Follow Ups

I took my wife at her word that it was just stress and also with me not being able to think as clearly as usual, I figured her emotions were what mine would be if roles were reversed. If there had ever been a time where her life had been at risk I would have been a million times more nervous and afraid. With the way the results appeared I was relieved but exhausted and was putting out my nervous energy doing things around the house and was hoping hers would also dissipate.

My mom left after the first week and my friend Susan had come to stay for part of the second week after the surgery. She took me to my doctor’s appointments and I asked my wife if she wanted us to call her after them and she stated that it was okay because Susan was going to be taking notes.

I had an appointment with my neurologist who looked at the MRI’s from Duke post surgery and literally left the room asking to make sure that those were the right ones because it looked like they were much too clean for that invasive of a surgery. He came back and commented on how Dr. Friedman was clearly a very very good surgeon. Then he made a remark “Wow, wow, wow, I can’t believe it, I’m tickled to death.” Apparently part of my sense of humor and wit was still working because I immediately responded with, “Well, I’m tickled to life.”

Susan, a good friend, would notice that I was quieter than usual, had a little less energy and that I did come across as slower. We went back after having lunch to do an EEG where the doctor stated that it was clear that my brain was operating at a slower level than usual. It was still faster than average but had slowed down. Trying to be both realistic and encouraging he was honest about the fact that this could be permanent or it could be a side effect from the steroids, pain medication or the procedure itself but that only time would tell. It was tough to balance the joy of being alive without major complications and accepting that the kid who had been valedictorian and a double degree suma cum laude graduate being had his brain become slower and that it may permanently remain so.

From there we went to see the neuropsychologist’s office for a second appointment. (His office had called me the previous week because they were going to be starting an intense speech rehab for people who had gotten serious speech complications from surgeries like mine but they stated that just from talking on the phone they could tell that I didn’t have that type of setback and that I just needed to come in for a short appointment to figure out the neuropsychological). The doctor picked up that I was making some speech mistakes that people like Susan and other friends had noticed but I had no perception of. Unlike the ones after the surgery where I couldn’t recall that I had already said something, these were ones were I was clearly skipping words or mixing them up for others. He said this may still be because the swelling was still clearly present and so we scheduled the 8 hour redo neuropsychological for almost a month after the surgery. Unlike the first time where we did it all in one sitting, because it was obvious that I had a lower energy level, we divided into 2 AM sessions in order to make it less mentally exhausting and therefore more valid.

Nonetheless, these were considered minor things and the doctor cleared me to return to work part time 3 weeks earlier than was originally expected and back to driving about a month earlier than expected so after the appointments work is where I went to turn in those forms. I also decided to go say hello to a few people but quickly developed a strange vertigo if I stood too long. I could literally not stand up straight for very long without feeling dizzy. So when I would talk to people who I was going to visit with a few minutes I made sure to sit down. When I was only there for a little while I would lean against the door looking nonchalant. I turned in the forms to the appropriate people and the director (whose name was Joe so everytime I looked at anything in his office with his name 20 people came to mind). Anyway, the director stated that he would be recommending to the chief that once I was cleared to drive he would recommend I would be getting my old position back. There was a point in his office where as he was being congratulatory I faded a little but was afraid to show any weakness because I wanted my job back and figured by the time I’d get back it would be gone.

I’d sat here in suspense for a few months and would I be getting my job back, my ability to drive back, a large peace of mind this easily? I just kept thinking it couldn’t be this easy.

Odd Side Effects

The sense of humor and shock effect were their own problems but I still was trying to keep going. I went to my running group and I hadn’t been cleared to run so I walked as fast as I could, literally going back both days of the workout the days. I kept focusing on the language stuff but I also started to think about things that would make the house feel more like home. I encouraged my wife to go to pick out new stuff to redecorate her bathroom. We were working on the garden and she picked out plants. I kept hoping something would help her realize that it was time for a new approach to our family and she kept going shopping so I thought maybe, just maybe something was connection.

