TO is not a cancer

I'm usually not very sensitive to this type of thing, but lately it has become one of my unspoken pet peeves. I'm sick and tired of the cancer analogy/metaphor. So, think a bit before you use it. You just might be offending someone touched very deeply and emotionally by the real thing. And the act of trivializing cancer might just have more serious impact than you think.

I'm a sports fan and I Tivo and watch PTI: Pardon the Interruption on ESPN. I like the show and its mostly rapid-fire format, and I really like Mike Wilbon. I tend to like what he has to say, but if I think about it honestly I mostly like him because he is an unapologetic Chicago-guy, and he is a Northwestern Wildcat to boot. Unfortunately, every time the subject of Dallas Cowboys receiver Terrell Owens is raised, which is often, he uses the cancer analogy (metaphor I suppose). He says, "TO is a cancer" or "TO is a cancer in the locker room" or "TO is a cancer to the team/league/etc".

Enough already. I understand the analogy. The bad attitude or whatever spreads and "diseases" the whole team. Fine. Except its sports. No one is really going to die. You might think you are emotionally involved in the success of the Dallas Cowboys. You might actually be emotionally involved and impacted by the success of the Dallas Cowboys. I can assure you however, that you aren't as emotionally involved in the Cowboys as I am in my son, who has cancer. And cancer, real cancer, is probably going to take his life. And every time someone uses the cancer analogy, it belittles and trivializes the real struggle with this terrible class of diseases. When you equate some trivial negative thing with the cancer that is now not-so-slowly taking over Nathan's body, you have belittled our experiences. You have trivialized Nathan's struggle. You have lowered the urgency with which we talk about cancer and the perception of the seriousness of these diseases in the public debate and awareness.

You may think I'm overly emotional about this. I am. How could I not be? I think I'm right though. Not only does using this all too common analogy/metaphor cause people pain, but it is also harmful in terms of how people view and relate to these diseases. I'm guilty of having done it in the past, before Nathan's cancer. I won't be guilty of it again. Will you?


Beaten, but looking forward to the weekend

Yesterday I felt beaten and tired and sick and sad, but mostly just beaten. It wasn't a surprise that Nathan's disease had progressed. We knew it was likely. We expected it. Susan saw it on the scan. Hearing and reading the report though was a real punch. Susan made a very honest post to CB. She laid it out there. The responses in the guestbook are beautiful and caring. Susan wondered if she had been too "harsh". I re-read it and couldn't see how. The goal isn't to protect those reading, it is to share with family and friends where Nathan and we are. Nathan got worse. He feels better, but he got worse, and he won't get better. We will try to prolong, if we can, the period of time that he feels well and of course the period of time that he is with us. And right now we really don't know how long those periods might be and haven't asked (although I've got some rough estimates in my head and I'm sure Susan does too). So thats the summary, and it just is as harsh as it is. As Julia might say, "It bes what it bes".

So, yeah, emotionally yesterday sucked. We watched a movie last night. It was good to escape. The movie was appropriate for my state of mind. It was Little Miss Sunshine and it explored very serious themes with a lot of humor. It was nice to laugh, but not be immersed in something silly and trivial. Those things are fine and good, but wouldn't have seemed quite right last night. I wasn't sure I would go to sleep. I tried not to slip back into my head after the movie, but that was hard. I felt ill as I sat in bed watching Letterman, but managed to tired and ready for sleep pretty early. I woke up not feeling like I had slept though. I suppose my mind didn't.

There were some good times yesterday too. When Nathan and Julia were littler, probably before his illness, we often had something we called "Daddy jungle gym" time. When I would come upstairs from work we would roughhouse on the floor of the living room or family room. Last night after dinner I roughhoused with the kids for awhile. Nathan wanted me to sit on the floor so he could "run around me". The girls got in on the act. We laughed and had fun.

We are going to have a fun weekend. We will be spending it with Susan's brother and family a few hours north of here in Greeley. The kids will get to play with their cousin and we will have nice adult company. It should be fun for all and I'm looking forward to it.


In hiding

No posts for awhile. I've been in hiding. I've almost been able to pretend that things were okay. We've had some really nice times over the holidays and with a few weeks of no active treatment under our belts. Scan day has roused me from my hiding. I actually started this post a few days ago, but couldn't quite seem to really get to it. Nathan is having his MIBG this morning. I fully expect his disease to have progressed. And I don't expect future treatment to stop its growth completely, but I'm hopefully that our next stab in the dark will at least slow it. Oddly enough, there seems some pressure off the scan itself now. I view it as a tool that will hopefully guide our decision making process some, but I'm not holding my breath all day like usual hoping for good news. Funny thing about low expectations. They make some things easier.

We have had some good times. We had nice holidays. Nathan has been in school. The kids have played hard. Susan and I went out together without kids like a normal couple may do from time to time. I'm working again. We've found a renewed routine and involvement with our church. I can't help but struggle though. I'm less actively focused on the bad things, but they sure do bubble under the surface. I've posted about this before, so I won't belabor it now, but it comes out in all the wrong ways. My fear and my anger burst forth from time to time, and it is mostly directed at disproportionate reactions to normal kid behavior. Poor Julia. She has it so rough in so many ways. She and I seem to have a similar problem. Her angst bubbles up in behavior that mostly involves being whiny or throwing fits. My angst bubbles up in my reaction to her. Its a terrible vicious circle. I try so hard to make it clear how much I love and enjoy her between our fights...but is it enough?

I have something I have to shake. We have basically decided to take it light with treatment for Nathan. We have shifted from hope for long-term survival to hopefully prolonging a period of good quality of life before Nathan's part in this struggle is complete. This is the right decision. We could fight tooth and nail for every extra day, and in doing so we could load those days with pain, illness, time away from home, time in the hospital, and etc. That wouldn't be right for Nathan or the rest of us. I can't help but feel a bit, down deep, like I'm not doing my job. I *should* have hope. I *should* fight until the end for my son. But, I really shouldn't. Some parents in this world have some disdain for slowing the fight for quality of life. I get that. I feel that down deep. And that disdain and their approach is right for them and their families. It isn't for ours. Neither approach is more noble or indicative of more strength. They are just different approaches to an impossible situation. I wish I could make my gut understand what my head does.

I've got to stop yelling at my kids. I've got to find an outlet for my anger and whatever other mess of emotions I've got brewing. I want to make some good memories while I've got all three of my kids here with me.