Wednesday, December 28, 2011

Forget How To Die

Death is inevitable and the honest truth is that regrets, I’ve had a few but then again too few to mention. Learning lessons from mistakes have been good for me to reflect on. But what you regret and what you learn from may be two different things and as I sit here a few days away from the end of the year in what (I hope) will always be the strangest year of my life. But with some medical appointments coming up, I realize the new beginnings have some good lessons.

Money still matters but probably less than I thought a year ago. I worried about all the medical bills when they were coming in since some of the things I did were considered optional and I was not prepared for a medical emergency of this magnitude but there are more important things than owing money. I follow the health care debate about all types of things but since all of this stuff started, I look at the end of life issues more than is probably wise. My grandmother died of Alzheimers, the same part of the brain that we notice the wear on this tumor will eat at if it grows again (memory and language). That a woman who helped raise me recognized neither me nor her husband of 70 years in the end is not a pleasant memory. There were some serious risks to the surgery and when we had the all-in poker game, a friend who shall remain nameless, took me outside after the poker game and had a very heavy heart to heart conversation how about if he was in my shoes, he would have a euthanasia plan to not be a burden on his family emotionally and financially if he came out with serious complications from the surgery. My little brother lives in Oregon where physician assisted death is legal and Texas where the Futile Law Care exists and it would be less than honest to say I didn’t consider some of that stuff. Nothing was put into place other than a DNR order then but since the divorce, there’s literally a plan in place if this stuff comes back and is an end sentence to where I’ll sell the house and have only supervised visits since I’d be more likely to have a seizure. There was a lot of crying on my part when that was being drawn out.

I notice when I can’t remember phone numbers like I used to or make silly mistakes and wonder if it’s the tumor growing. Some friends remind me that single parenthood is hard and I'm keeping track of more than I ever had and that the memory like other parts of the body can be exhausted from overuse. The first time we did the neuropsychological we did it in 8 hours and I barely blinked. The second time we did it over two 4 hour periods so that exhaustion wouldn't be a factor since it was shortly after the surgery. This time we're doing it the second way per the neuro psychologist's recommendation. I try to suppress a natural frustration that some of the things I was supposed to be watching out for I missed because I was struck by a divorce that I never saw coming and not paying attention to medical and mental details. I can’t understand Kiana's mom’s timing or methodology or even simple things like the fact that in our standard visitation schedule she gets our daughter for most of the Christmas break but isn’t spending it all with her. And I try to balance the fact that I was literally listening and writing before the surgery that she may be the reason I survive, the why and wherefore I’m alive. I wonder in that silly magical thinking if the way I think doesn’t affect whether or not my brain cancer grew or is growing. Attitude has been shown to be a driving force in health but really in brain cancer?

I had never signed up for short term disability and long term disability before this and am no longer eligible but get excited about the fact that my employer just signed up with a new long term care program. Because it’s a new enrollment you can sign up at the initial thing no matter what pre-existing conditions you may have unlike the disability plans. I am and was the guy who loved seeing the wonders of the world ancient, modern and human, has won races, won tournaments and raised money for charities. I get thrilled to see Kiana do a drawing or give me a hug or paint my toenails. But now I am also the guy that gets pumped that if you’re under 35 it’s only $5 a month and that you can take it with you even if you leave the company as long as you keep paying it because that makes the if-this-returns-decision of having to sit there and fade away easier to contemplate because at least you know it’s not costing your family a fortune.

I’d never taken the Livestrong Bracelet off since getting it but did so recently as overwhelmed with fear about whether or not the way I handled my emotions and ideas about dying, cancer and finances had pushed someone I loved away. But the best kind of love accepts your humanity and helps you try to be better at it. And the best people in my life the last year have realized that sometimes the stupid things I say is fear disguised as logic. The Bracelet was back on after a few moments and I wonder if love means anything at all, it’s that big life decisions, crisis and opportunities are a huge cliff to jump off and maybe all you can manage in all good relationships is to accept each other’s humanity and hold hands on the way down.

Balancing going with the flow and living life on purpose is something this is teaching me to improve on (having an almost 5 year old girl that I have most of the time helps with that as well). I sit here and read the anti-cancer books and change my diet and keep exercising, trying to ignore the stated fact that for this particular type of cancer there are no known dietary, lifestyle, genetic or environmental components. I meet with a minister each week from the Job ministries, a guy whose there to pray and help you through hard times, I rarely miss a running workout, I try to pretend like what’s on my mind isn’t on my mind and achieve it most of the time. There are times as I sit here reflecting about these medical appointments that we have to do now more regularly than I initially anticipated. I’ve started to understand some of that survivor’s guilt that some soldier friend’s on mine have about their comrades when people say my father, brother, etc died of it (the most recent one was a teller who noticed the scar and started telling me how her aunt was dying of the same thing and has gone home refusing treatment to wait it out). With that survivor's guilt I wonder if I'd be better or worse with a soldier's wife.

There was on odd thought that a non survivor's relative shared about how cancer cells are the ones that have forgotten how to die. Here’s hoping those cells don't remember they are alive and that the good ones in my brain don’t forget how to live.

Saturday, December 24, 2011

This Year's Love

I hear that holidays are tough for divorced families on the first year from some both recently and some very long ago divorced friends. I’ve heard from some cancer survivors that the holidays are awesome to be with family and friends when cancer gave you some perspective. Which one of these is it for me? Yes, they both are.

Kiana and I have gone to many parties this year, some with just friends where I’m just the guy who makes stupid jokes, others where I’m the guy who qualified for Boston and put off brain cancer surgery to do it, others where I’m Kiana’s dad, a couple where they wonder how I got such horrible dance moves. At each one, without exception, Kiana and I have felt some very great love. Because of obvious reasons, this was the year that we’ve ever sent and received the most holiday cards. We’ve sent them to the typical people plus the many more including a complete stranger who heard the story and donated the last $350 I needed to be on Team Livestrong’s Boston Marathon team (with that said, there are still many participants who haven’t reached their goal). Some of those cards would have come on their own, some were responses to mine. And while I sent one to various doctors, only one responded, my neurologist from Argentina who I’ve come to be a big fan of. I joked with him that” it was good he realized he owed me big time… oh wait.”

At each of those parties, with each of those ingoing and outcoming cards, I’ve realized the fact that despite the unpredictably of the last 12 months and probably tomorrow and forever, it’s good to be here no matter how long I’ve got. Tomorrow is Christmas and tonight Kiana and I will continue the tradition we’ve always had which is to hang up an ornament representing this year’s most important event. Without exception every previous one was purchased. This year, at the Livestrong Party, we made a snowflake which has her favorite color, her mother’s and the Livestrong logo. Like a snowflake, it’s unique and probably wouldn’t stand out to the average observer but we made it together, with some help and material from friends. Symbols are strange things but they give us touchstones.

With that said, I threw one of those symblos away at a friend’s urging. I had accidentally dropped a glass which shattered and broke and I kept the base with it’s jagged ends, thinking that’s all I could ever be, damaged, damaging goods. It was pointed out that was a dumb way to self-identify and as I made that ornament I threw away the other symbol. As the apostle Paul once wrote, prove all things and hold fast to the good.

Susan Poulos (if you want real writing she recently blogged about it all , someone who I’ve definitely come to see as an older sister even more than I ever had, said very early in the process that eventually the attention would fade and thankfully it has. This year’s intensity can’t possibly last with so many interviews and fans and that’s okay. But I hope that I keep parenting with full intention and continue to live on purpose. Even if the end result is simply that my snow flake maybe falls alone into a pile of others and merges into anonymity.
Holidays and the year wrapping up create some perspective. I am glad to be back at my job, glad to see my little girl wake up almost every morning and hope the snowflake continues the tradition of making classy things together. Last year for New Year’s I did nothing because I didn’t know what to look forward to but this year I’m well aware that looking backwards gives me some good things to look forward to.

