Wednesday, March 30, 2011

Not Armstrong

The day I got out of the hospital was much tougher than I realized. They took me down in a wheelchair and slight bumps were much harder than I would have imagined. My hosts were kind enough to drive me home and each road imperfection felt gigantic. It felt so rough that I would literally refuse riding in a car for several days. While I didn’t complain a single time, the thought that maybe I should have stayed at that hotel that was within a couple of hundred yards of the hospital entrance because that half hour ride was rough.

We got to the house and I got put into the bed. Getting out early had both advantages and disadvantages. My wife had said she was not happy about leaving so early, not thinking I was going to get cleared or that things would be looking this well that fast but she also liked the idea of getting back home to Kiana that early so had gone along for that. I was excited about that idea that Kiana was going to start getting some of her routine back and was aware enough to realize that a 4 year old needed her mother more badly because this 30 year old, a little weakened could have a variety of company. Still, before we left the hospital on Saturday the 5th, the hospital follow up had been scheduled for Friday the 11th. My flight was scheduled for the afternoon of the 12th and shortly after my wife left, I started trying to reschedule my flight for the 11th so that I could get home to my family as soon as possible. Dre seemed to tell me to slow down and just see how the week went but I emailed my friend Alex who would be coming later and returning home with me and asked him to check on it. Only a few hours after my wife left and I was already to get back to her and my daughter. Even if the flight changed I knew that this would be the longest I would have been away from her and while I’d call her everyday that was nowhere near adequate. People were visiting, being kind but I had prepared this playlist to get me through the week, a list on my ipad that I’d play in the background while doing some of the rehab games or while having down time. I kept listening to “Home,” a song sung by Celtic Thunder with the following lyrics echoing in my heart:

“Maybe surrounded by
A million people I
Still feel all alone
Just wanna go home
I miss you, you know

And I've been keeping all the letters that I wrote to you
Each one a line or two
'I'm fine baby, how are you?'
Well I would send them but I know that it's just not enough
My words were cold and flat
And you deserve more than that

Another airplane
Another sunny place
I'm lucky I know
But I wanna go home”

Calling my wife and Kiana everyday was the highlight of each day. In what turned out to be an inadequate way, I was trying to relieve what I perceived as the cause of my wife’s stress. I contacted a few friends and encouraged them to visit my wife or to take her out so that part of the week that I was gone could have some great fun. While my motive was in the right place, apparently some of these actions were a little too pushy for her as she called me and told me to slow down because she was trying to spend some time with Kiana. Begrudgingly, I accepted it.

My hosts were incredibly gracious about their meals and kindness. Friends were coming to visit and each day I was walking a little bit more. Something I said to them that week that while I sat here and waited for the results and the follow up, the main thing I started to realize was that I was due for some changes. Throughout the process, I had kept saying that I was just trying to get back to my life but those first few days after the surgery, what I kept saying to myself, to my wife, to the various visitors and hosts was that no matter how well this went, that I needed to be a better father and husband after this. I don’t think I was a bad one but some of my perspectives from growing up as a Hispanic male and having grown up a good part of my childhood without a father made me realize I had much more room for improvement than I’d ever seen. It’s funny that having cancer removed from my brain opened up my mind to a much better perspective. Other friends had tried to focus on some other views; One friend had dared to suggest that I was like Lance Armstrong due to the Boston bit despite cancer; I disregarded that and said that while Mr. Armstrong has done many amazing things that I wouldn’t want his story because in the end he and his family split up. Now while I have no details and have no idea what his cause was, I’d much rather fail at everything else and keep the family. Jim and Jan, the people keeping me, stated that it was clear from the way my wife talked about me that I had nothing to worry about.

Tuesday, March 29, 2011

Not My Proudest Moment

I had run miles the day before admitting myself to the hospital the day before the surgery, walked a couple the morning of. The morning after the surgery I got up to try to do some walking and followed through by walking 8 times around the elevator lobby and was pretty exhausted. I couldn’t help both be both amused and frustrated by the fact that a guy who had qualified for the Boston marathon less than two weeks before could now hardly walk.

My little brother David had arrived the night before; to this day, I honestly can’t remember whether the idea of him being there is something I recall because I was told he was there or if it’s an actual memory. The next morning I recall him being there; he stated it was tough to walk in and see me post surgery as the first time he’d seen me in quite a while. I got out of the ICU in about 16 hours because my system was stable and one of the nurses said that was the quickest she’d ever seen someone get out of ICU after brain surgery. While that was flattering, I don’t know that it’s my proudest first place.

