observations on life so far: February 2010

November 16, 1991
I had arranged a surprise trip to New Orleans for his 30th birthday and had secretly made plane and hotel reserva-tions there. I was so excited; neither of us had ever been to New Orleans before and I was looking forward to a change of pace from our hectic lives. Jay was a chief resident in the neu-rology department at the University of Texas Southwestern Medical Center (UTSW) in Dallas and I was a receptionist and sometimes writer in the Business News section at the Dallas Morning News.
My boss and Dallas Morning News Business News Editor, Cheryl Hall, and several other writers familiar with the Big Easy, had eagerly given me advice on where to eat, stay and what to do while in town. The day before our departure, I was busily getting ready and had taken a half-day off at work. When I arrived to our little Oak Lawn apartment, I was sur-prised to see the light on the answering machine flashing with a numeral 2 in the little readout window. We seldom received phone calls and I wondered who could be leaving us messag-es?
Beeep! “Lynne, this is Jay. I’m in the hospital at Zale Lipshy. I have a brain tumor and am in the hospital in room. . . . Would you mind please coming and bringing my dop kit with you?”
What was that? I played the next message: “Lynne, this is Jay again (as if I couldn’t recognize his voice). I’m still in the hospital at Zale Lipshy University Hospital at Parkland. Would you please bring my stuff with you when you come? I’m in room . . . .”
I couldn’t believe my ears! Was he serious? We were supposed to go to New Orleans the next day for his birthday! It was supposed to be a surprise! How could he get a brain tu-mor? How could he just tell me he had a brain tumor on the answering machine? What in the world was going on?
“Oh, God, please don’t let this be so!”

*****

We met in April, 1980 at his senior prom. We were both students at Grove High School in Grove, Oklahoma, a small, lakeside community in Northeast Oklahoma. I was a sopho-more and was thrilled to be invited by another senior and one of Jay’s best friends, Charles Brower. I had not met Jay until that night, but I knew both of his younger sisters very well and even sat two seats away from his middle sister Joni when we played in the band. I was not aware of it, but Jay sat just two rows behind me every morning in band where he played the trombone.
We had a delightful time at the prom, and several of us left together to hang out. After a few minutes of discussion (op-tions on activities in a small town were limited) we decided to go to the Skeeley house, which was an old abandoned house on the prairie a few miles from town. It was, of course, said to be haunted and was situated out in the woods.
As we approached the house, one of the boys jumped out from the trees to scare us and the rest of us began running. I happened to be walking next to Jay, and all at once, running; and while running, we began to hold hands. It just seemed like a natural action and when we stopped running, our hands let go.
Two weeks later, after securing assurance from Charles that we had only attended the prom as friends, Jay asked me out on a date. That date led to a subsequent nine year, long-distance courtship.

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After his graduation from high school, Jay attended Northeastern Oklahoma A&M College in nearby Miami. He entered college with no real goals, but knew that, according to his ACT scores, he excelled in science. So he took some science courses and liked them. While at NEO, he was fortunate to have an instructor who saw his potential and encouraged him to consider medical school. He graduated two years later with honors, and a plan to attend the University of Oklahoma in Norman.
Jay arrived in Norman in the fall of 1982, and settled in-to the rigors of pre-med and OU football. Two years later, he graduated with a 3.95 GPA , a Phi Beta Kappa key and a spot in the University of Oklahoma School of Medicine’s incoming class of 1988.

While Jay was in Norman, I had entered Southern Me-thodist University in Dallas, and we spent many hours on the telephone and summers together in Grove. After finishing my degree, I moved to Norman to complete my graduate work in journalism and mass communication at OU. I decided to pur-sue this track not for my love of journalism, but because I knew we would eventually marry, and my political science degree from SMU was not going to get me many jobs besides teaching. Staying in school would give me something to do while Jay finished medical school and deep down, I didn’t really want to work. After all, I was going to be a “doctor’s wife.”

In May, 1988, Dr. Jay Charles Duffield received his medical doctorate and graduated with distinction from medical school, again maintaining a 3.89 GPA. Jay liked to joke that he made one B per year whether he needed to or not. He had a photographic memory that allowed him to remember large por-tions of text almost verbatim.
During his last year of med school, he decided to apply for a neurology residency. Using sound logic, he narrowed down his choice: surgery was out because he didn’t like to get his hands dirty; obstetrics was much too messy. Neurology seemed to be for thinkers and he was definitely a thinker. So he was thrilled when he matched with his first choice at The University of Texas Southwestern Medical Center at Dallas (UTSW) under the direction of Dr. Roger Rosenberg.

When deciding where to interview for residency pro-grams, we had been discussing marriage and potential places in which to live. At one point Jay was considering asking for an interview at the Mayo Clinic in Rochester, Minn., and other po-tential locations around the country and asked me where I’d like to live. I very quickly replied, “I hate cold weather, so I’ll go anywhere with you as long as it’s south of the Mason-Dixon Line.” Of course, I would have moved anywhere with him, but he honored my request by interviewing only in Southern states at schools like, Duke, University of North Carolina at Chapel Hill, Rice in Houston, Vanderbilt, Tulane, and UTSW. When he matched in Dallas, I was thrilled to be moving back.

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We were married February 4, 1989, in Grove, Oklaho-ma. It was a beautiful wedding accompanied by the worst ice storm and lowest temperatures on record in Oklahoma. Few of the 200-plus invited guests were brave enough to venture out into below zero temperatures and ice-covered roads. The weather was so miserable, the minister who was coming from Oklahoma City – a drive of 3 hours under normal conditions – called to say he just couldn’t make it. Could this have been an omen? Jay’s mother and step-father – who were also traveling from Oklahoma City - got twenty miles from their home and remembered they had forgotten their wedding clothes and had to return home causing the 180-mile trip to take about 7 hours. Things were getting off to an interesting beginning.

We spent the first six months of our married life in Tulsa where Jay finished his internal medicine internship and then made the 4 hour drive to our new home in the Oak Lawn neighborhood of Dallas. Jay was fortunate to be able to spend his very first weekend of residency on call at the Veteran’s Administration Hospital in nearby Oak Cliff. It was the Fourth of July. We enjoyed the fireworks display at Fair Park together on the phone with Jay looking out his window at the VA and me standing on our bed and looking out our window. It was my first, but not last, experience of being alone while he worked the rigorous schedule of a resident.

As I look back, I am sad to think about all the wasted time we spent while in Dallas. There were so many activities to take advantage of, but we spent most of our time holed up in our little apartment. We were on a tight budget and just didn’t think of creative ways to spend our time there. We had few friends other than those with whom we worked and we very seldom socialized with them. It really wasn’t for lack of trying, our friend-less-ness.

We quickly joined Highland Park United Methodist Church, the church I had attended while at university, and tried to become active in a Sunday school class. My own insecurities led me to believe that all the people in that group were very close-knit and didn’t really want to get to know us. After all, they were already well-established with high-powered jobs and their conversations tended to discuss exotic vacations they were planning or what their children were doing. I convinced myself that since we were childless and could barely afford to go to the movie, they probably wouldn’t want to get to know me. I also generally went to church by myself since Jay was on call every 3 days. I felt awkward attending a couples Sunday school class by myself, so we stopped attending Sunday school all together. After a time, I joined the church’s handbell choir and it became a great outlet and an important source of strength later on.

I spent our first year in Dallas working for a temporary employment company and was fortunate enough to land a permanent clerical position with a very prestigious hotel man-agement company. I was in charge of opening the mail for the president of the company and giving it to his secretary. It wasn’t very glamorous, but the perks were great: comp lunches at the company’s property on beautiful Turtle Creek! Even though the work was mundane, the setting was exciting and the money being spent by the company on new properties around the world was staggering. The idea of staying at the Motel 6 had been replaced by dreams of Relais and Chateaux and Preferred Hotels of the World.

After my job there ended, I wound up in the managing editor’s office at the Dallas Morning News. It seems that the Associated Press Managing Editors Association was having its convention in Dallas and the News’ managing editor was in charge of planning it. His secretary needed help and that’s where I came in. I began working at the paper in a temporary position and worked for a colorful team of managing editors and their secretaries. I was, once again, smack-dab in the middle of a powerful organization with a world-wide scope.

Fortunately, that position also led to a permanent job in the business news section of the paper under the leadership of editor Cheryl Hall. I was to answer the phones for the depart-ment and would occasionally be allowed to write, although my writing skills were nothing like those of seasoned staff writers. I was insecure with my writing and was generally reluctant to offer to write anything, but did manage to have two or three human interest stories published, making me a legitimate “Staff Writer of the Dallas Morning News”. I was extremely proud to have my byline in a major metropolitan daily newspaper.

I loved my job at The News: the reporters were always uncovering news regarding business deals around town or across the country. There were quite a few curmudgeonly types, but all were very generous and treated me like an equal. I had been with the news for about a year when Jay’s phone messages announcing his brain tumor reached our answering machine.

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I rushed to Zale Lipshy University Hospital, of course carrying Jay’s dop kit and some sweats for him to wear. When I arrived, he had been put in a huge private room (larger than our living room in our apartment) with a great view of down-town. He was sitting in bed watching TV and smiled when I came in.
“I have a brain tumor,” he said.
No kidding! I gathered that from the two messages on our machine! “How do you know?” I asked.
“I asked Kyle Womac to look at my eyes yesterday because of all the headaches I’ve been having, and he thought my optic discs looked a little swollen.” Kyle was a Fellow in the neurology department, which meant had already completed his residency and was specializing in a more specific area of the study of neurology. Jay trusted his opinion.

How could we have been so blind? Jay had been having horrendous headaches for several months and often was nauseated to the point of vomiting, unrelated to any food-borne illness or flu-like symptoms. These are cardinal symptoms of brain tumors but we just chalked up the headaches to the stresses associated with his residency: he was six months away from finishing his three-year term and was also carrying out duties as co-chief resident.

Dr. Womac scheduled Jay for an MRI on November 16, 1991, which confirmed the diagnosis of a brain tumor. Jay was admitted that afternoon and the Departments of Neurology and Neurosurgery at UT Southwestern Medical Center began the pursuit of treatment for what turned out to be one of the rarest types of cancers.