But while the attention is unsustainable, I pray and hope that some of this year’s love lasts because I think that’s why I’m alive and it’s certainly why I want to keep living.

Thursday, December 15, 2011

What Dreams Are Made Of

This whole year has been ups and downs, with some ups being downs and some downs turning out to be ups. As I go to many of the same holiday parties, it provides some rough perspective. Last year I was at several of the same ones, holding my wife's's hand and Kiana's. This year, I still have Kiana most of the time but my other hand is blank. Last year I wondered whether or not I'd be making it the next year around and last year I thought 2010 was the best year of  marriage. I thought wrong apparently and was in love with an idea of her that maybe didn't exist and apparently she wasn't much in love at all... And as MRI's show up strange things and the suspense sits there again, there are moments I think I miss her but I realize I miss the idea of her because I still can't wrap my mind around this being the reality of her. Yesterday Kiana was playing with some dolls and being their mommy while I was standing outside her door and she whispered to them "I'm never going to leave you or live anywhere except with you. I'll be the best mommy." I hope she keeps that true but I reflect on the fact that even President Obama sat there and didn't realize that it wasn't until his 40's that the parent who was there most of the time was the one who did the parenting and still chased the "dreams of his father."

I really did sleep well through the night all but 2 or 3 nights last year and to this day a few friends suggest it was because it had never hit me. It hit me but I felt comfortable with my life and trusted that even if things didn't go so well that Kiana's mom would be fantastic at figuring it out...that's tougher to see with a woman who leaves her husband when he's not cleared to drive or return to work to go be with the guy whose parents house he stayed at while having brain surgery. I literally am waking up to bad dreams. The dreams these days are so typically symbolic, something I always believed was at best a stretch if not down right silly but in several that have woken me up are where I find something that ends up being very deadly, a monster, a treasure with a virus, a job that ends up being like Tom Cruise in the Firm.

I am still pushing and trying to work on outlets. I took 3 minutes off last year's half marathon time to a 1:22.37 (though oddly last year with a faster time I won my age group and this time I didn't place, see what I mean about ups and downs), I have great friends even though I think the divorce naturally cost a few, I make new playlists to deal with the emotion. I am not even sure I worry about the dying as much as I do the radiation on the brain while trying to be a responsible single parent...that idea is more intimidating than the thought of death, maybe because last year I thought I'd be holding a girls hand I'd held since I was 17 was last year.

I've started looking for a roommate for the reason of needing helping if I get on radiation more than any other. There has even been talk about a schedule where I would do radiation on the Fridays on the weekends Kiana spends with her mom so I get the most recovery time. My doctor is both impressed and tells me to calm down a bit on over planning things like this but a man who is a father from a Hispanic country, Argentina, and I have some good man-to-man moments. But him and I both have the same approach of you plan for the worst and hope for the best.

Single fatherhood is hard. Dealing with cancer diagnosis and medical tests is hard. Training for a marathon is hard. Living off one income is hard. The frank honest truth is that I couldn't do one of those alone and people help with some of them and others with others.

Kiana and I made our Christmas cards last night and we put a quote someone sent me on it: "The best part of life is when your family becomes your friends, and your friends become your family." I am grateful, no matter what's coming down the pipe, that some of that has happened. That's my reality which these days is better than my dreams.

Tuesday, December 6, 2011

Deja Vu and Holiday Traditions

The MRI results were/weren't what we hoped for or expected. It was the first time there appeared to be a shift between two MRI's (without a surgery in between). Two of my doctors argued with each other for 45 minutes about whether there was a shift and that if there was one that it might be scar tissue or cancer growth. Rather than do another one in 3 months we're going to do one shortly after the new year plus another batch of neurological and neuropsychological tests with all of these medical procedures ranging from an hour to 8 hours. If the tests results go a particular way, we'll likely start radiation; if they go another way, we'll likely just monitor it with monthly MRI's for a while and if there is a shift perhaps do radiation then or just east up on monitoring it over time. The Decker Half Marathon is in a few days, there's some Christmas parties around the corner, I'm training for the Livestrong Marathon. Didn't we do all of this before?

Yes but the more things change, the more they stay the same. At some level we're in a similar place except then I was still trying to find doctors because I wanted to handpick them (for a bit this year it seeemed that I would have to find a new neuropsychologist because of a shift in health insurance but then it panned out). There's a girl sleeping next to me though she's 4 not 29 and she's sleeping unphased by it all and this time I am the one awake in the middle of the night. Though to my discredit, Kiana's mom sent some very long emails last year clearly worried and I responded with 2 or 3 line sentences to "ease her fears" though retrospect sure provides that she wasn't sleeping so calmly while I was trying to figure out the "logic" of curing cancer. Not sleeping as calmly this time through with dreams and nightmares taking over my brain that something else may be once again taking over my brain. I talked to Matt, the guy who I did the Hawktober event with, who for a few years now has had a similar "shadow" that they've never figured out what it is and with the "angel" who Livestrong connected me with who has a similar experience but hers ends up needing radiation. The coin tosses with cancer are...less than fun.

A year ago at this time, I was filling out a will for the first time and making sure all paperwork was in order with this life insurance and that health plan to make sure Kiana and her mother were adequately provided for; this year I'm updating it to leave it all to Kiana and to put an executor I trust if things go south. This time I get to drive myself to all of my appointments though perhaps unknowingly, having friends who were there last year, was more helpful than just for the driving.

Kiana said tonight "I still want you and mom together" and "we should do my birthday party at your house not mommy's." If you'd had me bet my life a year ago on that ever having to be mentioned, I would have done as I did, bet it the other way. Another cancer patient today asked how I dealt with my body and my wife all betraying me in such a close time. I am not sure I see it that way, betrayal is too heavy; it's just unhealthy things reproducing and getting in the way of healthy things.

Just sitting and waiting again...wondering whether or not we have to do treatment. I joked last year plenty that it's not the suspense that's killing me... With both the cancer and the divorce, there were people of faith in God and/or humanity willing to help but let's hope we end up better with the first than the second went.

Every year we were married, Kiana's mom and I hung up an ornament representing the most important event of the year. I intend to continue that at some level but I am unclear as to what that is. Is it Duke, single fatherhood, the Boston Marathon (entry recently confirmed)...

Robert Burns wrote that suspense is worse than disappointment. Perhaps it's nothing, just a shadow. Perhaps it's back and while we'll give it radiation, if it's back this fast that is a huge red flag with a possible 12-18 month prognosis with such a quick return. I don't know but if I'm going down, I am going down between hugs to my princess and while actively swinging.

Tuesday, November 29, 2011

Paper Anniversary

A year ago I got diagnosed with a grade 2 diffuse astrocytoma in my left temporal lobe and I barely blinked. Today, coincidentally, I have a follow up with my neurologist to go look at the results of last weeks EEG, MRI and neurological exams and to start talking about the next neuropsychological. The night before the biopsy and before the brain surgery, I slept just fine; in fact I kicked everyone out of the room who looked so worried to get some peace.

But here a year later, the night before just some basic follow up, I've been awake with nightmares all night and blogging here at 3 Am. I have no great theory of dreams other than that they reveal what's on your mind and that's fairly obvious. After the surgery when I had very interrupted sleep due to medication I kept waking up to these pleasant dreams of Kiana, Kiana's mom and I doing things together. Tonight, with no medications to blame, I keep waking up with nightmares of this tumor returning, of having to make the decision of when to tell Kiana's mom, of having to make the decision of what if I have to stop living with my daughter. Kiana's mom previously turned to an attorney who threatened to use my medical conditions to make sure that I would only have supervised visits. At the time and at this time, there are world class doctors who would state that was ridicoulous but it takes only an inkling of common sense to realize that if this returns, there will come a time where I won't be mentally capable and/or seizure prone. If that's my condition that's not who should be with a child. And there is no way to spin or play down the amount of anger I will have at my daughter's mother if I ever have to decide to stop living with my daughter quite a while before my death instead of getting to hold both their hands on my way out.

