Déjà Vu All Over Again

IMG_5280Things happened quickly after Thanksgiving 2012: The metastasized breast cancer was biopsied, analyzed and charted, Libby had another port implanted and the drug protocol was established.  On December 17, 2012 we began Chemo Round Two and I posted  the following message on Libby’s Caring Bridge website:

I have been a “fixer” all of my life and I have the accumulated tools and workshop to prove it.  When our boys were little they naïvely thought their dad could fix anything that they broke and believe me, they broke a lot.  I inherited that “fixer” mentality from my dad who saved everything and was capable, in my mind at least, of fixing anything (are you sensing a pattern here?).  As a boy when trying to repair a broken toy I always wanted to give up and throw it away, but my dad’s response was always the same; “Somebody, somewhere came up an idea, designed it, built all of the pieces and assembled it.  The only thing you have to do is repair one little piece to make it work again.” 

As a “fixer”  it has always been hard to accept help from others and today was no different as I sat idly by while nurses prepared and administered Libby’s afternoon “cocktail” of Taxatere, Herceptin, Perjeta, steroids and anti-nausea drugs, hoping and praying that they would be able to fix the only girl that I have ever loved.

Caring Bridge entry by Barry 12/17/12

We had planned to celebrate my birthday after Libby’s chemo treatment but she was soon confronted with nausea, dizziness, metallic taste and loss of appetite, similar to the symptoms that she had experienced during her first round of chemo four years earlier, so we decided to postpone the birthday celebration.

A few nights later as we were getting ready for bed, Libby was scratching her head with both hands and said, “I just can’t figure out why my head keeps itching”.  Then, as if a light went on, Libby raised her eyebrows and smiled awkwardly as we both remembered, at the same time, that the itching meant her hair was getting ready to fall out just like it did four years earlier.

Without much discussion nor emotion Libby said, “OK let’s get this over with.” We walked into the bathroom where I took out our trusty Wahl clippers, attached a black plastic 1/4″ guard and I gave Libby a buzz haircut, but instead of buzzing it all, I left a 2 inch wide strip of relatively long hair on the top of her head forming the perfect Mohawk.

Readers will have to take my word for this because as I stepped into the other room to get my camera and record Libby’s new hair style, she found a mirror and…well… lets just say that she was not excited about her new look.  I calmly and logically explained that there was no reason to “go on the warpath” because I could easily correct it.  (It was at this point that insights gained after 33 years of marriage kicked in and I decided not to take that picture). Libby insisted that I cut the remaining hair immediately becasue she said, “What if the rapture comes and I am ‘caught up together with them in the clouds’ looking like this?”.

 

Family Traditions

The Thanksgiving holidays have always been extra special for the Willis clan because the entire family gathers to celebrate two holidays at once. During the first half of the day Thanksgiving is celebrated with a huge meal, then during the second half of the day Christmas is celebrated with presents, a tradition that we have kept since the beginning, and by “beginning” I mean from the time I married into the Willis family, not the very beginning when there were pilgrims.

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Libby and I discussed holiday traditions with our respective families during the first year of marriage and decided that we would spend Thanksgivings with the Willis’s and our Christmases with the Gilleys.  Then, as the years went by and Libby’s sisters started their own families that tradition continued.

By Wednesday November 21, 2012, the annual Willis family Thanksgiving/Christmas celebration had been in the planning stages for months, the menu had been decided and the Christmas gifts were wrapped, in fact, most of our gifts were already in the back seat of my truck as I was driving home following a meeting in Nashville.

During the drive Dr. Schlabach unexpectedly called to offer us the use of his condo in Montana for a family ski trip, but there was a long pause before he asked, “Is Libby with you right now?”  “No,” I responded, unsure of where this conversation was going.  “OK good……… (long pause)………Barry we need to talk…” .