Not long after I arrived in Jay’s room, neurology de-partment head Dr. Roger Rosenberg, and neurosurgeon Dr. Bruce Mickey, appeared at the door. The doctors were there to confirm with Jay the type of tumor they suspected: pinealob-lastoma. They explained that this was an extremely rare tumor and that they had never actually seen one.

Dr. Rosenberg ex-plained to us that they would do everything possible to take care of Jay and that if Jay preferred, they would make arrangements for him to travel to any other medical center in the country. Since Dr. Rosenberg was the acting president of the American Academy of Neurology, he had some connections and offered to make some calls. Without a second thought, Jay said he preferred to stay in Dallas under the care of Drs. Rosenberg and Mickey.

Several days passed while Dr. Mickey called colleagues at M.D. Anderson, Harvard and John’s Hopkins to find out if anyone had any experience with these types of tumors. The pineal gland is right in the center of the brain and seems to control the production of melatonin. Tumors involving this gland are so unheard of that fewer than 0.1 to 0.3 percent of all brain tumors involve the this small gland. He couldn’t be cer-tain of the tumor type until it was biopsied and a biopsy meant major surgery. Finally, the surgery was scheduled for Novem-ber 22.

“What’s the name of the song that sounds like this?” Jay hummed a few bars of a hymn I remembered from the old brown Cokesbury hymnal we used in our Methodist church in Grove.

“In the Garden,” I replied. I could tell he was thinking about the possibilities of his not surviving the surgery. “What other songs do you want?” and we proceeded to discuss other ideas he might like at his service.

   
The six days between his admission and surgery were divided by the weekend. My mother had flown in within 24 hours of my calling and we attended church on Sunday. On the attendance register, I wrote my name, phone number and checked the box that said, “Desire a call”. I proceeded to write on the back that my husband had been recently diagnosed with cancer and the hospital in which he was a patient. The very next day, I received a call from Dr. Bill Smith, an associate minister at HPUMC. He said our name had been passed to him and that he was in charge of visitation. “Would Jay mind if I dropped by his hospital room?”

Frankly, I was shocked and surprised at the call. Highland Park is one of the largest Methodist church’s in the country, and surely visitations were reserved for those who regularly tithed. I had missed handbell choir the previous week, but only told the director I wouldn’t be there because of personal reasons.

Dr. Smith came to visit the next day, which was the start of a great friendship. He was kind enough to pass along our news to the handbell choir director who then called soon afterward.

“What can we do for you? You didn’t even let on like something was wrong when I talked to you last week! Are you OK?” he asked.
“I just can’t believe this is happening, of course. I really don’t know that there’s anything anyone can do, but I’ll let you know.” I said. I had no idea how to ask someone for help other than my parents and couldn’t possibly impose on someone else.

The next day, one of the ladies from the choir called and let me know they were praying for us and again asked if they could help with anything.
“Can we clean your apartment for you?” she asked. Oh my heavens, no! I am a terrible housekeeper and would be absolutely mortified for anyone to see how messy things were. So, no, thank you, there’s really no need to clean our apartment, but I’ll let you know if there’s something else you can do….

As soon as I found out about Jay’s tumor, I asked for time off from work. Cheryl Hall immediately said to take all the time I need and not to worry about my job. She would take care of everything. Within days, one of the secretaries in the managing editors’ offices called and said they wanted to send over some food since they knew our families would be coming from out of town. The next day a catering company arrived with huge trays of cold cuts, croissants, fruit and condiments.

The generosity shown to us by my employer and our church friends was awesome, completely unexpected and done in the spirit of selflessness. We both wondered how we would manage not working for an extended period of time, but pay checks kept arriving from both of our employers during Jay’s illness.
   

Jay’s surgery lasted about 5 hours – two hours less than Dr. Mickey predicted. He emerged from the operating room to deliver his news.
“I have some good news and I have some bad news,” he said. “The good news is that I was able to get almost all the tumor. It was about the size of a walnut and we were able to take about 70 percent of it. I decided not to try to take any more because I didn’t want to damage Jay’s optic nerve. Jay’s in recovery and did very well during the surgery. You should be able to see him in about an hour.

The bad news is that it’s malignant and it’s called a pinealoblastoma like we thought. Don’t go home and try to read all about it because there just isn’t much information and what you’ll find won’t be good. Now that we know exactly what it is, we’ll form a plan as to how to treat what’s left.“ Dr. Mickey went on to explain what Jay would look like when I saw him in ICU.

My family and I sat in the waiting room in stunned silence for a few moments. Then we all determined to help Jay fight this any way we could. I left to visit him in his new digs in ICU where he would stay for the next two weeks.

Although I knew he’d just had brain surgery and that he would be wrapped in bandages with tubes coming out of his head, I was strangely struck by the head full of staples and that his beautiful, dark, curly hair was haphazardly shaved off. When I arrived, he was semi-conscious and proceeded to have an upset stomach as a result of the anesthesia.

After a couple of days, a ventriculo-peritoneal (VP) shunt was placed in his brain to drain excess cerebrospinal fluid into his abdominal cavity.
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Frankly, I was worn out. One day after the surgery, I went back to the apartment to try to rest. I was lying across the bed, face down, half-asleep when instantly, a figured in white appeared before me with his hands outstretched.

“He’s going to be OK,” He said.

I awoke suddenly and looked around our room to see where He’d gone.
“Wait!” I thought, “Come back! What do you mean? Please come back!”
Fully awake, I realized the magnitude of what had just happened, but didn’t know what to call it. Was it a vision or was it a dream? Either way, I didn’t really care; I knew I had received a very special gift, and that a weight had just been lifted off my shoulders. I no longer had to worry because He was carrying my burden, and had been from the very beginning of our ordeal. I couldn’t wait to get to the hospital to tell Jay!

His reaction was typical. In his usual, succinct manner, when I told him what had happened, he said, “That’s good to know.” But he has carried that Message with him daily for the past 16 years. And so have I.

   

Jay spent the next two weeks in ICU. Early on, he was given morphine to ease the incisional pain and recalls the vivid colors he saw, along with attempts to fly underground. Dr. Rosenberg had given Jay a copy of a book to read during his re-cuperation, Still in no mood to read, I read to him daily from John Kennedy Toole’s “A Conferderacy of Dunces,” We laughed our way through New Orleans’ French Quarter with Ignatius G. Riley and our days seemed less dreary.

I had also just fi-nished Bernie Siegel’s, “Love, Medicine & Miracles,” and was determined that if Dr. Seigel could laugh himself well, then, by golly, so could Jay. So I rented all the movies listed in the book, along with some that we had thought were funny. I even went so far as to bring to the hospital those videos of three guys that only guys seem to love and secured every Three Stooges video I could find. In those days, VCRs were uncommon in hospital rooms, so we felt fortunate that the nurses allowed us this indulgence.

Our Thanksgiving that year was bitter sweet and as we ate our processed turkey and filmy hospital gravy, we both silently wondered if this would be our last Thanksgiving together.

The first week of December, Jay came home from the hospital.
I cannot remember what I gave him for Christmas, but unbelievalby, a few days after he got home, he asked his mother to take him shopping for a special gift. On Christmas morning, He handed me a box with that special name on the bottom: Neiman Marcus. I was stunned when I found a beautiful pink cashmere turtle neck sweater inside. His mother told me later he was determined to buy that sweater and he was determined to get it at Neiman's. Never mind that it cost a fortune on a medical resident salary. I'll treasure that sweater for the rest of my days.

He was scheduled to begin chemotherapy after the first of the year, and I resumed my job. Fortunately, Jay had worked out his schedule so that during the spring semester of 1992 – which would be his final months of residency – he only had electives remaining. Turns out, he was nearing the end of his required rotations when he got sick, and the department of neurology was kind enough to call it good. My dreamlike Visitor must have a hand in Jay’s decision to plan his schedule this way. . . .

Apparently, in the world of oncology, the different combinations of chemotherapies are called recipes. Since Jay’s tumor was so rare – did I mention that fewer of 0.1%-0.3% of all persons who get brain tumors get pineal region tumors, and they generally occur in male children? – his oncologist didn’t really know what recipe to concoct. So he tried a combination of Vincristine and cisplatin, two very potent and toxic drugs which might be worth a try.

Now that I look back, I cannot believe how self centered I was. I really had no concept of what Jay was going through. But he isn’t one to give out any more information than was absolutely necessary: Just the facts, ma’am. During his chemotherapy treatments, he drove himself to the hospital with his "sick bucket" in the seat next to him. If he felt the need, he just pulled over, tossed his cookies, cleaned himself up and continued on. What in the world was I thinking???!!!

For some reason, I never met his oncologist and it was probably just as well. But one day, I thought I needed to find out exactly what his expectations were for this treatment he was prescribing and what he thought the outcome would be. So I called him from work and left a message for him to return my call. About an hour later, Dr X called back and promptly let me know in no uncertain terms that the outcome was bleak. “I’ve never seen anyone last more than 18 months with one of these,” he said.
“Oh, really?” I said. “Thank you for calling me back.” Click.
But he didn’t know about my dream. He said Jay would be OK and I believed Him.

Our third wedding anniversary was nearing and we decided to celebrate with a special evening out. What would we do? It didn’t take long to come up with the perfect evening: dinner at the French Room at Dallas’ grand dame, The Adolphus Hotel. This is one of the most beautiful restaurants in town, adorned with tromp L’oeil cherubs on the ceilings, gold leaf, Oriental marble and Italian crystal chandeliers. The place screams romance! We were so looking forward to a meal that consisted of something other than Zatarain’s dirty rice with ground turkey.

So the day arrived for our special date. We got decked out in our finest outfits and started on the 10 minute drive to downtown Dallas. We had not gone two blocks when Jay said, “I’m going to be sick.” I slammed on the brakes and he promptly opened the door and vomited. When he finished, we turned around and retreated the two blocks back home, promising to one day eat at the French Room. It wasn’t until many years later that we finally fulfilled that hope.

A few weeks later, an MRI determined that the chemo was not working. Dr. Mickey referred Jay to a radiation oncologist, Dr. Phuc Nguyen. Dr. Nguyen decided to pull out the big guns and zapped the tumor twice a day for six weeks with the maximal amount of whole brain radiation possible. Never mind the side effects, by golly we were going to get this tumor once and for all.

