After Libby’s surgery and the subsequent news from her surgeon that the lymph nodes tested positive for cancer, our oncologist wanted to run some scans to see if the cancer had spread.  Eventually we received the news that even though the cancer had migrated beyond the surgical area it was still relatively small and therefore unable to be detected by the scans, in addition, that microscopic size increased the odds of the cancer being destroyed or at least controlled by the chemotherapy.

Libby and I were finally to breathe a sign of relief giving us both the chance to look up and take stock of our situation, but in spite of everything that she had been through, Libby’s character and countenance never changed whether the news we received was good or bad she would say, “Well this is my new journey now and we will just have to trust God.  So what’s next?”

Libby had been wanting to go see her mom and dad for a while and so with this short medical reprieve, she and her sister Kathy went to La Grange, GA to see their parents for the weekend.  Their dad had been diagnosed with cancer and ironically there was a point in which Libby, her mom and her dad were all being treated for cancer simultaneously.

The following is one of a handful of blogs that Libby wrote and posted on her Caring Bridge website preferring instead to have me write most of the entries.

By LIbby Gilley — Oct 19, 2008 8:28pm

Following our initial consultation with Dr. Burns, Libby and I were almost to the elevator when he asked us to come back into his office for a biopsy and then it was nearly 7 o’clock when we finally went through the waiting area for the second time on our way home (deciding not to go to Longhorn, as we had been planning).

The biopsy report indicated the presence of a 2.5 to 5 cm cancerous lump.  Within the next few weeks, meetings were scheduled with our surgeon and our oncologist to discuss a mastectomy, reconstruction, chemotherapy, radiation and a port to administer the drugs.  Libby and I sat in stunned silence most of the time trying to understand this new reality and with things happening so quickly there was little time to process our emotions as we were presented with a new set of facts, a course of treatment and all of the potential side effects.

My memory is fuzzy leading up to the morning of the mastectomy on Thursday, October 9, 2008, but I remember distinctly when Dr. Burns came walking into the waiting room following the surgery still wearing his green surgical scrubs.  The waiting room had more people than chairs and it was buzzing with multiple conversations as Libby’s surgeon stepped into the room casually untying the upper strings of his surgical mask and looking from face to face until I caught his eye from across the room; he held out his hand for me to shake and someone offered him a chair as he leaned in to give me the news.

As Dr. Burns began to tell me about Libby’s surgery in a whisper, trying, I am sure, to adhere to HIPPA laws, everyone else in the waiting room stopped their conversations, moved closer and leaned in, straining to hear our conversation.  I said, “Dr. Burns, you might as well speak up and tell everyone in the waiting room what you are telling me because when you leave I will just have to repeat everything you have said.”  He looked around the packed waiting room and asked, “You mean all of these people are waiting on news about your wife?”  “No,” I said,” this only some of them, but this is all that we could get in this room, the others are scattered around in other waiting rooms.”

“Wow, she must be some special lady. ” Dr. Burns said.  I thought to myself, “You have no idea”.  “I guess that will be OK,” Dr. Burns continued, “as long as you don’t mind everyone knowing,”  I told him,”  Actually, this is just the tip of the iceberg because everything you say will soon be sent via text, email, Facebook, Caring Bridge and about a dozen church prayer chains within the hour.”

Dr. Burns then began telling the gathered crowd about how well Libby had done during the surgery and how the only complication was due to her complete absence of fat, making some of his work more tedious. Then, although I didn’t fully realize it at the time, he delivered the coup de grâce as he put his hand on my shoulder, “Barry”, he said, “I dissected the sentinel node to see if I could find an early indication as to whether or not the cancer has spread; I’m sorry to say that it does show signs of cancer.” He then went on the explain to me that the lymph nodes “cleaned” the area and if any cancer had left the tumor en route to other parts of the body, the lymph nodes would tell the tale.  “The cancer was not fully contained within the lump or the tissue that we removed. It has spread.” he said redundantly, “I’m very sorry”.

My brain was still on a high from the surgeon’s comment that Libby had come through the surgery well and I could take her home tomorrow, I was having trouble understanding why he kept saying he was sorry.  Several days later we would get the results back from the pathologist and discover that a total of thirteen lymph nodes were taken for testing and all thirteen were positive for cancer.  The tumor which was removed that day measured 5.5 cm and its large size combined with the positive lymph nodes now classified Libby as a stage 3B cancer patient.

Libby’s official diagnosis was primary stage 3B invasive lobular, estrogen positive, breast cancer and later as it moved to other parts of her body it would actually “morph” into other types of cancer with completely different characteristics in a devious attempt to avoid being destroyed by the chemo treatments.

