I’m not OK.

With that title and my medical history, I should probably start this post by saying that to my knowledge, I don’t have cancer again. Breathe easily for a little while at least. This is going in a different but not opposite direction. Tangential is the word the chemo brain wouldn’t let me think of, and at some point I might look it up and see if that’s really the right word.

In about a month, I’ll have my 14th rebirthday. For those of you not hip to the slang all the cool cancer kids use, on July 12, 2006, after receiving intense chemo that wiped out my immune system completely, I was given back the stem cells that were harvested from me at the start of the “You’re gonna need a stem cell transplant” phase of my cancer journey. It also marks the first moment I was truly cancer-free and, having yet to get cancer again, it’s kind of the first day of being cured.

So here I am, coming up on fourteen years… I was going to say “without cancer,” but that’s not exactly right. Yesterday, I would’ve said “without cancer” and I would’ve meant it. Today, I feel like I should start memorializing May 10, 2005: the last day I didn’t have cancer.

I’ve spent the last fourteen years okay with cancer. Well, maybe thirteen years, since I had the radiation and all that after the stem cell transplant. So I’ve spent the past thirteen years okay with cancer. It hasn’t been that big of a deal because it was over. I got the new stem cells, I got the radiation, I got the all clear, so I am done. I’m alive and not cancer-ridden, so it’s all over now and everything’s okay.

I’m not okay.

I don’t feel like I’ve really repressed anything, which I guess is kind of how repressing things work. Over the years, I’ve noticed an increase in stupid crying. Now some of you right now are thinking “crying isn’t stupid, it’s a valid expression of emotions!” I get that, and that’s not what I’m talking about. I’ll give you an example I’m almost positive I’ve used on here before at some point.

Back in the treatment days, I had a few bouts with pneumonia, some of them requiring hospitalization. During one such visit, I had had a rough couple of days. No one tells you how pneumonia can hurt and feel like a knife jabbing into your back.

I had a rough couple of days and rougher couple of nights, which had me awake when the Today Show was on. The movie “Invincible” was coming out that weekend, so they had Marky Mark and the guy who the movie was based on as their guests. That guy’s name is Vince. As soon as it clicked that they called it Invincible because his name is Vince, I started crying. And not like, sad little weepy sobs. Barb came in the room shortly after my realization and I was crying hard enough to concern her. “Oh my GOD! What’s happening?” she asked. With snot pouring from my nose, I manage to choke out between sobs “IT’S CALLED INVINCIBLE BECAUSE HIS NAME IS VINCE!”

That, my friends, was my first bout of stupid crying.

Usually, I’ve used stupid crying as an indicator of how tired I am. The more tired I am, the more likely I’m going to start crying because I’m watching a concert where the singer has gone quiet and the crowd is singing all of the chorus in unison. I suppose that if I were as smart as I think I am, that should have been a clue. Not the concert part, because how can you not get emotional over that, you monster? The “when I’m too tired” part. What happens when you get over-tired? Barriers start to come down.

Oh my god, I just realized that if I drank, I’d be one of the worst kinds of drunks to be around.

So I went along in my life just fine, using stupid crying as my barometer of when I need to try to sleep longer. I talked it all over with my therapist at the time and we convinced each that the stupid crying was related to accomplishments. Like the concert thing, thinking about some guy writing a song that meant something to him and then years later, hearing thousands of people repeat it back to say “it means something to us too!”

Yes, I’m stupid crying right now.

Where was I? Ah yes, I was done with cancer, I get overly emotionally proud of other people’s accomplishments when I’m tired and I’m completely and totally okay. I should probably talk about my brain right now. You see, medical science is still catching up with the personal experiences of cancer patients in a lot of ways. At least the last time I looked at things, it was. “Chemo brain” is one of those things. It’s becoming more accepted now and maybe a little more understood, but it’s oh so real.

Before cancer, my brain worked pretty well. I’m not dipping back in the smart well here, I just mean it functioned correctly for the most part. I had a major concussion back in ’97 or ’98 that really changed my moods around, but other than that, my brain was reliable. During and after chemo, my brain isn’t as reliable. I’m being reminded just how unreliable as I type this post, because two of the first things I noticed when it started happening were typing issues and word retrieval issues.

