You might not be special

Posted on by Brian

So I was reading an article by Cecily Strong the other day. Word of warning, it’s raw and amazing. If you’re not sitting somewhere where you feel comfortable openly weeping, save it for later. I’d say this is some of the stupid shit that made me cry, but it’s far from stupid. It’s heartfelt and written in a way that totally puts you in her brain.

Anyway, the article got me to thinking. If you haven’t been in a place to read it yet, it’s about her cousin’s diagnosis and death from brain cancer, tied in with the pandemic. I read it during lunch, trying to weep as quietly as possible, then got myself together and went back to work. We shut down all of the production machines a week early because we’re getting ready to switch to new software on 1/3 and need to have everything organized, inventoried, and ready to go. This is a company founded in the 1950s that’s been operating off Windows XP and an Access 97 database since back when those were new technology. Now we’re going to web and iPad-based software. So it’s… a lot.

On this particular day, I’m reprinting labels for containers. Some of the labels are on products made in 1999. Two thousand zero zero party over oops, out of time. I have to find a label that looks like crap or has a bar code in the wrong space, take the label out of the package, take a picture of the label, put the label back in the package and the package away, then go to a computer, fire up the Access 97 database, look up the picture of the label, type in the ID number, make sure the information is correct and the label is set up in the right direction (landscape for metal bins, portrait for plastic bins. Holy shit, I just realized they both start with “p.”), print the new label, affix it to a 3″x5″ index card, go back to wherever the bin is, and swap out the labels.

So, mostly mindless work. The kind of work that lets my brain wander and/or churn along on something I’ve been thinking about. Like cancer, death, and why me.

Now, this isn’t the shirt-rending, fists-to-the-sky-in-the-rain kind of “WHY MEEEEE?” Instead this is the “Why did I make it when so many haven’t?” kind of “Why me?” If you ask anyone else who’s survived something like this, they’ve probably had this exact thought some number of times. Especially if they survived despite a grim prognosis. Like a stage 4 cancer that didn’t want to go away with chemo. Hello there.

You’ll read these stories of people who haven’t made it and they had so much going for them. So much potential wasted by getting this stupid disease. And yet somehow their death still made waves in the world. A relative decided to devote themselves to curing that kind of cancer so no one else would lose a loved one. A friend who was on the verge of making it writes a heartfelt song that shoots them to fame. A roommate pours their pain into their art and becomes huge for showing real emotion in their work.

I have a current working theory: when I was going through cancer, there was no one in my circle of influence who was perched on the verge of their own greatness. Since my death wouldn’t inspire anyone to reach greater heights in their art, profession, or service to mankind, there was no reason for me to die, so I got a free pass. So yes, if you knew me in the mid-to-early 2000, you had already peaked back then. Even me dying wouldn’t have made you a big thing. Fate says so.

Aside from pointing you toward Cecily’s great article and dissing all five of the people in my life, I’m writing this post as a warning. If you get diagnosed with any kind of disease that has death as a possible outcome, look at your friends and family. Any artists? Songwriters? Novelists? Potential med students or creators of international charities? DITCH THEM IF YOU WANT TO LIVE!

Just a note from Simon

Posted on by Brian

I have a little bit of stuff from last week to talk about, but instead I’m going to talk about today since it’s still on the tip of my mind. Also, I’ve been having more problems typing lately so that might rear its ugly head. I don’t have any kind of autocorrect/autofill/spellcheck stuff enabled, because I want to be able to see what’s happening. Granted, I catch a lot of it by the time I get to the end of the sentence, but still. Aside from occasionally doing weird things out here, it can be a real bitch to get passwords entered when the sight doesn’t have the little eyeball to click. Anyway, today.

When Dad’s memory started going, he would always talk about how stupid he was now. If I had a nickel for every time he said “I can’t do that, I’m too stupid” once this thing started digging into his brain, I’d have quite a few nickels. He kept equating memory with intelligence. If I can’t remember anything, then obviously I’m not smart. This was frustrating on a number of levels.

