Mitch Carlson
"Mitch Carlson is a brain tumor survivor."
The hardest thing for me to deal with is, it’s been so up and down. I mean, it’s nothing short of amazing for me to come out of the surgery I had with no deficiencies. And then to go into expecting a second surgery date, and all of a sudden, “Oh, the tumor has re-grown completely and we’re gonna have to do something else.” You know, nothing goes down the mainstream. If I look at the odds of the type of tumor, it's forty million to one of getting that type of tumor, and then having the tumor start growing again.
You can’t do radiation to your head twice. It causes enough brain damage, where your brain can’t handle it twice. We won’t know the extent of brain damage for five years. So that’s something I have to look forward to. Most other patients can go in and say, “Look, the tumor is gone.” Well, in my case, that’s never gonna be the case. It will always be there. And so the question really is, has it grown any since the last time? You know, it could be a year from now, it could be twenty years from now when it grows again.
I had my last radiation treatment about six months ago, but it was really the last appointment I had with my doctors about three weeks ago where we started talking about the future. Before that, it was, “I have this very specific problem. What are we going to do about it?” Then my wife asked him, “Well, what do we do next?” And he said, “Well, you get on with your life.” I think when he first said it, I didn’t understand the impact of what that really meant. And I think it took some time to really understand that. And since that time, I’ve spent a lot of time preparing for the future. And it’s hard.
Once we started to talk about the future, where I could see what the limits were going to be, that was very liberating. And it forced my wife and I to sit down and think about, what are the things we really want to do together while I am physically able to do it? We made a list of things to do. She made her list and I made mine, and we compared them, and now we’re in the process of prioritizing those things. If we get five years down the road and everything’s checked off, we’ll have had a great time and we can make a new list. And that’s been a great thing. It’s also forced us to talk about a lot of things, just in the course of making that list of what’s important to each of us. There’s a time compression, because there’s a limited amount of time, and so we need to do the things we want to do.
Both after the surgery and after the radiation, my biggest problem has been fatigue, and that’s going away now. When I was starting through the radiation treatments, that was one of the things that they told me was gonna happen. What I really wasn’t prepared for was the depth of fatigue. It’s hard to describe. I’ve been tired before and that’s not it, you know. Tired is actually a good thing. But with the fatigue, I mean, it’s just to your core. I just can’t physically do things, and I wasn’t prepared for the extent of that.
I think for the first couple of weeks or the first month after radiation, it probably got worse. I had headaches during the radiation treatment, probably caused by brain swelling, and so they gave me decadron, a corticosteroid that is a muscle-wasting drug in and of itself. So not only did I have the fatigue, but my strength was going away.
One of the things that really helped me was lifting weights. I would go into the gym and I’d be incredibly fatigued, and I’d come out, and I’d be very tired, but I wouldn’t be fatigued anymore. It just would kind of magically cure it. And for the next several weeks, anytime I got a little bit fatigued, I would go to the gym and workout and my fatigue would go away. If you can find anything that can cure your fatigue, it’s not hard to motivate yourself to do anything.
Even today, I’ll have a bad day off and on -- headaches and double vision and maybe some balance issues and things like that. Headaches are something that, over the last couple of years at least, I’ve just kind of learned to live with. And so the fact that now I only have a headache once every couple weeks, that’s like things are much better. It’s easy to be happy about that.
I’m certainly not more cautious, and I’ve gone back to doing a lot of the things I’ve done before. I think the biggest change through this whole experience has been my friends and how important they are to me and getting out and doing things with them.
One of the things that’s come out of this is that you can have frank discussions with people that I don’t think you can in any other context. It’s like having the wake and the eulogy while you’re still there to enjoy it. Everybody deals with things like that differently. And some of my close friends don’t know how to talk to me anymore. I deal with things like this through humor. And now they feel open enough with me that they can ask me very personal questions, and I’ll respond to that. I know what my friends think about me and they know what I think about them, and the closeness there has really changed a lot. We’re just more apt to try and do things spur of the moment. It certainly helps set priorities in life.
Initially, there was just a lot of fear. And particularly after the radiation was over, you know, quite a bit of depression, because that’s the first time when I’m not doing something concrete and aggressive. Sitting back waiting, that was a very difficult thing. That was actually at a time when I really didn’t feel good. My fatigue was at its peak and everything seemed uncertain and, it was all I could do to muster myself up off the couch to go do something. And that’s just not me. Emotionally, that was probably the most difficult time.
But since that time, it’s kind of changed. I mean, the surgery is such a big, traumatic, one-time event. It’s just very different than waiting for the date for the second surgery or going through radiation treatments or waiting afterwards. All of those things are just kind of long, drawn-out things, and there’s an awful lot of uncertainty there.
But I think in many ways, there’s no more uncertainty for me than there is for anybody else. I just have something very specific to focus on. And I think I’m learning to deal with that. There’s moments that certainly bring that forward, but I don’t think it’s really fear anymore. I’m not sure it's the right word to describe it, but there’s just so much uncertainty. That’s a little hard to deal with sometimes.
Over the course of this, the tumor and the surgery and the radiation and everything, my relationship with my wife has really become much closer. And not only has it been closer, because we’ve had this common goal of something we had to overcome, but it became much deeper. There were things that we would talk about that I can’t imagine, being my age, that we would have ever talked about had this not happened.
One of the things that a lot of people would tell me is, “Live one day at a time.” And one of the things I found is I can’t do that. I need a longer view than that. Sometimes it was the end of this week or to my next appointment. But I need to look at some point in the future. There has to be a future. And it’s not just today.
Warren Zevon had been on David Letterman, the Letterman Show. And one of the things that Letterman asked him was, “Well, given the circumstances of you being diagnosed with cancer, is there anything you know about living and dying that I don’t know?” And he said, “Well, yeah, enjoy every sandwich.” It’s easy to remember to enjoy the big things, but it’s those little things that turn out to be important. So I think ‘enjoy every sandwich’ is a great mantra to live by. It’s easy to remember to enjoy the trip to Hawaii, but it’s those little things that are really important.
Before the surgery, we wanted to put together a will or update our wills. My wife’s father had died about a year-and-a-half before this, and one of the things we learned in that was what “Do Not Resuscitate” really meant. And it didn’t mean what we thought it meant. They’re still gonna give you a lot of life support and food and all this other stuff. If I’m not gonna survive, that’s not really what I want. And so, we learned a lot about that and how to make sure that our feelings about that were known.
I think the day that my neurosurgeon told me, “You need to get on with your life,” was the day I went from being a brain tumor patient to a brain tumor survivor. It’s taken me months to really kind of sort out what that really means, and I’m not sure I know yet. Getting on with your life is a very simplistic way of saying things really haven’t changed. And you can kind of take and put this thing in a box somewhere and it’s always gonna be there, but you still need to get on with the things that you wanted to do with your life, whether they be personally or professionally. You just have to get on and do the things in your life that are important to you, and do as much as I’m physically able. I’m not sure what survivorship really means. It can mean a lot of different things, but I think it’s gonna be a lifelong experience to find out what it really does mean.
I am Mitch Carlson, I am 42, and I am a brain tumor survivor.
