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.