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Cancer Journey Part 10
One thing I haven’t addressed is the Clinical situation we were in during the fall of 2016. From the very beginning, we were told that there were multiple tumor sites, including the liver, sternum, and lymph nodes, in addition to the left breast. I didn’t ask “What stage is the cancer?” nor did Lynette, but that is Stage 4. Dr. Hightower would look at Lynette’s scans and say “We’re seeing progress on the sites.” “These sites are smaller.” “This area didn’t light up on the last scan.” The word “remission” was never uttered. Dr. Hightower always came across as caring and encouraging, but she never told us anything that wasn’t true. Another thing that was happening during this time was that Lynette was not ALWAYS anchored to the couch or bed. She continued her monthly trips to Jackson for Dream Group. She went to worship at St. Paul several times. She went to the Stewardship Dinner at St. Paul in October at which Bishop James Swanson spoke and attended his seminar on preaching for the District Clergy the next day. She was barred from actually going to hospitals or nursing homes, but tried to keep up with some of the people with whom she had established relationships. Two days before Thanksgiving 2016, we met Lynette’s sisters and nephews at a residential hotel in the Jackson suburbs for an early Thanksgiving dinner. Lynette did a tremendous amount of the buying and transportation of the food for that dinner. I’m sure she was worn out, but not so much that she was unable to enjoy the time with her family. We went back to Gulfport on Wednesday and my best memory is that Lynette and Sarah cooked a “traditional” Thanksgivng dinner for the four of us. It had been my family’s practice to gather every other Christmas season in the city where one of we five children live. That gathering had been in Gulfport in 2014. The “hosting” child and family has a great deal of work to do. At my father’s 80th birthday observance in July 2015, we had agreed that, perhaps, a summer gathering was better, especially because my sister Eileen and I are both clergy.Then, of course, Lynette’s cancer diagnosis entered the system. Eileen called me, offering to completely coordinate a gathering in Gulfport the last week of December. I certainly was NOT up for hosting again, but she was sure she and others could pull things together. So, it was that EVERYONE came to Gulfport December 27-29. My parents had three children (I’m the middle of those three) and my father and mother each had one child from their second marriages. My brother has two children. I have two. Eileen has one. Melody Altman Mahusay has three children and Jill Edwards McArthur has three. That is, as my Grandmother Hamilton might have said, “A Gob of Folks” to be in one place. Eileen found a large house about a block from the beach to be the “Central” spot. Everyone came and everyone had a seat at the table. It was a great gift even at the time, but it’s even more special in my remembrance, since it turned out to be the last time ALL of those people would be together in this life. More “stuff” happened in 2017, but that wraps up the highlights (and lowlights) of 2016.
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Cancer Journey Part 9
Some more memories of Fall 2016: Lynette became a part of a “Dream Group” in 2007, a group of women who processed their dreams under a Jungian rubric. This became her primary “outside of church and family” community. They met monthly and had occasional retreats. Lynette continued to attend the monthly meetings of the Dream Group throughout our time on the Gulf Coast. Her cancer diagnosis and treatments did not change that one bit. She continued driving to Jackson once a month. That group was not MY group, of course, but I did what I could to make sure she made the meetings. The women of that group became her “Army of Ladies,” who stepped up to help us out during the crisis of her final hospitalization. The story of that crisis is for near the end of this saga, but I want to give a shout-out to that “Army of Ladies” now. Lynette was a “fierce friend,” who also MADE “fierce friends.”