An avid reader and lover of history, Jay decided to use those two interests to his advantage during his treatment sessions. He envisioned himself flying a bomber. When the radiation machine was operating, he was mentally “bombing” his tumor and each time the machine stopped the tumor would be mentally obliterated. He continued these sorties every time he had a treatment: twice a day for six weeks. After all, maybe there was some credence to the theory of mind over matter.

Once again, it never dawned on me to drive him to treatments. He just carried his bucket with him wherever he went.

Finally, his radiation came to an end and an MRI was scheduled. The 2 week wait to view the results was excruciating, but finally the day arrived. The day was April 15, 1992, five months and one day since his hospitalization. It was also Good Friday.

We anxiously waited for Jay’s name to be called by the nurse so that we could go back to the exam room and wait for Dr. Mickey. Those minutes seemed like hours! At last, he arrived with all of Jay’s films and we followed him to the light panels. He began to look at each of the scans intently without saying anything. I had never seen an MRI before that day, so I didn’t know what I was looking at and kept thinking that I wished Dr. Mickey would speak.

“I don’t see anything, It looks like the tumor is all gone,” he said with a big smile.

It was, indeed a Good Friday!
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I had saved all the cards and notes people sent to Jay during those months. Most were encouraging letters and cards from family and friends, but one card stuck out: it was from a Baptist church choir in West Texas. “Who do I know in West Texas?” I thought. Nobody. It said, “We are praying for your recovery.”
I never did find out how that group got our address or who’s friend asked for prayer for us. But I felt God’s embrace from half-way to California with that card. People we didn’t even know were praying for our miracle and God heard all those prayers with a resounding, “Yes!”

Jay finished his residency on time and with a job.
   

We were thrilled to be moving back to our beloved Oklahoma and closer to our parents. We had hoped to move to Tulsa and Jay interviewed with several neurology groups there. But we quickly learned a lesson in office politics during those trips back to Tulsa.

Through a headhunter, we learned that one neurologist didn’t want to hire Jay because he had talked to some folks whom Jay had known during medical school and those people said Jay just wasn’t the same person he used to be. No Kidding??? I imagine that if those people had just been through major brain surgery, radiation and chemotherapy in five months, they’d seem a little worn out too.

The second group from a major hospital in Tulsa wouldn’t hire Jay because they were afraid he would have a recurrence and be a major malpractice risk for them. They put Jay through a battery of neuropsychological testing (which he passed with flying colors) only to tell him they weren’t interested.

Finally, a small multi-specialty practice in Bartlesville, Oklahoma, welcomed him gladly. Bartlesville is a community about 45 miles directly north of Tulsa which used to be a bustling oil community and the world headquarters for Phillips Pe-troleum. It has a small-town feel with big city amenities, such as a world class performing arts center, symphony and the only skyscraper ever designed and built by Frank Lloyd Wright.

We made the trip for the interview and the red carpet was rolled out. Practically every physician in town greeted us at a reception at the local country club; a realtor was secured to show us homes befitting a doctor; we even visited the local banker to be told that we could, indeed, get a 100% loan on any home we wanted. And we were told how much the community wanted Jay to join its hospital.

A month later, a moving truck showed up at our apartment in Dallas and moved what little furniture we had North across the Red River and into our very modest, rented home in our new home town of Bartlesville.

5 years later....

Spring 2007
I e-mail St Louis University (SLU) to find out why Jay might be so clumsy. Shouldn’t the side effects from the cyberknife be wearing off by now? Dr. Bucholz said we would see latent effects up to 14 months, but I didn’t think Jay should be stumbling around so much.

After the Christmas holidays, I purchased a cane for him because his balance seemed so unsteady, and had been progressing in this direction since late summer. The prior August, we took a family vacation to San Diego. While at Seaworld, I noticed Jay had trouble navigating the bleacher stairs when we’d go into an arena to see Shamu or the dolphins and such, but just didn’t think much of it.

Later in the fall, we started taking the boys to our local high school football games, since our youngest had just started in our local youth football. Once again, I noticed how difficult it was for Jay to climb the bleachers which were much steeper than those at Sea World. He would hold my arm as we went down the steps and walked like a little old man.

So this was to be the progression and SLU scheduled an MRI with the giant magnet, the 3-Tesla or 3-T magnet. It seems the neuroradiologist saw some things on a prior MRI that made him suspicious. So off we went to St. Louis. We ac-tually enjoyed our little jaunts to St. Louis: they gave us a chance to get away for 24 hours and be in the “big city”. And I had become an expert on Priceline.com in finding 4-star hotels for around $50 a night!

The MRI confirmed the neuroradiologist's fears: the tumor was spreading through Jay’s spine. They gave us an option (singular): make an appointment with our oncology department. Since Jay was no longer a candidate for radiation, and the cyberknife was useless on multiple spots, maybe some chemo would help. It was worth looking into.

So two weeks later, we went back to St. Louis and met with an oncologist. After driving like a mad woman, getting a speeding ticket in the process, to get us to St. Louis by 2 p.m. (which is a 4 hour drive from Joplin), we waited in the waiting room for over an hour. Things weren’t going well. Was this a sign?

Finally, we make it to the inner sanctum of an exam room! Where we waited another half-an-hour. For anyone who has waited at a doctor’s office any length of time, you know how frustrating even a 15 minute wait can be. At last, the doctor comes in with his colleague, a Fellow. Fellows are “students” who have completed their residencies already and are working toward a fellowship in a particular sub-specialty. Oncology happens to be one of these sub-specialties.

So the fellow sits down in our exam room and begins to do an “H&P” or history and physical, since Jay was a new patient to them. Couldn’t he just read the notes from radiation oncology and get the story? We’d been waiting over two hours to see the “real” doctor!

“Name?” he said in his Indian accent. “What seems to be the problem?” he continued.

“We were sent here by the cyberknife people to see if you thought chemo would be an option.” I said. The effects of his brain radiation were still doing a number on his brain. It seemed like when the doctor would ask Jay questions, he was incapable of answering in any details, so I found myself answering the "how long have you had these symptoms, and when were you first diagnosed" questions.

Dr. Fellow read through the chart further (couldn’t he have done that before he came into the exam room?). “Oh! I see you’re a neurologist?” he said with a slight start.

“Yes.” Said Jay, always a man of few words.

The next response we found to be typical: after the questions, a short neuro check always followed. The comment was always, “Well, as an oncologist, radiation oncologist (fill in the blank - kind-of-doctor) I feel kind of weird doing this check to a neurologist, so don’t count it against me!”

Please! Just do the exam and let us talk to the attending physician!

Dr. Fellow was especially thorough in his questioning and my anger at waiting so long was beginning to subside when he said, “let me confer with Doctor, and we’ll be back in in a few minutes.”

Wait, wait, wait…
We could hear them “conferring” with one another in the next room at length, since the walls seemed to be made of paper. At last! Doctor arrives without fellow.

“Hello, Jay, I’m Doctor…. I’ve been looking over your chart as you probably heard through the walls (no kidding!) and I don’t have to tell you how rare this tumor is. And since it’s primarily a pediatric tumor, I’ll have to call my colleague across the street at Cardinal Glenon Children’s Hospital to see if he has any ideas. Because honestly, I don’t know a good way to treat these. So I think the best thing for you to do is come back in about ten days and I’ll let you know what I’ve found. Of course, you’re welcome to seek second opinions, and I would actually encourage that.”

“WOAH, WAIT ONE MINUTE HERE!” I was screaming inside. I wondered if he could see me gritting my teeth.
Instead I said, “Uh, It’s about a 4 hour drive back to our home in Joplin, and we have school-age kids we have to consider. It’s kind of a hardship to come back in two weeks (plus we’ve busted a gut to get here on time today, and it was a waste of time). And since you brought it up, we’ve already scheduled an appointment in Dallas with a former residency colleague of Jay’s who’s a neuro-oncologist,” I said, emphasizing the word neuro so that he knew we would be seeing someone more specialized in nervous system tumors than he was.
“Oh. Well, good. So well schedule you for two weeks and hopefully I’ll have more information for you.”

Hopefully? I knew we would not be coming back to this office. Ever.

By this time, Jay was confined to a wheelchair and his ears while sitting happened to be at about the same level as my mouth, so he got an earful all the way to the car!
“CAN YOU BELIEVE THESE PEOPLE? WE DRIVE LIKE CRAZY TO GET UP HERE AND THEY’VE GOT NO CLUE. WHY WOULDN’T THE CYBERKNIFE PEOPLE CALL THE ONCOLOGY PEOPLE ON THE PHONE AND TALK TO THEM ABOUT YOU BEFORE WE GOT HERE? I JUST DON’T UNDERSTAND.”
“I know,” was the reply. “I guess we probably should skip eating at P.F. Chang since it’s so late.” Ever the pragmatist, he remains.
Like water off a duck’s back. I am always amazed at Jay’s patience with people. It’s certainly a gift I didn’t get.

Ten days later we were sitting at the office of Dr. Karen Fink at Baylor University Medical Center in Dallas. Jay and Karen went way back, as they were in residency together. Jay happened to be Karen’s senior resident and had much confi-dence in her abilities. It was good to be where someone knew Jay’s history.

We had not seen Dr. Fink since 2002, but before we arrived in Dallas, she had consulted with his original neuro-surgeon, Dr. Bruce Mickey, who is at UT Southwestern, just across town from Baylor. She had talked to his original medical oncologist and radiation oncologist from 1991. She had discussed Jay at Tumor Board at Baylor. We were impressed and grateful that she had taken time prior to his appointment to try to gather as much information as possible.

“I don’t know, Jay,” she said. “I don’t have to tell you that we’ve reached a point where we’re not sure what to do. We could try intra-thecal chemo, but it looks like there’s so much tumor there that it wouldn’t circulate through your spine. (intrathecal chemo treatments require using a port of some type which has direct access into the spinal fluid)

And we could try a particularly toxic recipe on you, but that would require your being in hospital for 3 days monthly. It’s very hard on your system, and I just don’t know if you want to endure that. Plus you’ve already had two of the three drugs in the recipe in 1992, and they didn’t really have an effect on your brain tumor.

I’d like to have an up-to-date MRI. When did you plan to go back home?”
“Our plane leaves at 3:45.” Plus we had to return our rental car and get Jay and his wheel chair to the gate for pre-boarding. “But we need to be there by 2:45 to get all checked in,” I said.