My mom and brothers were there the next morning and it would be quite late before my wife arrived. No one could get a hold of her and so they were worried and I was also lonely for her. It turned out that she had slept in that morning from me keeping her up the night before but since I had no recollection of that it hadn’t occurred to me.

The doctors had initially told me that I’d be released on Sunday afternoon or Monday if all went well. They now said with how I was progressing I might get out Saturday morning instead. Then I would have a follow up appointment on Friday where they’d let me know how the prognosis was looking and that I would have to return in 2, 3 or 5 weeks for follow up which would likely be radiation, chemotherapy and/or medial experimentation. The majority of patients ended up in one of those and I should be prepared. I asked if I could do the follow up with someone in Texas and they said that was up to me but pointed out that their place, they believed, was the best. Honestly, when they told me about the 3 possible time options, I had hoped that when they gave me the final info that it would be 3 weeks. This was despite the fact they made it clear that the sooner I came back was because the prognosis was worse and it could be said that I should have wanted the 5 week mark but every one of the doctor’s appointments I’d had with options thus far had come back as worst case scenario so for once I thought I’d be thrilled to have the middle of the pack option.

I called a few people that day and said hello and told them things had gone well but it was a bare minimum. I had made a short list of people before the surgery to call them because they had been so incredibly helpful. They almost all reacted very kindly but also were shocked at how I came across stating it seemed too well. The conversations were all short because my energy level was still low and my pain level rather high but they all stated I came across as happy and enthusiastic, that they loved that about me. I had received over 200 hundred emails, texts and phone calls from almost that many people both before and after the surgery. I was rather humbled by this; while I’ve always carried myself fairly confidently and it would be unfair to say that I often wasn’t arrogant, I suddenly started to understand humility. I realized that not even if I had volunteered every hour of my life to this point or volunteered every single one from that point on could I earn this much support. I had joked to Todd a few weeks before that “Whatever doesn’t kill me makes me more arrogant.” With essentially rolled eyes, he said “Only you would say that” but I’d failed to follow that through. I’d gotten this far almost entirely on the backs, hearts and skills of others. My head was swollen but unlike usual this time it was only from the surgery.

Monday, March 28, 2011

Missing Moments

Things occurred during and after the surgery that I have no recall of but have been told stories about. Apparently shortly after I woke up the doctor went through and asked me a series of questions about where I was and I responded Florida. I responded that I had just come from Aruba (not Barbados), Aruba was actually where we went from our honeymoon. The year was 1980 something. It would be later explained to me that it was important that, despite getting the information incorrect, the fact that I was answering the questions with the right type of word was the more important factor (ie what year is it, purple would have been a bigger problem, 1980 something was not). My wife later told me that the questions I got correct were about her and Kiana which shows which parts of my mind weren’t flexible to being wrong. She made it her first facebook status that I’d gotten the important questions right.

That evening I was awake for four hours where I would demand things like bananas when I really meant pain killers or water. I would also suddenly start shaking myself in the bed trying to do something that wasn’t clear. Apparently the movement was so much that there was a point that the nurses thought that I might have to be restrained because one of these moments was trying to take the bandages off my head. This echoed the sentiment and actions from the original biopsy where (again I have no memory of this) despite the fact that I was wearing a catheter I was trying to forcibly get up to go pee. The nurse there told me it was unnecessary and that I needed to stay in bed. With smart aleckiness, I told her I would just wait till she left and then I’d go pee in the corner. Maybe I don’t have any superpowers but one of my regular abilities is a resistance to staying down.

I woke up at nine o’clock consciously and first thing I remember is that my wife was there with me. It turned out that it had been a mistake that I had placed an unnecessary burden on her by asking her to wait to let me post my own first facebook status several hours after the surgery. People had been bugging her for a few hours trying to figure out how I was doing. Had I thought of that possibility I would have never done it. About half an hour into being ‘awake,’ I placed my own status and said, without awareness of the mistakes I had made for the last few hours: “For those of you who had hoped I’d come out without language, sorry it’s still there’” and I also thanked people. The joke that had been a few times about putting in a mute button or a volume button had failed. I called Kiana and spoke with her for a few minutes and spoke with my wife for a little while longer and then faded out again a while before ten. However, I was still awake for a while and since I was in the ICU, no one was allowed to spend the night. My wife was trying to head out to head the half hour home but apparently every time she did I insisted that she stay, that I needed her. My subconscious state, unlike I rarely do during my fully conscious state, kept stating that my life was better with her present and that in a damaged state she was something that made my life stable. I finally fell actually asleep shortly before midnight and she headed to where we were staying.

