Back By Popular Demand

Surprisingly, people apparently read the nonsense I write here. And they apparently send me notes when I don't write for a while. I believe I know have more readers than the AJC, my advertising revenue is probably competitive.

So, as we head towards Thanksgiving, instead of doing the obvious and writing about things we should give thanks for, I thought I'd write about the lessons learned over 2 1/2 months with cancer.

1. On Strength & Courage: I was a bit mixed on writing this, but I think it is important--and something that other patients have shared to be the same reaction. Being told you have strength or courage is a tough thing to consume while you're fighting cancer (for some of us). See, we didn't choose this battle, and if we had any option whatsoever, we'd choose not to fight. We've ended up with a multiple choice question that says A) Undergo Treatment B) Die ...there looms firm the C) All of the Above, but we won't go there for now. A) is clearly the only option. We don't make that choice with any kind of strength or courage, we make that choice out of necessity. That being said, being diagnosed is kind of like being drafted. You don't want to go, there's the distinct possibility of dying, you're under someone else's control and while you're there, things are going to be terrible. That doesn't prevent the draftee from getting the medal of honor while he's a soldier, but at any moment he will do whatever possible to come home and return to his regular life. Both stories are about survival first, with the opportunity to serve others in a terrible situation. Many cancer survivors show their strength and courage long after they have taken care of the survival part in order to help others with the disease...those are the folks we both value the most. Right now I just feel like a draftee in the trenches, nothing too glamorous about that.
2. Survival does not necessarily mean a "perfect" outcome. My, and in many cases, our, knee jerk response to cancer is to evaluate a survival rate. In my case it is as good as it gets, about 95% within 5 years. It has taken me some time to realize that survival is only one component to evaluate--quality of life, and the difficulty of getting to "survival" are critical pieces to the survival puzzle. Complications from the disease, the chemo and surgery are likely and long-lasting. Anything from going deaf to never having kids, all on the possibility list, aren't a factor in that 95% which only confirms a beating heart. There's also the possible loss of kidney and/or liver function, which in the long term can definitely affect life expectancy. Survival doesn't mean "everything is going to be okay"--it means you're alive. Certainly reason to celebrate, but be careful not to assume it is the only thing the person cares about.
3. You don't have to be a "rock". We're all human here. For some reason people think they have to "look strong" around a patient, I'm not so sure that's true. There are few things more humbling than finding out someone is crying for you and scared with you. The day of my surgery where I had an entourage of the most beautiful women in the world (my brother included), seeing fear and tears in their eyes was okay and even reassuring. As cards, emails and messages pile up from people whom I've known well to haven't known at all, it helps to remind me that thankfully people aren't all wired like me...pretty much a non-emotional freak. It defies logic that people pray for people they don't know and send cards & gifts to people they barely know. Logically that reminds me that there's something else about us, something that I may not always "get", but that I can see exists.
4. It sucks. Encouraging thoughts only go so far, and I know that positive visualization is good. However, most of the time, you just want people to agree that the whole situation stinks. I'm sure some good will come of it, silver lining and all that...but hey, this sucks. Say it with me. Loud & Proud. It sucks. A lot. When you say it sucks, it helps both of us to share the experience a little more...and helps me to understand that you "get it".
5. Anxiety. For people who are used to managing things in their lives, cancer just tears apart a lot of your norms. Your schedule isn't yours, someone else tells you where to be, when to be there and why. Your future isn't yours, it is a blurry goal...something between what you'd planned on only a few months earlier and the looming worry that you won't get there as you hoped. This anxiety is what survivors talk about...long after the cards stop arriving, the prayers stop being said and the calls stop being made, the survivor is waiting on the next blood test to see if it has come back. That's the hard part, that's what leads people into depression. You just never know when or if it will find you again.