“If we can get you in, can you have the MRI today before you leave? This place is directly across from UT Southwestern. Are you leaving out of Love Field? (We nod in affirmation.) Then we need you to come back in about weeks. I know it’s an inconvenience, but it’s about the only thing we can do until I take a look at your new pictures.

“Yes, the MRI will be right on the way. It won’t be a problem.” I said.
If need be, we would spend the night to have this MRI done before leaving Dallas, no matter if we had to pay full price for our hotel room!

"In the mean time," Dr. Fink continued, "do you have a doc in Joplin who, if we come up with a recipe, you want to supervise your treat-ments?”

Jay gave her the name of a doctor at home who, unbeknownst to us, had stopped practicing the week before. So Dr. Fink spoke with a Dr. Matthew Miller, who had taken his place.

She explained that Jay was under her care, but lived in Joplin and would Dr. Miller be willing to care for Jay. Dr. Miller agreed, but was leery about the recipe she was proposing. They would work that out….

We were in and out of the MRI in time to make our plane back to Tulsa. We felt comfortable and comforted knowing Dr. Fink would do everything she knew how to help Jay.

Three weeks later, we were back to Dallas, only this time we drove because the experience of flying with a wheel chair was very complicated. Jay had now lost the use of his legs completely and the flight attendants had to pick him up out of his chair and literally carry him to his seat on the airplane. Neither one of us wanted to go through that again.

That day, Dr. Fink went over the game plan: Jay was to have a combination of two drugs that were proving to be effec-tive on other types of brain tumors, so it might be worth a try to see if it had any effect at all. Intra-thecal chemotherapy was definitely not an option, since Jay’s spinal cord was completely covered with tumor.

If drugs were administered in that manner, they would just be shunted out into his abdominal cavity from the IV shunt in his brain. Dr. Fink theorized that Jay was re-ceiving very little, if any spinal fluid to his spinal cord. She was amazed that he was in no pain and that he still had feeling in both legs and feet from the waist down.

So it was back home to meet with Dr. Miller. He’s a young man and I wasn’t sure I liked him very much at first because he was so forthright about Jay’s condition.
“I don’t have to tell you, Jay, that any chemo we do is really just to slow down the progression. There is nothing that will cure this tumor.”

Oh. I knew this day would eventually come, I just wasn’t quite ready to admit it was actually here.

“So we’ll get you scheduled to have your port put in, then you can begin treatment immediately after that,” he went on.
I’m sure he said some other stuff, but I‘d kind of tuned him out by this time. I felt kind of like Charlie Brown when the teacher was speaking, "wa wah, wha wha wha wha..."

Jay’s port was placed on June 29, 2007 with no complications. Until the next morning, June 30.

“What’s wrong with your hand? Why is it so limp?” We were getting dressed.

“I don’t know, what’s it doing?”

“Wait! Say that again. Say a sentence to me.”

“Methodist-Episcopal.” He said, which was one of the phrases he used on his own patients to test their speaking ability after a stroke. Only when he said it, it was pretty much unintelligible.

"Jay, Have you had a stroke? I think you’ve had a TIA (transient eschemic attack)! Should we go to the ER?”

He nodded with a look of both knowing and fear on his face.

Immediately, I called my mother 45 minutes away in Grove. My entire family was at home to celebrate my father’s 83rd birth and my niece’s 9th birthday, which they shared. Plus it was Fourth of July weekend,

“Can someone come stay with the boys? I need to take Jay to the hospital because we think he’s had a TIA."

Nearly hanging up on me she said, “Someone will be right there. Do you want someone to meet you at the hospital?”
“Yes, that would be good.”

It took almost 45 minutes for me to get Jay dressed, into his wheelchair and then into our Honda Pilot. Without the use of his left arm, or either leg, he was just about incapacitated. His listless 160 pounds to my 5’1” frame was a challenge to maneuver into the car, to say the least. So by the time we were almost out of our neighborhood, My sister Kay, along with her children, Laura and Wells, had made their way to Joplin.

Kay accompanied us to the hospital, Laura and Wells picked up Cole and Andrew and took them to Grove for the rest of the weekend. Just as we were pulling into the ER parking lot, Jay said, “I’m gonna be sick.”

“What? Now? In the car?” I pulled over and ran in to get some help. When I got back, Jay was recovering from his queaziness. Turns out, earlier, I had used a gait belt around his waist to help me get him into his chair and really got that thing cinched around him. It was so tight, it was making him dizzy!

The ER visit and CT scan confirmed what Jay already knew: he had had a small stroke. This was a probably a result of a combination of so much radiation to his brain, which constricts blood vessels over time, and not taking any aspirin for 48 hours prior to having his port placed the day before.

Within an hour of arriving, my brother, an anesthesiologist, and my brother-in-law had arrived to lend their support. This was not how I envisioned our family spending our Fourth of July and birthday weekend. I was so appreciative of them staying with me; it’s hard for me to ask for help and their presence was such a comfort to me.
The following Monday, July 2, 2007, Jay began his chemotherapy treatment at Freeman Cancer Institute.

The nurses were all familiar with Jay because for the past year or so, he had been a chaplain’s assistant there. He would take snacks or magazines or drinks to patients having treatments. Sometimes he would share his experience with them, but he was cautious about doing so. People going through treatment tend to compare what they do with what others are having done. Sort of like comparing birthing experiences for mothers. Jay didn’t want to try to influence them one way or another. He was just there to be of service.

So when we arrived, all the staff called him by name and told him how glad to see him they were, but too bad he was there for chemo. They took good care of him, as they do all their patients, for the next eight weeks.

Time for another MRI.

We had the scans sent to Dallas and the radiologist sent his report to Dr. Miller. He and Dr. Fink were on the phone immediately talking about Jay’s results, and Dr. Miller deferred talking to us until after we’d spoken to Dr. Fink on the phone.

“Oh, Jay . . I’ve looked at your scans and it looks like there’s even more tumor there than before. Your spine is covered with tumor, but it looks like it has not spread any more to your tentorium (a tent-like structure directly above the cerebel-lum in the brain), so that’s good. How’s it been on the chemo?” she said.

“I’ve been pretty nauseous,” his voice had weakend to the point of a whisper and it seemed as though he had trouble processing what she was saying. His eyes had lost their hazel luster in the past months and he looked tired and felt awful.

“I suggest you stop treatment all together, because it’s pointless to keep this up and make you feel terrible when it’s not doing any good. I think that once the chemo wears off, you might try to enjoy time with your boys and Lynne and some quality of life. I’d also suggest you getting a hold of hospice. I’m very sorry, Jay. I know that’s not what you wanted to hear.”

He nodded and hung up the phone.

Our visit with Dr. Miller went similarly and he said he would make arrangements for hospice to call us. He left to dictate his notes and his nurse, Molly came in to check on us. As we started to leave, I broke down and sobbed.
“I have been preparing for this news for sixteen years and I’m still not ready to hear it,” I said, in between gasps.

We had been home only a short time when the phone rang. It was a representative from the hospice organization we had chosen. She wanted to meet with us and find out what our needs were and what we knew about hospice.

It’s for people who are dying. I can’t believe we need these people.

Jay signed all the necessary papers and we discovered that hospice was going to be a real blessing. In the two months before I had written checks in excess of $800 for medications and one month the expenses were almost $1800. Hospice said they would cover these medications one hundred percent.

So we were barraged by hospice personnel. Different people came to our house to do initial assessments and consultations: nurses, a social worker, a chaplain, a home health aide. And they all used one version or another of that “D-word”: death, die, dying. As I sat listening to them – each one – used the word like it was an everyday occurrence . . .to them maybe. I wish they wouldn’t say that word - like it was actually going to happen to Jay.

Each time, I was struck by the compassion displayed by every single person: “If you need anything, no matter what time, day or night, you call us. We’re available 24 hours a day. If you need to blow off steam at 2 a.m., call us. If you have a medical emergency, call us. That’s our job and we’re here to help you through this hard time. And we’ll be here afterwards to help support you and the boys.”

STOP RIGHT THERE! What "afterwards" are they talking about. They were talking to us about Jay dying. Actually dying!

Jay is dying.

Grief stuck like a freight train and reality set in. During the first visit by the aid, she stayed to visit with me and see how I was doing. Each hospice employee is specially trained to deal with families who are in the process of losing a loved one.
“I was doing just fine ‘til you people started showing up!” I said jokingly, but it was really true. I had to face the facts and they were blaring at me like a bull horn.
I have learned over time that it’s OK to be angry with God. After all, we’re human; imperfect. I find myself yelling at God in the car or in the floor of the living room while clinging to the sofa.

“YOU TOLD ME HE WAS GOING TO BE OK! I THOUGHT YOU MEANT WHAT YOU SAID!” I screamed through heaving sobs.

I wondered how I would support the boys since I took a year off from nursing school when Jay started progressing in the spring. I was going to be a single mom, trying to go to school, having to find people to care for my sons while I go to clinicals during school. This just wasn’t supposed to happen to me! I had led an idyllic life up to the point when the wheel chair became our reality. After all, if you ignore something and pretend it doesn’t exist, shouldn’t it go away?

People in four states were praying for us. Praying for comfort, healing, understanding, patience. Grace. A miracle.

One day, I called my friend, Debbie, who is a dear friend and a woman of great faith.

“I’ve been thinking. Here’s the deal: All those years ago, God told me that Jay was going to be OK and I believed him. I took that as a covenant between him and me and God does not break cove-nants. So will you please pray for complete healing? You know there are places all over the Bible where God changes his mind and heals people. He even raised Lazarus from the dead! Surely if enough people pray for this, he’ll hear it! He might change his mind! And I could never forgive myself if I at least didn’t try this.”

“OK,” she said. “Whatever you want, I’ll do it.”

We hung up and I called another friend, Missy, also a woman of great faith, and explained the same thing. Her response was the same as Debbie’s. She’d get on that prayer right away and tell others as well.

I called my third prayer warrior friend, Melanie. This woman is an incredible example of walking the walk. The walk is her mission in life and it shines through her very being and permeates every word. She is special; truly blessed with a gift from God to minister. But her response was unexpected.

“Lynne, I will do whatever you want but I feel compelled to tell you this and please don’t take it the wrong way. I think there are different kinds of healing: The healing where the physician plays a role; the healing where the body is able to heal itself; the healing of the mind. But the ultimate healing is that of God’s perfect healing! We cannot dispute the fact that death is ultimately perfection.”