A pattern began that night that would last for about 10 days, I had a variety of horrible nightmares and the only good dreams I had and I’d have them each night as well were about Kiana and her mom. It would be over a week before I’d even sleep straight for more than an hour and a half to two hours so I’d have more recall of dreams than I’d ever had. During the following week, this dream pattern continued. Since I would only briefly remember them, initially I was tempted to start writing them down but remembering nightmares was silly. I wrote down some of the good ones and they were essentially about doing some quality time with my wife and daughter, some were with each of them alone and some were with all three of us. Family was what had helped me stay alive and what got me through each night and what made me want to make dreams come true.

Sunday, March 27, 2011

The Why and Wherefore I'm Alive

Surgery day finally came around and I was blown away by all the kindness and support. I had tons of texts, several friends changed their facebook pictures to one with me in them, several more of their status were asking for prayers, positive vibes. One friend stated that whatever people’s hobbies were (ie praying to this or that deity, sacrificing animals, sending out positive vibes etc) to please do so on my behalf. No one had stayed with me the night before so I went out first thing in the morning and walked about two miles through the hospital lobby to kill some time and get some exercise.

They came in and checked things throughout the morning and finally told me that it had been moved up to noon. I made my own facebook status about that when I found out and again was blown away by how many people commented with some way of wishing me well in just a short time. One friend commented that many people caring said something about me though I responded with the truth, that it said something about them. Still, the reason I was fighting all this was to stay with my wife and my daughter. I even kicked my mother out for the last little while just to stay with my wife and call Kiana as the last few things I did before the surgery, updating my own status to a quote from song that I had listened to often over the last several weeks regarding my wife “She may be the reason I survive, the why and wherefore I’m alive for where she goes I’ve got to be, the reason for my life is She.”

Our last conversation before the surgery was differed a lot from the one before the biopsy. I told her to please make sure she made the dreambook page if something went wrong. She stated she would and she would try to fulfill many of the other dreams with Kiana. Unlike the last time, there wasn’t a single tear down her cheek. We talked about her updating my status as a way of communicating with people but I was hoping, daring to dream that I could do it myself so we made a deal that at 10
o’clock she would do it but if I came to before then I would. She didn’t want to be over specific or try to be clever and stated she with one of the following:
1) Surgery went well/had minor complication/had major complications. Will update in a day or two
2) Iram passed away please contact Todd Geldon if you want to be updated regarding funeral details.

I had sat with Todd and my wife separately about what to do if I passed away. I had been researched that the death rate of this surgery was about 5%. While some friends had mentioned that this seemed low, I couldn’t think of any other days where I had a 1 in 20 chance of dying through truth be told it was my understanding that Dr. Friedman’s batting average was much much lower. In regards to the funeral, the simple fact was that I wasn’t interested, in face had joked (but with some seriousness) that they should just cremate me and flush me down the toilet. They’d both blown me off about that and said that funerals were for other people but had agreed to keep it lighthearted and to do it somewhere like a house or a restaurant with no body because the body without my spirit, mind and heart wouldn’t be me so that was something I wanted avoided. My wife and I also had an odd and uncomfortable conversation that morning where she stated that if I passed away that she didn’t ever want to get married again, she wanted to just be single and in due time maybe be with someone but that she didn’t want anything as intense as what we had. She didn’t want to go to a life that was as pushy or ambitious as I took it. This was disappointing to me and I told her that she was amazing and incredible and to not become ordinary, that she and the world would be both getting robbed.

They came in asked me to donate the excess tissue they would remove for research (excess being what they took out beyond what was necessary for tests). I joked with several people that day and since about how they should be jealous that I got asked to donate my brain to science despite that it was clearly for the wrong reasons. Shortly after that, they came to get me. I hug and kissed my mother and held my wife’s hands for a while and hugged and kissed her. She was the reason I was getting this surgery, I’d taken her opinion over all else’s because I trusted her more than anyone and because if anything went wrong, the liability fell heaviest on her. She, the meaning of my life, was the last non medical person I saw and the first one I hoped to see coming out.

I went into the prep room where the nurses and doctors again laughed at my attitude and a few cracked I made about how they should make sure that they inserted super powers and smart alecky remarks in reaction to this or that question. They told me that they were going to put me to sleep and started to inject the anesthesiology; I consciously chose to think about Kiana and her mom and went unconscious very much at peace.

Saturday, March 26, 2011

Into His Hands

Somehow arriving from the Caribbean to brain surgery was less than exciting but still I was glad to be finally there. A friend of mine’s parents, Jim and Jan, were going to let my wife and I stay at their house and were kind enough to pick us up from the airport despite our late arrival. Surprisingly enough, I actually slept fairly well with almost no random thoughts that night but woke up early to get a few things done.

