Our Love Song


Following Libby’s final oncologist’s appointment we settled into a routine with Hospice Care coming to our house twice a week and many of Libby’s dear friends volunteering to sit with her while I went to my office in a futile attempt to work.

By the end of February the cancer and the pain medications began to take their toll on the amount of conscious time that Libby had for visitors as I weighed the needs of Libby’s failing health against the well-intentioned desires of those wanting to see her.  Weekends were especially busy around our house and Sunday February 23 rd was no exception as our friends Corey and Andrea had driven in from Nashville to see Libby but she was in a deep sleep by the time they had arrived.

Corey and Andrea Garcia were college friends of Nathan and Bethany while at Trevecca Nazarene University.  Nathan and Corey’s friendship went back even further to kindergarten in our church when Libby was their teacher. Libby was a self-appointed surrogate mother to both Corey and Andrea during their college years as she encouraged and counseled them both during their courtship, marriage and Andrea’s fledgling music career.

Weeks before their visit, I asked Andrea if she would be interested in writing a song about Libby to tell our story.  I had written an outline of sorts which described the “new love” during our dating years and how it changed into something much deeper as time went on. Then when faced with horrible news, how that new love turned into a “blue love” as both love and faith were tested.  I went on to say that real love is not always some warm fuzzy feeling portrayed in the movies, it is a choice to love that one makes everyday.  Now, it was obvious that I would never be mistaken for a songwriter so I left my ramblings with Andrea.

At 9:30 on that Sunday evening after Andrea and Corey had gone out for coffee with Nathan and Bethany, Libby woke up more responsive and more alert than she has been in weeks and asking, “Where is everybody?” I explained that it was late on a Sunday night and although a lot people had come by to visit, everyone was gone now.

After telling Libby the names of all of her visitors I explained that she had just missed Corey and Andrea so she asked me to call them. Within fifteen minutes Nathan, Bethany, Corey and Andrea arrived as Andrea pulled me aside before going into see Libby and said she had finished the song we had discussed and she asked if she could play it for her.  I told her the timing was perfect and that she was very alert.   The following video was recorded on that Sunday night using my cell phone then edited later to add photos:


I wrote this on the Caring Bridge entry that night after everyone had left, “I believe we have been given this time to say goodbye to someone that in my completely unbiased opinion, is the best wife, mother, teacher, counselor, prayer warrior, mentor and friend this world has ever seen.”

Oh So Many Cards

cardsAs Libby received cards, notes and letters from friends and family I began displaying them on a string pulled across our living room so she could see them every time she woke up.  As time went along I added row after row of strings, each one spanning the forty five foot distance across the living room of our house just to keep up with the notes. Not to mention the tables I had to add just to hold the flowers, books, gifts and stuffed animals. Libby was humbled by the well wishes and repeated almost every time I added cards to her collection, “I must really be loved.”

By the middle of February Dr. Schlabach was getting more and more concerned about Libby’s weight loss and her lack of appetite. To keep from disappointing her doctor and family Libby would wear a heavy jacket and hold her blanket when when she weighed in for a doctor visit but she still only managed to tip the scales at 92 lbs, well below her normal healthy weight of 125 lbs, meaning that she had lost one third of her body weight in 45 days.

Steroids had been prescribed to stimulate Libby’s appetite but nothing seemed to taste good to her, it was either the smell, the taste or sometimes just the mention of food that caused her to loose her appetite.  We discussed a feeding tube once, or more accurately I asked Dr. Schlabach to put Libby on a feeding tube, but he said the issue was not simply that Libby had lost her appetite, the metastasized cancer had robbed Libby’s body of the ability to process food and putting her on a feeding tube would have bad results.

Infection was a constant worry especially with frequent visitors but after weighing the risks and taking the necessary precautions we continued to welcome friends and family for short visits.  Libby did have some infections but she fought through the high fevers which caused a lot of confusion and disorientation.  Strong antibiotics would eventually get the infection under control but each episode robbed some of Libby’s personality and replaced it with confusion.

