A diagnosis of terminal cancer has a way of concentrating life, sunsets are more colorful, children are precious and family time is cherished above all else; but even with a renewed focus, life still finds a way to crowd out those moments the way it was for our family as 2013 was coming to an end.

The holidays had been hectic but Libby still managed to have more energy than all of us in spite of her diagnosis, all while starting on a new trial drug. Nathan and Bethany were planning to move from Augusta, GA to Rome, GA and a diagnosis of Alzheimer’s was forcing my dad to move out of his house in Winchester, TN.

My dad was staying with us during the holidays and Libby had scheduled a trip on New Year’s Eve to a local assisted living center to see if he wanted to move there; following our visit Libby said, “Barry, I don’t feel so good, I think I’ll…”,  but before she say another word, she threw up.  My first instinct was to blame the upset stomach on the meal we had at the assisted living center but since no one else showed any symptoms we just assumed it was the stomach flu or a side effect from the new drug.

A week before, Libby had been very excited about a sweater that she had bought for my Christmas, and I had been trying to convince her that the style of sweater she bought was better suited for an older person.  The “discussion” escalated when Libby explained that I was an older person and, in fact, about to be a grandfather. Now, in hindsight, my suggestion to return the sweater could have gone much smoother had I not mentioned that I saw Mr. Rogers wearing that same sweater on his TV show.

My dad, who rarely brags on anything, walked into our house on that New Year’s Eve and noticing the folded Christmas sweater on the couch he said, “That sure is a good looking sweater.”

Libby was glaring at me when she said,”You’re right Granddad it is a beautiful sweater and since you appreciate it, just consider it to be your Christmas present.”

Libby’s nausea seemed better after a nap so I decided to cook supper (OK, I microwaved some Campbell’s Tomato Soup opened a sleeve of Saltines), My dad was anxious to try on the sweater and get his daughter-in-law’s approval so he stood at attention as if waiting for inspection wearing “his” new sweater when Libby came into the kitchen to eat. Unfortunately instead of getting her approval for the sweater, Libby’s nausea returned with a vengeance.

Dad was having a difficult time processing the events through the fog of Alzheimer’s and he couldn’t be consoled as he kept looking down at his feet saying, “She doesn’t like my new sweater…it even made her sick… Maybe you’ll should just return it to the store.”

Later that day Libby was able to get relief from the nausea by lying down flat and I was eventually able to convince my dad that she really did think that the sweater looked good on him.

That night when we were ready to go to bed Libby said, “I’ll just sleep on the couch tonight because I am afraid that if I stand up, I’ll be sick.” Ignoring Libby’s objections and her fears that I would hurt my back, I carried her to the bedroom where she could rest comfortably in her own bed instead of sleeping in the living room.

Turning off the TV just as the crystal ball started to drop during Dick Clark’s New Year’s Rockin’ Eve (oddly enough without Dick Clark) I lifted Libby into my arms. I started laughing as I carried her into our room saying,”Do you remember the last time I carried you across a threshold?” Libby giggle like a teenage girl and said, “Yes I do remember that night, although I was a lot younger and lighter the last time.”

On June 9th 1979 I carried Libby across a threshold and we slept in the same bed for the first time. The irony in this story is that tonight December 31,2013, almost 35 years later, I was carrying Libby across the threshold and we were about to sleep in the same bed for the last time.

 

 

 

 

“Hey dad, what are you guys doing?”  It was just before Thanksgiving 2013 and Nathan was on the phone making small talk.  Now, anyone who knows Nathan, knows two things about him; first he doesn’t like to talk on the phone  and secondly, he doesn’t make small talk, so when he phoned me and didn’t state the purpose of his call within the first thirty seconds, I knew something was up.

Libby and I had gone out to eat with Helen and Kelly Hawkins at Chili’s downtown and the waitress had just arrived at our table to take our food order when my cell phone rang and Nathan asked, “Hey dad what are you doing?”

Libby had already given me a stern look because I had answered my cell phone in the first place but her face softened when I turned the screen toward her and she saw the image of our youngest son.  After a brief conversation I put away my phone and explained to everyone at the table that he wanted talk later when we were alone, that’s when Libby (and Helen) both gave me quizzical looks.