Still there were still some literal brain side effects that were interesting and with the emotions being overwhelmed by other things, they were discouraging but minimal by comparison. On the memory games I was playing, I seemed to keep improving everyday and was about 80% back to my ‘high scores’ on the ones that I had done before the surgery and the ones that I had purposely not done was improving each day. I was sucking at games I’d always excelled at like scattegories and scrabble and boggle and it was fairly obvious to me and to anyone who had ever done these types of games with me that I wasn’t anywhere near myself. I had always been a guy who was extremely social and drew energy from crowds but for the first time ever I may have understood introverts because for reasons that I couldn’t understand or explain, when I went to the store or the mall or places with large crowds I was uncomfortable. Not overwhelmed but definitely uncomfortable and wrote a note to myself, wondering what it would be like to be at a football game or events that had usually so thoroughly pumped me up. I never had the opportunity and because I felt off and was incredibly self conscious because there were literally staples sticking on the side of my head, I was sticking to only people I knew and who knew about the diagnosis. Originally I had decided to not make any new friends for a while because I didn’t want people to start a relationship with me out of pity or sympathy due to my cancer deficit. I wanted friends who liked me despite my cancer, not because of it.

Another strange side effect was the fact that I hated talking to anyone who had a common name for the first couple of weeks. The associative center of my head has still never healed correctly and now its been a few months but during those first several days I was not a fan of names like David because when I’d talk to someone and said their names, every other David would come to my mind from almost every stage in my life. Friends with names like Joe, Will, Rachel were tough because I couldn’t control when their name was said the images of several others like them. I started enjoying friends who had odder names and was very curious as to what if I had not had a unique name. A few months out, I still sometimes call people by the wrong name like Kiana her mother's name and vice versa or when referring to the cancer I call it the marathon. I know this is common for some people but I’d never made these types of mistakes before the sugery.

In the midst of all this, a friend, who thankfully had a unique nickname, Egon, was the one who took me to get my staples removed. Oddly enough apparently some of them were stuck pretty tough as the nurse struggled to get them out. It was bad enough Egon passed out as he watched because he said that the stitches were making the side of my skull both squirt blood and the skin itself was getting pulled very far. I watched him pass out and told the nurse and all of a sudden we had to have a second nurse in there to see how he was doing. I was grateful he had taken me because I still wasn’t cleared to drive and all of a sudden we had to have two friends come get us because one to pick his car up and drive him home and someone to come along with them to drive their own car home. When we got home, I took a nap and he worked on the garden pretty hard and then after my mother fed us to where he felt good enough to head home.

I had a rare cancer that cause me to have little control of my mind, cause my friends to pass out and my wife was talking about leaving me. I’d always had a unique life but man it was going strange fast

Breaking Pride

The next week was an odd week. My mother was there and it hadn’t been long enough for me to have medical appointments so I was at the house with her most of the day. Even as groggy as I was, I realized I had some great friends. My friends David and Cindy Armstrong helped me start a project that my wife had always wanted to do but I’d been kind of putting off, planting a garden. We’d always kind of busy and out and about people so I didn’t want something that so literally tied us down to the house but it was something that I realized I was going to be stuck to both physically and financially for a while so thought it would be great. They really knew what they were doing and since it was their child’s spring break, the three of them came over a few hours everyday to tear part of this tree down, get some dirt. Everyday every important decision I would defer to my wife getting home from her work day which for some reason kept being later and later.

Friends from high school, college, the running group, ultimate came in from within town and from a few hours away like they had at Duke to say hello, to have a meal, to drop off a gift, to help with the garden. The thought that I had during the Happy Hour and during the process kept echoing that maybe I’d done many things wrong in my life but I’d have to have done a couple right to have people being so kind. My belief in humanity kept rising but my belief in myself kept somewhat falling.

I kept trying to address whatever I had done wrong with my wife. I worked harder physically on the garden than I probably should have and while I was supposed to be doing more memory and language games for “rehab,” I did things that I hoped would impress my wife. She had always had wall words on the refrigerator so for the first time ever I organized several hundred of them into starts with A, B etc so they would be easier to find. She got home and shrugged it off. The sentiment of being overwhelmed about how much I loved her, and the awareness that I had neglected to take care of our relationship appropriately was on me but apparently it was on her as well. It’s amusing the way we sometimes try to control the universe when we can’t. She had for the first time in our marriage organized every room in the house while I had the diagnosis. I was for the first time in my life making the house somewhere to live instead of just somewhere to sleep to try to please her. She had lost weight during the diagnosis but it wasn’t until I was stressed about her. My death had not scared me but these conversations about losing the love of my life was scaring the life out of me.

The conversations between her and I continued on a loop where I would try to appeal to her about the fact that here the main changes I had decided to do in my life was a tattoo which symbolized our family and changes to the house that she had asked for years before and that sadly, I had dismissed. That was my loop and her loop seemed to be that she didn’t know if she wanted the rest of her life with me; I couldn’t honestly understand. Four or five days after I got home she came back from the gym and said sorry about the conversations that she was just stressed and needed to get to the gym more. That was the first night I slept more than 45 minutes at a time.