I got up and ran over four miles, wondering how long it would be before I’d get to run again. I wrote down a few thoughts to myself and some notes to remember. I wrote a note to my wife as well but in the end threw it away because it felt inadequate, saying little more than I love you and the only reason I want to come back is because of you and Kiana. It came across as cheesy and predictable. I had already given her a card that said “Grow old along with me, the best in life is yet to be.” For a guy who had always talked too much, been a preacher, spoken publicly in various places, words for the love of my life always seemed so less than adequate.

We drove to the hospital, one of the least/most exciting half hour drives of my life and checked in at one placed to have this blood test, that MRI, get admitted, have an IV put in (over my hospital stay I would keep track of the number of times they took some prick from me or a needle and it was over a dozen; always having been a pansy about this stuff, people were amused I was calmer about MRI’s and brain surgery than I was about needles). I had steroids being put in, this presurgery medication. There were some amusing moments like when they asked me before the MRI if I had any metal in my head. I have some titanium screws from the biopsy but somehow what came out of my mouth was:

Me: Adamantium
Nurse: Huh?
Me: Adamantium, no wait that’s from X-men, I have titanium

I couldn’t stop laughing about this for a while as the joke that I had received the most often was the fact that I was going to walk away from the surgery with superpowers and I was trying to already put them in.

Finally after some more conversation/tests, Dr. Allan Friedman, the main reason I had come to Duke came in and talked to me. I had chosen to delay putting on hospital gear as long as possible and was still wearing a shirt a friend had given me that read “It’s not rocket surgery”. Dr. Friedman never noticed it; (his assistant would later explain that he’s incredibly focused on your face when he meets you, wondering if something is being triggered and never even looks at people’s outfits). Friedman mention¬¬ed surgery would be about two o’clock the next day, asked about how my marathon went, blatantly but honestly pointed out that they weren’t going to cure me, just hoped to buy me time. Their hope was to remove 60 to 80% of the tumor and that they would be going underneath my brain. As he looked carefully at my biopsy scar, he was clearly both surprised and disappointed at how big it was and stated openly that they would have to incorporate it into the surgery and that came across as a complication. This was Wednesday, surgery would be on Thursday and they expected me to be in the ICU until Saturday and released from the hospital Sunday or Monday. He asked if I had any questions and I went through my list of a variety of things about the future of returning to work and life wherein he explained that most people have six weeks after before they are back to normal in energy levels, and wherever speech and memory would settle which could both possibly be less. Thoroughly impressive was the fact that he never seemed in a hurry and answered each question as if it was something significant. I suddenly realized ¬why this was the man into whose hands I would commend my spirit.

My older brother Alonso, mother and stepfather showed up late at night because their flight had been delayed and brought some food. My wife had already left to go back so we just had some growing up family time. We were up until almost midnight and talked. There was some good/awkward conversation and some great affection but there’s no way around that there’s nothing clearly to say that’s adequate for the night before brain cancer surgery.

Shortly after they left I spent a few minutes wondering how different the guy going to sleep the next night would be but after I fell asleep I again had no problems sleeping. One has to wonder whether the people who thought I was in denial or the people who thought I had accepted it with grace were the ones who were correct.