Hmmph, that’s not what she’s supposed to say!
But I said, “I know. I am not disillusioned by what’s going on. I just have to try everything I know to do.”

“Then that’s what I’ll pray for you, sister,” said my friend.
The next morning, I was doing my Bible Study and had a list of all occurrences of the word heal, healing, healed, that I had gotten from an online concordance. I was reading along when it hit me!

“He’s going to be OK.”

God’s perfect healing will make him well again, just as an outright handsdown miracle would make him well again.
God’s grace allowed me to see that no matter what, Jay was going to be OK. God keeps his promise. He never breaks his covenant. What an amazing God!

His grace reappeared later that morning when the hospice chaplain arrived at our house. We had arranged for him to help break the news to the boys because I was afraid I wouldn’t be able to tell them on my own without sobbing.

It was such a special time. Chaplain explained what was happening to Jay physically and that he would eventually die (there’s that word again). He spoke to them for a few minutes when Andrew’s eyes bubbled over with tears. I went to him and led him back to where I was sitting on the front step, and he sat cradled in my arms quietly sobbing as I rocked him back and forth.

I was able to talk with the boys about what was happening without breaking down because God had given me grace. I felt calm and peaceful when talking to them and can only attribute that to our Wonderful Counselor.

October 8, 2007
3You will keep in perfect peace him whose mind is steadfast, because he trusts in you.
4Trust in the LORD forever for the LORD, the LORD is the Rock eternal. Isaiah 26:3-4

Andrew and I were in the garage when he asked, “Mom, what will it be like when Dad’s gone?”
“I don’t know. . . .I think we’ll be very sad and sometimes mad and maybe mad at each other and that’s OK,” I said. He came and put his arms around me and we stood together for a long time.

I just cannot imagine what it’s going to be like with Jay gone. I won’t hear him snoring at night or making that strange half-burp, half-hiccup thing he does so loudly. How will I teach the boys things like shaving?

Cole told me he was starting to imagine us at Jay’s funeral: “everyone was wearing black, and it was raining,” he said.

1 Answer me when I call to you,
O my righteous God.
Give me relief from my distress;
Be merciful to me and hear my prayer. Psalm 4:1

1How long, O LORD? Will you forget me forever?
How long will you hide your face from me?
2 How long must I wrestle with my thoughts and every day have sorrow in my heart? Psalm 13:1-2

1I love you, O LORD, my strength.
2The LORD is my rock, my fortress and my deliverer;
My God is my rock in whom I take refuge.
He is my shield and the horn of my salvation, my stronghold.
3I call to the LORD who is worthy of praise. Psalm 18:1-3

30As for God, his way is perfect;
The word of the LORD is
Flawless.
He is a shield
For all who take refuge in him. Psalm 18:30

This is my prayer:
O my God,
I come so humbly before you to ask to spare Jay’s life. I ask you to put your healing hand upon his back and completely remove his cancer. God, there’s so much here left for him to do: our son’s need a father to show them the ways of becoming a man. I want my husband to grow old with and share our grandchildren, our sons high school graduation; their college graduations; their weddings; their first dates; O Abba, Father, I know your plan is perfect, but just as Christ sweat drops of blood in the garden the night before the cross, and asked you to take his cup from him, so do I LORD ask you to take this cup from Jay.

Dear God, I know you have the power to heal him in an instant. Think what kind of witness he would make, LORD! There are so many times in the Bible where you have changed your mind: you saved the Israelites; you saved the Babylonians; you raised Lazarus from the dead! You healed the leper and the blind all with a touch of your hand..

Oh God, I don’t understand why this is happening and I don’t know how I can bear it. I beg you, LORD to please change your mind! But, Father, I know Your way is perfect and death to you and me are two different concepts. I know that an earthly death for Jay will mean Life with you for eternity, but I’ll be here by myself to pick up the pieces.

Dear God, I trust you and know that You have a plan for me; plans for hope and a future, but it all seems so bleak right now. Please heal Jay, LORD. We know that Your Way is the only way and we trust Your decision. O God, please put us in the cleft of your arm and protect us as a hen to her chicks. Let me stay in your presence for a moment. ’Thank you for our friends. Thank you for loving us. Thank you for sending your Son to die for us. Thank you for my husband, the love of my life. Please, LORD, please change your mind. In Jesus’ name
AMEN

November 30, 2007
He’s withering away. His vertebrae protrude through the skin in his back and I imagine those tiny, deadly cells just millimeters away that are wreaking havoc on his health and our lives. When he turns on his side, the spines in his hip bones, along with his femur, are so clearly outlined through his wasting body. He eats less and less each day and I wonder how long. . . .

I find myself getting angry at him because he won’t eat anything. “Are you trying to starve yourself?” I ask like a nattering ninny. Maybe if I nag a little more, he’ll get tire of it and actually eat something.

Most days, he lists a little to the left with a far-away look in his eye and I wish he would express his thoughts to me. He has endured this whole illness with a stoicism that is hard for me to understand. Several months ago, I was trying to get him to talk to me about what was happening to him and finally aggravated him enough that he actually let me in just a little.

“Do you want me to tell me how miserable I am? Do you want me to tell you how much I hate your having to do everything for me? Not being able to do things with the boys? Your having to quit school because of me?”

“Yes, Jay. I do want you to tell me those things!”

Jay has felt for a long time that his cancer was a ‘thorn in his flesh . . .to torment him. Just as the apostle Paul re-vealed an affliction of his own.

Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 2 Cor. 12:8

He has carried his ‘thorn” with the grace and peace of one who knows that his ultimate destiny will come sooner than later. My greatest regret is his inability to describe what is going on inside his head; the pain his body is experiencing; the frustration of it all.

Is he thinking of anything when he stares blankly into space? Or is he just staring? Does he continue to analyze what’s happening from a medical standpoint or is he resigned to just wait? Does he worry about the end and if it will hurt? Does he just wish he could go on?

His answers to these questions have gone mostly unanswered, replaced by far away looks and silence.

Therefore we do not lose heart. Thought outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Cor. 4:16

So, it is important to keep our lives in perspective and Jay knows the importance of this. Life here on earth is just a blip compared to eternity, and his body here on earth is a mere shell, or as Paul called it, a tent, which contains the soul that will be clothed with our “heavenly dwelling” (2 Cor. 5:4).

He is fading. It is becoming difficult for him to swallow. His fine motor coordination is lessening so it is hard for him to hold silverware. Soon, I’ll be feeding him. When his ability to swallow ceases, no feeding tubes will be placed and fluids will be discontinued. How much time is left? I have no idea, but the very thought is unbearable. All I can do is cry out to God for strength.

Friday, December 07, 2007
And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffer-ing produces perseverance; perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. Romans 5:2-5

Today has been horrible. He woke up with a headache then started throwing up, followed by heaving hiccups. For intractable hiccups, Thorazine, an anti-psychotic drug, is sometimes prescribed. It’s a powerful nervous system depressant and tends to slow everything down. In someone with compromised health, it’s even more powerful. I am afraid of over medicating him, which scares me to death, because I could inadvertently stop his breathing. I hate seeing Jay with his eyes glassy and blank; I know it’s a side effect of the drugs. Why is his head tilting so far to the right? I try to straighten it out, but it won’t move.

At 5 p.m. the hospice nurse arrives and Jay has a fever of around 104 degrees. He suggests Tylenol but since Jay cannot swallow, he must go to the pharmacy for a suppository. Before he leaves, he tells me, “I think we’re coming to the place when you will be faced with making certain decisions regarding Jay’s care.”

What did he just say? That I have to decide Jay’s fate? I really don’t want that responsibility. Fortunately, God has given me the ability to remain calm in stressful situations and at that moment, it was as if time just stopped. The situation came clearly into focus and an instant calm came over me (I know that’s not my own innate ability).

“Well, I am not going to make any hasty decisions. I refuse to make any judgments until I have all my options.” I could hear this coming out of my mouth but wondered how I could do this alone.

“I have to make some calls while you go to the phar-macy,” I said.

It isn’t by coincidence that people come into our lives. I immediately called my friend, Debbie, who’s husband, Brad, is a physician; they are two of our closest friends.

“Where are you?” I asked, trying to sound cheerful, calm and collected.

“We’re almost to Springfield (a city 60 miles away) on our way to [our son’s] basketball game. Why? What’s wrong?” so much for my sounding nonchallant...

"Jay is really sick and the hospice nurse said I need to think about making decisions that I’m not prepared to do by myself!” my voice broke as I spoke.

“We’re on our way.” Said Debbie.
The nurse seemed to return in no time and adminis-tered the Tylenol.
“Is someone coming?” he said.
“Yes, I’ve called our doctor friend and he and his wife are on their way back from Springfield. I also need to call my brother, Mark. He’s an anesthesiologist and lives in Tulsa.”
So I paged Mark and fortunately he called back almost immediately.
“What’s up?”
With the same breaking voice, I explained what was going on.
“Can you come?” I said.
“I’ll be there as soon as I can.”

Soon, Brad and Debbie arrived and we could see that the fever had subsided a bit, but was still around 103 degrees. We packed Jay’s under-arms and groin areas with Zip-Loc bags full of ice to try to get his fever to subside.
“I really think he needs to be admitted. Let me call the ambulance for you.” said Brad.
Meanwhile, the weather was treacherous and the forecast was for freezing rain. I worried about my brother driving the 100 miles from Tulsa on this night. The phone rang around 8 p.m.

“I’m an hour out. I’m in the 4-wheel drive, so it won’t be a problem to get there.”
“OK, Markie. Be careful. I love you.”

Jay was admitted directly to an ER suite and was immediately started on fluids. When the ER physician came in I told her what had happened earlier that day: that he com-plained of a headache, was nauseous. Then it occurred to me that his neck was very stiff and rigid.
I hadn’t been the wife of a neurologist for 18 years for nothing! Those were classic signs of meningitis!

Immediately, the nurses loaded Jay up with “the big guns”: vancomycin and rocephin. These are two powerful antibiotics which are routinely used to treat meningitis. The physician attempted to take samples of Jay’s spinal fluid during a Lumbar Puncture in order to make a positive diagnosis, but his spine was so infiltrated with tumor, the needle was unable to penetrate the dura of his spinal cord. So meningitis was diagnosed by exception due to the way he responded to the antibiotic treatment.