Still, if that day comes, I am working hard at making sure that these days count with Kiana. We spent a great Thanksgiving together, the one I've been most grateful ever, doing the Turkey Trot race which she finished without walking. Afterwards, we did the 5 mile adult race, and while I only started running races again 2 years ago, it's probably not to my credit that it was the first time I ever did a race pushing a stroller. We came in 2nd place in that division though with that little girl making sure to shout "Go faster daddy: the whole time to most everyone's amusement.

We spent Thanksgiving day at a couple of places where Kiana having a good time was highest priority since it was her friends from her daycare. The rest of the weekend was spent decorating for Christmas with some friends. She's sitting here laying next to me sleeping and I am glad to see that she's sleeping calmly, that her mind is at rest. I don't know the science of good parenting but part of it has to be reducing their nightmares. And there have been exactly zero days when I have medical appointment days when I am not ridicoulously thankful that this tumor has no known genetic ties.
Last Tuesday I did some neurological exams, some work, an EGG, a track workout and an 8:30 PM MRI. Today, I have some work, a meeting with a neurologist, back to work (I take as little time off as I can for sick time to this day in case this ever returns), a track workout and then dinner with some friends who are in from out of town. I am still grateful that while of course the buzz has died down that there are still those around who were very helpful during the process a year ago. Still at dinner tonight this will invariably be a topic of discussion. I always refer to November 4, 2010 as the last normal day of my life. I guess this is the new normal. It used to be that a headache, forgetting something was just whatever but these days I worry more with it. But there's a beautiful little girl asleep in my house and I probably won't get back to sleep so I should go pack a lunch for her. Here's hoping the results at today's exam show that the science of medicine and the Grace of the universe will let me keep doing that.

Friday, November 18, 2011

Known by the Scars

I had hoped that the last blog entry was the end, that somehow I could move on from cancer … Similar to the way I’ve been trying to move on from the divorce. But in the end, there are gigantic parts of life that define you that you have no control over, where and whom you’re born to, weather, and maybe getting brain cancer. And some of those end up being huge parts of your identity in both good and bad senses.

The Life Part II party was well attended with people from every part of my life from elementary school to the last few weeks, friends, family, and a couple of way out towners coming to support me. It was by far the biggest party of my life with about 100 people showing up to the house.

There are friends who have said that I’m brain cancer’s poster child. That’s definitely not a label I would have ever embraced. When I wrote the last entry, I thought it would be the end. I’d pay some penance or whatever the correct label I to the people who had helped and move on to what’s next but cancer, like the scar, may not be what’s next but it’s also not going away. It’s not like they took it all out, we’re just watching to see if it’s growing forever and permanently taking anti-seizure medication.

I keep meaning to watch Harry Potter since I’ve acquired the label the boy who lived, with the scar on his head to prove it. I still haven’t, life as a single dad is hard and busy I’m sure for anyone and I still want to believe I’m invincible so I have continued to do races and train for the marathon. I won that Brain Power 5k and was the lead fundraiser for the event. Meeting other people there who had gone through brain surgery made me realize that some of them who were also “survivors” had much worse scars in physical, mental and medical impairments. The fact that I sometimes forget a few things got to be whining much about very small scars. That Brain Power 5k was the second of 5 personal records, something I’d never achieved even when I was a more serious runner in high school and college. The next 5k I would break my time record at would be the Livestrong one.

I got a haircut which my coworkers disapproved of, a Mohawk at a brain cancer event, called Hawktober. The organizer lost much from his brain surgery including some issues with his speech, a rough thing for a guy who used to be an announcer and 4 years after the surgery, still blogs elegantly but has serious speech impediments. My work was really unhappy about the Mohawk in a professional court setting but let me keep it for a few days. My boss who had originally given me permission backtracked quickly when administration weighed in. It came off and at the end of the day, it was worth it to me.

I still miss my daughter's mother; I still love her. I always have, I always wil.l There were things I said about her that were probably less than appropriate because I was both in love, in shock and angry. The vows say for better or worse, for richer or poorer, in sickness and health; no matter what other things are out, there is no way to spin it she left me at the lowest point of my life on all of those. Still, I wish that both before and after the diagnosis, I had started to work on the things that I intended to work on after the surgery at making the house home and being a better husband and father. Perhaps, perhaps not but then maybe my little girl Kiana would still have both of her parents every day, something that as recently as last night as I was putting her to bed, she talked to me about how she’d recently had dinner with Dre and her mother’s family but that she was still going to “fix you and mommy.” I’ve gone on some dates and like anything else, some have gone well and some have gone poorly but at the end of the day, I need someone who can handle stress, a child, an ex, and a possible cancer return. With that much baggage, I often wonder if that’s not way too much to ask and if I should do this journey the way it is anyway, alone. I hope that maybe, just maybe there’s someone out there who could handle it but then I listen to songs like Ben Harper’s Forever: “Forever seems to be around when things began but forever’s not around when things end.” Of course Harper ended up divorcing the woman who he was married to when he wrote that… Realizing that relationship loss may have been my biggest lost or my biggest mistake, I even attended Livestrong’s Cancer and Relationships class. I was the youngest person in there and everyone else was a lesbian or married couple. It made for a tough evening at some level. I’ve met a girl or two that I think could handle it but I worry. Interestingly enough, the first dates were girls who were there from Part I of Life and I think if I end up with anyone, it will be someone I met after all this.

Perhaps because her mother's gone and I’m raising a child essentially, I am a lot more afraid at doctor’s appointments that are just follow ups than when “she was there.” I’ve even taken the George Clooney bet that I’ll never remarry or have more kids but that may just be the pain talking. My finances are horrible with half of the household income gone and the guy who grew up poor worries about returning there. I am still struggling with sharing that part out of pride but a friend thoroughly reprimanded me and let me know I needed to accept the free entry invite that the Austin Livestrong Marathon had offered. Interestingly, the Livestrong Invite to the Boston Marathon almost went away and then it came back as a paid entry but I signed up anyway because that’s a big chapter to me and in this story. Kiana is coming with me.

Kiana and I took a trip to San Diego where again friends I hadn’t seen in years came out to say hello and to meet her. It was her first flight not as an infant and we loved every minute of it. I had in wishful thinking booked it on our 10th anniversary for 3 but in the end, only two wanted to go. As overwhelming as it is someday, lots of divorced men, have told me how lucky and blessed I am to have the child most of the time, and there’s never been a moment I doubted that.

The Livestrong Bracelet has never come off and it’s almost been a year since I put it on. I still wear Duke, Livestrong Gear and the funny stuff that my friends gave me and on occasion touch the scar, a rough and gentle reminder that while there have been some losses, I got plenty left. I still help out when and how I can on that ultimate community that did so much for me and I am volunteering for things with the Livestrong Marathon because these have become the symbols that helped me stay alive.

But a little time has given me the perspective that I’m not paying penance; I’m paying things fowards. It was other people’s awareness and research which is why I have a chance to be alive and being one of the lucky ones that may beat this abnormal growth. I hope, pray and am trying to work at having it create some abnormal growth in character.

Friday, August 19, 2011

What's Next?

I was sold the risk of brain surgery was worth it because I’ve never been about the past, I’ve always been about what’s next. That’s how I’m trying to approach each day and the long term picture and have some things on the horizon as well as enjoy my day to day. I am going to run Boston next April with Team Livestrong, Kiana and I are taking her first paid flight ever in November to see my friend Keith and the San Diego Zoo.