By this time Libby was sleeping about 20 hours a day unless we were going to the doctor or if she had visitors. Doctor’s visits and twice weekly trips to the infusions labs could last 8 hours or more form start to finish.  Too weak to walk, Libby had to be put in a wheelchair along with several blankets and her pink kidney shaped dish for use when the nausea started. Most days when we went to the lab for chemo, Libby had to be infused with fluids for several hours because she was so close to dehydration that she risked being hospitalized again.

Then it happened. During our doctor visit on February 21st Dr. Schlabach began a sentence with, “Libby, you have asked me several times in the past five years to be honest with you when the time comes to stop treatment and I am very sorry to have to say this… but that time has come.” I was watching Dr. Schlabach so intently that I had not realized that during this pivotal moment Libby had fallen asleep in her wheelchair.  Dr. Schlabach put his hand on Libby’s shoulder to wake her and ask, “Libby the chemo has not worked, do you want me keep trying or do want me to stop?” Libby just smiled and said sweetly, “Dr. Schlabach I trust you to make the right decision”, then she calmly went back to sleep. The doctor who had long ago become a dear friend, turned to me and said, “Barry, if this were my wife, I would would not want to try a fourth round of chemotherapy. I would take her home and enjoy our remaining time together”

I knew this day was going to come but instead of the devastating blow that I had imagined in my mind, the comment from our doctor that we should stop treatment and begin hospice care, confirmed what I already knew. I was relieved that the decision was made and we didn’t have to endure anymore treatments but my heart was breaking as I chauffeured Libby’s wheelchair from the phlebotomist lab to the admissions office to administration office and then finally into the infusion lab as Libby weakly hugged each nurse, PA, technician and secretary saying, “I love you and I will never forget everything you did for me, but I am going home and I will not be coming back.”

Now, one would think that the professionals in an oncology office would be callused and stoic because surely they were used to things like this, but Libby had the entire staff in tears as work came a halt until we pushed the elevator call button for the last time in the waiting room of the University Oncology Center.

“Barry, what do you like most about being married?”



During out thirty five years of marriage, Libby would often ask, “Barry what do you like most about being married to me?” I say it happened often because apparently I was never able answer that question to her satisfaction so she kept asking. Now, admittedly, I had been married long enough to know how I should have responded, such as this thoughtfully considered answer, “I love the way that God has taken two different people and joined us together with distinct personalities and traits, complimenting one another’s weaknesses.”

Although the preceding answer was true and would have been the prudent answer, my unrehearsed response was an equally true but not very smart, “I like the comfortable feeling I get knowing that no matter what happens during the day I can always count on coming home each night to you….” but then I ended my answer with, “..kind of like slipping on my old pair of comfortable tennis shoes and relaxing.  You know the ones that you keep trying to through away”. My answers had a way of beginning with mediocre promise and ending tragically.

I always thought of a better way to answer Libby’s questions after the fact and so in retrospect and the clarity that comes with separation here’s my answer: The thing that I loved most about being married to Libby was having someone with whom I could share my day. My answer is as simple as that.  Libby called me multiple times everyday to tell me about all manner of things that had happened to her and I did the same thing (just not as frequently). When something exciting happened, big or small, I wanted Libby to know it first and I wanted her to hear about it from me. An old Swedish proverb expresses the sentiment even better:  Shared joy is a double joy; shared sorrow is half a sorrow.

Although I didn’t fully realize it at the time, when Libby went into the hospital on New Year’s Day and then soon afterward had her first seizure, our relationship changed.  There were no more probing questions about what I liked most about being married or requests of, “Tell me again how much you love me”, in fact we never discussed anything in depth again.  Things that would have brought tears to Libby’s eyes before she was admitted to the hospital were stoically observed by eyes void of emotion. In retrospect it is easy to see that the cancer which would eventually take her life had already started to take her mind and my role as husband and confidant had changed overnight to that of caregiver with health care power of attorney.

By January the 8th we had a confirmed diagnosis and a direction, the spinal tap revealed that the breast cancer had metastasized and spread to the spinal fluid which was creating pressure in the brain causing the headaches, seizures and nausea.  The cancer was given a a new name, carcinomatosis meningitis and the treatment involved surgery to implant a Ommaya Reservoir in her skull to administer small amounts of targeted chemo straight to her brain.