He remained in the ER until around 4:15 a.m. when he was moved to the ICU. Mark and I went with him. ICU rules are such that a family member may stay in a patient’s room, but must leave at 6:30 a.m. when the nurses are making shift changes and assessments. I was never so relieved to sleep in a chair for those two hours, as I was that night. Although I don’t think I slept that much!

Jay remained in ICU for three days then was well enough to move to the medical/oncology floor. After moving to three different rooms, he eventually wound up in a very nice, large room reserved for “VIPs” of the hospital. The real way he ended up in that room was that the charge nurse on the medical-oncology floor had been a former patient of Jay’s and she spoke very fondly about how he had treated her.

“Dr. Duffield was my doctor!” She said. “He was so nice and took a lot of time to figure out what was wrong with me and I always appreciated that. So I knew that big room was going to be available, and I was able to arrange it for Dr. He gave so much to the hospital; it should give him its best!”

Because his nervous system was still depressed, Jay was having great difficulty swallowing and was at risk for aspirating. Eventually, he was given the OK to try pureed foods, which were in a word, disgusting. When I asked him what he wanted to eat, he asked for ice cream. So off to the cafeteria for frozen yogurt I went, and would sneak in chocolate malts occasionally.

During his stay, his doctor (for whom I had come to have a great deal of respect after a rocky start on my part) helped me come to the realization that Jay would not improve much more and he recommended discontinuing all treatments of fluids after we got home. This was like being hit by a ton of bricks!

I knew the time was coming, but I dreaded hearing that it was now a reality. I called his sisters and relayed the information and they came immediately to be by his side. They had been through so much growing up, they were not going to let him endure this alone. I know he was touched by their presence, as was I.

Jay was scheduled to be released on Monday, December 17, but on the 16th, was diagnosed with a contagious nosocomial bug called C-diff or Clostridium Difficile. This occurs when someone has been on antibiotics for an extended period of time. The normal flora, or, good bugs found in the gastrointestinal tract are destroyed by the antibiotic. This allows the clostridium bacteria to grow rapidly in the GI tract, causing substantial upset.

As a result, we all had to wear gowns and gloves when we entered his room. It’s very common for people in the hospital to contract other people’s bugs and this probably accounts for the reason Jay was diagnosed with meningitis, as well.

Jay came home from the hospital on December 19, 2007. The previous weekend, my friends, the Reeves’ and the Fisher’s, along with their children showed up at the house and put up all our outside Christmas lights, along with helping me finish up the inside decorating. I can never thank them enough for that gift. That’s just what friends do, they all said.

We celebrated Christmas in our bedroom! I had bought a small tree to put outside our bedroom door so Jay could see it and we put all our presents under it, rather than the large one in the living room. My parents were also with us for the first time, since we usually went to their house after Christmas. Jay had rebounded quite a bit and was feeling stronger since his return from the hospital, so he was able to enjoy the day as well. We just piled all the presents on his bed and like whirling dervishes, tore into all the boxes.

I had bought him a beautiful forest green cashmere sweater, which, when I bought, I wondered if he’d ever get to wear. He had made it! He could wear his sweater!
Little did I know, there was a small box under the tree with my name on it.

“Open that one. It’s for you.” He said.
“You went shopping? How’d you do that?” I joked.
“I have my ways.”
Inside was a beautiful 3-diamond pendant!
This is the story of the necklace….
While in the hospital, Brad Reeves had visited Jay and asked him if he had given any thought about a Christmas present for me.
“He was very clear in his instructions.” said Brad. “He told me he wanted a necklace with three diamonds that hang down off the chain.”
So one Saturday, Debbie and my other close friend, Cindy Fisher, went diamond hunting. They went to a local jeweler who had been established in Joplin for many years and told him what they were doing. After trying on several styles, they decided on one in particular.
“Take it to the hospital and show it to him!” Said Mr. Newton. Only in a small town….
And they took it to Jay for his approval.

I wear the pendant continuously now, although it is rarely seen. I know it’s there.

The weekend after Christmas, my entire family visited and we had a huge dinner. I had bought my traditional standing rib roast, but consented to letting everyone else bring the rest of the food. It was one of the most special and blessed days I will ever have.

Jay had already told me he wanted to sit at the table with us to eat dinner, so I helped him dress in his new sweater (which looked fabulous with the color of his eyes, by the way!) and some plaid flannel bottoms. He looked very snazzy! Mark and I got Jay into his chair and he motored into the living room where we blessed the food.

We had made room in the dining room for Jay to wheel up to the table, so I filled up his plate with prime rib and all the trimmings. As he ate, he laughed with us and helped us created the most loving and special memory I think I’ll ever have. I believe God gave Jay the strength to sit with us that evening. It was the most precious gift I could have received that Christmas.

Since all his fluids had been discontinued when he left the hospital, I impressed upon Jay how important it was for him to drink a lot of fluids (not like he didn’t already know this). Not really impressed, I more like begged him to drink a liter of fluid a day. And he complied. He seemed to improve during the next week or so, but I could tell he’d lost a lot of weight. I couldn’t get him to eat more than a few bites of anything, which frustrated me. But his kidneys were functioning well. We’d celebrate in the mornings when I emptied his Foley bag: “Whoo-hoo! 1000cc’s and it looks great! Way to go, honey!”

January 4, 2008
The day started out pretty much like any other had recently. The boys were still home on Christmas break and were bored. That afternoon, I fixed enchiladas with black beans. Jay was still having some residual effects of the C-Diff, but was beginning to get his appetite back. He ate a generous portion of enchiladas, which I was glad to see. Maybe things were turning around, I hoped.

We had a visit from our good friends Brent and Melanie Hauser, who had been faithful to come about once a week to check on us. During our visit, Jay listened and smiled and joined in with some of the conversation. It was good to see him laugh!

The beginning of the end –
After our friends left, the stomach upset began again and with a vengeance. We were up most of the night changing and cleaning up. During this time, I saw to it that Jay drink a lot of fluids because I knew he’d be dehydrated with the amount of fluids he was losing. About 5 a.m. we both fell asleep and slept til approximately 10 a.m. It was supposed to be a lazy Saturday afternoon: I emptied the Foley bag with the same clear 1000cc’s and assumed all was well. It was not.

By one p.m. I called his doctor who told me to give Jay some immodium and check in an hour. At 2 p.m. I noticed he had not had any fluid output through his Foley catheter and thought it was strange, given the amount of fluids he was drinking: at least eight ounces an hour.

I knew in my heart his kidney’s had shut down, He was beginning to have fuzzy speech tracking poorly with his eyes.

I called my friend Cindy to seek advice regarding what to say to the kids.
“You have to be honest with them and tell them what’s happening.”
I called them in from playing outside, gathered them in the bedroom and they knew by my manner something was wrong.
“Daddy and I wanted you to come in so we could tell you what’s happening. But first we want to tell each of you something.” So I gathered Andrew in my arms and we sat against my bed facing Jay in his hospital bed.

As I spoke, Jay was aware of every word I said. “Daddy is so proud of you! He loves you very much and wants you to do your very best at everything you do. Daddy is so lucky to have you for a son; you have been such a blessing to him and he wanted me to tell you that.” When I finished, Jay nodded in acknowledgement.

Then it was Cole’s turn. “Daddy is so glad you are his son. You’ve been such a blessing to him and he is so proud of the young man you are becoming and to have been able to share so many fun times with you. He wants you to know how very important it is to always do your very best and to know that God will be with you wherever you go and so will Dad.”

Then we all took hands and prayed. We told God how sad we were; how afraid we were; how mad we were that Daddy would be leaving us. We asked for strength, and courage, and guidance through everything we were going through.

Within hours, Jay was completely unaware of his surroundings.

I called my parents. “Can you come right now? Jay isn’t doing well.”
“We’ll be there in less than an hour.” My mother replied.

It just so happened that Jay’s sister, Joni, and her family had been visiting their mother in Grove that day. They called and wanted to come by for a visit. “You should come soon. He’s not doing well.” Their children, Lauren and Seth, were a welcome sight for our Cole and Andrew. Especially since they had just spent the day watching their dad slipping slowly away. The kids played and had a great time just being kids. God has a way of easing everyone’s burden in just the right way. For Cole and Andrew, that release was in the form of their cousins.

That night, I pushed my bed up against Jay’s and slept with my head at the foot of my bed so I could see him sleeping. I held his hand, and at times, climbed onto his bed with him. “I love you,” I whispered. “You’re the love of my life. It’s OK if you want to go, because the boys and I will be all right.” I said. “I just want you to know that if I had to do this all over again, I would – in a heartbeat – and not change a single thing.” I just kept repeating, “I love you….”

I don’t recall sleeping at all that night and around 5:30 a.m. my mother and I were in the kitchen.
“Do you want Mark to come?” she said. “I know he’d be here as soon as you asked him.”
I knew he’d be up already, so I called and told him what was going on.
“I’ll be there by 9 a.m.” he responded.

During that time, I paged his doctor and let him know what was going on. “Should I bring him to the hospital?” I asked.
“The reality of the situation is that he would get the same kind of care at the hospital that he’s getting at home. The only thing they would do is to make sure he’s comfortable, which is what you are already doing. Frankly, the move from the house to the hospital would be very traumatic for him. I really believe he’s in the best possible place, if you’re OK with it.”
This was the hardest decision I’ve ever made. While they never verbalized their opinion, I had the distinct impression my parents thought I should take Jay to the hospital and wait for the inevitable; that he should not die at home. That has such a strange connotation. After all, shouldn’t we do every-thing possible to save life?
It is a jarring reality to conclude that the best possible care is to not try to control the outcome. While Jay was under hospice care, I came to realize that dying is a part of living. To die peacefully and with dignity in the place one loves best was the best solution for us.
I felt the distinct need to go to church that morning and the boys both said they would like to go too, which was unusual, since they usually groaned about church: not exciting enough, they said. So we went to church together and it just happened to be communion Sunday.

