Losing Control

I still wasn’t cleared to run or pick up Kiana so I was missing some of my own stress relief but I kept doing rehab on the Ipad. Everyday I kept getting better at these games but with almost none of them was I at a presurgery level. Perhaps the right attitude would have just been to be glad about the likely prognosis or to be alive without any major complications but I wasn’t fighting just to be alive but to get my life back so I kept doing this because I had been told that the first several weeks were the most critical to reconnecting the synapses. Like any other injury, initial rehab was more important than anything else.

However, I was still worried about my wife so I did things that I hoped would impress her. We had always kept refrigerator magnets because she was a creative writing major and it helped her express herself. For the first time ever, I put them all in order alphabetically so they would be easier for her and others to find. In retrospect, it’s odd how some of these things look. She had for the first time ever in our marriage, after the diagnosis, reorganized every room in the house. I was now trying to organize tiny little things. Perhaps she had been afraid of me dying and now I was afraid of what I had fought to stay alive for, living with her. It’s intriguing and silly the things we try to do when we realize we have absolutely no control of some of the most meaningful things in life.

The friends kept coming, the house kept improving in looks and we continued to make it “ours.” People like Kevin Fritz, an electrician friend was helping me put in new light fixtures. Dre, whose parents house I’d stayed at in Duke, was helping us pick out some tile to put on the fireplace. Since I was not going to have to follow up I just sank every cent of our tax refund into the house.

Susan and I had gone by to see the tattoo artist and were excited about the lion family he would be tattooing in a few weeks. Susan left one day and it was the one night that she and I would have by ourselves and somehow, for reasons I may never understand, the tension had been rising after the surgery had been cleared. That night my wife again brought up how she wanted to leave. I yelled about how I was getting a tattoo of her on my arm, how she was the center of my life. She argued back that I was getting the tattoo for me, not for her. I tried to argue I’d spend the recovery week of Duke with pleasant dreams of her, trying to figure out what to do for our 10th anniversary. She said that I had no idea what I was talking about. The tension kept rising, she walked away from me and I walked after her and then she slammed a bedroom door in my phase. And then, in the moment I’m most ashamed of in my life, I was less than physically appropriate with her. I immediately apologized and handed her my cell phone and told her if she wanted to call the police or call anyone I was ready to accept consequences. She cried but didn’t call anyone. We talked, cried, were awkward for a couple of hours and then went to bed together and I had tons of shame. I could sit here and try to tell you that I’d been on steroids for 10 days or that I hadn’t slept for a solid night in almost 3 weeks but explanation is no excuse. I was just wrong and if I could take any moment back in my life, I would. And if you’re reading this, please consider it a public apology. We went to bed that morning and the next morning had breakfast where she said I love you but we were both clearly shaken up.

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.

Surprising Follow Up

8 days after I got out of the hospital, I had to go back for a follow up. Sleeping had been incredibly difficult for the last week with me not able to do more than an hour to two at a time. Part of the problem was likely the steroids and medication but I imagine another part was the fact that for the first time I could remember I was having to sleep on my back where I usually slept on the side where my swollen head was (was this the cause of brain cancer?). I had to take a nap everyday and that Friday was the first time I had used an alarm clock in weeks (I don’t usually use an alarm clock in regular life) and was getting up at 6:30 for an 8:00 Am appointment. The night before, I had not been able to fall asleep until almost two am due to the anxiety of the next day.

There I had sat wondering whether it was going to be the 2, 3 or 5 week scenario. They had also told me they would be doing some test work on what they removed. In the best case scenario they hoped for, the cells would come back as 3 to 5% actively cancerous they had stated before. But in the follow, they told me in my case, it was 0%. These Duke doctors, which had been the most optimistic out of all that I had talked to, had hoped they were buying me 10 years. The simple truth was that this surgery was simply supposed to be just an extension of my death sentence but now they stated that they thought it was unlikely that I was going to die of this. I was not going to have to come back for 5 months because that’s about how long before the “hole” in my brain would refill. I’d have to do MRI’s as a monitoring tool forever to check if it came back and do anti-seizure medication twice a day but a minor daily change and a tri-annual check was, in the scheme of things, fairly minor. It would be pointed out that the monitoring starting point after the surgery was where they hoped most patients with my diagnosis were a few years after not immediately. My mother immediately broke into tears and loudly praised God for his miracles. Alex who was taking notes for my wife as to what I needed to be doing and the diagnosis stopped writing because he didn’t expect news anywhere near this good. I called my wife and she very casually stated that was what she expected, I was so low on energy that I didn’t quite catch why this would be so as no doctor had stated they thought this was possible much less likely and she herself had said to a friend that even if this went well, it was going to be tough to live with the concept of an expiration date in mind.