Tuesday, March 22, 2011

Happy Hours

Two days after the Marathon (which had left me thrilled and giddy), we had a Happy Hour to celebrate it and for my friends to see me before Duke. I had made an open invitation through facebook to Black Sheep Lodge, a restaurant I loved. I was, to say the least, blown away by the number of people who had shown up. A few dozen people were there hugging me and being kind, wishing me well, one brought a painting with three hearts representing me, my wife and Kiana. The compassion which people had poured out had become the touchstone of my life of the last few months. Nurses, friends, coworkers, practically strangers had continued to comment on my “fabulous attitude” and they never quite grasped that this was being handed to me; the lack of discouragement , frustration or even fear had been because life had given me so many people that had touched me and each one reminded that even with all this life was very, very good. I sat with two friends, Will and Todd, going over financial details and possibilities and begging them, trusting them that if something went wrong they would step in and make sure that my wife’s life would not be too complicated. If I needed help I would take it but above all else, they had to make sure Kiana and her mom were taken care of, that my goddess and my princess were treated the way they deserved.
I tried to spend some quality time with Kiana the last night I was there but something went wrong after a little while of playing with and I crashed hard after just an hour or two. This would sit heavy on my mind for quite a while. We dropped her off the next day and my wife and I headed to Barbados, with me feeling off. The first day in Barbados I was feeling so bad, had a fever and my throat hurt incredibly to swallow. Usually I would disregard these things for a while thinking I had a cold or something but with surgery the next week, the first thing I did in Barbados was go to the doctor. This was the icing of my medical bills and problem cake (not as good as cookies and cream ice cream cake) because my insurance didn’t apply there and I got a huge bill for less than 5 minutes with the doctor to tell me I had strep throat and a prescription, both of which were fully priced. I found it a little amusing that the first thing I did on my vacation was start out on a medical adventure and medical bill.
This was a very different trip than any vacation we’d ever taken. There was a lot of happy moments, some with just each other, others with a friend who was also there, others with strangers we met. There was a lot of walking on the beach, more quiet time than any vacation we’d had. I was greedier than usually about the vacation and some of the expectations I’d had for it. This was both ironic and stupid since I’d picked Barbados because my wife grew up in Hawaii and loves the beach but at some level I just was afraid this was my last normal week and I was unfortunately too self-centered about it. This was not completely so and my wife and I still had the majority of time as happy hours but that 20/20 retrospect made me wish that I’d turn that switch off and spent “my last few days” completely focused only on her happiness.
We did some old things like snorkeling; we’re both scuba divers but I’d been told not to do that since it affects brain pressure. We tried some new foods and did fun fast things like jet skiing. My wife said that my approach during that appeared reckless, as if I was watching out not at all for my safety, an approach that made her nervous. Still one of the things we did there was fulfill one of the things from our dreambook, windsurfing. my wife, like in life, showed quick ability to stay balanced on something unstable, to keep it moving forward, to do it with a smile when there was difficulty and to delight in a challenge and overcome it. I, as usual, struggled to learn something new but by the end had accepted the change and actually stayed up beaming at a novel event. If something went wrong March 3rd, at least the last thing I had done elsewhere was fulfill a dream with the love of my life.
The last couple of days were quiet, calm, at some level awkward because there was some level of fear that my wife would not be married to the same person she had said “I do” to. I bought some cards to send to work to send them after the surgery, planning, hoping, daring to dream that I would be able to send them and have them be sharp and show that they should let me back. I bought a few things for the people of the Ship of Fools who had organized the fundraising for this trip and then I got on a plane to go to one of the most significant chapters of my life and yet one I had no control over: brain surgery. While glad that the last few days before there were good ones with my wife, it was still tough to turn off the idea that the day I was flying to Duke was the day I should have been flying to Brazil. This was definitely a step down from Carnaval but more meaningful, right?

Wednesday, March 2, 2011

Valio La Pena

Marathon weekend finally rolled around. Having put off brain surgery for it, I was more than a little nervous. I had run 2 marathons before (13 days apart) and had only decided to do another one to try to qualify for Boston, a mark I had missed by nine minutes on my best one before.

This goal for some reason had become a great symbol for my life; this brain tumor had interrupted it, other things like my IT band problems had interrupted it. The training had been good, but less than I wanted. There were times where as people asked what my goal was, I’d almost hesitate to answer qualifying for Boston. I started out giving tentative answers like no matter how it went I’d be proud, but almost as quickly I’d add that if I didn’t qualify for Boston I’d be disappointed.

The weekend was originally supposed to be just about Boston, but things kept getting added to it that added support while also putting the pressure on. A friend from California, Shelly, decided to fly in and hang out for the weekend. It would be rather amusing that I accompanied her and my wife dancing because I sat and just watched like the shy boy I’d never been. Thent the Livestrong foundation gave me a tour of their facility. It was the first time that I’d met Ashley Koenings and Doug Ulman, the people who had provided so much support. They provided t-shirts for my wife and Kiana to wear during the marathon.

My running group, the Ship of Fools, decided to make me Shipmate of the Year. I was a little embarrassed that during the conversation, (before I realized that they were going to be announcing me), I was making fun of the presenter. They handed me a stack of several hundred-dollar bills to be used for the upcoming trip to Barbados, and added pressure by saying that they were sure I’d be qualifying for Boston. During my own thank you to the group, I commented on the fact that the only things I’d consistently gotten rides for were work, medical appointments, and marathon training. I thanked Sean and Buff (Jonathan), the guys who had primarily provided rides, but did not in the least address the Boston question. The weather report for the marathon was predicting a low temperature for the day that would be higher than the high temperature had been for both of my previous marathons. This had me intimidated.

