What are you really angry about?

Today I feel consumed by anger. If you bumped into me on the street and we chatted, you wouldn't know. If you knew me well, you might clue in that something was a bit off. Of course if you have been around me much in the last three years you might not think anything was off at all.

I'm not "mad" right now. I do get mad. When I do I'm often just letting out my anger. I get mad at my kids. Sometimes I get mad at Susan. I get mad at the dog. I get mad at idiot drivers. No. As I write this now I'm not mad. I'm angry. And angry is something much deeper and more insidious. Mad is an outburst. Angry is an emotional state I can't shake.

If I can't shake this anger, why write about it now? Saturday will mark the third anniversary of Nathan's diagnosis. April fools! That is why. I see that date coming on the calendar. It isn't circled in red. I don't have a reminder set on that date in Outlook. It might as well be and I might as well have. It just pops. And each time it pops I chase the same train of thoughts and emotions. It goes something like this...I should be happy. I should be able to celebrate it. After all, three years is a long time for this diagnosis. After all, the 5 year mortality rate is approximately 30%. This is where things start to turn in this chain of thought. Three years? That is kind of pushing five years. The chances of making five years are bad.

Then I do the fucking math (it isn't hard). The math I'm doing doesn't logically apply to Nathan, but I still do the math. I get mad when I chase these thoughts around and my anger gets fueled.

I could go on and on about what I get mad about. I could give you a laundry list of the things that spark my anger. That is what it is like too. It is very much like static electricity. I walk around all day and my anger kicks around building up energy and it has to find that point where it can jump to something else.

I spark and get mad, but what am I really angry about? Is it obvious? The cause is clearly obvious, but I'm not angry that Nathan is sick. I'm angry that life is what it is, and that seems to be a hard thing to get over. At least for me. Susan and I were living outside of the reality of life. We met young. We were happy. We picked a place to live that we liked a lot. We had good jobs and made good money. We bought a house. We got a dog. We started a family. I wouldn't have thought I was naive. I knew that the nature of life was messy, but I guess I didn't expect it to be messy for me. April Fools Day came and it wasn't funny. And all of a sudden life was what it is, messy and hard and a struggle every day. So if I had to boil it all down, I'm angry because my life doesn't match up with some ideal or expectation of life that I didn't even really acknowledge that I had. I'm angry that the reality of my life doesn't match the fantasy that I was living out and expecting to continue.

Now I could be delusional in my little pop-self-psychology analysis here. I think I'm at least on the right track. And I'm so damn mad at myself for being able to recognize at least some of the reality of it all but still unable to deal with it as well as I would like and feel that I should.

Life is messy. Get over it. Give up the fantasy. Embrace the beautiful parts of reality. Love is real and beautiful. Love cannot be fantasy. Accept the love. And give it back. Revel in it.


A Statistic

In "A Statistic" on Body Count's 1992 Cop Killer album, Ice-T tells us that, "At this moment there are more black males in prison than in college".

Statistics can be dangerous and manipulative and if you want to fight with me on this I'm sure you can throw this back in my face. Here is my statistic though. Think what you want about it.

In 2002 more children died from malignant neoplasms in the United States than people (adult or child) died from terrorist attacks world-wide in 2004.

I got my data from the CDC's National Vital Statistics Report on Leading causes of death for 2002 and from a 2005 Washington Post article on the release of global terrorism statistics by the National Counterterrorism Center (NCTC). I used 2002 and 2004 because in my quick search those seemed to be the most recent available data. I did not pick the years because the data supports how I would like people to think about this.

I'm also acutely aware of the danger of putting forth numbers as the primary decision point for making decisions like government funding, where you should donate charitably, how to prioritize legislation, and etc. If this is solely a numbers game then sick kids get left in the cold. So I'm clearly a hypocrite and I want to manipulate you with my numbers and then tell you to ignore all other numbers. So be it.

The next numbers I want to dig up relate to how much money our government spends yearly fighting their "War on Terror" versus how much they allocate to pediatric cancer research.


And how is your kid's immune system today?

From an email from one of Nathan's doctors yesterday:
PHA shows normal immune function.
That is pretty cool. Really it isn't something we were terribly worried about. It means we can stop the weekly antibiotics to protect his lungs from infection. I can't say definitevly that my PHA would show normal immune function. Can you?