So what’s next? I’ve repainted the entire house as people told me that was the cheapest way to make your house feel new. The decorations are all new with many of them reminders that I likely just got to beat a cancer that even at my most hopeful, I thought I’d just get time bought on. There probably will not always be that many always up but there will never be a time when there are none up. Some people celebrate or note their andivorcary but that’s just going to be a normal day in my future. But I do have some things to note for anniversaries. On March 3rd of 2012, one year after the brain surgery, I intend to plant a tree to show that life is still growing. The Life Part II party is about a week away where Kiana’s daycare made a banner that incorporated things that have to do with us and with the brain. My friend Lydia who had come to visit me at Duke sent me a hat that says no brainer, something I proudly wear. I still have Egon’s shirt of “It’s not rocket sugery” and Todd’s “I gave him a piece of my mind” both of which I wear regularly. I’ll wear some of those to the party that happens in a few days, “Life Part II” where people from both local and out of town will be there to help me celebrate. There will be people from work, from ultimate, from running, family, high school. I lost the person I considered the most important in my life but even as she was leaving I went down swinging, trying hard to get her to try but I guess I was too little too late. She didn’t want an invitation to the second part of my life but our princess Kiana will be there 12 out of every 14 days and I’m infinitely grateful for that. The party itself will have lots of parts that are for her and her friends. It’s a unique party because it’s neither an adult nor a child party but will have plenty of components for both.

I don’t believe things all happen for a reason but I do think that not having been able to drive taught me to be at home more and appreciate a perspective I’d never lived through or for until I was forced to and that helps me as a single dad. The fact that she left when we were in the spotlight was bad timing in many people’s views (and clearly connected in many of ours) but I think if she’d left at a different time I wouldn’t have had as many friends checking on me and helping me get to the new normals, a brain cancer survivor who now has to learn to raise a little girl mostly by himself, a task that’s unusual but like the marathon, I hope to give it my best and finish whatever my role is no matter how hard it is. Perhaps, learning and accepting how unpredictable life and affection is will prepare me for raising a little girl who has more personality in her pink than I’ve had in my entire life. The first birthday I had after this I got an invitation to race a 5k that raised money for Brain cancer research and I immediately signed up. Sometimes the universe lines up and reminds you on the day you were born that you should be grateful to be alive. I also signed up to raise money for it. I didn’t want to bother too many people since they donated money for my medical bills but I am glad to have raised $600 so far and hope more before the September 10th race.

I wished this story with my entire family living happily ever after, that we took a crisis and made an opportunity to become a better family. Kiana and I are doing that in whatever way we can. But crisis is like a volcano, it can be Pompeii and destroy life or it can be Hawaii and create life. So I am trying to take that approach with my Hawaiann Moon Goddess daughter. But happily ever after is not how it ends sadly and unfortunately. I’ve even accepted that this may be more like the song from Wicked “I don’t know if I’ve been changed for the better but because I knew you I have been changed for good.” I don’t know how far I am away from the happiness nor am I really clear what’s next other than realizing that good people helped me get this far so it can't be that. Happiness is a vague term but I do know that life, well I’ll be ever after it.

Silver Lining and Sequels

Through it all, at the end of the day, I just have tried to find a bright spot. Yes some mental things happen now that never happened before like I call my brother’s each other’s name. I’m well aware that some of these things just sometimes happen to people but they literally started happening to me over night… but when I stop for a second I remember they aren’t that big of a deal. I was told that I would not be able to make memories as well as I used to and that I won’t be able to retrieve them as well. That’s rough at some level but forgetting some of the phases that came right after the surgery gives it an upside. But I started this blog to give myself my own perspective long after this passed and I’m ever more grateful that this and photography are two of my hobbies. I’ve always written down stuff that Kiana says that is unique and that I want to remember and so those hobbies are even more significant now and I make sure to capture at least a picture or 10 of the first time we do something for the first time or for a special time. We’ve done some neat things that I had never done like paint our toenails together and do our make up. We have done things that neither of us had ever done like maintain a garden, make brownies, go to a hair salon, make a big puzzle, decorate and paint a house by putting our handprints all over it as primer. Even the part that hurt the worst, that her mother is now with Dre, I tried to find the silver lining in that at least the new boyfriend isn’t a complete stranger to Kiana’s life.

But with that said I have literally started referring to my Life as life part II. The day after Duke I went with my friends Susan to get the tattoo that we had decided back in November. It was just the lion and the lion cub since the lioness had gone hunting. Susan sat and held my hand through the pain which makes it a good memory instead of a painful one. Perhaps more significantly, we went to lunch at the same place we did a few days after the diagnosis. The first thing she said as she saw me was “The Boy Who Lived” and like Harry Potter I had the scar on my head to prove it. Chapter 1 was that Tattoo. It was 5 and a half hours, longer and more painful that the marathon and the brain surgery had been. Kiana loved it when she saw it though she did say it was great but she wished I’d still gotten mommy on it so that she would come back. If it was only that simple…

Chapter 2 would be a family reunion a few days later. Of course, some of my family is very conservative and religious and offended by the tattoo. And I’m not really the tattoo type but when life throws you a curve ball sometimes you have to change your swing. Plus Kiana likes it now, she’ll like it when she’s older and she’ll be embarrassed when she’s a teenager and I show it off all the time to prove that I’m the cool dad.

Then, I announced a party that I’d been thinking about and entitled it Life Part II with the Yes response being quoted as “This better not be a trilogy.” Life Part II is missing the leading lady for the first part but I hope it’s one of those rare movies where the sequel is better.

Wednesday, August 17, 2011

Minority Status

Duke went as well as could be hoped for? That’s such a strange sentence to write because I walked down halls where I’d once held my wife’s hand and we’d called my little girl every day and now only one of those was happening. Still the MRI said what they hoped for, the brain had refilled in, scar tissue appeared to be minimal, none of the tentacles had grown in any form and the center mass had not grown. My resting heart rate was 52, a little bit worse than the last time but that one was 10 days after the marathon. My anti-seizure medication was going to be reduced to a lower amount than I was currently on but it would still be forever. The MRI’s would be less frequent but again still forever. The complications of the right side of my body having been weaker due to a decreased signal appeared to be back and Duke brags about how their brain cancer survival rate is 18% (vs the 12% nationwide) and it looked like I was going to get to be a part of it.

It was great to be part of that minority. It was relieving and I walked out of that office and just stood and stared at the sky, both relieved and grateful. The appointments finished a little early and so the friend I was going to have dinner with before heading back to the airport would not be there for an hour. I’d forgotten my phone elsewhere so I couldn’t call anyone or say anything. It felt incredibly appropriate and inappropriate that I’d just gotten some gigantic news and I had to absorb it and process it alone. I had actually invited Dre’s parents to a meal that day before. Making that phone call had felt very awkward but I didn’t feel like the sins of the son should be visited upon the parents so I had tried. They had been very polite and declined and said that because of things I had said about their son and because of the private matter going on (oh if it had been a private matter only between the two of us) that they would decline but graciously they wished me luck and pointed out that I would be in their prayers. Well, the prayers and good vibrations and everything else that had been sent twice had now worked twice. I was in the minority that didn’t need radiation but still looked like I’d beat it.

It was getting customary to be a minority in my life that week. A few days earlier a friend had sent me an article that children raised by single fathers are also a huge minority. Only 8% of children under 8 are raised by their fathers away from their mother (as compared to 24 raised by their mother). Most of those are actually not from divorces but from widowhood. Ironic is not the right word.

I told my friends on Facebook that it looked like I would be part of the brain cancer minority and there were lots of “likes” and comments but my favorite one had to be my friend Egon who posted “Would it kill you just once to go along with the crowd?.” A single father to a little girl, the guy who beat brain cancer, and whose job, hobbies and finances were all at risk but then got them back. It was good to be a minority.

