Did you ever know something was true, but it just didn’t feel true? Walking through Kat’s illness with her, most of the time, I felt useless or close to it. I wanted to make her better and I could not. Just sitting in the hospital room with her day in and day out seemed like something that anyone could do. I was just taking up space. Deep down there was a rational part of me that knew it was not true, but I frequently felt otherwise.
But sometimes you just know. Like the back rubs…
Kat loved my back rubs. We had a physical and even a spiritual connection when I rubbed her back. And as a bonus I actually felt my own unique value. When the pain was unbearable for her and it was not yet time for more meds, she would have me press into her lower back with as much effort as I could. Sometimes I would use my elbows to dig into the muscles in the small of her back. However hard I pressed, she could always take more. When she sensed that I was getting tired, she would remind me that she was not going ask me to stop. I would have to decide for myself when I could not do any more.
It puzzled me how a back rub could help this pain in her abdomen. It was clearly not medication and did not make the pain go away. But I knew it provided some kind of relief because she kept asking for me to do it. I asked her once how it helped. Her answer surprised me.
She said, “You know how when you have a tooth ache, you can bite down on something and it brings some relief? It doesn’t take the pain away, but it somehow dulls it. It’s like that.” That I could relate to.
As I rubbed her back, my mind would wander. Many times when I would be so ready to quit, I would think to myself that one day I would long to be able to do it again. Now through my tears, I recognize that that time has come.
There was a short time after her chemo stopped when she was feeling better. She still liked to get back rubs, but she would ask for a “regular” back rub. The photo above is a “regular” back rub. The cutie rubbing my back is Kat’s niece, Molly (my grandjoy). This was not the hard pressing on the back that she wanted during the worst of the pain. Once, I demonstrated the hard back rub for her. As soon as I pressed in with my elbow, she told me to stop because it hurt. She could not believe how hard I had been pressing on her.
When Kat was a teenager and deep in depression, Jeanie and I were desperate for some way to connect with her. We found help in a book named The Five Love Languages for Teenagers. It’s part of a series of books based on the idea that there are five basic ways that people can give and receive love: Gifts, Acts of service, Words of affirmation, Quality time and Touch. This book helped me to think of new ways to lovingly connect with her during a time when she was not very easy to love.
Somehow I determined that Kat’s primary love language was Touch. The conundrum was the fact that as a teenager in the throws of depression, she did not want to be touched. Someone who loved to be touched and did not want to be touched. Ugh! Over time, I carefully experimented and found that a well timed tickle or wrestling match sent her a message that she mattered to me and that I loved her. I would walk into the room where she was and wave my arms around like Morpheus from the Matrix in preparation for a fight. Then I would do the gesture with my fingers inviting her to “give me your best shot”. If she was in the mood, we’d have some fun. I had to be careful though. She would beat the tar out of me if I did not escape.
When she got sick and first started asking me to rub her back, remembering her love language of touch made it even more special for me. Not only was I meeting an immediate physical request and need, but there was an emotional (even spiritual) connection of love in the very touch of my hands on her back. I felt needed.
One night I both understood and felt that I played a part that no one else on the planet could have, but before I tell you about it, I need to set it up… Kat had moved back to Asheville during the Spring and Summer of 2012 when she was feeling better, but the pain had returned. She was becoming less communicative and that had us worried. On Monday, September 10th, Jeanie drove to Morganton to see Kat’s sister, Danae. Morganton is halfway to Asheville so when she left Morganton, she continued up the mountain to check on Kat. She found that Kat was not doing well at all. Her pain was escalating more rapidly than expected and was more than her prescriptions could touch. So she stayed with her for the night. That night it got so bad that she was taken to the ED at Mission Hospital in Asheville.
The next day, they transported her via ambulance to Duke Hospital in Durham. That was to be the last time that she would be in Asheville. Jeanie sent her off with the transport team in Asheville and I received her from them at Duke. I don’t think the transport team had ever experienced a hand off quite like that before. Jeanie and I were a great team fighting for Kat.
That night, the focus was on getting Kat’s pain under control using a PCA machine. The PCA gave a continuous dose of pain meds through her port, but also allowed her to increase the dose by pressing a button to get more (a bolus dose) whenever she needed it… (but within limits). They limit it four ways, the continuous dose, the bolus dose, the minimum time between boluses and the maximum dosage in a given time. It took time to get her stable, but by late that night, they had increased Kat’s meds enough that she was finally resting and so was I.