The typing issues take one of two forms. The first is just letters in the wrong order, the second is wrong words or sentences. In both instances, I know I’m typing the right thing, but I’m not. Like how I had to go back in this line and change “owrng” to “wrong” just then. My fingers know it was typed correctly, but it wasn’t. The second instance is the worst. When I was writing blog posts for CrossFit New Haven, I’d have Barb read them before I posted, because often she’d spot a section and ask me “What does this sentence mean: ‘When you’re doing the Olympic lifts, you firetruck your elbows quickly?'” This was all before autocorrect, mind you, so I knew it was supposed to be a different ducking word.

The word retrieval issue is what drives me crazy the most frequently. I can tell you I’m thinking of the word for that round thing in your car that you put your hands on to steer the car and has an airbag, and I could tell you lots of other things about it and still not come up with the word “steering wheel.”

My memory is shot as well. Many of you know me as a reservoir of trivia, and a lot of that is still in there, assuming I can retrieve it when needed. But most things that I’m not immediately using just fade away into the background. “Use it or lose it” has become a way of life. Depending on how long it’s been since I’ve seen you, I might not recognize you. Or will recognize you but have no access to your name. I’ve almost certainly forgotten a lot of the other details of your life that I once knew.

So here I’ve been thinking I’m okay, even while knowing that an important part of me isn’t. My brain is malfunctioning in several bothersome ways. If it weren’t malfunctioning, maybe I’d be able to see that I’m not okay.

My big revelation today was brought on by watching a documentary that I cautiously give my heartfelt recommendation. I watched “It Started as a Joke” today and it was wonderful throughout. However, his wife had cancer. Watching two people who seemed so nice and happy and great having to deal with this just broke me. fourteen years of repression, gone.

Throughout my cancer time, I never let myself get down to crying about myself or my situation, stupid crying usually seemingly about other things. I knew that if I started crying, there wasn’t a place to stop. It worked during treatment, but it looks like I’ve been doing that for these past fourteen years as well. Since I no longer seem to have a more immediate expiration date, maybe now it’s okay to spend a little time feeling sorry for the old me. Shed a few tears for the bits and pieces of me that cancer took away from me. Maybe now I can sit here and say the words as I type them:

I’m not okay.

The best laid plans of mice and men…

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.
Read more

The Usual Apologies and Updates

Okay, first off, the standard apology to those who have commented or emailed me and have yet to get a reply. I have a tendency to think I can do much more than I can, which leads to me either forgetting things or getting too involved with something else to keep up with things that I should be keeping up with.

So yet again, today is a new day. From this point forward, every email that comes in is answered ASAFP (since putting things off for too long makes it that much harder for me to do them) and every comment answered as soon as I see it’s there. I’m trying to turn a new leaf here, so have some patience.

Part of that leaf turning includes daily posting. I’ve tried to do it in the past, knowing that I’d slip up at some point and miss a few days, then a few weeks, then a few months, etc. This time, I’m doing it with the knowledge that I won’t. Let’s hear it for positive thinking!

Of course, there’s always a catch. While I’ll be answering emails and comments as soon as possible, any sent from Thursday through Monday might still have a bit of a delay. I’m going to be heading down to Louisville, KY this weekend for Hodgeapalooza II: Hillbilly Edition! But as soon as I get back, the answering resumes! Unless I have internet access somewhere, in which case, updates from the road!

Next on the agenda: ME! Health-wise, things are still good on the cancer front. I had a clean PET before I went to Texas and I have a bloodwork-and-visit-only followup later this month. Tooth-wise, it hasn’t been so great.

About a week before I left Texas, one of my wisdom teeth started hurting. That’s right – September. Tylenol was keeping it under control pretty well other than a couple of really hellacious days (usually on a weekend). Why didn’t I just go to the dentist? Well, I don’t like my dentist. And not in that “I don’t like dentists” way – just him in particular. And I’m horrible when it comes to finding new doctors and making appointments and such.

So last week, I finally had enough and found someone and got in for a look. Turns out both wisdom teeth on the left side are going to have to come out. I’ve already had the two on the right out, so I’ll be dropping from half-wise to not wise at all. Fortunately for you (and the makers of Tylenol and Advil), they won’t be coming out until the 20th. So, if I seem out of sorts in Kentucky, it’s not just the bluegrass making me blue.