After reviewing the pathology report from the surgery, a concerned Dr. Schlabach elected to do a PET CT and brain MRI to see if the cancer could be found anywhere else.  On October 17, Dr. Schlabach called to say that both scans were negative and for the first time Libby and I felt as if we had a little breathing room and a direction for the future.

After receiving the first good news in weeks, Libby wanted me to immediately share the news on my Caring Bridge journal and I actually got a laugh out of her when I posted this as the last line of my update:

Dear Elizabeth,

As your family and friends celebrate this, your very first birthday, with cake, ice cream and gifts, I am fairly confident that you will possess no memory at all of the event, but the rest of us will celebrate for you and enjoy our time together in what may turn out to the most well attended birthday party you will ever have.

Like that first birthday party, it will be several years before you are able to appreciate this birthday message. As my birthday gift to you I wanted to give you something different, something that, when you read this in the future, will help connect you to a portion of your family’s history, a legacy of sorts. In addition, before any more time has passed, I want to go on the record as being the first person to introduce you to your grandmother Adah Elizabeth (Libby) Gilley.

You see Elizabeth, your grandmother had a very bad disease, called cancer.  The best doctors and the best medicines could not stop it’s progress, but from the moment we found out from your mom and dad that you were on the way, until the cancer confused her brain, your grandmother prayed everyday for your health, your safety, your future mate and, most importantly, she prayed for your salvation.

After your grandmother Libby had gone through 5 years of surgeries, biopsies, chemotherapy, radiation and tests, her doctor sat us down in February of 2014 and explained that the cancer had returned with a vengeance, they told us that every traditional type of chemotherapy in which they tried had failed and now they were out of options. But even after hearing the worst news of her life, you were on your grandmother’s mind.  She looked at her doctor and said, “OK, Dr. Schlabach,  I know that I don’t have a lot of time but do have one request, you see, I’m going to be a grandmother in June and more than anything else, I want to hold that little girl, so…. can you get me to June?”

As you can tell, your grandmother was really looking forward to meeting you and she did everything humanly possible to hang around long enough so she could hold you, love on you and “put little kisses all over head”.  You see, your grandmother had this thing, she loved to kiss the heads of new-born babies, always leaving a telltale path of red lipstick on every little bald-headed baby she could get her hands on, and believe me, your spiky jet black hair would have been a real treat for her to kiss and cuddle.

By the time you are able to read and comprehend this birthday greeting, friends and family will have spent some time telling you stories about your grandmother and after hearing some of those stories you will surely become convinced that we must all suffer from selective memory, remembering (and even exaggerating) your grandmother’s good attributes, while conveniently forgetting the bad; but, at least in this case, it would be difficult to exaggerate your grandmother’s kind and humble spirit. That is just one of the many reasons that I have decided to write down as much as I can about your grandmother while the details can be verified by others to give you an accurate representation of this very special lady.

Your grandmother Libby gave a lot of thought to the perfect name that she hoped you and all of her grandchildren would call her, but she never settled on one, partly because she knew that most young children in the process of learning to speak, often make up their own names anyway.  With that background I think I may have solved the naming problem by condensing “Grandmother Libby”  into a simple, child-like, two-syllable word “Gibby”.

Gibby was a very practical person, she realized that the cancer was eventually going to destroy her earthly body and she made the decision to spend her remaining time at home with friends and family, so on February 21,2014, Gibby said some tearful goodbyes to her medical team and (with their blessing) returned to our home with Hospice Care and although she never gave up fighting, she knew her short term and long term future.

So Elizabeth (and here is the sad part) despite the prayers of family, friends and many, many churches, you two just missed seeing each other on this earth, because on March 25, one month after telling her doctors goodbye, Gibby said goodbye to the rest of us and received her heavenly rewards, of which,I am confident were many.

By the time you are able to read and comprehend this letter, others may have already talked with you about the “legacy” that your Gibby left in this world such as the many children she taught and the countless lives she influenced.  In addition they may tell you that the organization that your mom and dad helped launch, Libby’s Living Legacy, became a true phenomenon in our little community as an outpouring of love from friends collectively raised over $80,000 to build a playground to honor your Gibby.  But Elizabeth, always remember that neither the beloved teacher nor the playground, are your grandmother’s real legacy; because if it were possible to sit across from Gibby today she would tell you that the legacy that she most wanted was for her boys, their wives and all of her grandchildren to seek and maintain a personal relationship with Christ, that will be Libby’s Living Legacy and all other accomplishments pale in comparison.

When you are older I hope you, your siblings and your cousins take the time to read the stories about your grandmother and attempt to understand just how much Gibby loved and prayed for all of you. In an effort to help you know as much as possible about your Gibby, I have tried to accurately portray her personality, her spirit and the love that she demonstrated for others in stories written within libbyslivinglegacy.com.