Serviceable Big Man

I wanted to spend more time on this (common theme in everything I attempt these days) but I'm just not finding it so I'll stick with half-assing things. I'm a big basketball fan and like all fans have been watching the tournament (although contrary to popular belief the tournament is now over). So I'm watching some known team play one of the unknowns. In this case there was no "Cinderella" in the works, just a good but undermanned team playing tough but not going to win against a power conference squad. One of the smaller team's big men pulled down a rebound and the announcer says, "So and so sure is a serviceable big man". What a compliment, huh? As I have thought about that over the last week it has become a metaphor for me. I realize that I'm a "serviceable big man". There are a lot of things that I do just fine. I do them fine because I have natural advantages. My size is my upbringing, my socio-economic status, my education, the support I get from the ones I love, etc. There are a lot of things I spread my time across. And I don't excel at any of them. Am I better than average? Hell yeah. I'm playing D-I, baby. Can I hang with the true big boys though? No.

I'm a serviceable big man.


Where we choose to live

This has to be quick. It is Saturday and I'm supposed to be working. This is a big deal because when I work on a weekend Susan has to work too. I haven't posted here for a bit but I have a couple of posts knocking around my head. I feel like I won't be productive if I don't get something written out here. Spoiler: This post ends on a bit of a morbid tone.

So I got to spend quite a bit of time with one of my closest friends last weekend and as we were driving somewhere he says, "I don't know why I don't spend more time with the people I love". The context was that aside from his nuclear family, most of his dearest and closest friends live far away. This is something I've struggled with. I'm working actively to make seeing family and my close friends a higher priority. It is tough financially and from an effort and planning standpoint and while I wouldn't say I was failing, I wouldn't say I was succeeding either.

This raises a bigger question for me which is, "Why do we choose to live where we do?". I won't do a lot of history, but Susan and I lived in Northern Virginia when we met and married. We say we felt a lot of "push" factors from there and that is true, although I think they may have been more internal and about us than about the place than we usually talk in terms of, but perhaps that is a post for another day. We chose the Springs for a variety of reasons. We felt a strong pull to be close to one of our sets of parents, but at the time thought that if we did that it would probably be it and we wouldn't ever try somewhere else just for us, but that if we went somewhere just for us now that we would have enough of a pull perhaps to move us nearer our parents in the future. Did that make sense? I like the Springs a lot. I have no roots here other the ones I'll explain in the next paragraph. Susan has some really great friends here. After roughly eight years here I have some people that I think could possibly be on the fringe/verge of becoming good friends. We have the church now and I'm attached to Susan having the choir because she loves it so much.

We aren't and haven't seriously talked about moving for a long time, so please don't think that is what I'm getting at here, but in general I can easily say that I would like to live close to my parents. I would also like to live close to Susan's parents. We can't have both, but we could choose to have one. There are a bunch of reasons that moving is hard for everyone and we have those like all people do. Here is where cancer comes in though. We have a bunch of additional reasons that moving would be hard. We really like and respect and have a great working relationship with Nathan's doctors here. Now there are good doctors in lots of places, but we have heard a lot of horror stories about pediatric oncologists in smaller communities and even in communities comparable in size to the Springs. I don't want to give up having doctors and a clinic close that we are comfortable with, and just as importantly that Nathan is comfortable and at home with. There is also the general stress factor. Nathan is in a great place healthwise, but there is an underlying stress that is inescapable for any cancer family. There would be benefits to being close to parents/grandparents though. There are the clear emotional benefits to everyone. There is also the selfish benefits that are one of my biggest regrets for not having moved close to family. Those are the ability to have built-in help and a means to escape with Susan. We have friends that would watch our kids. We have people that truly love our kids and us here, but it isn't the same as having parents to drop your children off with and say, "We really need/want to get out of town alone for a weekend". So there are those obvious benefits, but I doubt I could handle well the additional stress of even thinking seriously/considering a move. I barely hold on as it is (that is another post I'm working on).

So here is where things turn horribly morbid, but I can't help but think about them. If we stay here the more likely it is that we will lose Nathan while we live here. I don't pretend to know what it would be like to lose a child and how I would feel and react, but I don't know if I could leave here very easily if we lost Nathan here. I doubt I would have much attachment to a physical resting place, but I wouldn't rule that out. Right now all of my children's' lives have been lived here. All of my memories of my children involve Colorado Springs being our home. In some ways my perception of my family only exists here in the Springs. If I lost any of them here now, I'm not sure I could leave. Intellectually I know that the people I love live in my heart and I take them with me everywhere, but emotionally they feel tied here to this state. To this city. To this house.


St. Baldrick's

We spent a great weekend in Chicago. The main reason we went was to spend time with family and friends but the reason we picked this particular weekend was that our friend Matt was shaving his head to raise money for pediatric cancer research. St. Baldrick's is a tremendous and I think overlooked event. Kudos to Matt who personally raised over $5,000. Matt does this because he believes it is a worthy cause, but he also does it as a way to show support for Nathan and our family when at times I know our friends feel like they can't really help us. Thanks, Matt.