6. Knowledge is a double-edged sword. From what I can tell, Oncologists try to limit your scope of existence to the next battle...not overwhelming you with the war at large. So you learn bits and pieces about your situation as you walk through the field and they become relevant to you over the horizon. The stuff on the other side of your field of vision may kill you, but they don't tell you that right away. They want you to deal with today's battle. The Internet changes that, through other people's experiences, medical journals, etc. you can find out a lot about where you're about to tread...but you know that without knowledge of your specific situation. You don't know where your markers will be, or how big your lymph nodes will be, but you know what will happen if they're too high, or too big. So you think about it, and the complications of that possible battle. And all the scenarios...all before you know what will happen with you. Every test result, every blood test, etc. give you slight indicators and leave you hanging for more information. Everyone has their own breaking point with knowledge. Too much causes unnecessary worry and panic, too little causes poor decision making. It is a careful balance and I'm unsure anyone gets it right. Our fate isn't in our control, and there are many bits of information that will only cause additional anxiety. Sometimes it is okay when we would just rather not know.
7. Communication is hard. Especially for people like me who tend not to communicate and/or don't do it very well. There are quite a few people to reply to and thank for their notes, cookies, prayers and gifts. You're probably one of them. It is overwhelmingly difficult to contact everybody, our days would be consumed with it. Every note has been read, every card has been saved and every cookie shared (or eaten quickly to hide evidence). Close friends & family sometimes don't hear the whole story while a perfect stranger knows intimate details. That's the way this goes...it isn't that we don't want people to know, or that you're somehow less important. Every bit of generosity and thoughtfulness is cherished.
8. Cancer is different. Chemo is different. People are different. My surgery, chemo regimen and my personal reaction are all different from other similar cancer patients, and dramatically different from other types of cancer patients. Before I had cancer I didn't realize this. Cancer was cancer was cancer. Chemo was all the same. In fact, I read a journal about a women with breast cancer's chemo experience and assumed my chemo would be the same. I assumed I'd head in once a month or so, get chemo with friends for 3 hrs, feel crappy for about 12 hrs, then go on with life. Clearly that was not the case...I was very wrong. Her specific type of chemo was very different from mine and therefore her reaction was different from mine. Don't assume because you know this story you know anyone else's...or that you can predict their outcome and say "I knew a guy and he survived." Remember #2 & #4. Respect that their situation, no matter what, is very different from mine.
9. It is okay to ask questions. Even awkward or hard ones. From the folks I've talked to, cancer patients become increasingly pragmatic about their body, their diagnosis and the side effects. Family and friends watching on the sidelines often have questions about big things and small things related to cancer, chemo and the surgery. Believe me, we've gotten used to talking about it. You asking about my surgery isn't nearly as difficult to cope with as having several strangers fondle my genitals for hours trying to diagnose me--yes, gross, but as a point, pragmatic. Neither of us wanted to be there. But it is what it is. You asking about hair loss isn't as strange as looking at myself in the mirror. You asking about how scared I am isn't nearly as difficult as being as scared as I am. For guys my age this is especially relevant...how I found out, why I went to the doctor, how I felt are all very important things and things that guys don't talk about. Information that ultimately could help one of your friends or family self-diagnose a bit earlier and keep their quality of life significantly better through their treatment. Maybe they diagnose a few weeks earlier and avoid chemo. Ask the questions if you're curious. This cancer doubles in size every 14 days. Discovering and treating it two weeks earlier can mean the difference between having a family and not having a family.
10. Writing makes everything look different. Pictures capture a moment in time. Failed marriages can look great on film, you know, everyone is smiling. Nobody is there for a Kodak moment while you're yelling at each other. On the flip side, you tend to write or communicate at emotional highs & lows. Most days are mundane. You feel slightly sick, you're worried about the results of your next blood test and nothing new has happened. SNAFU. But when you feel really sick, or really good, man do you want to tell everyone! Again, having cancer is a bit like being drafted. 98% of the time you're waiting, marching, looking out for the enemy. Occasionally your existence is punctuated by extreme duress or happiness. You get used to being anxious and uncomfortable, you get used to only talking about the shitty situation you're in. The stories that are worth writing home about are the big ones...not the everyday drudgery, the rinse-wash-repeat story of survival. You guys are getting the AP pictures. Most days aren't photo worthy.

So there, a perfect 10. I'm sure I'll come up with some more valuable tidbits of information to share :)
Until then, I'm going to go eat turkey with family and talk about football, politics and economics. My wife will shake her head and ask me to change the topic.
Then next week I'll get this phase of the battle over with. Unsure if I have another battle to fight just over that horizon.