Instantly I felt a tightness in my chest just as if someone were tightening several of those ratcheting cargo straps around my chest.  Dr. Schlabach began explaining to me that Libby’s most recent blood test revealed certain enzymes which were given off by tumors and that Libby’s “tumor markers” numbers had gone from normal to “significantly high” and he wanted to schedule a PET scan immediately. My chest tightened a little as if the ratchets on those imaginary straps were all cinched up one click.

Now, there had been some scares in the past but something in Dr. Schlabach’s voice told me that this was different.  My own voice cracked a little when I said, “Dr. Schlabach this is not the kind of news I wanted to hear” his reply was full of emotion, “It is not the kind of news that I ever wanted to have to tell you…. Barry, I am so sorry.”  Click, the imaginary ratchets tightened again.

I thought Dr. Schlabach was trying to change the subject when he asked “What plans do you and Libby have for Thanksgiving?”.  I explained to him about our standing tradition with Libby’s family and he said, “Do me a favor Barry, “Let Libby enjoy her family over the holidays, because……..(long pause)……I have to be honest with you here, the next part of this journey is going to be rough.”  It was getting harder and harder to breathe now as the ratchets clicked once more.

What followed was the worst 24 hour period in our marriage (for me at least, up to that point) as I tried to pretend everything was normal.  Libby, on the other hand, was so preoccupied with the upcoming holiday and the opportunity to get together with her family that she only asked me one time if something was bothering me and I felt another click when I lied to her.

Following a restless night, there was the usual flurry of activity on Thanksgiving morning as we loaded up the truck and drove to Libby’s sister house in La Grange, GA.  During the day I forced myself to make small talk with all of the in-laws, nieces and nephews as the pressure from the proverbial straps built every time someone asked, “Hey, Barry how are you?”  “Doing great,” I lied.  Click. “How are you?”

When our family finished our meal and gathered in the living room to open presents, the Detroit Lions were loosing yet another Thanksgiving day game on the big screen TV when Libby said, “Wait, before we start. I need to run out to the car, I left one of my gifts.” Seeing my opportunity to catch Libby alone I called after her, “I’ll help you”.

I had made the decision during lunch as I watched Libby interact with her family, that I should tell her about Dr. Schlabach’s call and let her decide when and how to tell her family the bad news.  In what may have been a first for our marriage, I caught up with Libby in the driveway and said, “Libby, we need to talk….”

Libby turned quickly with an awkward half-grin on her face, unsure of what she had just heard, but when she saw the emotion in my face and the tears in my eyes, she knew instantly that she was not going to enjoy this “talk”.

Libby had some obvious questions like, “Why did he call you instead of me?” and “Are you sure about the test?”.  But, as usual, Libby took the news in stride and she wanted to be the one tell her family, but, she said, “Lets wait until after the gifts are opened so we don’t ruin the entire day for everyone”.

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After opening gifts and trying to act like everything was normal, Libby and I gathered Jerod, Nathan and Bethany into the kitchen and told them the news privately before gathering all of the rest of the family.  It is hard not to miss the irony when I say that I wanted to be as honest with everyone as possible since I had been lying to everyone, Libby included, for twenty four hours.

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The proverbial bands around my chest had tightened so much that my lungs struggled for enough air just to say, “Before you all go back home today ” breath, “Libby wants to tell you all something…”   We each turned to face Libby but the tears had already started to flow so she nodded her head toward me, the signal for me to take over.  Now, as if spectators at a tennis match, the family all turned their heads in unison back to me.

I eventually got most of the message out to the family before the tears choked off the rest in what had to be the worst ending ever to our thirty three year Thanksgiving/Christmas celebration.

Biking to Florida

“Wow Barry, what happened to you?  You look different!”  That was Libby’s reaction in the fall of 1972 as we both began our freshman year of high school. Apparently, I had changed since leaving Chattanooga Valley Junior High three months earlier thanks, in part, to a short growth spurt and a long bike ride.