Saturday morning, KVUE, a local TV station had decided to interview me because the 2011 marathon was the first time that Livestrong had sponsored the Austin Marathon and apparently I was a natural connection. I wore my Ship of Fools jersey and my Riverside Ultimate cap, giving nods to the communities that I would always owe so much of my life to. KVUE had given me a list of the questions before hand, a script they didn’t stick very close to and the last question was about how I had hoped to do. With hesitation and trepidation, I announced that I was going to try to qualify for Boston.

Saturday night, Shelly and my wife once again went dancing and got home about 1:30 in the morning. I awoke, and never got back to sleep…so I started doing laundry. Nervous and anxious at the starting line, I prepared to go and realized I had not brought the right headphones (texted my wife to get me those). So I had to begin the marathon without the playlist I had spent hours preparing. My goal was to keep the first twenty miles between a 7:00 and 7:10 per mile pace and keep the last 6.2 underneath a Boston pace, 7:15.

The support was overwhelming throughout the entire course; there were clever signs, irreverent ones with jokes about people’s mothers and that my BQ time was 3:40 (which is the women’s BQ time). There were friends who handed me ice water to pour over myself. People cheered, screamed and hollered; each one put a smile on my face and a spring in my step. My friend Matt, who had run with me in the hospital, joined me at mile 20 both to help me finish and for safety reasons. Still, towards the end, those dark thoughts of slowing down started creeping in. There was certainly a time where there were two competing thoughts: 1) as long as I finish everything will be fine and everyone will be proud 2) I put off brain surgery to run this marathon, this story can only end with a Boston qualifier. Between miles 23 and 24, I saw the only person that I had no clue would be there, my physical therapist. Heidi. She had come out to cheer, and ran with me saying, “You’re going to qualify for Boston.” The thoughts didn’t compete anymore after that and the finish line was just a matter of waiting. I finished at 3:08 with just over 2 minutes to spare. Turning into the crowd at the finish line, I got them cheering for me when I screamed “Come on people, I’m finishing a marathon here.” One guy audibly said, “Wow, this guy really wants it.” I finished with a smile on my face and enough energy to keep shouting and singing for over an hour. My wife had given me the right set of headphones at mile 11, and the last song that played as I was crossing the finish line was a song entitled “Valio La Pena,” it was worth it.

Coincidentally, shortly after the race my friend Victoria came up wearing a Boston shirt (have to wonder what she would have done if I hadn’t qualified). She became the 8th person to tell me they knew someone who had been victim to an astrocytoma. They had received a surgery 20 years previous and were back to their old self with no more problems than a droopy eye when tired. A day filled with a long haul of training and lots of support, ended with success and good news. I hoped it held as a parable of my life.

Valio La Pena.

The Lion's Share

The Texas Tour concluded in Houston where the Ultimate support continued. The Houston Ultimate community has an annual tournament every year which they dedicate to a different charity. As luck would have it, its 8th incarnation was going to be filled with 8 teams, each one named after one of the 8 distinct letters in my two names. The funds would be dedicated 75% to the Livestrong Foundation and 25% to help my family with medical costs. VC Ultimate had once again sponsored the tournament as they had the one in Austin, and the Livestrong Foundation sent several things as well. Having run several tournaments myself, I both donated some left over gear and gave away stuff to random people I met throughout the day. This was done as I rotated playing part a few points with each of the teams. I had actually planned to not play since the marathon was only a week away, but I couldn’t resist the urges to be part of this community and to play Ultimate one more time.

There were some critical differences between Austin and Houston. At Austin, I had known nearly everyone and the tournament had been explicitly for me which lent itself to some entertaining, if not embarrassing, heckling. Houston was mostly against Cancer, with one of the chief organizers being a cancer researcher. The cheers there were explicitly anti-cancer, cries of “Cancer Sucks” and “Fuck Cancer” filling the air every so often. There was an edge that hadn’t really come across from friends. It created a refreshing quality to so openly blast this ‘disease’ which had, without many symptoms, caused such disruption in my life. It was also easier to explicitly ask people to donate to this tournament because the Livestrong Foundation was a great organization by itself and it had helped me as well.

There were many memorable moments during that day: a high school student meeting me for the first time taking me to the side and passionately pleading with God to heal me, either at Duke or in whatever way He saw fit; a drunk friend with a background in cancer who, as we talked about my diagnosis, said that “in the long term, you’re probably fucked.” This was finally the day that we told Kiana about my going to Duke to do the surgery. We’d put it off both because we didn’t know how to approach it, and because for children what is a short time to us is forever to them. She knew I was sick (daddy has a booboo in his left temporal lobe), and that this was what was stopping me from driving; she could even point out the tumor on the MRI pictures. However, during the middle of the tournament, since my playing was very inconsistent to anything she’d previously watched, she asked “Why are we here?” I explained it as best as I could and when I referenced the biopsy and hospital stay from 3 months before, she stated without hesitation: “You don’t have to worry about anything from then Daddy, that was a long time ago.” I continued to explain things to her as well as I could but after a while she withdrew and shut down, clearly scared (when telling a friend this story later, he said that was more than understandable as he was a little bit scared as well). Being the cause of my wife and daughter’s fears was not what I had hoped to be.

