Sixteen Months of Storms, Part 9

A couple of notes about the “home front” while we were going to Houston. Lynette’ sister Guyanne Little Hargrove, the people of Rexford United Methodist Church, and the attendees at the south Rankin/Simpson County Charge Conference on October 29 shared generous gifts with us to help with lodging and meal expenses we had in Houston. The people of Harrisville United Methodist Church helped with meals for Luke while we were out of town as well. Luke, as some of you may remember, has an autism spectrum disorder. He has not ever spent the night by himself. We didn’t think that his coming with us to Houston was a good idea at all. Lynette’s sisters, Guyanne and Linda Little, stayed with Luke at our house in Harrisville while we were traveling. That helped our peace of mind tremendously and let us concentrate on Lynette and her medical needs exclusively while we were in Houston.

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Sixteen Months of Storms Part 8

o, we returned from MD Anderson on Thursday, October 4, 2017 with questions. We had a copy of the research protocol. Lynette had appointments with her UMMC doctors on October 19. We wanted to be sure that this was indeed our ONLY option for further treatment. All treatments have risks and toxicity, but this one had particular risks to Lynette’s heart and eyes, along with other potential side effects. We also had to wrap our minds around spending that much time in Houston over the next few months. Lynette’s doctors affirmed that this research protocol was in fact the last line of available treatment. As I recall, we still went back and forth, trying to balance Lynette’s desire for “time with my family,” with our goal of attending Sarah’s graduation together. Lynette finally made the decision to go ahead and complete evaluation for the trial, which would involve a CT and and MRI of her head. She was especially anxious about getting through the MRI of her head, as that is quite loud and involved lying still for an extended period of time. In addition to those scans, Lynette would also need an eye exam and echocardiogram. We made arrangements with MD Anderson to return and begin those evaluations on October 31, 2017.

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Sixteen Months of Storms Part 7

Before October 1, 2017, I had last been in Houston in the summer of 1977. Then, I had been part of the First Baptist Church Greenville, MS youth choir and I had no responsibility for driving or navigating. Lynette had never been to Houston. Navigating a new, VERY big, city, while also navigating MD Anderson was a challenge. I had long since learned to let Lynette do the driving most of the time, not because I’m a particularly bad driver, but because driving helped her feel “in control.” We found our motel, with the help of Google Maps and its GPS function. I navigated, while Lynette drove. She was anxious driving too, but she could live with that much anxiety. Fortunately, the motel offered a shuttle van to MD Anderson. Neither of us knew how large MD Anderson was or how many buildings it has. We got off the van at the “main” hospital, then found that our appointment was in a different building. Both of us had navigated O’Hare and Hartsfield/Jackson airports before, which helped a lot. MD Anderson is HUGE. Bora Lim was the medical oncologist we saw. She exudes confidence. The research protocol she wanted to enroll us in was a “chemotherapy, plus” protocol, the “plus” being the study medicine. We would have been in Houston several days a week for two months or more. Lynette began crying when the plan was explained to her. We had agreed that our goal was for both of us to attend Sarah’s graduation from Millsaps on May 5, 2018. We were willing to do a lot to make that goal, but neither of us were sure that was how we wanted to spend the next three to four months. Lynette said “I want to have time with my family.” We completed the initial labwork and scans for qualifying for the study, but Lynette did not sign the consent for enrollment that day. Both of us needed to think about it and we both wanted to consult with her doctors back at UMMC before we proceeded.

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Sixteen Months of Storms, Part 6

A couple of details about August and September 2017, before I tell of our trips to MD Anderson. A small church a few miles from Harrisville had its pastor (who was part time with them) leave to take a full time job in another state. Our District Superintendent Connie Connie Mitchell Shelton asked Lynette to step in. She’d have one Sunday morning sermon and some hospital visitation. The time and salary would not exceed what was allowed by her disability leave. Lynette was somewhat reluctant, but agreed to begin the first Sunday of August. The people of Rexford UMC proved to be a blessing to Lynette and to our family for the little more than three months Lynette was with them. Lynette had also started to have some breathing and coughing problems as her radiation treatments came to an end. The radiation oncology fellow working with Dr. Mangana ordered a Chest CT in mid-September. The results came back: No pneumonia, no bronchitis, instead it was “disease progression.” “Disease progression” is another of those medical terms, like “This is a very aggressive cancer” that doctors understand better than we “layfolk” do. The next two and a half months would fill in their meaning.