When the 3:15 bell rang on our last day of class in Junior High my mom drove me to Nashville, Tennessee where I met up with a group of guys to begin a seventeen day, 1000 mile bicycle ride to Miami Beach, Florida.  For a year I had been planning, exercising, and raising money for a trip that I was scheduled to take with these guys who had come from various churches throughout the United States. The forty bicyclist represented twenty-five different states and we were scheduled to be at the Church of the Nazarene General Assembly which was being held in just over two weeks at the Miami Beach Convention Center.

Collectively our bicycling group was called “The Spokesmen” and along the way we sang, spoke and stayed in churches as we biked through Tennessee, Georgia and down the coastline of Florida to Miami. In addition to bicycles, our caravan had a portable kitchen, motorcycle escorts, vans and mechanics traveling with us as we pedaled our “state of the art” Schwinn Continental ten speed bicycles between 65 and 110 miles each day.

During that summer in Florida between Junior High and High School I grew 4 inches and added 25 pounds to my skinny  5″-9″ and 120 pound frame which may explain why Libby claimed that she barely recognized me when she asked the question, ” Wow what happened to you?”

After the bike ride I stayed several more weeks in Florida with family friends where we spent most days water skiing or surfing. Besides the physical changes that came with an adolescent growth spurt, 1000 miles of biking, lots of time in the water and copious amounts of food; looking back now, I realize how much confidence, self-discipline and perseverance that I gained as well.

Six years later when Libby and I were engaged to be married, she saved up her money from her Red Food Store cashier job and purchased an expensive Italian-made Bianchi bicycle as birthday gift for me, encouraging me to continue riding.  I would often tease her and say that just because my physique was radically changed by a bike ride when I was 14, doesn’t mean it will happen again. Libby’s response was always the same, “Barry, that’s not the reason I bought the bike for you.  I bought the bike because I love you;   Of course if you ride enough…???…who knows???”

I did make lots of bicycling trips in the next 30 years, including one memorable ride on a tandem bicycle with my niece Samantha Gilley where we went from Chattanooga to Memphis, TN to raise money for St. Jude Children’s Research Hospital.

After Libby’s breast cancer diagnosis, chemo and radiation treatments, we were all looking for a little distraction from all of the doctor visits, so we decided to put together a bicycling trip. I made the following two posts to the Caring Bridge website during that time; one during our trip and one shortly afterward we arrived back home:

Aug 19, 2009 7:24pm

Greetings from Troy, Alabama!  Libby is acting as our support vehicle this week while Nathan and I ride our bicycles from our house to Destin, Florida.  We have 290 miles behind us and about 130 miles remaining, dodging storms and high winds from tropical depressions while Libby is driving her car, reading her books and supplying us with water, ice, Gatorade and encouragement.  Jerod is working this week but will meet us in Destin tomorrow night and we will relax a few days on the beach before riding back home (everybody in cars this time).

The MRI that was originally scheduled a few weeks ago, was canceled as the doctor wanted to give it a few more days without the drug.  Libby has now been almost a month without the estrogen suppressant drug and the headaches and some dizziness are still persistent. Libby called her oncologist yesterday and he has re-scheduled the MRI for Tuesday August 25th at 10:15 AM.

We are praying that we can find the cause of the headaches and find a way to treat them.  Thanks for taking the time to keep up with Libby and for keeping her in your prayers.

 By Aug 26, 2009 7:19am

Dr. Schlabaugh’s office called late yesterday to say that the head MRI showed no signs of cancer!  GREAT NEWS!

As Libby and I drove back home following our Florida bike trip we listened to some CD’s on marriage and communication.  One of the lessons stated that to be a good communicator one should tell the audience what you want them to know and then briefly summarize it to make sure you are being understood.  So I am going to apply some of the knowledge I have learned about communication by summarizing the first part of this entry to make sure all of you understand:

“Libby had a brain scan MRI on Tuesday at Erlanger Hospital and they couldn’t find anything at all”.

I think those CD’s are really working!

Barry

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“OK, Now I Remember—— What I Forgot!