The friends kept coming at night too to help me play board games that were memory and language centered. My mom, ever a kitchen goddess, continued to line up their food plates. I’ve always been a proud guy and that week was breaking my pride left and right. For the first time ever I was having to accept help for some basic things and the woman that I’d created playlists that reminded me of her to get through the worried days was so distant.

You're Kidding Right

The next day my wife and I were talking awkwardly and I wasn’t quite sure how to proceed with her. I’d spent all week only sleeping 45 minutes to an hour at a time. I had to pee when I was awake every 20 minutes or so. I was coming off steroids and pain medication and felt very off balanced. My wife seemed very distant and it was all very confusing. I went to a hat tournament that was benefitting one of my friends Splat and got to see a lot of the ultimnd get thate crowd. They were glad to see me but several of them noticed that I was off and while polite and cordial would not tell me so for a while. Something that several of them noticed was the fact that unlike usual I was not cracking jokes not understanding them. This would continue for a while and when people would say something funny I had to process it more and then finally would either realize they were kidding or if I couldn’t see the humor (more often than not), I would ask them to explain themselves and after a short explanation I would understand that it was a joke.

My wife and I went to a musical concert to support our friend Alexa that afternoon with our daughter and it was the first and only time I’d ever left a concert early from lack of energy. Kiana was also fidgety which was also taking a lot of energy out of me. I’d been told to keep the weight that I picked up to under 10 lbs and tried to pick her up and could literally feel muscles in my jaw pulling and it was less than pleasant.

We would talk again that evening and the conversation was again awkward and painful. We had gone on a walk and I had to stop and pee on trees several times and she appeared remarkably mean or indifferent about it and told me, have you talked to your doctor about this? I had spent the week at Duke trying to get my brother or my friend Alex to change my plane ticket so I could get back to her quickly but she didn’t seem to care. It would be the beginning of would become fairly obvious that brain cancer for me had led me to realize that my family needed better connection, to address some issues, work on some problems some years old. My wife had apparently also arrived at that conclusion but appeared to be leaning away as I was trying to fix things. I was in enough of a hazy faze that I thought maybe it was just exhaustion talking from her point of view and that this was going to be one of those rough patches of marriage that supposedly the good marriages go through arough but in my world where so much had just been threatened in life, including life itself, how was I supposed to just accept that the woman who was most significant in getting me through it was trying to check out? In my natural tendency to try to put some order into the universe, I set my mind in trying to make things work and that perhaps like all the other jokes I wasn’t getting that she was just kidding.

Awkward homecoming

There was a Seventh-day Adventist church, the church I grew up in and had been a pastor in, who had been helping my mother throughout the week. They asked me to speak briefly on Saturday morning and here was a guy at the lowest energy level I could remember trying to be the charming, well spoken witty guy I was known to be. I stood up and said something I’ll always stand by, that I appreciated their prayers and that I was glad that it looked like this wasn’t going to kill me but that I still was going to die anyway at some point and that we should live with that perspective in my mind.

So the next day I got to fly home and was very excited about seeing my wife and my daughter. I had brought back a few bottles of rum and various souvenirs from Barbados for the people who had and who would continue to be helpful. My energy was so low that to go to the next door neighbors house was pretty exhausting but it was good to see them. It was depressing to not be able to pick up my daughter due to the weight restrictions which could literally tear open muscles and scar in my head (with my great rule following etiquette I tried it a few days later anyway and it hurt like hell so I would not try it again).

Nonetheless, I got home and talked to my wife and told her how excited I was about getting the tattoo of our family and the conversation turned awkward quickly. I couldn’t figure out what was going on; here was the woman I’d fought to stay alive for and she seemed incredibly distant. I told her I needed to make some changes and readdress some big and small issues about how I’d handled being a father and a husband. She came off as very close to the idea, suggesting that she’d rather not. In frustration, I simply asked if forced to choose if she would rather take the door or stay here. She took it (and it’s not hard to imagine) as me saying my way or the highway and like any smart person, she said between those options she took the highway. The evening calmed down a little and we went to sleep but it was not a warm homecoming.

I went to bed scared but hoped it was stress or fear or something driving this and that as we started doing stuff around the house she had always wanted to do: planting a garden, updating her and Kiana’s bathroom, fixing the fireplace that this would just be one of those rough patches of marriage which I hadn’t perceived. I even would write a few thoughts down that maybe how well the surgery had gone and how badly this seemed was simply all just one gigantic hallucination. I’d switch those two results in a hurry.