The event that Matt participates in is at Fado Irish Pub in downtown Chicago and by the time everything is counted they think they will top $200,000. It is a great time. Nathan particularly enjoyed the event and even got to help shave Matt's head. He had a great time. I think on some level he knew he was someplace that he normally wouldn't be allowed to be in. The kids got to sit and drink pop and munch on bar food. The event organizers were happy to have a cancer kid in the house and all of Matt's friends that came out really made the kids feel comfortable while they were there.

Special thanks to Matt and everyone who gave to his fundraising.


Is "ordinary" good enough?

We have strived to live as "normal" and "ordinary" a life as possible while fighting Nathan's cancer. I think we aim for the "ordinary" target for a variety of reasons. Some of them are selfish. I need to do normal, everyday things so that life isn't always about Nathan's illness. I think there is a solid argument too that Nathan, Julia, Lauren, Susan, and me deserve a bit of normalcy. And while there is so much ugly extra stuff going on like surgeries, chemo, radiation, bone marrow transplant, "pain", scans, bone marrow aspirations, and etc, it almost seems noble to say, "Through it all we just try to provide Nathan and our family with as normal a daily routine as possible".

Is ordinary good enough though? As much as we may strive for ordinary and normal, Nathan is special. Sure, all kids are special. Nathan is extra special. There is no getting around it. More than that though, do we owe him more? Specifically, if he may not be with us very long, should we not strive to provide him with an extraordinary life experience and not an ordinary one?

I think we strike the right balance and I think it is right to fall on the side of "ordinary" because I just don't think I could handle focusing on doing more or providing more to Nathan than we normally would because to do so would be not only to acknowledge that he may die from this illness, but it would feel in a way like giving up hope that he may not. I'm not ready to live like he is dying, because he isn't. But sometimes I can't help but feel like maybe we should be giving him more because he may be.


Three Months

You should read my wife Susan's Living my life three months at a time post at her blog. Scan cycles are hell and the pressure the short interval puts on a person and family are insane. Susan captured it well.



We were in The Big Apple this past week for 3-month scans and a chance to sit down and plan strategy with Nathan's doctors at MSKCC. Nathan is in a "second remission" after achieving "no evidence of disease" (NED) status and a soft-tissue only recurrence. We are primarily waiting for a Phase I clinical trial to open that has a focus on preventing multiple recurrence, which is common in aggressive cancers like neuroblastoma. One of the points the doctor touched on is that with new therapies more and more children that have recurrence are achieving a second remission, but with many of those having a second recurrence, there is obviously so much need for additional therapy. Susan began asking about the interim treatment Nathan is receiving (chemo followed by a biologically based therapy) and the doctor explained that they are currently treating three (yep, only three) children (including Nathan) in Nathan's situation with a soft-tissue only recurrence. The rest of their recurrent patients have bone marrow involvement. We have always felt good about the fact that Nathan had soft-tissue only recurrence that could be treated surgically, but hearing that they are only treating three patients with this scenario really hit home how much we will forever be flying blind with Nathan's care. MSKCC claims that they see 80 new neuroblastoma patients each year and this number represents more patients than any other facility in the country. And out of all of those patients, Nathan is one of three with a similar status.

There are pluses and minuses to each facility and philosophy out there regarding neuroblastoma treatment and sometimes parents can get pretty heated over discussing the relative merits of different facilities and therapies. I explained to a friend we saw over dinner in NYC that if we are going to be having decisions about Nathan's care based on what amounts to instinct or gut feelings, then I want those decisions made be people who see this disease exclusively, hoping that they have a better instinct regarding its behavior. There may be other facilities that have multiple kids in second remission after a soft-tissue only recurrence, but there can't be many and since Nathan has had continuing care at MSKCC, there is nowhere else where they have kids in similar circumstances that have had similar past treatment.


How Does it Feel?

What seems like ages ago (December 2003) for this first time since his diagnosis Nathan had "clean" scans. I felt a weight lifted from my shoulders that day and cried tears of relief as I pushed Nathan to our temporary apartment in NY on the way home from the hospital. Since then we've had several sets of scans. Most of them were clean. In June they showed relapse. This past December they were "clean" again. I occasionally read another cancer dad's journal. He writes a journal about his daughter and her treatment. It isn't much like this one has started. It is more like what Susan does at Nathan's CaringBridge site. He described in one post about the great joy and happiness he and his wife feel every time they get good scan results. It isn't like that for me. Sometimes I wish it were. We heard today that Nathan's latest scan results (at least the prelims anyway, things could change) are "clear". There is relief, yes, but it isn't the great weight lifting.

I think it is like taking two steps backward and one step forward. There is no way the good feelings balance the amount of stress and apprehension that goes into it all, and that is a real shame.

I sure wish I felt like celebrating.