As Libby’s hair began to grow back following the chemotherapy, her once dark hair came in solid white and began to curl into hundreds of fine little ringlets perfectly sized to wrap around a pinky finger.  Soon after the goose down hair started growing those same damaged hair follicles began producing thicker and darker hair, now capped with those fine, curly, white tips.  Libby was not accustomed to change in any form, especially when it came to her hair, so she was slow to embrace the new look and unwilling to be seen in public without one of her wigs.

Nathan, Jerod and I were commenting on the unique and attractive look of Libby’s hair one Saturday night during one of our planned family nights.  Embarrassed by the compliments and the attention she was getting, Libby got up from the couch to go start dinner but after standing, she awkwardly stepped sideways, and nearly passed out as three sets of hands gently guided her back to her seat.  A combination of residual chemo drugs and radiation treatments often affected Libby’s balance and rising quickly from a seated position increased those odds.

Even after a diagnosis of cancer, which made us all reevaluate our priorities, it is embarrassing how quickly each one of us became overly busy with life.  In fact we all became so preoccupied with our own lives that we had to schedule family nights at our house.  This particular night was planned to be a simple meal around the dinner table, but after the light-headed spell subsided, we convinced Libby that riding in the truck to and from St. Elmo and sharing a pizza would probably net us more family time than cooking at home.

Noticing the time and worried that the restaurant would soon close, we hurriedly gathered up to leave.  Libby never liked to be rushed when going anywhere, so it she became anxious as I hustled her toward the truck glancing back over her shoulder.  “What are looking for? I asked,  “I don’t really know, ” Libby answered, “it just feels like I’m leaving something”, then after making one last unsuccessful sweep of the room, we left for the restaurant.

Mr. T’s Pizza is our favorite pizza place located just a few miles from our house in a condensed little area of St. Elmo, TN with several intersecting roads, pedestrians, tourists and restaurants all within walking distance of one another.  Libby flipped down the sun visor on her side of the truck as we approached the restaurant so she could check her makeup in the small mirror, a move that always obscured my view out the passenger side of the truck.  Then, just seconds into her primping session, we all heard the scream.

I instantly hit the brakes, anticipating air bag deployment and bracing for impact; I was confident we were about to crash, then, after several seconds, during which time no one died, I asked, much louder than was necessary, “WHAT WAS THAT ALL ABOUT?”  Libby calmly turned toward me with an awkward, sheepish grin as she flipped her wrist to close the sun visor/mirror combination.  Cocking her head to one side and shrugging her shoulders she said in a soft voice, “Now I remember what forgot!”

Still in shock over the scream,  angry and confused, I whined, “What did you forget Libby?”  She turned her shoulders a full 90 degrees to look straight at me and then Libby struck a pose while pointing to her head in a gesture which was supposed to make it obvious why she was upset.  Libby’s eyebrows (okay, what used to be her eyebrows) were raised and her head cocked to one side as if I should be able to guess what was going on without any hints.  Dumbfounded, we all three stared at Libby and at one another without venturing a guess as to why she was so upset.  Eventually giving in with disgust Libby said, “My hair guys! My hair, I can’t believe none of you noticed!  I left my hair at home, I can’t go anywhere looking like this.”

Libby and Barry at Pizza Hut without her wig

I probably should not have laughed as hard as I did but we had seen her so much without the wig that it never crossed our minds that she had left it.  It was so traumatic to Libby that later she equated the experience to the nightmares common in young school-age children who dream of going to school but forget to put on clothes.

The boys and I pulled out all of the stops to convince Libby to go into the restaurant including but not limited to: “Mom you look great. There are only a few cars in the parking lot.  No one will know us there,”  and finally, “No one else has a hair do like yours”.  Hunger pains and a compromise finally convinced her that we had to eat somewhere.  The compromise was that we would go to Pizza Hut instead of Mr. T’s because in Libby’s words, “I don’t know anyone who goes to Pizza Hut anymore, but if we go to Mr. T’s we are sure to see someone we know.”

That day was a turning point in Libby’s post cancer treatment life and a huge boost to her self-confidence because the next morning Libby went to church for the first time ever without a wig and she made short hair look awesome.