You see, Dad was smart. Really smart. If something needed to be fixed or created, he could come up with the way to do it. He was a machinist, and his favorite part was making the machines do what he wanted. He had his own business building drag cars and came up with designs good enough to be stolen by the top kit manufacturer. And yes, a lot of his intelligence also came from his memory. He was great at remembering all kinds of stuff and applying those things he remembered to the situation at hand.

When I started racing, he was always tinkering with the bike. I spent a lot of practice time testing settings. I’d go out for a lap, then come in so he could change something. Back out for a lap, back in so he could change it in the other direction. He learned a lot about our bikes and as a side effect, he made me a great tester. When I’d come in that third time, I’d have to describe to him what changed in the bike. Not “last time you went up two clicks on the rebound,” but “when I was braking hard into the slow corner, the rear end was really smacking into me and the front end was trying to dive under the rut.” That was why we made a great team: I could tell him how the bike felt, and he knew what to change to fix it.

Like most things from my motocross life, that transferred over into real world skills. When I worked phone support, I could describe what the person was seeing like I was looking over their shoulder. Any time I’ve been injured, I can explain to the doctor exactly where and what kind of pain I’m feeling. Barb has marveled over all of the different medical nuances I’ve been able to describe over the years, especially during the cancer years. My dental hygienist has remarked on several occasions about my ability to describe what’s happening in my mouth.

That made a lot more sense in my brain.

Anyway, Dad was really smart and he felt stupid as his memory started to leave him. I would try to get him to understand that it wasn’t his processor that was failing him, it was his hard drive. He could still do the calculations, he just needed to store the equations in a different place. An external hard drive, like a notebook. Today however, I realized it might not have just been his memory loss that made him feel stupid.

We’ve got this big project at work where we’re trying to upgrade a thirty year old system to something more modern. Seriously, the whole company is currently run off of a Microsoft Access 97 database. All of the tech is a mishmash of versions of things cobbled together to work off this ancient system. They’ve tried to update everything a couple of times in the past, but This Time It’s Serious. We’re going to be going from Windows XP and Access 97 to iPads and web forms.

Fortunately, we have consultants doing the heavy lifting, one of whom is the guy who moved me over to the IT role where I’d always have his support. Until he quit a couple of months later and started working for his friend’s consulting company who our company keeps on retainer. He had started working on all of this conversion before leaving, so he’s spearheading the effort now. There are a lot of moving pieces, so he gives me things to do like setting up equipment or labeling shelves for inventory or what have you. Things that I can figure out a plan for, then turn off my brain and plow through it.

Today, I was unboxing a bunch of barcode scanners, putting IDs and velcro on them, putting velcro on the back of the cases of our fleet of iPads, then sticking them together. I worked out my system for what was going to go where and when and got to work. After two or three rounds, I realized I felt… simple.

If there’s one thing that pisses me off the most about my brain, it’s how I’m losing the words to describe things. “Simple” was the first thing that came to mind as it was happening, and it’s as good a word as any, I suppose. I was taking a scanner, taking the back off a label, sticking the label to the scanner, sticking a piece of velcro right under the sticker, then moving on to the next. I had already unboxed all of the scanners, made all of my labels, cut my pieces of velcro. Now it was just a little production line with nothing to do but follow the steps. Simple tasks being done by a simple man.

That’s what I pictured from the outside, anyway. I had my “I’m not listening to you” headphones on, listening to my music, a distant unfocused smile on my face as I plodded along through my task. Like Lenny in Of Mice and Men before he started killing rabbits.

Picturing myself like this, I thought of Dad and wondered if this was part of what he was talking about. While I was thinking of myself as “simple,” another generation could easily read that as “stupid.” Maybe it was a language barrier thing of his own.