That night as I sat on a delayed plane home I again just broke down crying. Supposedly this tumor was near some emotional centers but even if wasn’t I was well aware that I owed my life to many people. I started texting people who had helped build the website for the tournaments, to the people who had organized them, to the people who helped feed me when I couldn’t sleep through the night because my brain was still swollen. I thanked people who had done tiny things like let me help out with something when I couldn’t drive and it still helped me feel useful. I thanked Dre’s parents for having hosted me as the tears just kept pouring down my face. I even sent the ex a text that she was the main reason I survived, something I’ll always hold to be true despite how she walked away from me and her daughter as someone we don’t recognize. I thanked every person except one. I couldn’t get myself to send Dre a text despite the fact that the most significant run during the marathon training, the one who had hugged me first when I broke down crying the first time during the tournament, the one who helped me pursue and sell me on Duke. Call it petty but I am human and while he may have helped saved my life he didn’t have enough of the right type of boundaries to not take advantage of my wife and to compete with me on what I’d most fought to stay alive for. Yeah, they may say that half of all marriages end in divorce but that’s of all marriage. It’s closer to a 1/3 of first time marriages, far smaller for those who made 10 years, and even far smaller for those with kids the age of Kiana. That was the only place that was so hard to be a minority.

After thinking about all of that (the only point where I didn’t cry), I started thanking tons of people who had given me a ride here when I couldn’t drive, who had sent a Christmas card, who had taken me for lunch and the tears flowed again. I am sure for some of them to receive those texts it was cheesy and awkward at best and they may have thought I was going over the top but I really do think everyone of them contributed to saving my life at various levels. I hope everyone who goes through cancer does this but if not I’ll take being the one leper.

Steer by the Stars

As the Duke follow up came closer, I realized that maybe I was having my worse nightmares about cancer come true. When first diagnosed the thing that I talked to the most that night about was the possible emotional, spiritual and financial impact that my dying/vegetabilizing could have on my family. I worried that my daughter would lose all of those resources from having both of her parents daily to only having one’s time, only one of their incomes, and dealing with their loneliness from the other one being gone. Well, this fear came true but it wasn’t cancer that took this away, it was divorce. People say that divorce is only superseded by the death of a spouse; maybe this is true but they have to be pretty close if it reflects my emotions at all. I was pretty heart broken that all the fears I had would still come true in Kiana’s life but that instead of by some random bad luck of the universe, cancer that it was because of her parents mistakes and with something that I am still slowly trying to let go of the anger and hurt, that there was no attempt try to fix the marriage and address her complaint. With all of that said, however, I was grateful at some level to be the parent who would pretty much a daily presence in her life since the divorce decree had her mother essentially taking standard visitation of 1st, 3rd and 5th weekend. My attorney friend JoAnn Torrez, who helped for free due to my medical problems, pointed out that while the legal jargon may be joint legal custody, that I should find comfort that for all practical matters I would be the one raising Kiana. She added that it was clear I had a grateful heart through all of this. A few people would mention like that and I hope it’s true because that’s certainly not the way I felt many days. Many days my heart just felt heavy.

The divorce would get finalized in late July; to stand up for my beliefs the divorce decree stated that I thought this decision would be emotionally, financially and spiritually damaging to our child but that I respected her right to make the decision. It was literally the day before I flew out back to the East Coast for a weekend with friends and then Duke on Monday. The mother friends who were shocked by the fact that the divorce had happened in record time from someone stating how much they loved their husband to them in private and public forms to someone who moved out in the middle of one night without saying anything to anyone; this group of friends were even more shocked that it had occurred without no real fight for custody (I feared then, and still now, that this will eventually just turn into Kramer vs Kramer but if life has taught me anything in the last year it’s that it’s completely unpredictable so no need to live in fear). More than one of those mothers knew that the Duke appointment was literally a few days after the date of the divorce decree and wondered why she hadn’t put it off till at least those results were in. She, as lots of other people knew, that if any of those tentacles or the center mass showed any growth that I would likely have less than 18 months to live. Why hadn’t she waited a week or two more to get divorced they asked and I’m not sure that it’s something I’ll ever be able to wrap my mind around. I did try to adequately represent my new priorities by skipping the court setting for divorce but not just going to work, as if it were “a normal day.” Rather I volunteered at Kiana’s school and helped them set up something they’d been meaning to get around to, making all communication electronic to be more efficient and greener. It was somehow comforting to realize that while my wife was leaving me and signing away the primary right to possession of her time and some of her rights with Kiana that I was trying to make Kiana's school and her life a better place but there was a bit of embarrassment when some of the staff watched me just break down and cry when I realized the love of my life had signed those things and that "love" away.

I kept reading two quotes that day: 1) All of us get lost in the darkness; dreamers learn to steer by the stars. 2) Good friends are like stars; you can’t always see them but you know they are always there. So I knew that for a while, I’d have to dream and steer by good friends and that my life would be lit up by Kiana, my moon goddess, the brightest spot in a dark night. So I cried myself to sleep one last time and then the next day got on a plane to see what the long term prognosis would be and if anything had grown back, hoping that Kiana would be robbed of only one parent and not both back to back.

Tuesday, August 16, 2011

A Maze of Grace

Luckily, the grace kept being amazing. I reached out for help in a way that I never had before in my life (and frankly hope never to need to again). Some friends said they were willing to help but they honestly didn't know how and I had no clue how to direct them. There were some little things like some friends just letting you vent, there was my friends Barbara and Meetesh who showed me some of the things they had done to let their house be more kid friendly for their child as they got to Kiana's age, they also inspired me to put in a pull up bar and told me to pull myself up when feeling bad (in a very short time I really increased how many I could do simply from following their advice). My friend Chad talked me into committing to going to Duke, something I honestly considered walking away from and not knowing what my long term prognosis is was because depressingly I kept wondering why it mattered anymore. Friends from the running group knowing that I worked well with deadlines and commitments would get me to commit to making the running group knowing that my word to them would get me there even if I had no desire to run. A friend of mine Russell from the Ship of Fools sponsored my first 5k, which I would win. Friends from ultimate, high school kids on a team called HIP talked me into playing a tourney with them (which we won), a friend from Vancouver flew me up there to spend the weekend with him. He was also a single father and we traded some stories and ideas. Lonely times were there but it was good to not do them alone.

I was confused about how life had nearly been ripped out of my head and hands in a literal sense and then how much more of it had been ripped out of my head and heart in a far worse sense. But slowly I kept re prioritizing and started doing things that made me be grateful that I was still alive. I made a list of people I had wronged in any significant way and called them to apologize, taking a therapeutic tip from the alcoholics anonymous approach. As the divorce negotiations continued, I let go things that were financially as much as I thought was reasonable and argued for things like having the first Thanksgiving apart with my daughter, the first Christmas apart, her first Easter apart, her first Spring Break. I had tried so hard to get back to my family but my wife has still had left. Still, I tried to grasp firmly that value that family is what gave survival meaning. I got actually all of those without much arguement and gave up some financial stuff figuring money was by far a much smaller thing to argue about. It's odd how growing up poor made being willing to be less financially prepared so stressful after the diagnosis and so easy after the surgery in the divorce conversations.

I got the tattoo that I had decided to get, a lion family redesigned to where now it was only the lion and the lion cub. Several friends would make a similar joke that I eventually would echo, that's how it had to be because the Lioness had gone hunting. The original tattoo artist had moved out of town and the new one that I talked to upon seeing what I wanted redesigned said "Oh it'll be better with just the two anyway." I think she meant that in the design and artistically but it was tough to not absorb it in other ways. I did this on our 10th anniversary and it was heart breaking because every other anniversary we had both taken the day off and spent it together and now I was symbolically and literally getting meaningful things in my life designed where she wasn't there.

But in the symbolic way that I lived I went through that day and dropped off thank you cards for the worker at the Livestrong Foundation and other key individuals around town because they had not only been meaningful to help me survive but stayed there and kept checking after.

