Sixteen Months of Storms, Part 12

Horiana Grosu: As I mentioned, Lynette had been complaining of coughing and shortness of breath in September. The fluid on her lungs revealed by the October 31 chest CT seemed to give us a reason. We saw Dr. Horiana Grosu on November 2 as well. Dr. Grosu is illustrative of one of the things we liked best about MD Anderson and Houston. Houston is the most “diverse” city in the United States. During our early October visit, Lynette and I spent an afternoon at the Houston Zoo. In just a few minutes of sitting near the entrance we saw families of African Americans, Hispanic Americans, South Asians, Whites, and East Asians. Likewise, at MD Anderson, we encountered a Korean American Medical Oncologist, A Nigerian American research nurse, a Hispanic Social Worker, a scheduling specialist descended from slaves, a Jewish American neurosurgeon, two South Asian radiation oncologists and now a pulmonary specialist originally from South America. I strongly believe that our traditional openness to immigration from other countries is a strength of America. That such a diverse group of people came together to do what they could to keep Lynette alive supports my conviction. Dr. Grosu said that Lynette needed a thoracentesis. This is a procedure in which an instrument is inserted into the thorax to drain excess fluid. She also said we might need to insert a “drain” to allow for the regular draining of fluid. Again, since we didn’t know how long it would be before we’d be scheduled for the gamma knife surgery, I thought we might be able to have that drain inserted in Jackson.Dr. Grosu did the thoracentesis the afternoon of November 2. In a VERY uncharacteristic move, Lynette allowed me to begin driving home afterward.🙂 Since we got such a late start, we drove only as far as Lake Charles, LA that night. Lynette’s Dream Group was to have an overnight retreat starting about 1:00 on Friday, November 3. We got back to Harrisville in time for me to get Lynette to the person from the group who would drive her to the retreat site. Lynette wanted to bring along a fan to help keep air circulating near her face. This was a “life hack” she came up with deal with her shortness of breath. As a long term plan, this “hack” would last for only about three weeks. Lynette completed the retreat.She did not participate in the horseback riding that was a significant part of the retreat program, but she was glad to be with “her people” for that time. Sarah brought her back to the Harrisville area and went with her to a Fall meal at Rexford UMC. I attended the wedding of Lindsey Windham and Robert Myers from the Harrisville congregation that Saturday afternoon.The next morning, Sunday, November 5 was Homecoming Sunday at Harrisville UMC. Sarah was one of the featured soloists at the service. As it turned out, that was the last worship service the four of us would attend together.That Sunday evening, I was the scheduled speaker for a Simpson County Cluster worship service at D’Lo United Methodist Church. That service was to begin at 5:00. The Millsaps Chamber Singers were to have a concert at St. Phillips Episcopal Church at 7:00. Sarah REALLY wanted her Mama and me to attend. We figured out that we would JUST make it, if I didn’t talk too long and if we did not stay for “fellowship.” That was acceptable to the Cluster folks.Of course, Lynette was the driver for our trip to northeast Jackson. She received WAY fewer speeding tickets than she “earned” during her life.🙂 We made it before the concert began and Lynette (again) did not get a ticket. This was another of those (almost) “last” events, though none of us knew it.

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Sixteen Months of Storms, Part 11

Gamma knife: A gamma knife delivers a focused dose of radiation to a precise spot on the brain. A neursurgeon places a “halo” on the patient that helps guide the radiation oncologist in “aiming” the “knife.” (If there are any neurosurgeons and/or radiation oncologists reading this, please forgive this “layman’s” explanation). On Thursday, November 2, 2017, Lynette and I visited with a neurosurgeon and a radiation oncologist at MD Anderson to have the procedure explained and to give consent for the procedure. It was also explained that “gamma knife time” was in high demand. There would be a wait of at least a couple of weeks before the procedure could be scheduled. I knew that UMMC also had a gamma knife and thought it was possible we could have THAT procedure in Jackson.

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Sixteen Months of Storms, Part 10

Back to the clinical story: Lynette was scheduled for a CT and for an MRI of the head on Tuesday, October 31. She had had an MRI of the head in July of 2017. She didn’t like it. The procedure involves being “buckled in” to a device that holds your head still. This is necessary for “good pictures,” but Lynette is hardly the only person who finds this quite anxiety producing. This was a time when “Mother’s Little Helper” (valium) was actually necessary. I was confined to the waiting room and couldn’t provide the in person support I would have liked to.She weathered those two diagnostic procedures. The next day we had labs, an eye exam, an echocardiogram, and a visit with Dr. Lim scheduled. For reasons we didn’t ever quite understand, her visit with the ophthalmologist was VERY much delayed. I believe that one patient took up a large amount of time and Lynette, along with all the OTHER patients scheduled for that morning had to wait a LARGE amount of time. Eventually, we had to contact Dr. Lim’s office to tell her how badly delayed we were and why. We made it over to Dr. Lim’s office and had to go back to the ophthalmologist later. The echocardiogram was delayed also.Lynette signed the consent for being in the clinical trial when we arrived at Dr. Lim’s. We found out two things that would turn out to be VERY significant to the next six weeks. The head MRI had shown a small lesion on Lynette’s brain. Her brain had been clear in July, so this was new. The treatment of choice for this sort of lesion is radiosurgery done by gamma knife. Referrals to a neurosurgeon and a radiation oncologist were made. Also, the chest CT had shown that there was fluid accumulating near Lynette’s lungs. A referral to a pulmonary doctor was also made. It was explained to us that these two matters (which were presented as “hiccups”) would need to be resolved before we could begin the study medicine. Though we had planned to leave for home on the morning of Thursday, November 2, we stayed to see these additional doctors.

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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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