The interns who were on duty that night were doing a terrific job. But, they did not know Kat and did not understand how she needed to be approached. They are trained (for good reason) to try to give as little pain meds as possible that will do the trick. If they give too much, it could kill her. They were about to learn some things about Kat…
Around midnight, I was awoken by an annoyed Kat asking her nurse what she was doing. Some patients are completely trusting of the medical staff and never ask questions. Not Kat! She always wanted to know exactly what was happening and why. Her nurse explained that she was changing the PCA machine to turn off the continuous dose completely. Kat went ballistic! She was extremely angry and frightened. She knew from experience what was coming with her pain. Through tears of fear and pain, she reasoned with the nurse that without the continuous dose, she would fall asleep which would cause her to miss an opportunity for a bolus. Without the bolus dose, she would wake up in excruciating pain. Then it would take extra meds given directly by the nurse and lots of unnecessary time and pain to get it back under control. Kat’s voice was the voice of experience begging her to not do this.
The poor nurse’s hands were tied. She had to do what she was ordered to do, but she was also sympathetic to Kat’s plea. I was in full agreement with Kat and I asked the nurse to let the doctor know that we wanted to see him or her. She agreed to call them in.
As far back as I can remember, Kat had a short, hot temper, which got her in plenty of trouble when she was a youngster. When she was a child, this seemed like a character flaw that we were somehow supposed to fix. At the very least, it was our job to help her overcome it. During our journey with her through this illness, I came to see her anger in a different light. This “character flaw” was actually the flip side of the very strength she was able to tap into to fight this awful disease. What we saw as a weakness was actually one of her greatest strengths.
There in the room after the nurse left, Kat was as angry as I have ever seen her. I (on the other hand) was drowning in helplessness. Here was my daughter in horrible pain, dying and not a damned thing I could do to make it better. She and I both know what needed to happen, but felt powerless to make them change it. We both knew it was going to be a long, painful and sleepless night. I was already rubbing her back hard in order to help her through it.
In that moment, I had a eureka moment. I am not sure how it happened, but it came to me that there was something that I could do. Kat needed me to help her in a way that only I could. In a flash, I was on. I changed roles from hand-wringing bystander to life coach. I affirmed her anger and her reasoning. I let her know that I agreed with her about what was happening and what needed to change to make it better. She needed to have this order reversed so that she would not miss the pain meds she needed and I was ready to help her fight for it.
Then I told her something that she did not expect. I told her to hold onto that anger. It was just the tool to help get what she needed. I coached her to talk to the doctor the same way she talked to the nurse. I had noticed that she was usually more aggressive with the nurses than the doctors. In that moment, I had objectivity that she did not to know that this was not the right time to be deferential. Her emotion would communicate an urgency that reason alone could not.
Thankfully, the doctor was there before we knew it. She stepped in and introduced herself and asked how she could help. Kat let her know just how upset she was about the decision to turn off the continuous dose. She rationally explained her reasons, but also with passion from fear of the coming pain. I was so proud of her.
The doctor listened to her and explained that another intern had made the decision earlier to stop the continuous dose. She explained his reasons for making that decision. Then without hesitation, she said that she agreed with kat and would reverse the decision. Then she left to do just that.
By this time, I was lying on the bed next to Kat rubbing her back. She was sitting with her legs hanging off the side of the bed. My arm and shoulder were sore from pressing so hard, so I used my leg to push against my arm in order to give it some more pressure. While doing this, I began to talk her down. I told her that the anger had done its work. She was getting exactly what she asked for. Holding onto the anger was counterproductive at this point. Gradually she calmed down and soon the nurse came in and put all to rights again with the PCA meds.
That night, I had a feeling of accomplishment. I was the only person in the whole world who could have done that for her. In no way do I mean to diminish what anyone else did for her in any way. I could surely have never fought for Kat the way Jeanie did, but in that moment no one could have fought for her the way I had either. No one else there knew her the way I did. My investment in our relationship laid a foundation of trust that allowed me to speak frankly and guide her. It was a moment when I felt the truth that was true all along. My presence mattered. Sometimes you just know.