I Wish Someone Had Told Me
Todd was a collector of many things.
He loved finding an old typewriter at a thrift store or Goodwill. He would bring it home, clean it up, and research information about when it was made. He even searched for specific models that some of his favorite writers used back in the day. Todd found a Hermes 3000, far right photo, which is the same model used by Jack Kerouac, one of Todd's favorites.
He also collected, or loved purchasing, headphones. The girls would laugh when he would get a new pair because he already had so many. Todd always said his love for new headphones was like my love for bags. Last December, Todd and I traveled to Texas to see if MD Anderson had anything new or different to say regarding Todd's cancer. Unfortunately, they did not. When we were there, we located some Apple AirPods Pro at an Apple Store. At that time, it was difficult to find these for purchase so needless to say, he was pretty excited. During our five day trip, he shared every single feature of the AirPods with me, maybe even twice.
The following week was Christmas. Christmas day, I noticed that some of what Todd was saying didn't really make sense. We had company on that day but he spent the majority of the day in bed. December 28 we were supposed to go to another Christmas gathering and he stayed home as he continued to feel worse and worse. This "sick" feeling was different than what he had experienced up to then. He couldn't really explain what was hurting and almost had a blank loss of words. Todd was never at a loss for words so this was confusing. He had started some heftier pain medication and an appetite enhancer so we thought maybe that was why. We went ahead and continued with the start of his third treatment plan. Even talking to the doctor prior to receiving the infusion, there was a blankness about his face. He had the treatment and it was when we got home that I realized something was very wrong.
Todd was sitting in his chair in our living room and had his new Apple AirPods Pro in his hands. He was fiddling with them and was trying to put the pods back in the little case. This continued for over 10 minutes as he patiently kept twisting them trying to get them to fit in the hole. I was silently watching with such a sick feeling in my stomach. He couldn't figure out how to fit them in the case even though it is something he had done so many times. The look on his face was emotionless, he just kept turning and turning the pods. At one point, he took a pair of clippers sitting on the side table and began to grab the rubber part with the clippers. I was trying not to intervene because so much of Todd's independence had been stripped in the past five months, since the cancer diagnosis. I eventually called Maggie to the living room to distract him so I could put the AirPods back in the case for him. This confusion in daily tasks, daily interactions, and conversation continued.
I wish someone had told me that high ammonia levels cause confusion. I wish someone would have told me that as ammonia levels increase his mind would not be the same. I wish someone had told me that high ammonia levels are common when cancer has metastasized to the liver. For me, this was the hardest thing to watch and to this day, I cannot seem to stop visualizing the AirPod incident. We were so focused on the physical symptoms like pain, nutrition, weight loss, skin care, and other things that could be evidenced with our eyes. It was just so hard to watch his mind, that beautiful mind, not know what to do with everyday objects. Even though his body had changed throughout the treatment, up until that point, his mind was still with us, which meant HE was still with us.
Who is to say that having a heads up on cognitive issues (hepatic encephalopathy) on our path would have helped? We did get some medicine to help manage the ammonia levels but once Todd discovered I was hiding it in his Cane's Sweet Tea, he was often caught dumping the tea in the sink. He didn't understand (due to his confusion) what the medicine was for so he wouldn't take it. When Hospice joined our team, I did receive information on cognitive issues which helped some. I just wasn't prepared to watch him struggle so much with thinking...at age 51.
At this point in a blog post I usually try to make a connection to moving forward. However, I am still working on moving forward with this. I just needed to share, writing has become a great therapy for me. I only hope that someone may read this and be able to share with someone that may benefit from the information so they will not be able to say, "I wish someone had told me."