Sunday, August 7, 2011

Reprioritizing perception

Emotionally, it was mildly put difficult to just continue to deal with betrayals of huge parts of your identity. There was the person who I considered the closest family member wanting a divorce, the friend who had met more of my family than any other friend and who had also been the friend that named the teams at my hat tourney after some of my family members. This was in addition to me being the nerdy kid whose brain had turned against him. As I let this weigh in on my head my therapist said something as I tried to deal with the emotions about Dre and his girlfriend, "as you know perception is reality and you have to find a way to perceive them where they aren't extra baggage in your head." While I'm sure this may well have been a standard line, the choice of words was ominously magnificent. I'd had a recent surgery in my head to get rid of extra baggage in my head that had a real chance of killing me so I didn't want to put in new baggage that might kill me in its own way.

I don't know whether or not the cancer or the struggles of it had stayed real toKiana's mom. The simple truth is that I didn't simply wear the Livestrong bracelet because the organization was against cancer but because they had helped me individually and so specifically. She would only wear it occasionally saying she'd forgotten that day because it didn't match with her outfit. When she finally moved the stuff she was taking out of our house (painfully to Dre's house), it might have been telling the things that she left at the house: a shirt back I'd brought her back from Duke, the music box I'd gotten her during my tour to California shortly before the surgery (a penguin couple playing side by side since she had always said that we were like penguins mated for life) and the Livestrong Bracelet. Kiana's therapist had also noted that she seemed very disconnected from the fact that we had just gone through a battle with cancer and that we were going through divorce. Friends who had been to our house through this and who had called her reached out to her but very few were able to connect with her. One of the ones who did said she acknowledged that there were mistakes in our relationship and that she wanted to fix some of them but in her new relationship.

To grieve appropriately over both losses of good people, I went through and read the 14 years of correspondence between us. To my huge discredit, I realized that the first few emails she'd sent me after the diagnosis she was pretty panicked and in my trying to keep it together phase I'd not responded appropriately but perhaps in denial of my emotions had simply answered things like that it would be fine. I went through and read the few I'd kept between Dre and I, which interestingly enough the most interaction we'd had was when he was going through his divorce and during the brain cancer stages. I can't say the anger turned off completely or the depression but I wanted to refocus that the present wasn't the only part of my life and that there was a point where they had been very good for me. I thanked them to the air and realized that I'd have to keep working on letting it go because if they worked out we were all stuck with each other as we'd all be a part in Kiana's life.

Then I put that stuff away and I started to do somethings to change my perceptions and get back to my life. I had already constantly worn the Livestrong Bracelet but I kept looking at it more frequently. My badge at work hung on a Duke Lanyard and everyday when I had to waive it in, I'd try to take a second to remember. I put the disc that people had signed at the hat tournament over my office door, I put the plastic brain that my friend Hugh Daschbach had given me at that tournament up on top of my monitor. I hung the gigantic check that people had given me at the Houston tournament up in my house. There was a graphic that had made the Livestrong Logo into an 8 that I contacted the graphic artist and printed it poster size for both my house and my office. The astrocyte stuffed animal that the Imerman Angel connection had sent me hung up in my kitchen. By coincidence or the grace of God, Kiana asked for a Livestrong bracelet of her own but it didn't fit her wrist so she started wearing it on her ankle. I am not sure who taught her to say this but to this day she says that she wears it "because I am happy daddy's alive." A Duke Sticker and a Livestrong Magnet went up in my car. I had a huge success story of life which was that I had stayed alive and I put reminders in so many areas of my life to go "HEY YOU'RE ALIVE!" I put up more decorations of my little girl around the house and around the office. We repainted her room in a color and decorations that she had picked out. I started hanging out with the friends and family who were kind enough to still be cheering even through the awkwardness of divorce. The only decoration I chose that went into Kiana's room was an angel that had engraved on it: friends are angels on earth. And I finally changed the picture in my wallet from one of the three of us to one of Kiana and I holding hands when she was 1 year old. I was alive and I had a lot to live for. That had to be my new perception, my new focus to carve it into my new reality.

Saturday, August 6, 2011

Narrating the Senseless

The old human approach has long said that everything happens for a reason. We've had religions, philosophies, psychology, cults, governments and many many things trying to figure out/dictate that reason. Oddly enough I've always said things happen and we find reasons for them. I'd taken a diagnosis of a cancer that has no known genetic, environmental, dietary or lifestyle components well. A divorce immediately after was hitting me much harder. As I went through my wife's list of complaints, some typical of marriage like the way communication, finances and parenting are approached were typical. Others were fairly unique to our own relationship but at the end of the day, the only major change in the last year was the cancer (and Dre?). I was going to counseling, a divorce support group, church, on the phone and in person conversing far more than I ever had. I had also put Kiana in therapy where sheand I alternated who took Kiana. Kiana's therapists commented to me that Kiana's mother appeared to have compartmentalized the cancer and divorce thing and neither of them seemed like a big deal to her. She also asked me if her mother had abandonment issues. I wasn't aware of any but her father had been in the military and when we were dating in high school she said if I joined the military she would break up with me. I asked her why she had said this after hearing this from Kiana's therapist and she answered flatly that she didn't want to be with someone who could leave her at anytime.

There's various theories to dreams in psychology but the one I subscribe to is that it's the way the mind incorporates that day's narrative into the life one. This became how I tried to narrate the view of my wife leaving. I called the Livestrong Foundation and Imerman Angels and came to find out that divorce immediately after cancer was far more common than I would have imagined. One of the Imerman Counselors said that it drives some couples closer together and others very far apart. I'll never quite make sense of why it had such opposite effects on her and I because it was clear one of us was very interested in making our family a whole lot better and the other one of us was committed to the idea of being true to yourself to pursue your own happiness, two values that while best served together sometimes have to make some compromises to coexist. As I tried to find a narrative to help all this make sense, this was the one I went with, a sentiment made louder when I found out that Dre's previous wife had been raised in foster care and that perhaps this was how Dre approached life, fulfilling his own needs as the rescuer of girls who were emotionally in crisis mode.

As divorce negotiations went on, the cancer kept being a factor. There was a point where her attorney threatened to pursue full custody where I would only have supervised visits due to my medical conditions. She wanted less than half of the medical debt and no liability for any future incidents (this apparently is sometimes ordered by a judge since it would be considered an existing condition that the person knew about when they left). She appeared to be more interested in finances than anything else. This may well have been an echo of the poor way that I had handled the initial diagnosis. After all a huge concern about me dying was how it would affect my daughter and wife financially (call this a fear from growing up poor) and I had too easily dismissed her desire to take Kiana to wonders and worries, a counseling session for children whose parents are going through cancer. In retrospect, I wish she'd pushed harder or just taken her herself. As I tried to make sense of it all, I reached out to two organizations that helped out a lot Livestrong and Imerman. One let me talk to a counselor and the other to a survivor who'd had a similar experience. It was intriguing that that was much much easier to find than someone who had the same astrocystoma diagnosis.

Waking up from surgery had reminded/taught/encouraged the values I now realize I'd rather have. I initially was more flexible about which one of us would have primary custody but was never open to the idea of the 50/50 arrangements not wanting my child to live out of a suitcase. It's funny I was so afraid my family was supposed to have this huge upheaval if I didn't come out as mostly myself from brain surgery and it did shortly after brain surgery but according to her it was because I'd come out exactly the same. The support you get going through divorce is a joke compared to that when going through cancer because in cancer, no one wants you to die but in a divorce plan where one person clearly wants out and one person wants to save a family people a) don't want to be in the middle b) believe in marriage and family and think you should at least try or c) that you do what makes you happy even if makes someone else miserable and you are willing to sacrifice time with your children for it.

People were sad, surprised, encouraged, disappointed, confused as to the fact that I kept holding on for her. But the last thing I'd given her before brain surgery was a card which in hope said, "come grow old along with me, the best in life is yet to be" and the last song I'd listened to was "I want to spend my life with you." Less efficiently, far more excruciatingly I accepted the death of our marriage than I had my death sentence.

