The Last Great Day

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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!

 

 

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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.