Other than that, things have been rolling right along. I’m getting a little better at figuring out the whole life/work equation, and I’ve been getting fired up about getting CiMB back on the road again. I was going to include the plans in this post, but it’s gotten rather long, so I’ll make you wait until tomorrow.

Hey, I’ve got to come up with material for a post each day somehow, right?

Tie a Pink-ish Ribbon ‘Round the Old Oak Tree

Many thanks to Loretta for adding a comment to the “Frickin’ Pink Ribbons” post, which reminded me that we’re finally out of Breast Cancer Awareness Month here in the States. I thank everyone else who commented as well, it’s just that Loretta had the luck to post after 10/31 and get the special mention. Now that October is over (and since I haven’t posted since September), it’s time for a quick follow-up.

I’d also like to send a shout out to the comment spammer who hit the original post with the most accurate and insightful comment spam ever: “Hello webmaster. I think you could also make more of it through a bigger exposure about “Frickin’ Pink Ribbons”. Perhaps you can have some pink ribbon candy.”

Brilliant.

Aside from going off on a tear about a whole MONTH devoted to those of the pink persuasion, I’ll share a little message I received From Above. No, I don’t hear God speaking to me in my head or anything – I’m not crazy. He speaks to me by waving things in my face until I get it.

Okay, maybe I am crazy.

Anyway, a couple of days away from the end of October, I was walking to my psychologist’s office (I know, I know – you’re shocked) when I saw a beat up station wagon with a bumper sticker that summed up the whole month: “Abortions Cause Breast Cancer.”

I know, I was just as angry as you are. “How DARE they! All of these loose women taking our cancer funding away just because they’re going around having abortions all willy nilly!”

Okay, so I wasn’t angry right off the bat. When confronted with something so mind-numbingly idiotic, my first reaction is to get the giggles. Then my brain runs in circles for a little bit. Then what I see finally cuts through my barricades and I get either pissed off or sad. Often, a combination of both.

After I had quelled the giggles of my immediate defense reaction, I felt the universe waving and pointing at the bumper sticker. Time for Brian to learn something again.

Every time I’ve seen something about “Breast Cancer Awareness” I’ve always thought to myself “Come on, WHO is still unaware about breast cancer in this country?” Now, I just think about that bumper sticker. It turns out, even the big cancers still have a lot of ignorance to deal with. Granted, this particular bumper sticker was an easy, though highly logically flawed, slur (women get most breast cancer, women get all abortions, therefore, abortions cause cancer) and it was but one of the many things this driver believes abortions cause and/or are caused by. Apparently, the deeper roots of breast cancer lie in being a liberal and/or a democrat, since this little station wagon believes (according to two of its other stickers) that liberals and Democrats cause abortions. It stands to reason then, that liberals and Democrats cause breast cancer. I bet you wish you had known that before election day, huh?

For those who have some across this site in ways other than the Hodge Board, I do have an eventual Greater Purpose for both me and the site. CiMB is going to (hopefully) turn into a way to get people talking about ALL cancers and help quell as much disinformation as possible. There are a lot of organizations, foundations and movements out there raising money to fight these things and cure our family. They can concentrate on eradicating cancer. I’m concentrating on making my cancer family’s life easier in any little way that I can. I’m better at words than fundraising, so I’m aiming for education. I’m not looking to raise cancer awareness, since everyone, ignorant or not, is aware of it. I’m looking to make people realize that these bald people whose backs they’re talking behind and pointing at are human beings. I’ll be posting again later tonight with more details on where the site’s going and where things are standing. And about me too, since I know you all just come here to hear me talk about myself.

So I guess our pink sisters are going to need our help after all. Even with all of their awareness efforts, there are still a ton of idiots out there making them feel bad for what they have, and I can only key so many station wagons.

But I still won’t buy anything that’s pink 🙂

Frickin’ Pink Ribbons…

Okay, before I start ranting, there are a few things to state up front.

  1. I love and support all of our cancer family. While I have a special fondness for Hodgers, I love all the rest equally and want to see all forms of cancer get wiped off the face of the earth.
  2. I know breast cancer affects tons of women and that it has touched just about everyone in some way, directly or indirectly.
  3. I have nothing against women (and men) with breast cancer. I love you folks just as much as the rest of my cancer family and hope we get a cure for you soon.
  4. If you have breast cancer, had breast cancer, or love someone who has/had it, you might want to stop reading right now.