Unfortunately, the medical appointments weren’t over. My eye was looking really red and instead of getting to go home after these appointments at noon as I’d hoped, they set up an appointment for the afternoon to check some things about my vision. After a variety of tests, they determined that my eye was just scratched. One of the tests left me so near/far sighted (not sure which is the correct term) that I could only see things clearly that were like 40 yards away.

Since this was my first time back at Duke since the surgery, we went shopping. I had hoped to be able to find a shot glass, t-shirt or something that said March Madness Duke ’11 but the tournament was still two weeks away even if I was already ending my personal March Madness. Plus, I needed an active way of cheering for them during the tournament. I still bought a few things in addition to some of the ones my mother and brother had gotten me to remind me of this point, some touchstones to never take these opportunities for granted, to help me recall that I’d gotten an incredible opportunity.

Walks, Talks and Quirks

My wife being gone was hard and I tried to call her every chance I got. Luckily there was some secondary support, the people I was being hosted with were awfully kind and typically were the ones taking my blood pressure and pulse and making sure I ate. Also several friends from the area or not too far came by and shared their kindness.

The best man from my wedding, Gil, drove 7 hours in spent a couple of hours with me and drove home as it was the only day he could spare. A friend who lived 3 hours away, Linda spent a couple of day. I got to spend time with friends who lived right there in the city. My little brother and mother were there on a daily basis. My friend Alex would spend the second half of the week with me. With almost all of them, I’d want to have our conversations on the road while we were walking rather than just sitting around somewhere. My energy levels were still off because I was still sleeping only in very short intervals but I still wanted to be doing something physical despite the fact I couldn’t run, lift weights or play any sports so I just went walking. By day 4 or 5, I was going on 2 or 3 two to three mile walks. The conversations varied depending on who I was walking with. I’d be thankful for the company and would say that but apparently was also very repetitive. I would have the same conversation two or three times within the same walk and people would just kindly put up with it. Likewise, I would blank out on 10-12 basic words a day, each day a few more but it was a weird phenomenon where I could clearly see the item in my mind but I couldn’t come up with the word for it in any language. Words like insulation where I could see an attic full of white stuff and could state that and say the stuff that is in there that keeps your house warm or cool. Eventually rather than having people tell me the word I’d ask them for hints though for some reason I’d still miss it most of the time. The doctors had warned me about this, that some gaps would be there between the neurons and that the smart thing would be to explain it to people and have them tell you what it was rather than hiding it.

Also took a clear appreciation to people with unique names like Gil because anyone who had a common name like Joe or Jerry whenever I would think of their name, everyone who I knew by that name would come to mind immediately. It was strange because I was putting no conscious effort into it but when their name floated, a dozen or so would come into the screen of my mind. Joe Paniagua, Joe Chavez, Joe Stanley when I was talking to Joe Jones. Staying with a Jim made that particular quality interesting. However, luckily, I didn’t know any other Kianas.

I also started calling various people within a day or two of getting ‘home.’ For whenever first time I would make phone, I had actually written a list of people who had put in time and effort into being very kind and helpful through this whole process. But soon I started calling a much longer list of people and while I haven’t checked my cell phone bill to see how much I did it, clearly my memory was still off because a couple of people have called and said I called them a day or two apart and essentially had the same conversation.

During the walk and talks was when my mind felt clearest. I would talk about some highly emotional things like hoping I was going to get my job back. I talked to my little brother David about the fact that while the surgery had gone well to remember that this was just buying me time and that I was likely still going to be dead within 10 years. I had tried to have this conversation with my mother but it had gone too awkward and David stated he would have it and make sure she was aware.

My wife called rarely and briefly but still every day and said that she was sorry for not being in more contact. She stated getting back to work was stressful and distracting. I even mentioned to my host that while I wasn’t glad she was stressed, I was glad that the source of stress wasn’t me. I told her I’d help with anything now of when I got back and that I couldn’t wait until the walks and talks were with her.