After a grueling 12 days in the hospital Dr. Schlabach released Libby from the hospital and we went home on January 13, 2014 to a hospital bed set up in our living room. By the end of January Libby was improving modestly and we were going for chemo treatments two times a week but every trip resulted in nearly constant nausea and vomiting.

During our first trip back to our oncologist office following the hospital stay, Dr. Schlabach told us that we would treat the new cancer with two things in mind: First, we need to get some relieve from the pain, then he was going to attempt to treat the cancer and see if he could buy some time.” Libby said to Dr. Schlabach, “Do you think you can buy me six months worth of time?   You see, I am going to be a Grandmother in June and I am really hoping to hold my grand baby”  The matter-of-fact request was too much for our tenderhearted oncologist and so through tears, Dr. Schlabach replied,”I promise to do my best Libby, that will be our goal”.



The Beginning of a Dream



Libby’s love for children has never been disputed and that love caused her to constantly look for ways to engage all children, ensuring that none were ever overlooked, which is why she commented on more than one occasion that our church needed a playground.  After visiting area playgrounds during the summer of 2013 and doing additional research, Libby’s vision of a playground soon faded when we learned that the costs were far more than either of us expected with even the smallest playgrounds costing tens of thousands of dollars.

Fast forward six months and Libby was still struggling to recover her health while doctors tried to determine the exact cause of her horrible headaches and the loss of a third of her body weight. Because of Libby’s precarious health I had to limit the number of visitors which created a sense of helplessness among our friends and family and left many of them wondering how they could help.  Suggestions were made to hold bake sales, road blocks and even a 5 K run, all to raise money for Libby.

My initial impulse was to graciously decline any fund raising efforts for Libby since we had good insurance and money for the deductibles.  What I finally came to realize was that it was never about the money, the fundraising effort gave our friends and our community a purpose and and a feeling that they were helping contribute to Libby’s recovery. That’s when I remembered the discussions about the playground during the summer and so without asking for Libby’s permission, I made a few phone calls, launched a fund raiser webpage and formed a non profit called “Libby’s Living Legacy” to begin collecting money to build a playground to honor Libby’s love of children.

After the proverbial reins were released people began calling or texting with ideas on how they wanted to help and with little more than an, “Okay by me”, Libby’s Living Legacy fundraisers began springing up throughout the community of Chattanooga Valley. It was an amazing outpouring of love for someone who had touched so many people in our community.

An incident happened one day as some of the students from Libby’s children’s program lined up to each hand over a dollar of their allowance to help build a playground for Miss Libby. I hugged each little girl in turn thanking them for their gift but the youngest stood off from the others and nervously looked down at her feet shuffling back and forth.  I looked over and asked, “Can I get a hug?”  She shook her head “No”. So I asked, “Why not?” and she answered shyly, “Because I don’t have any dollar”.  (She got the biggest hug ever until she said, “You are squeezing me too hard, I can’t breathe”).

It was the gifts of pennies and dollars from children and the $9.67 earned by selling lemonade during a Saturday afternoon that I remember more than the corporate sponsors and large donors as this fundraiser started to pick up some serious momentum.

Within days of starting Libby’s Living Legacy the dream of creating a community playground began to develop a life of its own, meanwhile, still in the hospital, Libby was still fighting for hers.


A First Responder


Over time, Libby and I experienced both side of same equation, whether receiving tragic news while others tried to comfort us or attempting to comfort others when they received bad news. I recorded some thoughts about that process in the following story posted on Caring Bridge in January of 2014:

First Responders

We’ve all heard the stories of the first responders such as those in New York City who ran into the Twin Towers on 9/11 to help others.  In my mind, Libby has always been like those First Responders (absent the helmet, yellow coat and baggy britches) because anytime we received bad news about a family member, close friend or even an acquaintance, Libby responded by going to them immediately, she wanted to be there next to them to hold their hand, comfort them and pray for them with such a concentrated focused that she skipped meals, forgot appointments and focused only on the well-being of the one hurting.

I, on the other hand, have always reacted a little different when I heard tragic news about someone, I’ve always been more of a Non-Responder. Now, don’t get the wrong idea here, I too felt the compassion and empathy for the person who was hurting, but unlike Libby my first thought was not to go to their side immediately.  I did, however, try to think of ways in which I could offer practical help from a distance by doing things like mowing their yard, picking relatives from the airport or going after pizza for the group.