Read more

A Quick One While He’s Away

Wow – August was my last post. August? Seriously? Wow.

There have been a lot of reasons for my silence the past few months. The first one being (say it with me gang), work has been crazy. The craziness is finally starting to call down just a little, so I’ll be able to pay a little more attention to you, my adoring public.

The other big reason is, I’ve lost some great friends recently. With each one, I’ve felt that I needed to write one of my novella-length posts in memorial to them both for me and for their families. But with each new loss, that meant I had another novella that I needed to write. I’ve felt more guilty for not paying proper tribute to them than for leaving all of you in the lurch.

With these enormous self-imposed tributes hanging over my head, it didn’t feel right to write about the more trivial things in my life until I paid them each the proper respect. And due to the work craziness, I didn’t have the time available to sit and type away.

Finally, my wife and a bunch of Hodgers made me see the light. Last weekend, we had our big Hodgeapalooza East meetup, where a bunch of us from the Hodge Board got together to eat, drink and be more than merry. It was an awesome weekend keyed off by the fact that two of our more prominent members from Scotland were planning on making the leap over the pond for vacation (no matter what Veronica says). Sensing a once-in-a-lifetime possibility, we had a great turnout of folks with their spouses and/or parents, patients, former patients and caregivers alike.

The most amazing thing is that in this large group of people (30? 40? My math’s been bad lately), there wasn’t a single person who made you think “Oh man, I can’t wait to get aWAY from this fool!” When’s the last time you’ve had that happen in a large gathering? Of course, there’s always the possibility that I was the fool to get away from, but I’m just self-centered enough to convince myself that that is more than likely not the case. Maybe.

Meeting all of these people in person for the first time after going through so much with all of them was… some word that I don’t know. Wherever “amazing” “extraordinary” and the like are on the scale of greatness, pick your own word that’s thirty or forty levels above those. That’s what it was. Being around all of my Hodge family made me realize just how much I’ve missed having them in my life, even when they’re primarily words on a screen. I also realized that not only am I being heard when I speak, but that I’m missed when I’m silent. The realization absolutely floored me. A few people told me how important my jester-like presence was and others told my wife in secret what a difference I was making for them by just yammering away. Okay, they used nicer words, but I have to keep myself grounded, you know.

Seeing that I was making any kind of difference to people out there in the cold cruel world also finally drove home one thought I had been keeping in the back of my brain: The friends I have lost would be SO pissed off to discover that they’re part of the reason I’m no longer out here making people giggle or shake their heads in disbelief at the latest dumb thing I did. I think this is proof positive that there’s no such things as ghosts, because I’m sure they’d all be haunting me by now.

Even though these people were very important to me, I’m going to finally break the barricade by not worrying about long tributes with the perfect thing to say. Sometimes the most perfect tribute is to say that someone has touched your life and will be missed and thought of every day.

Anne-Marie, Sarah, Shannon and Doug – you four are in my heart and mind forevermore. Anne-Marie and Sarah are two of the three people who got me fired up about how folks were treating them and made me decide to make Cancer is My Bitch a Movement. I got a shaky semi-start, but that’s another project crushed by work, another promise broken. I’ll be taking up the CiMB mantle again shortly though, and it’ll be bigger and better than ever. Shannon and Doug I only knew through their spouses, who posted on our Hodge board, but they were just as much family as every other Hodger out there and just as much pain when we lost them. Though I only got to see them through Jesse and Deb’s eyes respectively, it was obvious even secondhand just how strong and loved they both were.

I miss all four of you, though I can’t imagine it’s anything near as much as the people who were actually with you in person feel.

Okay, I’m back to posting now. Now will you guys PLEASE quick making all those spooky noises in the attic?

I’m definitely going to be posting more often now (lofty goal, since my last post was about 10 months ago) and I have Big Plans for CiMB, Moondoggie and my photography, but I’ll slowly reveal those later. I doubt I’ll reach that lofty “post-a-day” goal that I usually set for myself, and I’m tired of breaking promises. So that means, you’re left with “I’ll be posting more frequently,” so suck it up, people.