So here I was, Simple Simon, doing all of my little tasks and I felt… content. I think that’s what drew my attention in the first place. Feeling content is something that happens very rarely in my world. That feeling of content was what was behind that simple smile, but what was behind the contentment? As usual when things start going right, I had to start overanalyzing and that’s when it hit me.

My brain was silent.

It wasn’t silent in a whiteout way, where I’m trying to access something and there’s nothing there (still just the two times that’s happened so far). Instead, it was like when the power goes out during a snowstorm. Initially, you’re surprised at how noisy your house had been. Even if you were just sitting on your couch reading, you suddenly notice how much noise the lights had been making. You miss the low hum of the refrigerator. That electrical aura that encapsulates your environment 24/7 is suddenly gone. With the electromagnetic interference out of the way, you realize you can hear the silence outdoors. Those seemingly quiet electrical lines are somehow even more quiet. There’s hardly anyone outside because of the snowstorm, so you don’t even hear traffic moving anywhere. You can almost hear each snowflake when they touch the ground outside.

Is this what the regular people are like? All of those people without ADD and constant inner narratives and thoughts and words and ideas and feelings and everything in a constant mental maelstrom. Do they get to experience this quiet all the time? Of course, I was spoiling it a little while trying to think it out, much like we do in that snowstorm, craning our necks and straining our ears to hear that noise that we know is there somewhere, until we wind up wandering outside and becoming the noise ourselves.

This must be what peace is like. Inner peace, outer peace, whatever. Just being able to sit somewhere, music in your ears, a task at your fingertips, and silence in your brain. I tried to hold on to that feeling, that quietness for as long as possible. Eventually, the power always comes back on and the traffic starts back up again and my brain is no different. When the lights come back on, we miss that feeling of absolute silence, deep down in our soul, even as we rejoice at having light and cold food in the fridge again. I’m happy that my brain spun back up into problem-solving mode, but I long to have that silence again. That contentment. That simplicity.

Frickin’ Pink Ribbons…

Posted on by Brian 14 Comments

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.

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A Quick One While He’s Away

Posted on by Brian 2 Comments

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.

It’s All Over But the Shouting

Posted on by Brian

So today was The End – my last radiation treatment. Tomorrow morning I will wake up whenever my eyes happen to open and have absolutely nothing on my plate. Sure there are a few chores to be done, some honeydos to cross off the list and some TV to watch, but there’s not a one of those that has anything to do with cancer. I’m sitting here at the computer right at this moment, and all is right with the world. No aches, no pains, no itches, no coughs, no labored breathing. For this moment in time, I get to feel like a completely normal human being. It’s easy to forget that feeling after a few years.

As I sit here, scratching my shoulder since I was dumb enough to mention not itching, I realize it may be time to start looking back. Time for a cancer retrospective. Wait – no. That brings to mind ends of careers and TV shows. Less a retrospective and more an answer to a question. It’s a question I often find myself asking at the end of just about anything major I do (or stop doing) : What did I learn from all of this?

After all, I had cancer fer chrissakes. If you can’t learn a thing or two from this sort of experience, then you really need to look into your study habits. So I’ve been thinking about this whole thing over the past couple of days, running words and ideas through my head, hoping to run across something Poignant and Touching that would Stay With All of Us Forever and Ever. After a bit of that kind of thinking, I finally got over myself and just started thinking about the real answer to the question, audience be dam… err.. forgotten. For the moment. Yeah.

As I ran through different ideas and concepts and, well, things, I realized that I have a few different things I can take away from this whole experience.

