Hey gang,
So it’s been a little while since I’ve posted (real posts, not the Twitter freakout that I didn’t realize was happening) yet again. Many, many things have been happening here in Moondoggieland and as usually happens with me when a lot of stuff is going on, I put off mentioning it until so much has happened that it becomes all awkward and winds up in a long post. So, here’s the long post – grab a drink and get comfortable.
The Health
Since this is a cancer blog, I should get that bit out of the way first, right? Well, I’m just over 4 years and one month post-SCT (Stem Cell Transplant for you newcomers) and still clear. My next PET scan is in October and I’m on the once-a-year schedule at the moment. I’ve had a couple of itchy patches pop up over the past couple of months, but neither one is The Itch, so I’m not too concerned. Eleven more months and we get to use the “R” word! Even better – no more Lhermitte’s and my Raynaud’s only pops up when my hands get really cold. Bonus!
The Job
The job I had when I last posted was wearing me into the ground. Aside from the initial craziness of being the only tech guy in a tech company for awhile there, the “working from home” thing got really old. Sure, the commute was awesome and I got to hang out with Phoebe all day, but when you work at home, you’re always at work. That’s the number one reason I stopped posting to the blog and various forums – when you sit down at the computer that you’ve been working on all day, it’s hard to not continue to work. So I got into a habit where, once work was over, I’d get as far away from my computer as possible. Since I didn’t have any kind of smartphone at the time, it was awful hard to work on my personal stuff. Emails back up, thoughts go unposted, sites fall into disrepair.
Fortunately, I got laid off back in April. Or March. I’ll have to look that up. Anyway, I got to take off a little time to decompress before hunting for another job. I was hoping to get out of the computer field, but the numbers just didn’t fall right for us (more on that in a second). So now I’m in a new web development job, once again learning things as I go (seriously, who uses ColdFusion nowadays?). I’m getting better at both setting expectations and unplugging at the end of the day, the latter made even easier by the fact that I have to get in my car and drive to the job. The commute blows, but the anger built up during the commute is offset by the knowledge that work is safely trapped in my laptop bag and doesn’t need to come out when I get home.
The Economy
The layoff was a real eye-opener for us financially (duh). While we’re not necessarily hurting, we’re also kind of trapped by our house. We initially bought it when we both had good paying jobs and needed room for future expansion. The catch there is, to keep up with the payments, you have to continue having good paying jobs. Often when you switch careers, you’re going to get paid quite a bit less than the career you’re experienced in, so you wind up stuck. If you keep moving up that corporate ladder and don’t want to ever go be a ditch digger or something, there’s no problem. But if you want to hop out of that career track, you start to see just how deep the ruts in that track are.
So now that our eyes have been opened, we’re slowly paring down. We gave IVF a shot and won’t be having kids, so we don’t need the extra rooms in the house. All of this happened a little too late to get the house ready and on the market this year, so we’re going to go through the place top to bottom over the next few months, purging and packing as we go. Then we’ll put the house up for sale in the spring or so. We’re going to find us a nice little cozy place that’ll be easier to clean, maintain and pay for, while at the same time making it easier for Barb and I to be around each other and still do things. Right now, if she wants to watch TV and I need to do something in my office, we’re on different floors of the house. Small will be better.
The Fitness
While health is good on the cancer front, the rest of my body was in sad shape. Even though I played hockey through the ABVD chemo, I had done NO exercise since January of ’06 or so. On top of that, since I worked from home, I didn’t even have to walk out to the car every morning to get to the job. As you can imagine, I chunked up a touch. But what’s 30 or 40 pounds between friends, right? The worst part of the no exercising was that my ankles and knees really started bothering me. The doc said I needed to start moving (surprise, surprise) and right about that time, Barb saw a sign on a warehouse window: “CROSSFIT.”
We started back in May, but missed the month of June, so we’ve been going fairly regularly for two and a half months or so. If you don’t know what Crossfit is, it’s a little hard to explain with words. If you ask me what it is after a WOD (Workout of the Day), my answer will either be “Remember when you were little and used to get beat up for your lunch money?” or “Have you ever been in a car wreck? Like that, but with weights.” To get a real answer as to what Crossfit is, here are a couple of videos: Video One Video Two It’s made a huge difference in the way I feel, both mentally and physically (more on those at a later date).
The Brain
I’m still in a battle with my post-chemo brain. Some days it’s better, some days it’s worse, but still not functioning at the level I’m used to/happy with. The worst part is the gaps. They range anywhere from momentary brain farts to “You say we used to be friends but I have no idea who you are.” The most frustrating part is the lethologica.