I Feel Like a Kid Again…

So here I am, putting off writing another post because I have so much to catch everyone up on, which means that more stuff happens, which means I put off the post longer, which means more stuff happens, which means I start to get a little dizzy after awhile. So now, it’s time to break the cycle. There will be a lot that’s happened which might occur to me to mention down the road aways, or I might never get around to it and have this hidden little dark corner of my life that you don’t know about, filled with forgotten ideas and trips to the ice cream shop.

So, some of the biggest news is that I had chicken pox. Again.

(For my Hodge board friends, this is in reference to the pox I just had, not another, which would be the third time, if it happened).

Yes, I had the pox as a child, but the stem cell transplant sets your immunity back to zero, so you have to get re-immunized for everything. For once, it wasn’t a case of me slacking and putting it off or forgetting. You can’t get re-immunized until you’re one year post-transplant, and I had only recently hit the mark (July 12th, my first re-birthday). So now hopefully next week I’ll get my immunizations. I had to wait to be rid of the pox, then I had to spend a week or so forgetting to call and set up my appointment. D’OH! I would do it this week, but Barb’s volunteering at the Hole in the Wall Gang camp this week, and I want to make sure someone’s around to take me to the hospital if I need it.

Sure, nothing untoward typically happens with immunizations, but I think I’ve shown I’m not quite typical when it comes to the medical world.

Another thing making me feel young and happy with the world is that I bought my first laptop. I’ve had many a desktop computer, but have never really had a reason to get a laptop until now. My previous job with the state gave me a state-issued laptop since I was on the road, but that’s not quite the same as your very own flat-black-cased rectangle of awesomeness.

Of course, me being me, I couldn’t simply get a laptop with nothing special happening. I compared a bunch of stats, features and prices and went with a nifty Lenovo ThinkPad (formerly IBM). I was a little surprised as I watched all of the shipping information that everything was originating in China. Sure, I have a bunch of stuff made there, but usually it’s sent to a US warehouse so it looks like it’s coming from here. Then, about a week after my new baby arrives, I find out that the US Government sent back a shipment of Lenovo computers after discovering Lenovo was owned by the Chinese government. Great. Now the Chinese government is going to know my Minesweeper scores.

Let’s see, in other news, I’ve finally seen a neurologist, and he’s prescribed Neurontin for all of my ails. This is awesome, as it seems to cover all kinds of problems I’ve had, both pre- and post-cancer. I’m in my second (third?) week of it, and so far, so good. Of course, I haven’t done a lot of walking since I started taking the pills, so I don’t know how it’s taking care of the Lhermitte’s issue. Time will tell.

As for now, it’s back to work. There now, that wasn’t so hard, was it?

Muchos Thankos

Hey Everybody

Still busy as always, but I had to get a couple of words out before getting swallowed back up again.

First, thanks to all of you for your care, concern and love over the past few days. If there’s one thing cancer does, it’s surround you with great people. I haven’t had a chance to respond to your comments and emails yet, but I will soon!

Second, speaking of emails, I’ve recently discovered my spamblocker has been going a little nutso on who it decides to block. So, if you sent me an email awhile back and I haven’t responded yet, you might be one of them it caught. Or I might just be a lazy, good-for-nothing slacker. Only time and some digging will tell, but I’ll get back to you soon!

Lastly, the biggest news. I had my PET scan this morning and… it’s clean! There’s a little bit of activity around my appendix, but since I’m not keeling over in agonizing pain, everything seems to be fine. Now we can all get come sleep this weekend 🙂

After You’ve Gone

After you’ve gone… and left me cryin’,
After you’ve gone… there’s no denyin’,
You’ll feel blue, you’ll feel sad,
You’ll miss the dearest pal that you have ever had.
– Henry Creamer & Turner Layton

Well, today marks an anniversary of sorts. One year ago today, my thymus walked towards the light and left this mortal coil after being sucked through a tube and diced into little bitty bits. So long, sucker.

It seems a strange thing to commemorate, what with the regular birthdays and the stem cell birthday and the diagnosis anniversary and the first symptom anniversary and all, but for some reason, I found myself counting down the days until today. Maybe it was my subconscious way of getting myself to feel okay about sitting still and writing instead of working on some project or another.

I’ve always been at least a vaguely self-reflective person, and quite good at ferretting out the reasons behind why I am or do certain things. I seem to recall there’s something special about that quality and ADD. Either it helps your brain to do this, or you’re not supposed to be able to do this. Either way, it’s one of my more powerful and annoying traits. While I can see why I’m doing the things I’m doing, that doesn’t mean I can actually do anything about them, which makes it all the more frustrating.