But before you judge me, I have my Non-Repsonder reasons:

  1. I wouldn’t know what to say to someone; words (especially my words) seem futile…
  2. What they really need is some time to be alone to process…
  3. There will be a lot of people at their house and I will just be in the way…
  4. I promise that l would go by later when all of the people are gone and they really needed me…
  5. And the coup de grâce;   I am married to Mother Teresa!  By just driving Libby to their house I do more than everyone else!

As I tried to justify my actions (or lack thereof) I was reminded of the WWJD bracelet fad several years ago reminding us, “What Would Jesus Do?”  As Christians, our goal should be to become more and more like Christ, Colossians 3:12 (NIV):  Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.  It’s that part about compassion and kindness that is particularly troublesome to me because I have already justified my actions (see excuses reasons 1-5  listed above).

Libby and I have learned a lot of things during her five-year battle with breast cancer. We have learned what is really important and how to respond to others who are hurting. We also learned how we want others to respond to us and I can tell you from firsthand experience that during some of our toughest times we have been blessed with family, a church, friends and a community who are truly First Responders, they love and pray for us daily and we were very thankful for that.

I am fully aware that each one of us has different gifts and because of that we have different methods of response but when you receive the worst news of your life, you will want friends and family who will respond like Libby.  You will want a First Responder.


P.S. But don’t worry about supper, I’ll bring the pizza!

Good News


DSC00262Following a rough few days in which Libby hardly even moved, she suddenly sat straight up in her hospital bed on Monday morning and shouted, “Dr. Schlabach!”.  I jumped at the sudden outburst fearing the worst, but Libby had heard the voice of her favorite oncologist making morning rounds and her face lit up for the first time in days (yes, I was a little jealous).

Dr. Schlabach had been vacationing with his family since Libby had been admitted to the hospital and although I had talked with him on the phone it was his first day back at work we were both happy to see him. Following a quick update, Dr. Schlabach ordered a spinal tap to help determine the cause of the nausea, headaches and seizures and he asked us to pray that the test result would be bacterial meningitis because that would be better than the alternative.

When the transport team arrived to take Libby for her procedure she stood up to get on the gurney and then immediately passed out. I caught Libby before she fell and as I lay her back onto her bed, she had yet another seizure, but there had been so many seizures in the past few days I took care of her myself, not waiting on the nurse to get there.

Although it was a struggle just to keep my voice calm, I immediately began talking to Libby and I watched the clock on the wall so I could report the duration of the seizure. I held Libby’s hand and caressed her face as I asked her a series of questions waiting on a response to each: “What’s your name? Do you know what day it is?” I took a glance at the clock and continued. ” Do you know where are you?” all with no response.

Our nurse had said that a familiar voice was important to bring a patient “back” and Libby had told me after several other seizures that she knew who was there and she was even able repeat back everything being said while she was unconscious but she was frozen inside a body that wouldn’t work.

During the worst part of the seizure, Libby’s eyes had rolled back and her eyelids were fluttering but the spasms had stopped and now her eyes were closed.  I asked, “Libby?…Hey Libby can you hear me?” Still no response and so I asked, ” Who is the best looking guy in the whole world?”   A crooked smile crept across her face as she said out of the corner of her mouth, ” Barry is…” I looked over at the transport team and the nurse who had just rushed into the room and said, “Clearly the girl has come to her senses and the good news is, there is definitely no brain damage!”

Fully awake now, Libby slowly shook her head back and forth, rolling her eyes, this time in disgust, and said,”He thinks he is soooo funny,”





On A Scale Of 1 To 10…



Spending Saturday with family was amazing!  I’m not sure if Libby just happened to have a fantastic, pain free day or if she rallied by saving all of her small “feel good moments” and stringing them together into one long “feel good day” because, although short-lived, it was a  miraculous, unforgettable blessing that I will never forget.

While the sound of our family’s footsteps still resonated through the hospital corridors, Libby left her chair where she had enjoyed animated conversation and fried chicken and returned quickly to her bed. Soon afterward Libby donned her customary damp rag to cover her eyes as another massive headache slammed her, overshadowing the pain free day. Within two hours she was hurting so badly that she limited out on the allowed pain medications and our roller coaster began its descent into the darkest thirty six hours period of Libby’s hospital stay.