Libby was never good about hiding her curiosity whether it was gift that she had yet to open or a story that someone promised to tell and she did not suffer quietly.  When we finally left the restaurant Libby’s curiosity was at a fever pitch as she hurried us toward the truck grabbing my phone as soon as we sat down and dialing Nathan’s number.  The curiosity ramped up a little more when Nathan answered and said, “Hey Mom, Hey Dad, let me put you on speaker so Bethany can be in on the conversation……”

By February of 2013 Libby’s tumor markers had dropped below 200 following a high water mark of over 2000, needless to say we were very excited with the results and life was good.

 I’m Popeye the sailor man, I live in a garbage can;

I like to go swimin’ with bald headed women;

I’m Popeye the sailor man,          Toot, Toot.

My niece, Samantha Gilley, battled cancer from the beginning of her life until it ended 21 years later.  As a child Sam loved to sing that modified Popeye song which was adorable for a 5 year old who had lost all of her hair (or at least it was adorable the first 50 times she sang it).

One day as Libby and I were driving back to Chattanooga following a business trip to Sevierville, Libby began singing that same Popeye song recalling some of the things that she and Sam had talked about while going through chemotherapy treatments; such things as, how cold it can get without hair, the strange metallic taste from chemo and how only very strong tastes are present after chemo, such as really salty, real spicy or real sweet things.

I had a date night planned for this particular evening which included tickets to ride the Tennessee Valley Railroad’s Valentine Dinner excursion.  Libby had gotten dressed for the evening before we left Sevierville, but now she was having trouble making a decision about which of the five wigs she would wear for our date.

As we traveled south on I-75, we were making good time until the traffic thickened just north of Cleveland and we began to wonder if we were going to make our train.  As we sat in the stop-and-go traffic I noticed that the guy in the lane beside us was driving a similar truck,  I nodded my head in his direction as is customary according to the guy-code handbook, signifying that he had good taste in trucks.  The driver acknowledged my greeting with a much deeper exaggerated nod of his head which, in guy-code, meant, ” You have a nice truck AND a pretty wife”.

Libby was in a silly mood after singing the Popeye song and oblivious to our head nodding; besides she was still preoccupied trying to decide on a wig color as she tried on each different wig and hat combination.  In the course of 15 minutes Libby alternated several times between red headed, bald, white haired, bald, a hat, brown hair, bald, etc. finally she settled on the white haired wig you can see in the photograph below.

 

Many who watched Libby during her five-year battle against breast cancer may have followed a few of the decisions that we were asked to make nearly every time we went to an oncology appointment whether it was trying a new experimental drug, agreeing to be a part of study or the eventual decision to stop all treatments. However, the most difficult decision that Libby faced in those five years was not a medical decision, it involved teaching.

Libby’s teaching career actually began at age fourteen when she was asked to teach a young girl’s Sunday School class at her dad’s church, Flintstone Baptist, that is, unless you count the times when she “taught” or more accurately “preached to” her younger sisters in a makeshift schoolroom in the family basement.

Whether in public schools, at the kitchen table or in our church, teaching was a lifetime calling to Libby and not just a job; which is why Dr. Schlabach’s advice early in 2013 broke her heart.  Libby’s doctor explained that her white blood cell count was staying dangerously low making her more susceptible to infection and because of that, he wanted her to quit teaching.  When Libby objected, Dr. Schlabach said that if she could teach while wearing gloves, surgical gown, a sterile mask and refrain from touching or hugging the children, then she could continue teaching a little longer. Libby reluctantly agreed to suspend her role as teacher at our church because she could not imagine teaching without hugging her kids.

Later Libby explained why it was so hard to give up her role as teacher when she said, “Teaching children is my gift, its what God designed me to do; without teaching I feel useless…”

Thankfully, Libby did realize later that as children’s ministry director she could manage and inspire the other teachers in the kid’s program and continue to influence young lives indirectly.  In fact, all of the programs and fund raisers that Libby created in our church are still being carried out, in part, because of Libby’s commitment, influence and love of children.

The following comments were posted in Caring Bridge on January 11, 2013.