Can you tell yet that this is going to be a long one?

I’ve had a lot of little bumps in the road as of late, and I’ve been getting the feeling that there’s something that floats around in the air with us Hodgers, as when I start to feel or think about certain things, someone always winds up posting about the same thing. In this case, we’re talking about those ol’ Post HL Blues that Paige brought up. I would’ve posted this over there, but as soon as I tried, the site went down.

Oh well, I’m used to muttering to myself. It’s comforting, and I always laugh at my jokes.

Back to the topic at hand – me. Anyhoo, I’ve been driving myself a little crazy for the past few months, both through my actions and my examinations of those actions. Like most things dealing with cancer, it’s worse at night.

For starters, I’ve finally come to a new realization, somewhere in the middle of reading that similar thread on the NHL Side that Kat posted a link to in Paige’s thread. I’m not totally sure it could be called a realization, since I knew it in my brain somewhere, but at some point tonight I suddenly new it in my gut.

The cancer claimed another victim. He was 32 years old, had his whole life ahead of him, and had no idea what hit him. Granted, it didn’t take him quickly – these things never do. But though he hung on for a year or so, his time of death can be placed right at the start of it all. On October 3, 2003, Brian Watts died.

If I were a drinker, I’d raise a glass to that old forgotten me. If I were a gangsta, I’d be sure and pour some of my 40 on the ground in his memory. But starting with that first infuriating itch, that Brian’s fate was sealed.

And now you all have to deal with me.

Sure, there are still ways that I’m the same. Times when people recognize the “old me.” It seems like other people see it a lot more than I do, though. Hell, there are lots of ways that I’m better that I was.

Brian Watts, Geek. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world’s first bionic man. Brian Watts will be that man. Better than he was before. Better, stronger, faster.

Okay, so the “stronger” part hasn’t happened yet, unless they were talking about will or determination. But who wants that? I want that cool noise when I leap over cars. At the very least, I want to be able to walk two blocks without having to start limping from the L’hermitte’s. I want to be able to exert some physical energy, take a break, then get back to work, rather than just having to put my head down and grind because I know that if I stop to rest, I won’t be able to continue.

I want to look in the mirror in the morning and see me, not The Other.

Granted, being a new me isn’t necessarily a bad thing – our dearly departed Brian did have his flaws. Who doesn’t? But it’s not necessarily a good thing either. At best, I seem to have just traded in my old scuffed up luggage for a larger, heavier-duty set. Big Joe vs. the Volcano trunks.

Currently, my biggest suitcase contains “overworking.” Actually, a few of my larger ones carry that, as well as this carry-on and one of the fanny packs.

You see, I’ve been caught in a mental trap of sorts ever since the firing back in late February. One side of the trap goes like this: “You’ve recently accomplished An Amazing Thing. You beat cancer. Now is the time to appreciate life and all of its beauty. Go out and smell some roses!”

The other side of the trap sounds like “You’ve recently accomplished An Amazing Thing. There was obviously some Reason this happened, so you’d better hop to and get to work. You were put through the struggle and came out on the other side for a Reason, so you’d better not screw around smelling roses – you’ve got work to do! Go fulfill your DESTINY!”

Yet another side follows this line of reasoning: “You beat the Hodge – this time. This thing comes back and that first fight wasn’t all puppies and lollipops. It’s time to make hay while the sun shines. You’d better get to work and get those ducks in a row now, because you don’t know how much longer you actually have.”

I think that last side is what’s been bothering me the most lately. It’s bad enough knowing what Sarah and Anne-Marie are having to deal with and occasionally having the “that could be me” thought pass between my ears in the midst of all the usual static.

But I’ve found that it’s even worse when the thought isn’t cutting through the static. Because it’s there whether I hear it or not, screwing with my every action.

I’ve been doing a fair bit of home repair lately. I’ve embarked on projects that surprise some in their grandeur, but that I consider fully within my means and abilities. Yet, once I get started, they’ve all been spiraling out into madness of Lucy Ricardo proportions.

One late, late night, covered in grime and cobwebs and curses, the reason for this suddenly dawned on me. I was trying to make everything I did bulletproof. Why?

Because I might not be around to fix it if it breaks.