Anyone who has spent time in the hospital will recognize the standard pain scale question asked by the staff: “On a scale of 1 to 10, with zero being no pain at all and a ten being the worst pain you have ever experienced how would you rate your pain for me now?” Even though Libby was in tremendous pain she considered the question carefully and said, “It’s an 8”. Knowing how much she was hurting I asked, “So, Libby, even though you just said it was the worst thing you have ever felt, it’s not a 10?”  “No,” said Libby, as she tried to explain, “I’ve never died and I would think that dying would be the worst pain possible;  dying must be a 10, so this has to be a 8.”

Later that same night as I paced the floor beside Libby’s bed she asked,  “Is that you Barry?” her eyes still covered with the damp rag.  “Yes,”  I said.  “Please pray for me,” Libby said, reaching for my hand, “It feels like my head is going to explode.” I pressed the call button and once again asked the nurse for more pain meds and then I prayed, but the nurse never came back in.

I like to think that I am a patient guy, but as Libby began squeezing my hand and the pain in her head continued to increase, my patience was exhausted. Then Libby pulled me closer and whispered,  “My head,”  pausing every other word to draw in a breath, “Hurts soooo bad… I know….why people……. want to kill…… themselves…This is a 10.”

That was it, my patience was gone. I found the frazzled night-shift nurse at the end of the hall near the nurses’ station and I said, “Look, I’m sorry, I know you have lots of patients and that you are just following orders but we are going to get those orders changed right now. My wife is in unbearable pain, so we have two options here; either you get in touch with the on-call doctor right now and get my wife some pain meds or I’m calling Dr. Schlabach’s cell phone and wake him up at 3 AM to get his approval, and trust me, I will get his approval!”

Libby received a pain injection through her I.V. within five minutes of my tirade and within five minutes more she was snoring softly.  I, on the other hand, catnapped only occasionally feeling a bit uneasy about sleeping in the darkened hospital room while the night nurse walked next to my makeshift bed with an arsenal of sharp needles.




The Last Great Day


There is a common term within the cancer community or more specifically, within the terminal cancer community, often called the last great day. The problem is (or maybe it is a blessing) that by definition neither the patient nor their caregiver know that they are experiencing the last great day while it is happening:

Because of Libby’s declining health by end of her first week in the hospital we called all of Libby’s sisters and asked them to come in Saturday for what we thought might be their last opportunity see their sister but by the time they arrived things had changed.

When Libby woke up on Saturday morning she was not the same person that she had been the day before, she was alert and free of any pain or nausea. I explained to Libby that her mom and all of her sisters would be there soon which buoyed her spirits even more and she said, “If everyone is coming I need to wash my hair and get a shower”. I cautioned her about doing too much too soon but she was already out of bed and towing her IV pole toward the bathroom.

Now, to put things into perspective, Libby had barely put three words together in a sentence since she was admitted to the hospital seven days earlier.  The pain was such that she spent most of the time with a damp rag covering her face and the total extent of our conversations consisted of whispered two-word sentences such as “Morphine please” or “Bathroom, please”.

But on that Saturday it was as if Libby had awakened in a new body, she was giving me instructions on which set of pajamas to get out and how she wanted her mom to fix her hair and makeup.  In addition Libby said she was tired of being in a hospital bed, she wanted to sit in a chair and she was ready to have the IV taken out of her arm because she didn’t need anymore pain or nausea drugs.

Libby’s headaches and five seizures made Friday one of worst days that I had ever experienced, but Saturday, she was having a great day. Then, in the middle of getting ready, Libby looked up at me with a quizzical look and I was sure that she was feeling the effects of all the day’s vertical activity, instead she said “How long has it been since I’ve eaten?  I’m starving!” I told her it had been almost a week since she had any food but I would check with the nurse immediately to see if they could bring up some soup or dry toast.  Libby turned up her nose at my offer saying, “Toast? I want some real food”.  I made a few other suggestions such as a Subway, although I really thought that even a plain turkey sandwich would be pushing our luck.