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Cancer Journey Part 8
It’s been about a week and a half since I last shared memories of Lynette’s cancer journey. For the late summer and fall of 2016, the protocol for her was chemotherapy infusion every three weeks. A week after infusion, she’d have lab work done and we’d have an office visit with Dr. Hightower. After every third infusion, she’d have a scan. One obvious result of the chemo was that the very angry looking discoloration of her left breast began to disappear. That was certainly a good thing. Along with the positive developments, her appetite was affected. I remember one Saturday that I made five or six trips to the Rouse’s near our house in an effort to find SOMETHING she would eat. She was on anti-nausea meds, but she often had little appetite and food did not taste the same to her. We worked on that for the whole sixteen month journey.Also, of course, her hair began to fall out. Lynette had very curly brown hair. Cosmetologists always LOVED to experiment with it, while she was reluctant to let many people touch it. We found someone she trusted to cut her hair in 1996 and Lynette stuck with her for the rest of her life. As it became clear that her hair was coming out, she decided to go on and shave her head. Sarah was the one who actually wielded the razor. While I don’t think it was particularly traumatic for Lynette, that particular day WAS traumatic for Sarah. Lynette had read and heard of people who were able to continue to work while doing chemotherapy and her intention was to go back to work fairly soon. The Herceptin was, I think, a more powerful chemo drug than those some other folks take. She was more wiped out than she was expecting to be and simply was not able to go back to working the way she was used to. Also, one of her primary areas of ministry at St. Paul was Congregational Care. That meant she was the one who did much of the shut-in and hospital visitation. A sort of crisis day came on the day she was scheduled for a visit with Dr. Hightower and a St. Paul member was a patient in the Memorial ER. She asked Dr. Hightower if she could visit him in the ER. Dr. Hightower said “ABSOLUTELY NOT!” The chemo was compromising her immune system and spending time in the germ factory that is a hospital emergency department was the worst thing she could do.In early December Lynette talked this over with our District Superintendent. He recommended she apply for Disability through the United Methodist Comprehensive Protection Plan. That process was remarkably pain free (comparatively speaking) and she was approved for disability starting January 2017.I have some other comments about the Fall of 2016, but will share them in another post.
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Cancer Journey, Part 7
Thursday, August 25, 2016 was Lynette’s first day of chemotherapy. I found out much later that the particular TYPE of breast cancer Lynette had was HER2 Positive Inflammatory Breast Cancer. The MAIN chemo drug she was to be on was Herceptin (Never saw it written out, but I can’t imagine any other way to spell it). In the taxonomy of breast cancers, I’m told that’s a bad kind, but not as bad as HER2 Negative.
The night before she was to begin, I filled prescriptions for steroids and for anti-nausea medication..Herceptin can engender allergic reactions, which the steroids were supposed to address. We (I) did well remembering to administer them at the right times.
Lynette was, at this time, still just a few days post-two surgeries. She had a Home Health nurse from Camellia Home Health who was coming regularly for wound care and dressing changes. I wish I could remember her name, but she was a great blessing in a hard time.
The first day of chemotherapy turned out to be VERY long. All the chemo patients for Memorial received treatment in one big infusion room. For the sake of patient privacy, only patients and Memorial clinical staff were allowed in the infusion room. That put me (and others attending to Lynette) in the waiting room. Pat Kornegay and Gina Burrus from Mississippi City and Elizabeth Galloway from St. Paul “spelled” me during parts of the day. I needed to take Luke to the day center he attended and pick him up.
At this point we had not yet told Luke his mother had cancer. HE can often be remarkably UN curious about what’s going on around him. We still were not sure what his response would be. By the time it was time for me to leave to pick him up, Lynette was not finished with her chemo. When I picked him up, he asked where his Mama was. I said “She still needs some more medicine.” “What KIND of medicine?” Is it chemotherapy? Now, I may withhold information sometimes, but I never directly lie to my child. Yes. “Does Mama have cancer?” He’s sometimes incurious, but he’s not stupid. Yes.
“Why didn’t you tell me?” We weren’t sure how you’d respond. Of course, that meant the FIRST thing Lynette would face when she got home was a disappointed son. The thing is, she always knew how to talk to him and let him know how much she loved him. He confronted her, but they were friends again almost immediately.
The Herceptin protocol was infusion every three weeks, with a lab and office visit with Dr. Hightower one week after infusion. This would go on for six treatments-meaning the rest of the summer, fall, and early winter. I’ll address how Lynette coped, how the rest of us coped, and what happened during that time soon. (Possibly longer from now than tomorrow.).