That’s right – my subconscious has been pushing me to work harder, faster and crazier, because it’s convinced I will die soon and I should make sure that things are taken care of. How messed up is that?

And what’s worse is, that’s only one facet to this new Brian’s screwy new life. Let’s go write on the chalkboard for a bit.

  • A Subconscious certainty that It’s Gonna Get Me, and Probably Soon
  • New job with ever-expanding responsibilities and needed job skills with ever-shortening amounts of time to learn and do it all (not the Death thing, but the Time Management Thing)
  • A new puppy (well, new since February) who, while she’s a bundle of joy in her life, does have her moments, like any creature, be they man or beastie.
  • The Baby Thing. I’ve had so many different chemicals pumped through me that I’m no longer a factor in the actual fertilization part of the baby process. That means that we can’t just go and get knocked up like most couples – we actually have to think about how we’ll make it happen, when to make it happen, and think about all of those “what ifs” and “whys” and “hows” and “should we’s”. Aside from the stress that all causes, there’s the added bonus of feeling like a failure. Not one of those male “I should be able to spread my seed far and wide” type failures, but a feeling of failing Barb, not being able to give her something she wants and truly deserves. Then again, what has she done that’s so bad to deserve a little Brian running around, right?
  • Aside from that failure thing, there’s also the lingering thought in the back of my head that always upsets Barb’s when she sees it in my eyes, but I can’t help it. So skip to the next bullet point now, Barb. Please. That other thing is the suspicion that I’ve ruined Barb’s life. Not that she’d ever think or feel that way, but while I can see a lot of good things that have happened in her life from me being around, I also see a lot of bad. And when the nights grow dark, the bad things pile up.
  • I know there’s a whole hell of a lot more going on in my mind right now, but I’m too tired to think of it. But I did ask Barb to skip down to the next bullet point, so that meant I had to write something, right?
  • Oh, here’s another – Responsibility. Responsibility as a Survivor. Responsibility as a Husband. Responsibility to my fellow cancer folk. Responsibility as a furry little girl’s Dad. Responsibility as a Homeowner. Responsibility as CTO of a small company that I could accidentally destroy with a few misplaced pieces of code. Holy crap – it seems that at some point in the last year or two, I grew up. How much does that suck?

So all of that has been weighing on me as of late and kind of driving me into the ground. I tend to not be able to think of all the possible problems at once, for much the same reason I’ve never been able to cry about myself. I can dissolve into a puddle watching a home makeover show because I know it’ll be over in an hour and the crying can stop. Today, it was an episode of Overhaulin’ that got me. And if that’s not pathetic enough for you, I’m actually tearing up a little right now thinking about it. But if I cry about me, when does the crying stop? So I can’t cry about me, but I can (and do) cry about all of you in your battles. And about movies where the rookie learns a valuable life lesson from the veteran. Or when Barb looks at me That Way. Or when they call the wind Mariah.

Anyway, back to the driving into the ground bit. Some days are better than others, some are worse. Lately, we’ve been swinging to the “worse” side. Why?

The Itch is back.

Originally, I thought it was because I had missed a couple of days of my Doxepin. I was so busy and swamped with work and home projects, that I couldn’t convince myself to drop it all long enough to go get a refill. I’ve been back on it for a couple of weeks now, and it’s not cutting through this time.

I would hope it’s allergies or stress or polonium poisoning or such, but it’s all too familiar. I already have the fresh wounds and hour-old scabs. I’m already down to about five hours of sleep a night again, interspersed with random wakenings, sometimes to scratch, sometimes just to stare at the wall and wonder why I’m awake this time. A couple of mornings, I’ve had the joy of once again having to clean the caked blood out from under my fingernails after I woke up. Joy.

I have a PET scan coming up next Friday (the 22nd if you’re still reading, and if you are, you’re my new best friend. I will quiz you before showing you the super-secret best friend’s handshake, though), and for the first time ever, I’m actually a little scared.

Aside from the ol’ scanxiety (which I never had before now, since I got so used to hearing bad results), there’s another thing I’m scared of and that’s my stupid subconscious. Aside from all of the typing it’s made me do tonight, there’s one other little thing it did. I was supposed to have my PET scan back in May. Somehow, I always managed to forget it until 6 or 7 at night. Or I’d be “too busy” to get away and make a phone call. Even with four or five voicemails from the onc’s office reminding me that I really do need to call and schedule that scan soon.