I thoroughly appreciated the Houston Community’s effort and kindness, but it was weird as I continued being a charity case. The Toronto Ultimate Community who had also dedicated their annual charity tournament to me (I’d been to Toronto once!); the UT women’s team that had announced their first annual tournament would give a small percentage of the proceeds to help with my brain cancer treatment. I had emailed both of those communities and told them they could find a more worthwhile charity but they both rebuffed my effort. While it was certainly true that never once in my entire adult life had I worried so much about bills, it still didn’t feel right (this was assuming everything went relatively well at Duke; if things didn’t…). Even in this state, there were people who were in much worse shape than I was. While in comparison to my medical bills it was a fraction of the cost, I was going to the Caribbean before going to brain surgery so that my wife and I could have a lull before the storm. While more people get to travel than get my type of brain cancer, most human beings never get to travel far outside of where they are born. I was keenly aware of this as many of the people I’d grown up next to were still in that same neighborhood. I’d hesitated on even traveling to the Caribbean because of how it would look to all the people who had donated money for my medical bills but I wanted the time to spend with my wife away from it all and anyone who didn’t understand that… could have their money back.

Struggling with these ideas I shared it with a few friends. Their responses were very intriguing, ranging from brilliant to downright silly. One reminded me that over the course of my life I’d raised tens of thousands of dollars for various charities. This was, of course, absurd since I hadn’t raised a single one of those in case something went wrong with my life. Another said that’s what friends are for; this idea was even sillier: friends are for enjoying the pleasure of their company and I’d gotten the privilege of some great ones. Perhaps the only answer that was semi-acceptable to me was the one that said: these are people who love you and wish you weren’t going through this. This is the only way that they know how to help right now and you would do that for them. Don’t let people not have a chance to love you; you know you love them back.

Another friend said something similar but used a choice of words that stung: “We’re just hoping between your insurance and these events that we can take care of the lion’s share of your bills.” I am a Leo, a Leon, and my high school mascot was the lion. The lion was the animal I’d most related to so when they said an expression which I use all the time but I rarely hear, it echoed unpleasantly. In doing the Lion’s share, they were doing my share; they were taking care of the things I was supposed to take care of.

I finally found a way to make some piece with it by passing it forward almost immediately. Those people who were less fortunate than me started receiving a percentage of each of the help that I got. When someone forwarded me something from a friend or put up a facebook status about a cause, I donated to almost all of them. Even if everything went wrong at Duke, I wanted to share some of the goodwill I had gotten before I knew how Duke had gone. I was also nervous about if this would bother some of the people who had helped, but this lion also wanted to share when he’d been given so much.

Tuesday, March 1, 2011

All My Exes

A few days after the wedding, I embarked on a similar tour of Texas I had in Calfornia. I’d lived there for 15 of my 30 years in four various places from 8 to 18 and 25 to 30. Meeting my wife, having my daughter, graduating high school, learning to speak English were just a few of the milestones I had reached in the Lone Star State and I set out on a 4 day, 5 city tour.

If I had thought California had been spent commuting I was wrong, Texas was much bigger but it was also worth it. The range of people I saw went from two friends from Junior High I hadn’t seen in 17 years to family members that knew me from birth (some adults themselves, two others cousins that had been born 2 and 3 weeks respectively before me). There were memories of me as an 8 year old ESL student who couldn’t speak English but still helped out around the 3rd grade classroom. There were memories of the guy who always seemed a bit too big for his britches but who was somehow still likeable. I saw a convicted friend whose sentence I had tried to get lowered by testifying at their trial. Another person commented on the fact I’d been there during a hard time at work, and another that I helped tutored them. I had been a pastor for a long time in my life and this tour was actually the first time I made peace with the fact that I had not continued in that profession. There were people there who well predated that career and people who well post dated it who finally revealed to me that I’d had a helpful streak both before and after that. I had honestly thought I’d failed at life when I didn’t stay a pastor and they gave me comfort that I had been able to continue to connect with people at many levels, including perhaps a spiritual one without having to remain in that profession.