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Cancer Journey Part 6
An excursus on chemotherapy: I have limited time this morning to tell OUR story of beginning chemotherapy, but I offer these “non-scientist” thoughts: For over 50 years, the three ways to deal with cancer have been 1. Cut it (surgery) 2. Burn it (radiation) and 3. Poison it (chemotherapy). Not many know that chemotherapy was discovered by Nazi scientists. They were looking for more effective poisons and poison gasses for “The Final Solution.” By accident, they discovered that some of the poisons with which they were experimenting also killed cancer cells. Both radiation treatment for cancer and chemotherapy were “peaceful” uses of former weapons of war used in World War II.The limits of ALL three forms of treatment are related to the nature of cancer itself. A surgeon may come out of an operation and say “We got it all.” He/she is not lying. He/she means “I got all I could see.” Any cancer cells that were “hiding” from the best available imaging can begin growing and reproducing again.Likewise, the radiation oncologist says “We treated all the sites.” He/she means “The imaging shows no more cancer.” Again, cancer cells “hide” and may begin reproducing.Chemotherapy kills cancer cells. It may kill MOST of them. A FEW may have the capacity to resist the poison. Those may begin to reproduce and THEY are resistant to the medicine that worked before.Doctors know this. They ALSO know that our confidence that the treatments we are taking can be as critical to our recovery as the medicines and treatments themselves. They will often come across as COMPLETELY confident. They aren’t “lying.” They are doing their part to help us recover. SOMETIMES, surgery is completely successful. SOMETIMES radiation is. SOMETIMES chemotherapy is. A patient who lives five years after diagnosis is considered “cured.” The thing is, the human body is a mystery only partially understood even after centuries of study.
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Cancer Journey Part 5
August 21, 2016-On this day two years ago, Dr. Olivia Hightower came into our lives. She was the Medical Oncologist the surgeon had said he would be consulting. The biopsy taken the previous day would still have to be examined by a pathologist, not really to determine IF it was cancer, but what specific TYPE. Imaging scans also needed to be scheduled. The surgeon was prepared to insert a chemo port the following day.
Dr. Hightower said “This is a very aggressive cancer, but this type often responds to aggressive treatment.” It would take me sixteen months and the repetition of the sentence “This is a very aggressive cancer” by SEVERAL doctors before I understood what they were saying.
Another immediate crisis was that Fall Semester classes at Millsaps College were to begin on Monday, August 22. Sarah needed to leave for Jackson that Sunday afternoon. “Mixed emotions” barely begins to describe how Sarah was responding. She did finally pack up her car and drive north. We found out later that she had diverted to Brookhaven, where her then-boyfriend lived and made it only that far that night. The campus ministry situation was in flux that year because the College Chaplain had left in July and a new one had not been named. I contacted Paige Swaim-Presley and Emily Sanford to ask them to watch out for Sarah. They agreed.
Lynette’s chemo port was placed on Monday, August 22. Dr. Hightower would be ready for her to begin chemotherapy on Thursday, August 25. During the procedure to insert the chomo port, my phone rang. It was the repair shop, giving me an estimate on the transmission on the Altima. How things had changed in just three days!
I told the owner about Lynette’s cancer diagnosis. He was understanding and said he would be patient about my getting back with him. The transmission ultimately was replaced in July 2017,
We gave Sarah the option of withdrawing from Millsaps for the Fall Semester. She decided she would stay. Her friends and support system were at Millsaps. We later found out she took 23 semester hours that fall. She earned her usual 4.0 Grade Point Average.
Tomorrow, I will talk about the beginning of chemotherapy and how Luke found out his mother had cancer.
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Cancer Journey Part 4
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I somehow made my way back to Lynette’s hospital room to wait for her. I there let loose with something I ALSO had encountered many times from the other side: Shrieking, loud, inconsolable crying. One might even call it “Page the Chaplain” crying. I kept myself in Lynette’s room, but I knew I was disturbing the nurses and the other patients and family members. I decided they were just going to have to be disturbed. Fairly early in this event, Lynette’s friend Elizabeth DID come to her room. I managed to get out the words “Inflammatory Breast Cancer.” I didn’t want Elizabeth or anyone else in the room then. Elizabeth positioned herself at the end of the hallway. I had previously been chided by Lynette’s sister Linda for not notifying her when Lynette had an episode of chest pains (that turned out to be nothing). At some point I contacted Linda. It turned out she was visiting friends in Petal, just 60 miles from Gulfport, instead of the 200 or so miles she lives away from Gulfport. She was soon on her way to Memorial.I’m pretty sure the surgeon must have told Lynette what her diagnosis was, but she was sedated from surgery and recovery, so her outward response was not as “demonstrative” as mine. She returned to the room. I needed some time with “my person.” Meanwhile, it was also Saturday afternoon and we were both United Methodist pastors. I don’t know if Lynette was on the St. Paul preaching schedule for August 21, but I definitely was scheduled to preach at Mississippi City. I contacted my District Superintendent, then Rick Brooks at St. Paul, then contacted my lay leadership at Mississippi City. They knew they’d have to handle Sunday without us.One MAJOR issue Lynette and I needed to settle was how and when to tell our son Luke about the diagnosis. Luke has an Autism Spectrum Disorder and his emotional responses are unpredictable. We decided not to tell him right away and to seek some counsel from other persons knowledgeable about autism before we did.Luke and Sarah came up to the hospital to eat supper with me. By now, both Elizabeth and Linda were with Lynette. I found a way to non-verbally confirm to Sarah what the diagnosis was. The three of us then went up to visit with Lynette. It didn’t take long for Luke to get ready to leave. I took him home, leaving Linda to spend the night with her sister.Thus ended the second worst day of 2016.