You know when you’re describing a movie to someone and you get stuck on a character? “You know – that guy with the bug eyes. He was in Fargo. Really skinny.” Maybe you can name everything you’ve ever seen Steve Buscemi in, but you can’t pull out his name. Imagine having that happening all the time with ordinary objects. “Could you hand me that… you know… the yellow thing with the eraser on the end?” It’s been getting better, especially now that I’m around more people and talking more (working from home is also a really solitary existence), but it’s still slowing up my talking. And some of you know how I like to talk.
The most recent screwy brain thing is a sort of short circuit in the recognition center. Some wire in there is crossed that makes the unfamiliar familiar. Like, when I started this new job, I was certain that I knew around a quarter of my co-workers from somewhere else. Their names weren’t familiar, but their faces rang bells. A couple of them I narrowed down to “looks kinda like someone I’ve seen on TV,” but the rest I have no idea why I feel that way. Makes you really stop trusting your memory.
The Blog
In addition to being overwhelmed at work, I was also a little worn out on cancer. At least, I didn’t really have anything new to report and I felt a little dumb posting random non-cancer stuff on the site, which made me start posting less. So, once I stumbled across that wonderful word for what my brain was going through, I set up a new blog: Lethological. That helped break the seal for a little bit (what, like, five posts? Lame.) until the work part of my life started weighing me down.
Now that I’m slowly getting over my aversion to typing while at home, I’m ready to be out on the internet again. I’m slowly figuring out Facebook after being dragged into it kicking and screaming, and as you might have seen if you were checking in here, even tweeted a little bit. I’ll eventually add some links to the site so you can find me at those places, which leads right in to the next item on the list:
The Changes
One of the many benefits of rearranging and getting my life back in control is the ability to block out some time for Cancer is My Bitch again. Things are awful dusty around here and I’ve let the weeds get a little too high. It’s going to take me a little bit of time to get the housekeeping done, and I’m still not quite where I need to be in the rest of my life yet. So here’s what’s going to happen:
- This will be the last official post on the CiMB site. I’m going to do some redesigning around here and make this site more focused on getting the word out and getting shirts on people’s backs. That’s right – the Shirt Heard Round the World isn’t dead and it’ll be rearing its head again before too long. Have just a little more patience, my little bald brethren and sistren.
- I’ll still be blogging, but I’m going to do all of that on Lethological now. I’ll put a nice big link at the end of this post and one over in the top right so you don’t have to keep coming to this post to scroll. The reasoning on this is, Cancer is My Bitch isn’t really about me anymore. CiMB is going to grow into its own entity, and my story’s just going to be one of many. For now, all of my old posts will stay here. Eventually I’ll get them all imported into Lethological and then I’ll basically have a section on the site here that pulls those blog posts in so you won’t have to go all the way over there to see what I’m doing. Sounds a little clunky, but it makes sense in the end.
- I’ve also got to get all of my email sorted. We’ve been through everything from computer crashes to spam filters out of control here at CiMB headquarters, so I’ve got to get that all settled and working.
- Once the blog history’s over on Lethological and this site has its new look, it’s shirt ordering time again! I’ve got a few good leads on new places to get shirts from, but if you have any recommendations, send em along! I’m hoping to go bigger than just the shirts (and the little bonuses) this time, but I’m keeping that close to the chest right now.
So there you have it. The last almost-two-years (holy crap) in a million words or less. I’ll eventually get around to getting you guys caught up on everything (like my ukulele playing), but that’ll all happen over at the new place. See you there!
Hi Brian,
Glad to see you’re doing well. Next time don’t disappear for so long . . .you scared us! 🙂
Bonnie (from the board/Boston/louisville 🙂
Hi Brian-
Have followed you in the past. So SO SO glad your health continues to be so great. Best of luck to you– you are an inspiration.
Best,
Liana
Hey, I had a chance to read through your blog and found it to be very inspiring and insightful.
Our organization, Mesothelioma Center, just finished up a batch of interviews with mesothelioma cancer survivors and published them on our site: http://www.asbestos.com/mesothelioma/wall-of-hope.php. Their stories provided me with a lot of perspective on what it must be like to be battling this disease. Maybe you can find them rewarding as well. I’d love the chance to get in touch with some other survivors for opportunities to share their story as well.
Maybe you can help us spread mesothelioma cancer awareness by posting some quality information on your blog. Let’s work together to spread as much cancer awareness as we can!
Best Regards,
Mike Postorino
Mesothelioma Center