Chapel Hill--A Difficult First Year

 Fourth Monday of Advent

Monday is Faith Journey Narrative Day. We pick up in January, 2011. We expected this first year of my retirement to be a joyous one. We did not expect the major health difficulties Marianne encountered. Almost as soon as we got here a squamous cell carcinoma appeared on Marianne's nose. It grew rapidly. I could see the growth increasing daily. In early February she had it diagnosed and removed through Mohs surgery. She then had to have plastic surgery to get her nose to look normal again.

We had thought we would spend our whole summer of 2011 at our place in Manteo in the Outer Banks. There were two problems, one minor, one major. In June of 2011 a peat fire began on the mainland across the sound from the OBX. It proved almost impossible to put out. As one firefighter put it, "The ground is on fire." Peat makes up most of the ground there. In Scotland they dig up their abundant peat and use it to heat homes. They also use it to smoke their malting barley to make Scotch whiskey (or as they would spell it "Scots Whisky"). Burning peat makes a lot of smoke. The OBX was so smokey that summer that it was under orange or red alert the whole summer. Rains put out the fire in September. 

That wasn't our big problem however. In July Marianne was diagnosed with breast cancer. We would not get to the beach again that year. Her treatment was at the Lineberger Center in UNC Hospital. The process seemed odd to me, but we assumed the doctors knew what they were doing. They were going to do a lumpectomy. What seemed strange to me was that they wanted to do the process in this order: first, a surgical biopsy, then a gap period of about three weeks, then eight weeks of chemotherapy, then another three week gap period, then the lumpectomy surgery itself, then a gap period, then four weeks of radiation. I had always heard of this process as being the surgery first, then the chemotherapy and radiation. 

The surgeon botched the surgical biopsy. Although she didn't use the word "botch," she said that she had made a mistake and the biopsy would have to be redone. I was grateful for her honesty. I should stress, as the medical team stressed to me, that the biopsy was indeed surgery. It was general anesthetic with 60-90 minute surgery. After the botched surgery Marianne got an infection. She would be in the hospital at Lineberger Center for almost a week. The whole mess delayed our process about a month. She would have to recover from the botched surgery and the infection before they could redo the surgical biopsy. the redo was successful. The diagnoses was as expected. 

After the biopsy, I was tasked with packing, unpacking, and repacking the surgical wound once a day. The first time I did it was probably the most nervous I have ever been in my life. I'm ashamed to say this, but I've never even had a class in first aid. The wound was very deep. I started pulling out the folded, and refolded many times, gauze. It just kept coming and coming. When it was completely unfolded, I gazed inside the wound. I think it was the first time in my life that I had seen raw human flesh. I was praying a lot. I carefully repacked the wound, folding the gauze over and over, one fold at a time. Then I patched over at the end. By about an hour or two later I was fully convinced that I had not killef her or done her any terrible harm. I could breathe again. It was a little easier the next day, then the next. Within a couple of weeks it was simply a morning routine. Gradually the wound healed. Each day it got smaller and less deep until it was fully healed in about a month.

Then came the chemotherapy. That was the worst for her. The strong anti-nausea drugs worked well. She never threw during the whole four weeks of chemo. There were, however, other problems. The treatments were once every two weeks. For the first few days afterward, she would feel tired but ok. Then would come a week when she could barely move. We were told that if her fever went over 100.5, to bring her to the Emergency Room. It did this every time, usually late at night. We made three ER trips over those weeks, each of which resulted in a five day stay in the hospital. She had an infection each time. Each time they would do all sorts of testing and blood work to find the infection. They never found it. When she had the infection, her white cell count would go down to 2 or 1. Once it went to zero. White cells fight infection. Gradually they go back to normal and the fever diminishes. I was told by an oncologist later that they hardly ever find the cause of these infections, but protocols require them to do all the testing and to keep the patient in the hospital until the fever subsided. 

Our first ER visit was by far the worst. They were short on space. Her bed was in a storage room that included several trash receptacles. Periodically nurses would come in a dump bags of what I assumed were used medical stuff into the trash cans. The doctors and nurses all seemed very young. One young doctor did an unspeakably painful procedure on her. When we told Marianne's oncologist about it, he was furious. The procedure was dangerous and unnecessary. He immediately called the young doctor and severely reprimanded him. There were other problems in that visit. They couldn't get an I-V into her. She's a tough stick anyway. It was not until she was admitted and in a hospital room several hours later and several nurses later that they finally got the I-V into her. They also tried to do an ultra-sound but fdid not come up with any results clear enough to record.

The next two late night 100.5 temperature ER visits went much better. I should have known this before, but I learned a lesson in patient advocacy that first night. Like the first time, these next two times the ER admitted her to the hospital , and the doctors spent five days monitoring her and trying to find and not finding the source of the infection. She got better and was discharged.

The fourth time this happened, we decided not to go to the hospital. The temp was barely100.5, and we knew it would be four or five days in the hospital, no finding, and discharge. The fever was down the next morning. A week or two later we saw the oncologist. He congratulated Marianne on making it through that last round of chemo without getting a fever the next week. I told him that she actually had the fever and we didn't go to the ER. Whoa! He rebuked us about as hard as he had the young doctor who had done the unspeakable procedure the first ER visit. He told us she could have gotten sepsis and possibly even died. We decided to follow his instruction if it happened again.

After chemo, we had a three week break before surgery. The break was over Christmas, which worked out well. Then came the surgery, which went off with no problems. Then came four weeks of radiation, five days a week. As horrible as chemo had been, radiation was a breeze. I know some people have had trouble with it, but Marianne hardly any difficulty at all. We finished up in late February, 2012, the process that had begun in July, 2011.

I spent many days at the Lineberger Center at Chapel Hill. Speaking from a caregiver's point a view, it was a very good place to be. They were building a permanent labyrinth in front of the Lineberger Center. They completed it while we going through these months. I walked it many, many times. It gave me great comfort and peace. I was also grateful for the kindness of the doctors and nurses there. I was also grateful for all frappacinos and lattes I had at the Starbucks in the Lineberger Center. 

 

We never filed any complaint about the first surgical biopsy. Mistakes can happen. Things did turn out well in the end. That surgeon was gone from UNC by the time of Marianne's follow up visits in 2012. Marianne is now eight years out and had no recurrences. We are grateful to God. The next year our sister-in-law had a mastectomy. No radiation, no chemo, no reconstruction. She was fine in a couple of weeks and has been fine ever since. Marianne has had a number of long term negative effects from the chemo, none of them major,  but all of them annoying. Marianne has said that if she had it all to do over again, she would have had the mastectomy.

 

Next Monday, I'll talk about finding a church in our move to Chapel Hill. 

Faithfully,

Christian