As we were nearing the communion rail, a thought came to my mind. This ritual, communion, is God’s way of preparing us for eternity. We come to break bread and drink wine to affirm our belief in Christ’s resurrection. I had had communion pretty much the first Sunday of the month for my entire life, and could never quite get my head wrapped around the concept of eternity. But for the first time, communion made complete sense to me. Christ had to die first, so that when Jay died, he would be able to live with Him in eternal glory. What an incredible joy that was!
Joni, Craig, Lauren and Seth stopped by later that afternoon on their way home to Rolla. I was glad they were able to see Jay again before they left, although he had declined even more that afternoon.
On Monday, my mother and I had to run some errands and the hospice volunteer, a dear man who had been faithful to visit every Monday, stayed with Jay. While we were out, my friend, Melanie Hauser called to say she’d been by to see Jay and that she’d come back by on her way home later that afternoon.

Such a God Thing
Shortly before 3 p.m. Monday, January 7, 2008, Melanie stopped by. When Jay was in the hospital before Christmas, I had asked Melanie if, when the time came, she would speak at Jay’s celebration service. She’s a gifted speaker, but most importantly, a Godly woman. I could think of noone better to speak, but the wife of one of Jay’s oldest friends.
When she arrived we decided to just look through the Bible and pick out verses that we thought fit Jay and his situation. Beginning at ten minutes to three, we read the following verses aloud:

Matt 25:21
His master replied, “Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!’

Romans 5: 2b-5:
And we rejoice in the hope of the glory of God. 3Not only so, but we also re-joice in our sufferings, because we know that suffering produces perseverance; 4perserverance, character; and character hope. And hope does not disappoint us, be-cause God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Philippians 4:11b-13:
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

Isaiah 43: 1b-2
“Fear not, for I have redeemed you; I have summoned you by name; you are mine.
2When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

Psalm 91: 1-2; 4a
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
2I will say to the LORD, ‘He is my refuge and my fortress, my God, in whom I trust.
4aHe will cover you with his feathers, and under his wings you will find refuge

At 3:03 p.m. I walked into our bedroom and Jay had just slipped away peacefully, into God’s awaiting arms. It was as though the scripture we were reading was a send-off; our way of leading him as far as we could so that he could reach out, touch the hand of God and continue his journey hand in hand.

I know immediately without touching him he has gone.

Amazingly, my very first thought is, “Thank you, God.” Then I kick into calm, survivor, action mode: I called for Melanie, a registered nurse, to come to the bedroom. Then I called for my mother.
“He’s gone.” I said.
Mel felt for a pulse just as a matter of formality, but knew, also, that it was so.
The kids would be home in a few minutes! What should we do about them? I have to make phone calls: hospice first? Debbie is in Hawaii. Cindy needs to know. Joni, Barbara and Jay’s mom need to know. Whom to call first?
At 3:30, the boys got off the bus and knew as soon as they came in the door that something was wrong. I gathered them on the sofa and told them that Daddy had died just a few minutes before they came home from school. That he just went to sleep and it was very peaceful. That Mrs. Hauser, Grandmother and I were reading the Bible and it was like we were giving him a going away party. That I was so sorry for them and I wish I could make it better and that it wasn’t true. That I loved them very much.
Andrew cried openly; Cole stared blankly ahead, as though not registering. That worried me greatly.
I told them they could go see Daddy and what he looked and felt like. But if they didn’t want to see him, they didn’t have to. With tears in his eyes, Andrew followed me into the bedroom. He nestled into my arm and quietly cried. Then he gently touched Jay’s arm and went downstairs. Cole said he didn’t want to see Jay at all, and that was OK. But a few minutes later, he came back upstairs and peeked into the bedroom.
“Do you want to go in?” I asked. A shy nod was the answer. We both went in and I explained why Daddy looked the way he did and the scientific aspect of dying. It seemed as though Cole needed technical details. The physiology of dying was important to him at that moment. Like his brother, Cole touched Jay gently on the arm, said, “I love you Dad” and left the bedroom.
Kids are amazing and deal with things in such different ways. Andrew needs to be active when he’s under stress. He went outside and skateboarded. Cole remained in the house going back and forth between the living room and the bedroom to check on Jay. As people came to the house, he ushered them back to the bedroom. By the time the funeral home people arrived, Cole was supervising the process of taking Jay from our home. In those few moments, I glimpsed the part of the man I suspect he will become in years to come: caring, compassionate, tender. I had never been so proud of him as I was then.
The next few days were a blur: details were overwhelming. Phone calls needed to be made to the usual places. Arrangements had to be made. What kind of service did I want? What music, scriptures? Who were the casketbearers? What kind of casket? What kind of vault?
I suppose I was lucky in one sense because I had had a long time to think about most of these things, so everything just kind of fell into place. I began to plan the celebration of life to honor Jay. This couldn’t be just any service. It had to be special. It had to be personal. It had to reflect Jay. It had to include things he loved. So my friend Cindy, along with my mother and I sat at our kitchen table and I brainstormed songs I knew were Jay’s favorites. Within the hour, Cindy had written down at least 10 songs and those were just for the prelude!
Jay’s musical tastes were widely varied, but his worship music was strictly traditional. I knew he wanted Beethoven’s “Ode to Joy” as a congregational hymn.
“Do you suppose the choir would sing a song? And do you think Glenda Austin would play the piano?” I wondered out loud. Glenda and Gloria are sisters with truly God-given musical gifts.
I pulled out my iPod and started listening. Then it all began to gel. Gloria would play several favorite pieces for the prelude, some of which were highly classical: Panis Angelicus; Meditation from Thais. Glenda graciously consented to play part of Rachmaninov’s piano Concerto in C minor. I knew she could handle it. While the service was a formal, traditional service, I wanted to share Jay’s life with our friends. So we gathered as many pictures together as we could, and Jay’s sister and brother-in-law, Barbara and Doug, lovingly put together a wonderful slide show. None of our friends past high school knew what Jay looked like with hair! It was such a loving and touching tribute.
The choir sounded like angels as they sang “It is Well With My Soul.”
Each casketbearer agreed to read scripture and since those men consisted of family members, those verses were that much more special. Finally, as the service ended, Glenda played Claire de Lune. Each of the songs had special signific-ance for the two of us, but Claire de Lune was especially touching.
A couple of months before, Jay sat in the living room and listened as I played that song on the piano (not very well) for him. The sun was just setting and the house was quiet. God allowed me to get through it without bungling most of the notes! As I finished, I looked at Jay and he began to cry. In the entire time I had known him, this was only the second time I had seen him cry. The first time was when he heard another classical piece called The Flower Duet from the opera, Lakme, a beautiful, ethereal work. I believe that for Jay, music was a spiritual experience. And I knew the music for his service had to be the perfect combination of his favorites.
The most extraordinary aspect of his celebration was the message, given by Melanie Hauser. She captured Jay and his entire raison d’etre so completely and lovingly, we could practically hear God speaking directly through her. Dozens of people in the days following said that her message caused them to pause and take stock of their lives; they were touched by God’s use of her that day.
I really think Jay would have loved his service; I hope he did as he sat with the angels, looked down and listened.

The days following
The boys and I came home from Grove the Sunday following the Saturday morning service. They both decided to return to school the next day and I was glad to have them resume their normal routines after such a traumatic week.
I filled the next several days with the obligatory paper-work and phone calls that needed to be made. I tried to stay busy as possible because the quiet of the house without Jay was the most ear-splitting, deafening silence I’d ever encoun-tered. I immediately removed any signs of illness that re-mained in our bathroom: sterile gloves; IV tubing; gauze and paper tape; syringes; as quickly as I could I threw it all away. Took it completely out of the house. I simply couldn’t be re-minded of the last several heartbreaking months. Surely if I got rid of all those things, it never really happened. Did it?
I began to go to the YMCA and exercise, which on its face, was a good thing. But if I stayed out of the house, I didn’t have to face the emptiness. Did I?
Life seemed so otherworldly. Almost like what I imagine an out of body experience to be like. I had to detatch myself from the month so it wouldn’t seem to final.
Cards began pouring in, which helped tremendously. I looked forward to the mail each day and appreciated the time each person took to send their well-wishes.
Days turned into weeks, and all of a sudden, February had arrived. I dreaded that first week. Our 19th wedding anni-versary would have been on the fourth, followed by my birth-day on the fifth. My dear friends Cindy, Debbie and Melanie and I all met for lunch on the fourth to celebrate our birthdays. It turns out that three out of the four of us have birthdays between the second and fifth days of that month! I tried to tell myself that the day was not extraordinary because Jay and I had long stopped making a big deal out of our anniversary. It was generally just another day. But beneath my sunny exterior, my heart was breaking.
So many plans. So many places we had yet to travel and share: Florence and The David, Rome and the Coliseum …New York and the Metropolitan Opera…Maui…even to Grove to enjoy the sunsets. Nothing like having the rug jerked right out from under you.
People are generally wonderful and caring. We’ve all experienced not knowing the right words to say and it’s very odd to be on the receiving end of those sentiments. “Please let me know if I can do anything for you,” was the generous offer submitted by so many caring friends. I knew each person genuinely meant those words, but I wouldn’t allow myself to “burden” anyone with my sadness. Only those closest to me could dig out the truth: “No, I wasn’t doing OK! I was - and am - de-vastated! Can you fix that for me?”

Congratulations to me! I had just been successfully initiated into that exclusive club of women who now generally sit together at church…at any church, not just mine.

A few more days pass and get more and more difficult. I begin to cry often and without provocation. Then the tears just stop as quickly as they began. How strange!

I look around the house at the mess and clutter that I’ve been avoiding for the last month. I need to do something with all this stuff, but I really don’t want to right now. I’ll get to it later. Right now, I just want to sit down. I seem to wander around in circles, never completing any tasks. So I just leave the house and stay away until the boys get home from school.

They have been sleeping on a queen-sized air mattress in the floor of my bedroom since Jay died. They actually took turns sleeping in his hospital bed until the hospice people removed it. I lay in it during the day while they were at school. I breathed in deeply trying to catch a familiar scent. Funny how it had already faded. I don’t really care how long the boys stay where they are. They can sleep there as long as they want. It seems as though none of us wants to be alone in our own rooms at night, so we tacitly agree to hang out together.

I cannot believe I’m going to spend the next 40 or 50 years like this. The nagging question keeps lurking: Will I really be alone from now on? It’s not that I want or need someone to take care of me (although I do like that). I simply want to share my life with someone. I cannot imagine sharing it with anyone but Jay, however. My mind simply can’t comprehend any other scenario.