I'd gotten my job back (Though as a side note I was making some typing errors like words ending in ign and and being spelled as adn due to those being left right left signals and my left signal still being weaker. I did some typing games to help me get back to at least par on this), I was cleared back to the sports and activities I thought might be gone, I was cleared back to drive and there was a real possibility that I was going to be part of that minority that beats brain cancer (12% nationwide, 18% at Duke) but somehow I was losing the most important part of my life perhaps because I'd never perceived it was in danger till it was too little too late and thus hadn't looked for the best professional to take out the cancerous parts.

As I waited for that significant follow up at Duke, for a while, I kept hoping Shanon would return but realized that wasn't going to happen and just waited for her attorney's draft of the divorce. There had been gallows humor that hadn't gotten me through the cancer and brain surgery waiting stage with positiveness but also with inappropriate jokes. Some of those were told through the divorce stage as well but this forum I'll only repeat those that were connected to all of this
1) Brain cancer messed with your wife's brain more than yours
2) You had brain surgery, qualified for the Boston marathon and it's still not the biggest story of your year.
3) After a night where I kept waiting up from dreams in which things went horrible at Duke and where she had come back to the household, a friend commented well you had really bad nightmares all night long.

Flat Lining

Being on anti anxiety medication was very frustrating but also helpful. While I would only last 3.5 weeks on it before I decided to get off it, it helped me get back on scale. Before that, friends has mentioned that I needed to go to church, go do yoga, get laid, get back to running, get back to ultimate, get drunk, try a new drug, start a new hobby and all types of advice to distract the brain from the problems of the heart. Friends had been worried because I was so far off rhythm that I was suicidal; I wasn't but none of them had ever seen me this down. I had been having nightmares about my wife being gone and waking up after pretty much every sleep cycle. I'd started missing a good chunk of the anti-seizure medication halfway out of lack of motivation and halfway from simply just forgetting. On the nights she had Kiana, me a guy, who had never really drank would take a shot or two of tequila to try to get back to sleep. I all but stopped eating and lost almost 10 pounds where I literally was weighing in at less than the day of the marathon. Let's just say my doctors started to worry about the guy who had come out so fast and well from brain surgery might not have his healing go as well if he wasn't doing the basic stuff much less things like train for a marathon.

It's not that I'd totally given up, I hear that's common and the body goes along with the mind. In fact, there was a single night in which I tried a few of those suggestions: went to my running group, then to my old team Riverside's practice, then over to a friends house where due to the dehydration three or four glasses of wine made me feel tipsy, and then tried a cigarette (it was absolutely disgusting; I can't understand why people do that). One of the girls at this dinner party offered me a 5th option but to my credit (or perhaps lack of confidence who knows), I drove home at that point and realized maybe it was time to get to bed and do so alone. That weekend I also went to church with my neighbors Rick and Laurie where a message talked about how sometimes the blessing in our lives that we expect from parents, spouses end up coming from other places if we would just be open to it for both us and our children if necessary. Friends who echoed that type of message and the medical appointment a few days later for the anti anxiety medication started helping me get back on track.

My affect felt flat, my emotions of various types started missing but for the first time in months I started sleeping halfway through the night. Still, I started running semi regularly, even got a jogging stroller on craigslist. Perhaps by chance or good luck, it was around that time that she filed for divorce, 2 months to the date exactly after the brain surgery, a point where she was why I was trying to survive. I think the time around the surgery we had both realized there were things we needed to address and I came back from survival wanting to change them and she came back wanting to be away from them.

A few days later I would find out she was dating my friend Dre. Her timing and methodology of leaving may have met with the disapproval of some of my friends and family but she had sympathy from all of them and me. This was a high stress time and we're all human at the end of the day and sometimes do things in a poor manner then. As people found out about the Dre factor, people, myself of course included thought he was the biggest jerk ever. This was a guy who had been a friend of mine for years. We both had strong personalities and that had come with some conflict but we'd been in each other's homes. There had been times before the diagnosis where he had been invited to events in my life where no one else but him wasn't family. And after the diagnosis, he was the guy who had named the teams at the hat tourney, the guy who when I had broken down and cried during the thank you was the first one to get up to give me a hug. He was the person whose house I'd ran to when I was discouraged with IT band during the marathon training I had tried twice to run to his house. He'd been at the all in poker game, was one of a handful of people I went out with the night before the marathon. Perhaps, most significantly, he was the guy who had offered up his parents house as a place for my wife and I to stay while I was at Duke since they lived nearby. His parents and mine had both met each other, made meals for each other and each of us less than 2 months before. To this day I still have a picture of our two sets of parents together. He'd come out no North Carolina and met my brothers immediately after brain surgery. He had also called on New Year's eve where my fears of 2011 had made me not celebrate and had tried to get me to come to his New Year's party. Her call would come later and be very comforting and now they were going to be the worst and most painful part of it, far far heavier than the cancer. It would have been one thing if he thought her and I should not be together and was being supportive as a friend but to be dating her crossed so many lines in my both moral compass and social awareness compass. The gut instincts of what I wanted to do were way less than appropriate but going by gut instincts is probably what had gotten them there and so I went to the house of the other friend who had flown from Austin to North Carolina that night.

Well I was already on the anti anxiety medication that night and took a drink or two but let's just say I didn't sleep at all. How could two of the people who had been so tightly tied to helping me get through the diagnosis to the surgery have no concern about the recovery or just about the old codes which we don't violate for a number of reasons? I kept continuing to turn to friends who challenged me to not be pathetic and get up and do it on my own two feet. I never have done that alone but I realized that two of the people who had been very critical through this were no longer available to turn to for help.

Friday, August 5, 2011

Breaking Down

The next few weeks were the scariest of my life. There were plenty of friends, family and medical staff who weren’t happy with my wifeor shocked or disappointed or confused, all echoes of my own emotions. She apparently had started making a list of problems in our marriage dating back to high school and college which she was sharing with people, which frankly were all legitimate but no one could quite understand why she was walking away in this manner or at this timing.

Eventually, a couple of weeks after she left, I would tell her daycare because I wanted them to notice if Kiana was having any weird “side effects” from it. Kiana had apparently told them that mom had left but they had assumed from having interacted with both her and I separately and together with our family unit at school functions that divorce had nothing to do with it. One of the staff thought that the two were staying elsewhere just to give me space to heal and not be overwhelmed by a small child. They were just as confused as I was as the last thing I did on those tours where I visited everyone was give out a picture of our family, my life’s most meaningful thing and the happy hour had been about our dream book, the list of things that two kids had made of what to chase down during life.

Well, the giving space to heal wasn’t true butd I was overwhelmed by the small child and once it started hitting on me that this was a far more dramatic problem than I had initially internalized, I also started panicking. A few friends who thought I’d been putting on a front of bravery about brain cancer were reminded that I don’t have much of a poker face. I started turning to a variety of friends for help with Kiana both because 1) there were lots of things that I had done rarely or not at all that her mom had always done 2) my energy level was still much below my threshold and 4 year olds aren’t just easy to guard.

A few months before, I’d had a seizure and snuck out a hospital to run 8 miles and ran 14 a few days after a brain biopsy. I had gone back to running with less than 2 weeks after a massive brain surgery. It would be over a month after she left before I ran again. While I had problems because of them moving me due to the driving episode, I’d done well at work overall. But with and because I was working so hard to keep it together in front of Kiana, the director of my work department and his supervisor, both sat me down and told me that it was clear that my personal life was affecting my work performance and that if I needed to take some time off that I should immediately or I may well be putting my job in jeopardy. The doctor who had once been tickled to death about my results was now getting concerned about my health. Appropriately enough, I was having tension and heart problems and while the assumption that this was stress related, made some people nervous as I was nowhere near recovered from the surgery itself and the hole in my brain was refilling. My heart being in a different rhytm meant that two critical organs weren’t at their “normal” level. My brain was literally rewiring and both friends and medical staff were concerned that it would rewire around stress and grief. Most of our brains don’t wire as an adult but this is why they tell pregnant women to avoid those things because it could then become part of the hardware of their children.