Luckily there were enough friends there who also made fun of the time I’d passed gas very loudly in the middle of class or when I’d fallen out of a tree in the middle hide and seek. There were family members there who reminded me that they spent my childhood making fun of the fact that my head was not proportional to my body (too big, something that one could argue is still true in more ways than one). These stories and the ones about me being annoying were always my favorite; having cancer was no reason to start praising me but we could continue with the heckling. Trading juvenile jokes made it a lot easier to deal with than the praise remarks which while well intentioned and well received, at times felt like I was watching my own funeral.

The great variety of friends continued to make me laugh at my life: there was one point where an ultimate pot smoking hippie type was sitting across from a Seventh-day Adventist whose wedding had been vegan and who’d never drank caffeine. PH’ds and high school drop outs, black, white, brown, and yellow, hard core Republicans and Democrats; devout atheists and Christians, even a couple of my exgirlfriends showed up (keep in mind these are from high school); whatever life I’d lived had led me to some very cool but very diverse people. My mom and grandparents were on that trip; my grandfather, in his 80’s, gave me a good long talk about not being afraid of death (he’d put so much energy into it that I didn’t have the heart to tell him I wasn’t and just thanked him for it).

In the end, I just kept thinking that there wasn’t any one of those relationships I’d trade in order to avoid brain cancer. Obviously that wasn’t an option but I was well aware that the guy going into the surgery wasn’t going to be the one coming out. I didn’t know how minor or major the changes would be but the guy going in adored these people.

Hot, Cold, Just Right

After my brother left, I had the honor of being an usher at a wedding. I’d been a groomsman several times and the best man at a wedding but never an usher. I kept joking through the weekend that I had only agreed to do it because I thought they’d asked to me to come as Usher and I even had my big sunglasses and bling prepared.

This ended up being, in one particular sense, my favorite weekend since the diagnosis. At the rehearsal dinner, my condition didn’t come up once. At the wedding where I met lots of people and took hot girls (like my wife), some little girls and some elderly classy ladies all out to the dance floor, it was a great time. I got to be witty, charming, intelligent… and people said things like: you have such a great smile, it was awesome hanging out with you, good meeting you etc. These were remarks that I’d gotten frankly since I was a child but I had semi retreated in the last couple of months from meeting people. Every time I met someone it appeared to be around good friends who caringly asked about what was going on but it felt like it caused the people who were meeting me to see me through the prism of the cancer patient. They all loved how positive I was etc but I wanted to be the guy who was all those positive things period, not the guy who was all of those things even though he had cancer.My wife tore up the dance floor that night and came home the happiest (and most exhausted) I’d seen her in a while. It was a great time and I was on cloud nine but then my mind went to a dark place.

See, I grew up with mineral stained teeth; they had these big brown spots on them and when I was 25, the only time I had a high paying job and money to blow through, I spent a few thousand dollars in order to put in caps over the teeth so that I’d have a smile I was comfortable in; I’d always smiled but incredibly self consciously. They didn’t reshape my teeth, they didn’t even change the color per se because they weren’t all capped and the new ones matched the ones that didn’t have stains. I’d gotten 5 years of smiling without hesitation about making an impression. What does that have to do with anything you might ask? Well, in less than a month I’d have a gigantic scar on the side of my head and that would invariably be my first impression. Not only would I likely have neurological ‘scars’ but I wouldn’t be spared what many cancer patients are, having to show their scars. People who had breasts, colons, kidneys etc removed had very private scars. Mine was going to be on my head and like my teeth had been for 25 years, now my scar would be something to overcome on first impressions. It wasn’t anyone’s fault but humans are conditioned to notice things like that, odd noses, lazy eyes, whatever looks different about the face. Even the best of people register it…the universe had only given me 5 years of letting my personality over shine physical deformities. That was one of less than a handful of nights that I fell asleep crying; call it vanity but a childhood full of memories of being different would tell you otherwise.

The day after the wedding was the Superbowl and we had a great party that I had organized at someone else’s house. All the people there were good friends and most were up date on all that had gone so almost no questions were asked. It was great to be able to put together squares, make infantile jokes at people, throw things at each other. The longer this process dragged out the more I realized what great people I’d surrounded myself with. The joke I’ve made for years may have more truth than fiction in it: I could only have good friends because you had to be an incredibly nice and tolerant person to put up with someone like me.

That night I went home and realized that at least until I found my footing, reclaimed whoever “Iram” was going to be that I would need to turn to these people. New people were probably going to be hard to overcome for me and them; medium people had been too impressed with my positive attitude despite cancer; the good friends were the ones who were checking on me and asking about cancer the way they would about anything transient. It was a conversational piece but in the end it defined neither me nor any significant part of our relationship. In the Goldilocks story, they were the right stock of porridge.