Her mom and sister had arrived by now and Libby was being tended to as if she were a movie star about to be called out on set. The pampering may have brought out Libby’s inner Diva because she turned up her nose at the Subway sandwich suggestion and said, “You know what I really want?” I was so happy to have my wife back I said, “You name it and I’ll get it.”  Libby said, “I want some Champy’s chicken.”

In theory I was willing to get Libby anything she wanted but I had cleaned up enough vomit in the past week to know this was a bad idea so I gently questioned the wisdom of introducing fried chicken to a stomach that had not seen anything other than ice chips for a week. Once again Libby frowned and said, “Barry, you asked me what I wanted…you said name it… and what I really want is some Champy’s chicken.”

I left the oncology floor of the hospital to get Libby some chicken but not before she shouted, “And don’t forget the spicy dipping sauce”.  “Yes, dear” I said out loud, then under my breath, “I am going to have a real mess to clean up…”

I bought enough chicken to feed our family, the nurses on the oncology floor, the doctors, assorted residents and most of the patients (or at least the ones who could keep it down). Our family sat around most of the afternoon telling jokes, reminiscing, and eating way too much fried chicken (with spicy dipping sauce).  Libby never did get sick as she sat in a chair the entire day while we feasted and used the hospital bed for our dinning room table.

As it turned out I was felling a little guilty for “calling the family in” because when the doctor made his rounds that afternoon he said, “Wow! You look great today! It looks like that experimental drug finally got out of your system.  If things continue like this, you are definitely going home in the morning, little girl”, Then the doctor looked over at the bed he asked, ” Is that Champy’s chicken?” Libby handed him a cup of dipping sauce as he joined our party and we all celebrated this new answer to prayer during our incredibly awesome, really good, very great day!




An ambulance ride on New Years Day landed Libby in Erlanger Hospital, but her stay lasted much longer than any of us expected. It took some time but the doctors were able to control the nausea, however they could not stop the crushing headaches which caused Libby to spend a lot of time with a damp rag draped over her eyes in an attempt to block out all light and stimuli.

The oscillation between good news and bad news increased in frequency and amplitude beginning that first day of 2014.  One of Libby’s doctors told us that the new experimental drug that she had recently started was likely the reason for her headache and nausea, “Therefore,” he said with medical confidence, “As soon as the side effects from the drug wear off, this little girl will be going home… probably tomorrow”; fantastic news that I relayed to friends and family as soon as the doctor left the room.

Before that good news got three “likes” on Facebook things changed. Helen, Jerod and I were all in the hospital room as Libby rested beneath her rag in an attempt to fight off yet another headache.  A nurse was in the room taking vitals when Libby began jerking violently, her eyes fluttered and rolled back in her head and then her body went limp. The nurse fumbled nervously for the call button and reported a code blue.

I felt useless as the room quickly filled with medical staff coming from every direction, a doctor began barking orders to the Rapid Response Team while we shrunk into a corner unable to see Libby. I remember thinking to myself, “Surely it’s not going to end like this, I haven’t even said goodbye!”

Following the initial flurry of activity, the team seemed to be doing very little to actually help Libby until one of the nurses asked, “Mrs. Gilley can you hear me? Mrs. Gilley do you know where you are?” Silence.  Seconds later she asked again, “Mrs. Gilley can you hear me?  Do you know where you are?” Then a very small, sweet voice from within the circle of white coats and blue scrubs said,  ” I know that I’m in my hospital room…but I don’t think I have met any of you.”  After some nervous laughter from the medical team Libby, a little stronger now, continued, “Why are all of you in my room?  Did I do something wrong?”

Over the next few days the seizures increased until Libby was having as many as five a day and the Rapid Response Team responded so many times that they were soon on a first name basis with us all.  Then as the seizures became almost routine we stopped calling the team or even the nurse and I eventually learned to handled the seizures myself.

At the time I could not have imagined anything worse than watching Libby have a seizure and pass out but then toward the end of the week Libby seized while her mom and sister were visiting and although I had done my best to prepare them both, it was difficult to look in her mother’s eyes while trying to coax her daughter back to consciousness.

Later that night Libby’s sister, her mom and I made the decision to call in all of the family in on the next day to see Libby, for what we all believed would be the last time.