working in concert, and then the collective hush as the interventional radiologist announced the procedure. It was like a television medical show only in first-person. After all surgical pieces were in place, the nurse anesthetist would administer the sleepy drugs: versed and fentanyl. I was awake during most of the procedure, listening with the drape over my face as Dr K, the radiologist narrated and as the group discussed a range of topics from sports and holidays to shoes and dishwashers. I could feel pressure but no pain. Admittedly, the drugs were lovely. The anesthetist would check in often, squeeze my hand and finally help me onto a gurney when the procedure was over.
My port was a plastic purple disc the size of a quarter embedded under the skin on my chest just a few inches below my collar bone. A thin catheter was snaked from the port into my jugular vein so any drugs administered would be quickly dispersed. The port also allowed for blood draws so it eliminated all the vein issues. For about a week it was uncomfortable; the port site was tender and the catheter made me wince in pain, especially if I winced. Right!? That movement in my neck sent a jolt of pain reminding me not to wince. Scott made sure I stayed on the painkiller regimen, but certain movements like getting up out of bed were painful.
Always trying to limit missing school, I scheduled the removal of that first port on the first holiday after I completed chemo: Good Friday. Indeed it was a near religious experience as the port symbolized chemotherapy and removing it was cathartic, plus more twilight sedation.
Port #2 with twilight sedation came with the recurrence in October 2016 but only lasted two weeks before the pesky staphylococcus aureus in it was discovered trying to kill me. I was a patient in the hospital on some pretty heavy antibiotics to squelch the septic infection and groggy from the fever it caused, so my memory of the explanation of port #2 was foggy. Without a port, I received chemo only once via vein and the long black streaks that ran up my arms for months reminded me why another port was needed.
Port #3 with twilight sedation was implanted in February 2017 right after my axillary node dissection. The axillary node dissection was performed by my general surgeon Dr. A who had also done my BMX and was fond of me. He had offered to place the port as he did that often at the Veteran’s Administration, but due to contracts with the radiology group that only they were allowed to implant ports at CentraCare, he was not allowed to put the port in. So while still groggy from the full anesthesia with the node dissection, I rode with Scott from CentraCare Plaza surgical center to the St. Cloud Hospital to be anesthetized again for the port placement. Assuredly, it was not in my best interest as a patient to have anesthesia twice, but those powerful agreements trumped patient care. Thankfully, Dr. K from my second biopsy and first port picked up my surgery. It was trickier than usual since she had to avoid the first port area on my right side and the PICC (peripherally inserted central catheter) line had wrecked access to my jugular on the left side. I do not remember much of the implantation of port #3 but Dr K had kept Scott updated. Good old Port # 3 was accessed almost 30 times while I completed the year of infusions. For its explantation with twilight sedation, I picked another school holiday, Black Friday. Again, I felt the joyful and symbolic end of treatment when it was removed. Ben, home from college for the holiday weekend, was my driver. He seemed amused with a hint of apprehension with my usually silly and now less inhibited, drug-addled self.
Port #4 with twilight sedation was the most somber. I knew this was a port for keeps since I would need a port as long as I was alive. Usually it was a positive experience with the staff working as a team, music selected in turns, but even the staff who recognized me from previous implantations were more concerned than lively, especially the usually-chipper former Navy nurse anesthetist I had already seen four times.
Port #4 was a trouper, but two years in I noticed a small circle appear above the port. The skin over the port was fine, but the circle slowly grew like it was being worn from the inside. The oncology nurses were concerned, took photos and required head nurse approval before they would start an infusion. A few weeks later, as ReNae and I approached the ninth green–actually she approached and I pitched, chipped, hit from the sand, etc–I felt an odd sensation, like being stabbed by a fishline but from within. I looked down and could see the edge of the port oddly poking just under the skin. At 4:15 I dialed the nurse triage number expecting a long wait as COVID had driven wait times up. At 4:50 I decided I should have it looked at and drove to Paynesville’s Emergency Department. At the same time as the ED buzzed me in after screening questions, the triage nurse answered. I stood in the doorway juggling my options and chose the ED. I explained my situation and handed over the port card that details its type. The ED doctor, Dr Q, spoke to the surgeon who implanted the port and determined it had detached from my chest wall. Yick. Dr Q instructed me to wait for a call in the morning but if it sprung a leak to apply tons of pressure and go directly to St. Cloud.
Before 8am the next morning, a nurse called with an appointment for a port explantation/port implantation combo at 3pm that day. Intentionally, I had not had anything to eat or drink in case I would get in so the fasting requirement would not be a problem. Except that my veins were needle-averse and I was fasting. All.Day. But it took only one poke from the vein team with their snazzy vein locating device that worked like a stud finder to get my IV started. My veins were touchy to start with and port placement required fasting, which added to the struggle to start the IV started, a self-contained medical conundrum as I needed the port because my veins were difficult to access.
It was a Friday afternoon in August. Shortly before my procedure, I was brought from the hospital room to the surgical center in the lower levels of the hospital while Scott stayed back. Pre-COVID-19 all the prep was done in rooms within the surgical center, but times had changed. Heck, I had even done my own skin prep. The orderlies conducted an elaborate dance of gurneys, backing me up into an entryway to avoid passing by another patient in the same hallway. Once I was in a small bay, a nurse took my history and we waited for the surgeon. On this Friday summer afternoon, the surgeon was brusque. Initially he suggested waiting to see if the port “got better on its own.” But I mentioned again the wound was growing and the port was detached. He offered to try to stitch up the wound, and the nurse mentioned the port would still be detached. I started to feel uneasy with the impression that being in surgery was not how he wanted to spend his afternoon. “How much longer will you need to use a port?” he asked. The nurse, who had read my chart and knew I was stage IV, blanched.
I looked at the ceiling to keep the tears from falling and whispered, “I don’t know. Hopefully a long time? I’m stage four so treatment until I die.”
“Hmmm. Let’s get that port out and a new one placed,” he offered briskly as he finally skimmed over my chart. His demeanor quickly changed to one of concern, but I was still skittish. I had to play the cancer card and it did not feel right. Truthfully, I did not know his story that Friday afternoon, but his mad surgical skills made up for his bedside manner and ultimately that’s the most important part. His plan was to implant port # 5 on my left side, but I warned him that the jugular had been an issue. The surgical crew prepped the left side, but when the ultrasound showed the jugular was not an option there, the entire crew switched up and prepped my right side. Once again, I floated through the procedure in twilight sedation, the surgery ending long before actual twilight, but the last procedure of the day. Port#5 was placed much lower on my chest to avoid the skin issues from #4. It healed quickly compared to the scar from #4 that was thick and angry-looking for weeks.
I had a new goal: wear out port #5 too.
You may have noticed the repetitive use of twilight sedation. I truly understood why an addict would mainline drugs. I once had dilaudid directly into my port and instantly I was high. Powerfully high, deliciously high. I understood the allure, but would never recommend illicit use of drugs to anyone in any way.
Just as I believed my soul was in the hands of God, my physical care on earth was often in the hands of physicians, surgeons, nurses, etc. I relied on them to ensure my body was best prepared for chemotherapy and immunotherapy.