My wife, in a mode I’d never seen her in, seemed incredibly indifferent about how any of this was affecting me. She made remarks that I can’t imagine saying to anyone I’ve always hated much less someone who I’d shared half my life with like “I don’t give a damn about your medical problems or your medical bills.” My friend Todd, as mild mannered as guys come, sent her a kind email to which she replied, “You don’t know me and you don’t know shit.” In an argument on another day, she stated coldly and flatly “Well I didn’t get brain cancer.” She would add that she’d talked to people who told her how the fact she left was affecting me wasn’t her fault and while I suppose we’re all responsible for our own emotions, I know no human who is an island and has them completely in control. I’d been with this girl for 14 years and I couldn’t recognize her.

I told my neurologist about all that was going on and he suggested that I let Kiana go with her mother or to get a roommate. As much as I hated the thought I tried to make this happen. I tried to call her but she wouldn’t take the call and texted me to turn to my friends and family for whatever I needed. Luckily, life had blessed me with some very good friends and family: people became aware and helped and came over for playdates, to listen and let me vent, to feed me, they came in pairs where one would babysit and the other would go run with me to try to help me reestablish a rhythm, to restore health. But my anxiety and stress levels got so high that I did something by medical recommendation that I never thought I would do, take a prescription without hesitation. I had not taken pain pills for my brain biopsy but now trying to not let my brain rewire incorrectly I accepted a prescription for an anti anxiety medication. I had accepted a death sentence a few months before that now looked that it may be avoided but for the first time in my life, I had to accept that circumstances had overwhelmed my capacity to completely control my emotions. For the first two weeks I was on it, my mother took time off to come and stay with me for two weeks and be a presence in Kiana’s life and mine. My heart breaking had echoed and expanded the cracks into my pride.

Thursday, August 4, 2011


Sadly it was the second workday after my wife left that I had to have my follow up neuropsychological evaluation. Originally we had done one 8 hour tests but because my brain was still “swollen” and my energy levels were lower we split this up into two 4 hour ones. Both because I was shaken up and because I was scared it would skew the results, I announced that my wife had left right at the beginning of the tests, something that’s now noted permanently in a psychological evaluation.

I tried to focus on these two four hour sessions as best as I could both because I wanted to have the results be “valid” and because the first test had been fascinating and I hoped to still be able to find them that interesting. I worked hard at it and they are all mostly short but I’ll never know completely how valid some of the results were as there was no way to turn off my mind from drifting to this new enigma. Both the first psychological and the second one stated that I was distracted. Now you can diagnose me with ADD or you can accept my excuse that the first time I was distracted by trying to figure out the test and the second time I was distracted by life itself.

It was bizarre how the possibility of losing my wife was scaring me more than death and cancer had. I’d always approached life as if I knew I was dying but I had spent every second of the last several years and definitely the last few weeks thinking that when it came, something that I thought had moved up, it would be next to her, holding her hand, fulfilling the old vow of till death do us part, keeping the in sickness in health part. We took a break during the psychological and I sat there and wrote down all the things I’d done wrong during the marriage small or big and tried to find a solution to address them with her. She actually called during the test and I hoped to talk her into just come back home but at the end of the day rationality and logic aren’t the drivers of companionship and emotions. I had thought that 2010 was one of the best year of our marriages until the diagnosis but mainly it was a solitary opinion but where was the better or worse part? And wasn’t it just simply true that our marriage would succeed if we realized that sometimes the better comes through if you stick through the worse part? (Yes I know if you’re reading this you’re starting to wonder if this cancer blog is about to become about my relationship and it’s not but I am trying to process how those two are tied together. I’ve started writing those thoughts separately in a couple of different places addressed to Kiana and her mom, like these writings, make a narrative that helps me deal with it.)

The psychological results would come back about a week later. It had gone very well but there were some shifts and changes both physically and psychologically. The right side of my body was testing weaker, with my right grip being weaker (this may have been true all around as people in my running group could tell that my left leg was carrying me through runs). The shifts in personality were that I was slightly calmer, slightly more impulsive and had slightly higher executive functions. How those three combine I just don’t know and down the lane no one has really noticed any of them except for the calmer one. There had been some memory changes, my reading memory had gone up but my auditory memory had gone down. Everything came out fairly close to where it had previously been but I was told that I would have a harder time both making memories and therefore recalling memories from the time of the surgery forward. I came out mildly retarded in the part of the brain that comes up with unique words that we all know (the ones that have happened to me in real life are abacus, syllabus and totem pole). The tests showed me at an elevated level of depression. I made mistakes that we all see people but that came over night to me with association. When talking about Kiana or her mom I often called them the other’s name. When referring to the surgery I often called it the marathon. How this all works in the brain I don’t know but it has been interesting to have these changes continue and be fairly permanent. My fine finger coordination was down but apparently “unless you’re a crocheter, you’re going to not notice it.”

There was an upside that was very good. My IQ in the first psychological had been in the 93rd percentile. While mostly people who had read the first one thought this was great I had done this earlier in life and they’d always been in the 98 and 99th percentile. This one took me back to the 99th percentile so it was glad to be thinking better now??? The neuropsychologist believed that the tumor’s hyper activity may well have been blocking a variety of things and that removing the tumor was going to help various areas of life. When he said that, it was definitely hard to believe.

The neuropsychologist suggested some therapists and said to go with them because he said therapy and neuropsychological tests are less effective on “highly functioning” people without a very intelligent therapist. I had not gone to any therapy during cancer suspense but I called all those guys the next day.

Backing Out

The next day we shopped for some more things to get around the house and continued to install them. My friend Linda Kudo flew in to give us a hand while I still wasn’t cleared to drive. She thought that I was recovering so well that maybe she didn’t need to come after all and that was nice to hear when I was starting to feel so confused about what I’d fought to stay alive for.

She was there two days and the friends kept coming to help and then the second day after she arrived, My wife and I continued the argument and I didn’t have the energy left so this interaction instead of the long fights where I had hoped that I could talk her into having a matching tattoo or having another child or something where I felt validated about having wanted so bad to be with her, I called it a night and took my daughter to bed. The argument was about to start again and in an adolescent move, I locked the door just trying to get some space. Ironically, my wife had been insisting on space for a few days and in my desire to have some reassurance that coming home to her had been worthwhile, I had failed to do so asking for an hour or two late at night for some validation. It’s sad and ironic how sometimes what a relationship needs ends up being exactly the opposite of what we do.

I woke up a few hours later and she was gone. I thought about calling her right then but more intelligently emailed her asking where she was at 2:00 am or whatever it was. That email was never responded to. I didn’t know what to do.

The next day, Linda helped me do some painting and we hung out with Kiana and it would be till early afternoon before I would mention anything. I kept hoping it was just an emotional outburst and she would calm down and come home since we had some commitments on Sunday with friends but the longer the day dragged out without any response to texts or emails, I couldn’t figure out what to do so I told Linda. It would turn out that she had heard from my friend Dre that they thought we were making house repairs because we were planning on splitting up and selling the house. I’ve never figured out where that perspective came from.

Linda would leave almost a week earlier than she had planned because she thought that our marriage had been on the rocks for a while and she didn’t want to be in the middle of the drama. This wasn’t my perception of it but apparently it was very different than hers who within a few days would state she wanted a divorce. Friends who had seen her a few days before and after Duke and myself were blown away. Susan sat she had talked with her about how she was doing and how we were doing and felt reassured. Dre’s parents had complimented our relationship and the nurses had talked about how it was clear I had affection for her. But obviously whatever language I had tried to communicate it and my own deficiencies in how I handled marriage were more damaging than I had realized. Back to back emergencies were arising.

Wednesday, August 3, 2011

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.

Friday, July 22, 2011

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.

Thursday, July 21, 2011

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