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16 months of Storms 5

Having completed our move to Harrisville, it was time to transition doctors for Lynette. She had her final appointment with Dr. Hightower on June 30, She was also transitioning to a new type of infused chemotherapy. Her first treatment under that protocol was July 6 in Gulfport. We transitioned to the care of Dr. Barbara Craft at the University of Mississippi Cancer Institute. The outpatient care for UMMC cancer patients is at the site of the old Jackson Mall. There was a time when a visit to the Jackson Mall was a highlight of any trip to Jackson for us Greenvillians. That Mall was also a place we visited often when we were Millsaps students in the late 1970s-early 80s. We bought Lynette’s wedding dress at the Gayfers in the Jackson Mall in 1982. It was interesting for a site we had known for different things became a place of treatment for us. Dr. Craft continued the chemotherapy protocol and ordered new scans. On Saturday morning, July 29, Lynette began to feel that her constipation was becoming unmanageable at home. We went to the UMMC ED, and Lynette was admitted. After numerous interventions and the VERY caring ministry of one nurse, the constipation was resolved in the late night/early morning hours of July 29-30. The medical oncologist on call that weekend was Dr. Natalie Sheehan. After a lot of detective work, Dr. Sheehan determined that the anti-nausea medicine Lynette was taking prophylactically had caused the constipation.Dr. Sheehan now became a doctor we saw as often as we saw Dr. Craft. Following three treatments under the new chemotherapy protocol, the scans showed that disease was still progressing. Dr. Sheehan and Dr. Craft recommended focused radiation to address a lesion on Lynette’s sternum. Now Dr. Sophy Mangana entered our lives. Dr. Sheehan and Dr. Craft told us that the conventional therapies available to Lynette had come to an end. They repeated that sentence I did not yet fully understand. “This is a VERY aggressive cancer.” They recommended that we contact MD Anderson to see what experimental therapies were available. We continued radiation through August to the middle of September, but also made our first contact with MD Anderson. An appointment at the Nellie B. Connally Breast Center at MD Anderson was made for Monday, October 2.

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Sixteen Months of Storms 4

I mentioned a couple of posts back that Lynette went on disability leave through the United Methodist Church’s Comprehensive Protection Plan beginning January 1, 2017. St. Paul very generously kept her on partial salary through the end of June. It was clear, though, that someone else would need to take over the work that Lynette had been doing for St. Paul.On one of the Sundays in January (I don’t know if it was the 15th or 22nd) Lynette and I went to pack up her office at St. Paul, so that the person succeeding her could move in. There was a certain sense of “finality” to that act. The treasures of 29 and a half years of ministry were in the boxes we packed and moved that day.On a Sunday in February (again, I can’t remember the specific one) St. Paul had a reception for Lynette to thank her for her ministry there and for her to thank them for their support. The necessity of saying “Thank You” and “Goodbye” was never particularly theoretical to me, but I will always be quite grateful for that day.The appointment process moved faster than I was used to during 2017. I was notified in late February that I had been appointed to Harrisville United Methodist Church in northern Simpson County. “Announcement Sunday” for that year was the first Sunday in March. Sarah’s Junior Voice recital was that same Sunday. I had (as was allowed) made that appointment public after the close of morning worship. Unfortunately, Sarah found out about it by reading Facebook, rather than by our telling her face to face. I hope she’s forgiven us.

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16 Months of Storms 3

The Spring of 2017 was relatively “unremarkable.” We were processing our move to Harrisville, but things went smoothly on that front. One memorable event came on Maundy Thursday. Jack Lofln, my first District Superintendent and father of my Millsaps and Elders Ordination classmate, Vicki Loflin Johnson, had his funeral that day. Lynette and I attended. The close of the service included the robed Conference clergy in attendance singing Jack’s favorite hymn, “Jesus, Keep Me Near the Cross.” I found myself unable to sing through my tears as the song was sung. Certainly, Jack had been important to me, but, in retrospect, I think there was an additional death I was grieving, though it hadn’t happened yet. Lynette’s nephew, William Hargrove, graduated from Samford University on the second Saturday of May. The four of us traveled to Birmingham for the event. I got a chance the next day to make pilgrimage to 16th Street Baptist Church and to Kelly Ingram Park. Lynette, Sarah, and I looked forward to Sarah’s graduation from Millsaps the NEXT May. We all PLANNED to be there.Annual Conference was a little strange, as Lynette was announced as being on Disability Leave, rather than under appointment. There WERE some happy events. Sarah Jo Adams-Wilson, who had been a high school youth in Lynette’s Petal Church, was ordained Elder. We got a chance to celebrate that milestone with her and her family. We looked forward to the expected Commissioning of Lynette’s sister Linda Little at Annual Conference 2018. My appointment to Harrisville was “fixed.” Between Annual Conference and moving day, we traveled to Greenville for my 40th anniversary High School class reunion. It was VERY good to see that group of folks again AND to make “pilgrimage” to the building where so many pivotal events in my life happened from 1975-77. I also took Luke and Sarah to see the houses where I lived during my Greenville years (1971-81) and the church I attended. While we were in the Delta, we also went to Greenwood. Lynette showed the children the house she had lived in, her elementary school and the church where Lynette and I were married. We also had lunch at the Crystal Grill. I’m especially grateful that the four of us had THAT time together. We endeavored to cull as much of our “stuff” as possible before our move to Harrisville. Nevertheless, we loaded the largest U-Haul Truck available as full as it would go, and found we still had stuff left over. Ultimately, three ever smaller trucks were necessary to complete our move. We also engaged a specialist to move our THREE pianos (Another long story)

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Daddy, I Can’t Wake Mama Up

The night of December 11-12 was quiet. Lynette did not wake me up in the night. When I woke up that morning, she appeared to be sleeping peacefully. I decided to let her sleep and began my morning activities. About an hour later, Luke came downstairs and uttered the worst words ever: “Daddy, I can’t wake Mama up.”