But I finally did it, so we’ll roll the dice again and see what happens.

And with that, I think I’ll post this and see how long I get to sleep tonight.

Weird as it may be, though I started the post with “After You’ve Gone,” (Benny Goodman’s version, if you’re interested) at the moment, my iTunes is playing the theme to The Great Escape. Odd, yet somehow strangely appropriate.

Warning: Parental Advisory

I know it’s been awhile since I’ve posted here, but life’s been getting in the way a lot as of late. In the past two and a half months, I’ve dreamed up an idea for a survivorship movement, I’ve started selling t-shirts to get the movement’s message out there and get survivors out where people can see them, I ran myself into the ground trying to make a deadline for work, I’ve been to Texas for a Planet Cancer retreat and to visit my parents, I’ve been fired, and it looks like I’m on the verge of being hired again. There have been many trials and tribulations over the past couple of months, but more than ever, I’ve been feeling that “guiding hand” presence.

I’ve never really been a religious person, haven’t really believed in fate either. But with each step I take through this cancer journey, it seems that more and more I’m seeing things happening for a reason, and it seems that nine and a half times out of ten, that reason is to get me back on track with CiMB. Whenever I’ve felt down or strung out and tired from overwork or like giving it all up, something always happens. I’ll get a wonderful note from one of you complimenting me on what I’m doing. I’ll read a touching story that hardens my resolve to Do Something for my cancer surviving family. I’ll get some little something that gets me back on track and shows me that my path has already been written down somewhere.

Usually it’s something small like these things. Like they say, it’s the little things that mean a lot. Sometimes it’s bigger things that happen, like losing my job. After all, if I can’t work on CiMB because of all the time I’m putting into work, that guiding hand has to make it go away, right? It also has to then make another job available to me that will make me work more on CiMB, and it has. But now that hand has done the biggest thing and gotten personal. It took my friend Mike away from us.

We met Mike and Sarah at the Planet Cancer Young Couple’s retreat. They’re from California and were our roommates for the weekend. Mike was a survivor of the Hodge, stage IV, just like me. Only trouble was, he was diagnosed twelve years ago. All of that chemo and all of those years of fighting had taken its toll on his body, but his heart was still strong and he was prepared to fight this thing forever.

It’s amazing how close this cancer can allow you to get to people. From complete strangers to best friends – no – to family almost immediately. We bonded with everyone there and became one big happy semi-diseased family. And there was so much about that weekend that kept me inspired and kept me going when I felt like I couldn’t go anymore. Mike was one of the main images in my mind for so many reasons, so many of which (as has been typical lately) just resolved into anger. I never really indulged in the “Why me?”s through all of my treatments, as I knew there were plenty of folks who had it rougher than I. But Mike brought out the “Why me?” in me. Namely, why am I standing here, looking fit as a fiddle, while my poor buddy Mike has been through the wringer over and over again? Why did I breeze through when he had to fight so hard? It’s not fair. It’s not right.

I hate this fucking disease.

I hate the fucking politicians who won’t save our lives.

I hate the fucking media for turning the country’s brain into mush and going after sensationalism rather than news, or at the very least, get sensationalistic about something that actually fucking matters, rather than the latest update on where an ex-stripper is going to be buried.

I hate myself for setting my quest aside for work or for rest or for any of the millions of things I’ve told myself I have to do.

Sarah just got off the phone with us a little while ago, telling us of Mike’s passing. He loved his shirt and wore it proudly, which makes sense for a guy with a biohazard tattoo on his back. Sarah said that for that weekend, he was like the Old Mike again – no cancer, just life. I’m honored to have been able to spend even a little time with a real-life hero, and my anger over losing him is wiping my slate clean.

No more excuses, no more screwing around. In the next couple of days, you’re going to be seeing a lot of changes to this site. I’m taking my Idea live and I’m going to start tilting at some fucking windmills. For those of you who only know me in the real world or through this site, you might not have learned of the Grand Idea, but believe me, before long, you will. It would be a disgrace to Mike’s memory and the memory of all the other warriors we’ve lost to this cowardly, piece of shit disease if I fell asleep on the job again. We can’t afford to lose any more Mikes.

Mike, I know you’re up there in heaven and all, but keep giving ’em hell.