As 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.