Happy Birthday, Elizabeth

I Love You,

Your granddad.

My oldest son Jerod, has been working with me since he was in college and recently he went with me on a business trip to the Tennessee Banker’s Association’s annual meeting. Many of our clients attend these banker’s meetings and I like to take the opportunity to try and develop business relationships. Libby and I began taking our boys with us on these yearly trips to different resorts as soon as they were old enough to travel, coincidentally these meetings have always happened on our anniversary, June 9th.

During this most recent trip every place and every event reminded me of Libby,from the restaurants where we ate to the carriage rides and flower gardens. I discussed with Jerod that I might even write in my blog about our trip to explain what it was like to spend your anniversary in one of the places where we spent it before. But instead of me writing about what it was like without my wife, Jerod asked if he could write this entry about what it was like without his mom:

 

Jerod’s Perspective:   I was eleven years old when I first visited the Greenbrier in White Sulfur Springs, West Virginia.   Mom and Dad were attending a conference related to Dad’s business and this time, my brother and I got to tag along for the ride; and ride we did…up and down the eye-opening roller coaster of wealthy society.  For a few days, we lived like kings and tried our best to not seem like aliens in this foreign realm of the finer things.

Our small town family was just three tips into our stay (the greeter, the doorman, and the bellhop) when my brother and I discovered that our hotel room had, in fact, two toilets; one of which featured some never before seen functions that we found quite amusing.   The concept of a bidet was quickly explained to us and it became the first of many lessons in how the “other half” lived. Other personal firsts included morning coffee delivered to the room, afternoon tea in the grand hall, filet mignon via room service, boutique bowling, and most importantly, unlimited combs, lotions, and mouthwash in the men’s pool locker room. I was far less enthusiastic with the resort-wide mantra of, “A gentleman wears his jacket after 7”, but somehow I made due…mostly because of the free combs.

The fact remained, however, that green combs and fancy potties don’t pay for themselves so we all had to do our part, but because of our age, the roles my brother (almost 10 at the time) and myself were to play were quite simple…be polite and look cute.  The role of my mother was far more important, yet, because mom was mom, her role was even simpler…be Libby.  Each evening, the four of us would make our way to whatever reception or dinner the conference folks had planned and then work our way around the crowd to catch up with old friends and clients, and hopefully meet some new ones. 

Typically, Dad would introduce Nathan and I to a new family, then Mom would further the conversation by explaining how we are all connected…usually through six or seven levels of relativity that included cousins twice removed, in-laws, babysitters and a plethora of other obscure relationships that only she could uncover or remember.  It was clear from the nodding heads of folks being introduced that Mom had learned these things from some previous conversation that apparently occurred telepathically during few seconds of the initial encounter.  Mind-reading aside, it was an experience our family would never forget because by the time our trip came to an end we had made connections that would blossom into life-long friendships and our family had grown closer to each other in the process.

Dad and I just returned from our second trip to the Greenbrier, attending the same conference that our family did 18 years ago.  Nathan and his wife had their hands full with Nathan’s medical school exams and taking care of my beautiful baby niece so they couldn’t attend.  Mom passed away just over a year ago (to a resort that puts the Greenbrier to shame) so Dad and I made the trek up to West Virginia by ourselves.

Pulling through the front gate of the resort brought back a wave of memories and walking through the mostly unchanged halls brought back even more.  Much like our previous visit, our days were a mix of business and pleasure featuring conferences in the mornings, receptions in the evenings, and a healthy sprinkling of golf, pool-time, and red meat in between.

It was, yet again, a great experience complete with old friends and some friendly new faces.  The scenery was breathtaking, the food was fantastic and the conversation was inspired, but it just wasn’t quite the same.  Perhaps it was because now, 18 years later, I had to focus far more on the business end of the trip, or maybe, reality paled in comparison to the nostalgia colored lenses of my memories.  It could just be that I am no longer terribly impressed by free combs and mouthwash or,more likely, it just wasn’t quite the same because Mom and Nate couldn’t make the trip. 

Dad and I had a wonderful time and I know we both cherished the one on one time, but it was hard not to think that something was missing.  We found it next to impossible to look around without being reminded of the last time our family visited, and Mom was still with us.  But it was also impossible not to see the impact she had made on others.  We were approached by dozens of people, many of whom mom had only known in passing, expressing condolences for our loss, followed by gratitude for having known her.  And while it saddens me to know this is the first of many family trips we will take without Mom, it gives me joy to see the legacy she left behind.

Jerod Gilley