My first response was “it’s too soon!” The nursing evaluation of the previous day certainly hadn’t indicated any imminent distress. We were getting ready for at least several weeks of at home care. Sarah was on her last day of exams at Millsaps. We were expecting her home later that afternoon. I called the hospice nurse, then began calls to Sarah, Lynette’s sisters, and my family.

The first person to arrive was the hospice home health aide. She examined Lynette and said “She’s expired.” That’s always struck me as an exceptionally odd way to put it. It implies Lynette had passed her “sell by” date. That definitely wasn’t true.

Lynette’s friend Elizabeth was on her way from Ocean Springs. Our District Superintendent Connie Shelton was on her way from Jackson. They arrived soon, as did the hospice nurse. The nurse began doing the necessary paperwork and notification of the coroner. I called Chancellor Funeral Home. Lynette’s friend Fred worked with Chancellor and he and Bill Chancellor arrived. One thing I’ll always remember is that as the folks from Chancellor were leaving with Lynette’s body, our dog Sam, who had otherwise observed the comings and goings quietly, suddenly began barking. He was going to miss his Mama too.

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Three Years On

December 11, 2017 was Lynette’s first full day at home on hospice. My bed was just feet away from Lynette’s newly installed hospital bed. Overnight, she had called me to assist with a personal hygeine issue. She was disturbed that this was now part of my care for her, but I was not at all concerned about it. Would have done it for months, if necessary.

The day dawned fine. There would be intake visits from Hospice Ministries personnel. The first was the Social Worker. She interviewed Lynette and me about the information she’d need for her assessment. At a certain point, Luke came downstairs to see what was going on. He got into the “bubble” of the social worker, but quietly so. She was startled and exclaimed. It was a moment of unrestrained laughter for Lynette and me, and, eventually, for the Social Worker. Later that morning the hospice nurse/case manager came by. She did her assessment. We discussed our concerns about the two drains Lynette had to drain fluid from her lungs. I had spent the previous month being anxious about my competence to do the drains. The nurse understood my anxiety and did the draining herself while she was there. She agreed that Lynette would need a home health aide five days a week. The home health aide came and completed a bath, gown and linen change for Lynette. The nurse also left the “emergency” pain and breathing support kit for my use.

We had several other visitors. One of the people from Rexford, the church Lynette had been serving in disability came by. She brought some vegetable beef soup and gave an extensive “blow by blow” on the previous day’s worship service. A man from Harrisville came by and brought some of his famous peanut brittle. A couple from St. Paul in Ocean Springs also came by. The clear emotional and spiritual impact of Lynette’s ministry over the years was made obvious, again.

Luke also enjoyed some time sitting by Lynette’s bed talking to her about video games and professional wrestling. My patience for such conversation is limited, but he now had his favorite audience back and he took full advantage of it.

I was a room away doing some work on the computer and listening to “favorite Christmas songs written and perfomed by Jews.” Sarah was at Millsaps trying to finish up exams and papers, though she did have time to look for some clothes. She sent pictures of some of her choices. I showed them to Lynette, and she smiled.

One thing Lynette REALLY wanted was some ice from Sonic. In the mid-afternoon, I judged things were sufficiently under control at the house that I could leave Lynette in the care of Luke and of Sam (the dog). Through all the comings and goings, Sam had observed the visitors, but no longer immediately greeted them with barking, as he had when he was younger. I stayed close to Lynette through the day.

I went to the grocery store in Florence (about 20 miles away) to get some supplies for personal hygeine. I also went to the Florence Sonic to get a cup of their ice. Lynette was VERY happy to have the ice, which would keep her lips and mouth moistened.

We watched the winter finale episode of The Good Doctor, about a surgical resident with Autism Spectrum Disorder. We both sometimes wondered if the writers had been following us around during the years we were raising Luke and writing down the things he said.

I kissed her goodnight and told her I loved her. She said she loved me too.

In this year of Covid-19, I’m aware of how different this whole experience could have been. Would I have been allowed to accompany Lynette on her doctor visits and chemmotherapy appointments? Would she have had to navigate the various parts of MD Anderson by herself? Would my set of ears not been there as she tried to process her options? Would the “Army of Ladies” who sat with Lynette at St. Dominic’s been allowed to do so? Would I have even BEEN in the room when they asked about putting her on a ventilator? Where would I and my children have been when I told them we were discontinuing efforts at cure? On that day at home, how would visits from hospice personnel have been arranged? Could those friends and church folks been able to visit. I think we know the answers. As horrible as that week to ten days was, it would have been immeasurably harder with necessary Covid-19 restrictions. There surely are families with cancer patients trying to navigate the same terrain now.

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The anonymous town that was the model for school desegregation

Source: The anonymous town that was the model for school desegregation

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