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Cancer Journey Part 3
Two years ago today, I woke up and checked with Lynette and Sarah by phone. We decided I should go ahead and cook Luke his usual Saturday breakfast of bacon and waffles. I did that and sent an email to my family explaining that Lynette had an abscess on her breast that a surgeon was to look at. I got to Gulfport Memorial before the surgeon arrived. It’s possible that Lynette’s friend Elizabeth was also at the hospital when the surgeon arrived. He examined her. He asked if her breast was hurting. She said no. The surgeon said “If this were an abscess, it would be hurting a LOT. I suspect this is Inflammatory Breast Cancer.” “Inflammatory Breast Cancer” was a new phrase to me. It’s one of those phrases that can’t really be taken back once spoken. He said “I’ll have to go in to see for sure, and I’ll take a biopsy, but that’s what I think.” Consents for surgery and lab work were signed.I know for sure that I went by myself to the surgical waiting room, after accompanying Lynette as far as I could toward the OR. Sarah went home.I was the only family member in the surgical waiting room that Saturday morning. I remained hopeful that we were dealing with an abscess.After what I’m sure was not a REALLY long time, the surgeon came to find me. He said “I was really hoping I was wrong, but I’m certain it’s inflammatory breast cancer. There was no infection to be found. There is too much there to be dealt with surgically. We’ll send the biopsies to the lab, but I’ll be contacting a medical oncologist to talk with you.” I was a hospital chaplain for eight years and a hospice chaplain for seven more. Those were all terms I knew. The diagnosis was one I’d heard in some form or other many times. I had had church members who heard the same news. My own mother had heard similar news. Even THAT was not the same as hearing it about “my person.”
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Cancer Journey, Part 2
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We arrived at the ER at Memorial Hospital in the late afternoon. I don’t recall that there was much delay in getting Lynette back to a room. The nurse who took us in was quite insightful. She pronounced Lynette “Super Sweet.” At some fairly early point, both the nurse and the ER doctor saw Lynette’s abscess. I saw it too. It was fairly gruesome looking. I knew how much stress Lynette had been under at St. Paul-Staff tensions, tensions between the Downtown and East Campuses, financial challenges, trustee-related challenges, etc. I thought an infection had gotten out of control, due to stress and Lynette’s well known habit of putting EVERYONE and EVERYTHING ahead of herself.
The ER doc said he would need a surgeon to look at the abscess. He admitted her for overnight. I called Sarah to bring herself and Luke up to the hospital. We figured out something to do for supper, though I can’t remember what. I don’t do well sleeping on hospital guest couches. Sarah agreed to spend the night with her Mama and I took Luke home. We knew the consult for the surgeon was in. Lynette was to be NPO after midnight, so that surgery could be done the following morning, which seemed necessary.
The next day was the second worst of 2016.
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Cancer Journey, Part one
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Two years ago today, my concern was getting our 2011 Nissan Altima from Pat Peck Nissan in Gulfport to a repair shop. The transmission was out. If you’ve ever had to replace a transmission, you know you might just contemplate buying another car. The repair shop had quoted me a price on a rebuilt transmission that was significantly less than the price Pat Peck had quoted me on a new one. I had gotten the car (by AAA towing service) to the repair shop, left my number with the owner, came home to talk with Lynette about what we might do the rest of the afternoon. She told me that she had had an abscess on her left breast for several days that was getting worse. She thought we should go to the Memorial Walk-In Clinic near our house to get it checked. We did that. She showed the abscess to the nurse practitioner on duty (but not to me). The practitioner said we should go to the Memorial ER. We did. A journey no one wants to take was beginning.
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