Libby's first trip out without her wig

Life’s Milestones And Wigs

The life that Libby and I shared together had some pretty major milestones during our courtship and marriage including our first date when Helen Hawkins (aka Hamburger Helper) hit a cow on the road in front of us, then there was our wedding on June 9, 1979, the purchase of our first house which cost $14,000 but took $10,000 to repair, the birth of each one of our two boys and then there was Cancer.

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Cancer so changed our lives that we would sometimes categorized past events using the abbreviations BC (Before Cancer) or AC (After Cancer). Like it or not, Libby’s cancer diagnosis was a watershed moment in our lives and it was as much a part of us as our wedding and our children.  For fifty years (BC) Libby had been known as a beloved daughter, a sweet sister and a role model for others, then as an adult she was known as a gorgeous bride, an excellent teacher and a loyal friend.  But then (AC) Libby’s identity changed to cancer patient who constantly amazed others by making the best of a bad situation.

Libby’s particular type of breast cancer needed estrogen to survive and grow, so to slow the cancer’s progress her oncologist immediately prescribed an estrogen suppressant which had it’s own unique set of problems, most notable were the intense hot flashes which happened several times every hour.  It didn’t take a keen awareness to determine the moment when one of Libby’s hot flashes started because, if we were alone at the house, her the wig would suddenly fly across the room followed by her jacket which she couldn’t seem to get off fast enough. Throwing her wig across the room became much less common after one particularly high arching toss resulted in an unfortunate encounter with the living room ceiling fan.

Some of the nicer wigs that Libby bought were Raquel Welch brand wigs, one of which had become her favorite until the day that she was cooking supper at my dad’s house.  While trying to determine if the cornbread was brown on the bottom Libby opened the lower oven door and leaned over to inspect the cornbread as 450 degrees air wafted up out of the oven and quickly “baked” her synthetic wig melting the individual hairs together as they shrank and retreated away from her face.   Libby was unfazed by the heat but her favorite red wig cooled quickly into a cohesive permanent wave on top of her head.

The thought came to me so quickly that I really didn’t have time to apply a filter, and besides I thought a humorous comment by me could relieve some of the awkward tension in the kitchen, but I have to admit that it sounded a lot funnier in head than it did when I said, “Your Raquel Welch wig looks a lot like a Donald Trump hairpiece.”

The synthetic wigs were very durable (well, except for the one she baked) easy to care for and easy to style, but one particular evening I discovered a completely unexpected benefit of having a large collection of wigs.

Libby and I were getting ready to go out and meet another couple for dinner and as Libby stood in front of the full length mirror she asked, “How does this outfit look?”  Now, in times past I had fallen into that sticky trap of answering that question incorrectly so I said, “That looks great!”  I wasn’t lying to her because I thought she looked good in nearly everything she wore.  However, I must have lacked sufficient enthusiasm in my comment because she responded, “You’re right, the colors are all wrong”.

Wait, what?

This is where years of husbandly experience came in handy and although I knew that we would be late, I knew too that it would be unwise to ask Libby to hurry up. I did, however, know exactly what to do in this situation; I went to the living room, located my TV remote, sat down in my recliner and turned on the football game as I prepared for the fashion show that would soon start in our living room as Libby went through several combinations of outfits.

I knew also that I had to be mentally prepared to give a much more enthusiastic reply when Libby modeled the next outfit if we had any hope of making our dinner reservations.  I rotated the side arm on my recliner to extend the footrest just as Libby stepped into the living room to model her outfit.  I was about to tell her how good she looked, but then I stopped myself when I realized that this must be some kind of test because she hadn’t changed clothes.

That’s when I noticed her hair, because instead of changing pants, top, shoes, pocketbook etc. she changed wigs, throwing off her brunette wig in favor of a silver one. I was genuinely impressed (by the speed of the newly coordinated colors not necessarily the colors themselves) and we were ready for our night out.  We were not late, Libby felt good about the way she looked and I was finally beginning to see the benefits of owning a large supply of wigs.