Libby and her mom Kathleen Willis

“Hey Libby, how are you doing?”  Libby and I both heard the question and immediately started looking around the crowded oncology waiting room in an attempt to locate the face that went with that question, eventually noticing a friend that we hadn’t seen in several years motioning to us from the other side of the waiting room.

Libby and I had just received some very troubling news from Dr. Schlabach and we had taken a few minutes to compose ourselves before leaving through the crowd of patients waiting at the University Oncology Center. Preoccupied with this devastating new information, we were purposely avoiding eye contact when we heard someone calling, “Hey Libby, how are you doing?”

Now before Libby’s cancer diagnosis when someone said, “How are you doing?” we both assumed it was the semi-rhetorical southern greeting, to which nearly every response was, “Good…how ’bout you?”  But ever since Libby’s diagnosis, people would inevitably ask Libby,  “How are you doing?” and they really meant it as a question with genuine concern for her health, not simply a greeting.

Libby recognized the face that went with the voice and after a quick hug she began responding to our friend’s question by answering,  “Well I’m not doing that great, you see …”.  Libby was interrupted mid sentence by our friend who began to tell us about a medical problem of her own (although in my opinion, her diagnosis paled in comparison to the news we had just received) then buoyed by Libby’s concern and compassion, the list of complaints and ailments grew to include other members of her family and her neighbor’s dog (Okay, I made up that last part).

Libby handled the situation the same way she had her whole life, although her eyes were still red and puffy following our conversation and prayer with Dr. Schlabach, she consoled her friend, hanging on every word, clutching both hands lifting and dropping them slightly on occasions to emphasize a point she was making.

Our friend was consoled and comforted by Libby on that day although she never asked why we were in an oncology waiting room nor did she notice how Libby’s voice cracked when she said, “I promise that I will pray for you, cancer can be a very scary thing.”

Just minutes before Dr. Schlabach told Libby that he was out of treatment options and she probably had only a few months left to live, so we were the ones with the bad news, we were the ones who needed comfort. I selfishly resented others wanting a piece of Libby, I resented people asking my sick wife to pray for them and console them.

Later that day, when we were alone, I told Libby that I thought she should concentrate on her health and on the time we had together instead of spending time and energy on other people, but my wife informed me, “We are not the only ones hurting, besides I can’t just stop caring”.  Libby’s very nature was compassion and those who knew her best will testify that she cared for others more than herself for the rest of her life.

It doesn’t matter if it is a heart attack, stroke or cancer, family members and the patient experiencing the traumatic medical event will almost always describe their emotions as if they are on a roller coaster. Whether its the inflection in the voice of the doctor during morning rounds or positive test results, we are sometimes flooded with euphoria at the mere hint of improvement.  But then, just as quickly, because of a hesitation in the voice of that same doctor or a bad test result, the climbing roller coaster takes a sudden turn downhill, pulling everyone down as the ride continues.

Libby and I had several of those ups and downs during her five year battle with breast cancer, even more in the final sixteen months, but I learned a few things over the course of time and I recorded one of those lessons in Libby’s Caring Bridge site:

By Barry Gilley — Jan 11, 2013 5:04pm

When I was a boy my brothers and I had a go-cart powered by an old Briggs and Stratton engine that we always seemed to be working on.  The motor had a mechanical governor which controlled the throttle and it fascinated me to watch as the engine was revved up the governor reduced the fuel flow to keep the engine from getting too fast and when the motor slowed too quickly, the governor increased the fuel to keep the engine from stalling. 

I was thinking about that old go cart the other day and how important that governor was to the health of that engine.  Now, this may come as a shock to some of you but Libby can be somewhat excitable, I, on the other hand have very few spontaneous outburst of excitement (okay none so far).   I tend to act like that Briggs and Stratton governor in our relationship because when medical tests come back with really good results (i.e. tumor markers at 893 down from 1300 earlier) I will talk to Libby about it being one test of many that we will need to monitor for the rest of her life.  Then when we have bad news (i.e. stage four peritoneal carcinomatosis) I will talk to Libby about treatment options and our many blessings.  If there is one thing I have learned in my life it is that the bad news we get is usually not as bad as we initially think, and the good news will probably be tempered later with other news that is not nearly as good.  I am certainly not a pessimist but I am a governor.