Family dynamics
Cole’s adolescent hormones are starting to kick in. Oh my stars! I have no idea what to tell him. I have to have “the talk” with him. How do I tell him about all that guy-stuff? I don’t even know about all that guy-stuff! How do I teach him to look for adventure, to take risks, to do guy stuff since I’m simply not wired to do those things? His grief is displayed in his anger. He’s mad at the world, mad at me, mad at his brother. And who could blame him, for crying-out-loud? It’s all I can do to remember not to take it personally.

How much of his attitude is typical pre-teen testing and how much is manifested by the devastation he’s experiencing and doesn’t know how to ex-press?
I go online to look for books on how to be a teenager. It’s been a long time since I was that age! And my experiences are obviously nothing like his. How can I tell him what he needs to know? This is so much bigger than I am.

I have to look for victories in the little things though. Today at the store, I was pouring over the myriad tubes of teenage skin cleanser. Which one of these does Cole need? I have no clue! I didn’t have a skin problem when I was his age. Fortunately Debbie and Grace walked past…”You want to know which ones of those are the best?”

“Are there cows in Texas?”
“Matt uses this kind and it works really well. But he also uses this other kind because his skin is getting worse.”

So I pick up the first kind and throw it in the basket. Looks good to me. And besides, it’s commercials have been around forever. It must work pretty well to still be on the market!
“Cole, Mrs. Reeves said this is what Matt uses on his skin and he really likes it.” I mentioned casually when back home.
“Well, if it’s good enough for Matt, it sounds good to me,” he replied.
Have I found an opening? If I can convince Cole that a ninth grader to whom he looks up uses brand X, can I use that same ninth grader logic in other instances?
“…Cole, “Joe” keeps his room clean every day.., “Steve” offers to take the dishes out of the dishwasher . . . “Billy” doesn’t try to pummel his brother every chance he gets… “Ralph” offers to vacuum the floor and cleans his bathroom every day . . . ” Could this possibly work? It’s certainly worth a try.

April 8, 2008
Yesterday marked 3 months of Jay’s new adventure in the presence of Perfection. It’s strange how things transpire… Over the weekend my computer contracted a virus and had to be totally gutted. I put all my files on a zip drive, thinking every-thing was safe, but obviously, I don’t know how to do that cor-rectly, because I ended up losing all my e-mail contacts and iTunes songs. I’m not so put out by the former as I am by the latter: those songs represented a lot of time to get just the right mix, not to mention several dollars!
I decided to try to put some of my music back onto my iPod and gathered up several CDs to copy. I got about half-way through the first CD and began to get this nauseous feel-ing in my gut. But I continued to pick out various songs for a bit. Suddenly, it dawned on me I was copying songs that represented 27 years of memories. I simply couldn’t go on. I started back down stairs to deliver the CDs to their home in the basement and by the time I got there, I was heaving sobs. I lay on the floor for several minutes engulfed in sadness, anger, lonliness.

Experiencing God
This spring, I’ve been involved with a Bible Study called, “Experiencing God”. I can say, unequivocally, this is the best study I’ve ever done. In fact, I think it’s been a life-changing “experience”. I’ve begun to see God in a whole dif-ferent light. I’ve discovered that God isn’t here to see what I want to do, then follow me around, picking up the pieces. God has a plan for me and it’s up to me to look for his cues daily and follow those cues. It’s up to me to watch for him to reveal His plan. So that’s my daily prayer: “Show me the plan!” I’m learning to surrender my own ideas and be open to His ideas. I’m learning to be patient. I’m learning to stay put until I can absolutely say, “Not my will, but Yours.”
The human-ness in me wants to proceed now and wor-ry later about whether or not the right decisions were made. I know that from this point in my life, God has a plan for me . . .just as he has had plans for me up to this point. It’s a thrill to look back and connect the dots to see what spiritual markers have dotted the landscape of my life.
Something else I’m learning, is to make God the head of our household. Prior to this point, I depended on Jay to “fix” things. Now, he wasn’t a “fixer” mechanically, but I counted on him to “fix” things in other ways: financially, emotionally, physi-cally.
So here’s a thought, although certainly not original: God, Christ and the Holy Spirit are one in essence, although they are separate entities, physically. God works through Chr-ist, who can do nothing without the Father. The triune is com-pleted by the Holy Spirit who intercedes to and from God in our behalf and who represents Christ for us.
In the same way, the family as intended by God, is made up of a father, a mother and children. What happens when there isn’t a dad, through no means of one’s own? I be-lieve it means that God is now the head of our house (although he should have been all along). He’s the “fixer” now.
So that leads me back to my iPod….I have a habit of yelling. Yelling at inanimate objects when they don’t work, un-fortunately, yelling at my sons (on which I’m constantly work-ing), and yes, even yelling at God.
“If you’re going to be the head of this house, I need a hug right now!” I yelled. As the days are progressing, I’m more and more keenly aware of the finality of Jay’s absence. I can still hardly believe he’s gone. The ache from the hole in my heart seems to be getting more marked.
I’m a touchy person. I tend to pat people’s arms when I talk to them. I often use both hands when I shake hands. I like hugs. Who’s going to hug me now when I’m lying on the basement floor in despair?
So here’s how God hugs: two hours later, a beautiful bouquet of flowers arrive at my door, completely unexpected, but most appreciated. “Thinking of you today, love, Debbie,” read the card. Thank you, God! That was a nice touch, al-though, I really wanted you to physically hug me! Later that night, my friend, Cindy, called. “I just wanted to let you know I was thinking about you today and tell you that I love you.” We had a long conversation and I told her about my day and thanked her for the “hug” and the earlier “hug” I’d received.
When I hung up, I was humbled. God had just used two of my closest friends to send their love (and His heavenly hug) to me on that day, when I was especially down.
The next day I received a card in the mail. It had no re-turn address, and inside was a hand-written note from some-one in my church. The note said that the author wished to re-main anonymous, but that she would be my secret prayer partner. She said she had been praying already for us and would, from time-to-time, send words of encouragement through the mail. She mentioned she was an elderly woman who had known hardship during her lifetime.
Wow! That was a big hug!
It’s important to see God in every instance of life. Op-portunities to experience Him are limitless, if we just allow our-selves to be open to them. Our tendencies to be so self-centered prohibit us from His abounding compassion.
What about the rest of my life?
That’s the question of the day. A few years back, I re-turned to school to become a nurse. I anticipated the day that I would be the sole breadwinner at home and knew I need mar-ketable skills. I thought I felt God’s urging for quite some time before I decided to complete my science prerequisites and ap-ply to nursing school.
Contrary to the first time around in college, I love school! I loved to see how miraculous the human body is. I simply cannot see how one fails to recognize that a divine Creator had no part in designing us; for we’re just too complex to work properly by chance. I find it astounding that scientists, who rely on proof and tests, can be so opposed to the idea of God. Are their egos really so fragile? Is the price they’ll pay in the end really worth their determination to disagree?
Friday, April 18, 2008
I have just returned from Pittsburg, Kansas, where I visited with the head of the nursing department at Pittsburg State University about transferring to their program as a senior instead of starting all over again as a junior. Her response was as I had expected: there weren’t any open spots in the senior class and the numbers are regulated by the Kansas State Board of Nursing, so the school is unable to make changes to those numbers. She did say that I was welcome to write a let-ter requesting to be placed in the class if any openings came available, which is doubtful.
God what do you want me to do? I’ll do whatever you want, I just need to have a clue. Do you want me to just get a job? If so, would you provide me with one? Do you want me to start all over is school? If so, that’s what I’ll do. I just need to know. I’ll do whatever you want me to. I look forward to the revelation of your plan because I know you have great plans. Please just let me in on them! Help me to be receptive to You. Help me see you working around me. Help me be aware of Your presence.
Do You want me to sell the house? I don’t have enough money to pay monthly expenses as it is. I need either a job or a different house. You know which one I will ultimately end up with. Please reveal Your plan to me so I can work toward help-ing you accomplish that plan.
When I brought up the idea of selling the house to the boys, they actually took it better than expected. Andrew wanted to know if we were “poor”. I told him that just because we didn’t have as much money as we used to, we were not “poor”, and that God would provide for us exactly what we needed. That seemed to ease his fears a bit.
This spring, I’ve been taking a Bible Study called “Ex-periencing God”, by Henry Blackaby. I think it’s changed com-pletely the way I see my relationship with Him. I’m learning he really does desire a personal relationship with me, but it cannot be a one-way street where He’s doing all the work. In the past, I have always sat back and waited for Him to “do His thing” without demonstrating my love to Him. Lately, he seems to be at the forefront of all my thoughts, which is exactly what he wants! I’m learning to look for Him in unexpected places throughout my day. I’m learning to see those times as “God encounters.” (Blackaby).
I know I have a lot more to learn about experiencing Him, but I think I’m on the right track. I long to fellowship with him and know with certainty when He’s speaking to me. I pray that he will help me be discerning and receptive to his voice and cir-cumstances that he orchestrates.
August 2008
Due to technical problems on my part, I was not ac-cepted back into a nursing program for this fall. I knew I wouldn’t be accepted as a transfer at PSU or that I would be admitted into their program as a junior because my undergra-duate grades were not competitive. Even though I’d already had a year of nursing school at nearby Missouri Southern State University and had finished with a 3.175 – in spite of tak-ing care of Jay and my family. I was not accepted into the MSSU program because I had submitted my application two weeks too late, and due to university policy, no exceptions would be made.
So it looks like school is quickly loosing it’s appeal. Af-ter much moping and feeling sorry for myself, I’ve come to the conclusion that if I was only supposed to spend one year in nursing school to know how to care for Jay during his illness, then that year was not spent in vain and it was completely worth it.
So now what? God, WHAT IS YOUR PLAN? WILL YOU PLEASE LET ME IN ON IT? I DON’T CARE WHERE YOU SEND ME OR WHAT YOU WANT ME TO DO! I JUST WANT TO KNOW. Just a glimpse. Please? I’ll do anything! Please take the scales from my eyes, open my ears and my heart to Your word and Your plan!
I’ve applied to several jobs, all without success. God, I need a job!

observations on life so far

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Monday, February 8, 2010

God Hugs - July 2008

Sunday, February 7, 2010

first post, based on stuff I've kept track