  1. I’m much stronger than I once imagined. Not to brag or anything, but before this, I had always suspected that I had something like strength inside me. Something that set me just a little bit apart from a lot of the people around me. Whether it was getting back on the motorcycle after a big wreck, getting back on my skates after stopping a puck with my head, or just not whining about my latest cold, I had picked up over the years that my brain and my body handled things differently than other people. Cancer has just cemented those feelings in my mind and brought out my inner badass. I’m constantly running into people who are amazed at the way I’ve held up through all of these trials. The way I show up to my appointments with a smile and shrug off the pain, exhaustion and general misery that comes with this whole cancer thing. Do you want to know my secret? All you need is the strength to pick your times of strength. Am I strong 24/7? Hell no. Am I strong every second I’m in public? Every chance I get. Everyone expects you to be weak. To be tired. To be defeated. Why should you do what other people expect?
  2. Breaks that are repaired make those spots stronger. I know what that means in my head, though it doesn’t make a lot of sense when I type it. Here’s what I’m saying: If you take a stick, break it, then glue it back together, that spot becomes one of the strongest in the length of the stick. Assuming you’ve done the repair correctly, of course. What do sticks have to do with all of this? That stick is my spirit. I wasn’t strong 24/7 – not even close. I had a couple of major breakdowns in the course of all this, along with several smaller ones. But each time I was broken, I made the repairs and now I’m stronger for having broken. You can show your strong side to the world, but know that at some point, you’re probably going to break. When you do, you just need to glue yourself back together and you’ll be stronger for it.
  3. The world is full of amazing people. This is something you just can’t learn until you have some Major Life Changing Event. I’m often one of the first people to go around hating humanity in general, typically when I’ve been driving for a little while. This whole experience has reminded me of just how amazing people can really be when they’re needed. All of my family and friends have been exceptional, from the closest of the close to those we only see once a year or less. Everyone has been absolutely incredible. The doctors and nurses and affiliated medical workers have been amazing. Sure, it’s their job to take care of me, but I didn’t run into a single one who had been hardened by the whole Cancer Experience. The vets were just as loving, caring and optomistic as the rookies. The folks I’ve met over on the Hodgkin’s Forum have been spectacular and an amazing source of support for both Barb and I. They’ve managed to get us over some big bumps in all of this and hopefully we’re doing the same for them. Last but not least is you – the reader of this blog. Assuming you’re not already in one of the previously mentioned groups, you’re probably one of the folks who stumbled into me from a link somewhere or a mention from a friend. I’ve received a lot of emails from you folks and they’ve all touched my heart in one way or another. I also promise that one of these days I’m going to get around to responding to them all 🙂 I got a little behind with the hospital stays and all.
  4. Rest is very important.While I have learned a few more things, this is one of the more important ones. And having learned this one, I’m going to go to bed and continue this tomorrow.

Early Mornings, Melted Goodbars

Posted on by Brian 7 Comments

“It’s three thirty in the frickin’ morning. What are you doing awake?”

Well, the short answer, would be “typing softly so as not to wake up sleeping beauty in the next room.” That’s one good thing about the new house – the office is down the hall and around a corner from the master bedroom. That should help mask my late night typing jaunts.

The long answer? Well, that’s somewhat. Um… longer.

You know how sometimes people get reflective on their lives when they have cancer? And how others get reflective when they take part in someone else’s life event, like a wedding or a funeral? And how others still get in the mood when they have a birthday? I hit the trifecta this weekend, baby! A wedding on Saturday, my birthday on Sunday and, well, you know about the cancer thing already.

I guess this would be a good point to post a warning. I don’t really know where this post is going, but it probably won’t be to a shiny happy place. If you’re newly diagnosed with Hodgkin’s, you might want to stop reading here and go read some of my happier posts. Mom, this might not be one you want to print out for Nanny to read. Or maybe it will be – we’ll see where I go with this. At the very least, it will be long and rambling and kill a lot of trees. Be patient, everybody.

Strangely enough, the thing that convinced me to risk waking Barb was an early morning snack. I’ve been awake this whole time and crossed that border between tired and hungry. I came upstairs to do some of my usual random websurfing, checking up on the Hodgkin’s board, some blogs and my Flickr account (new photos added a couple of days ago that I neglected to mention). As I sat here numbly clicking through the world, I realized I had a giant Mr. Goodbar in the left hand drawer of my desk.

Interesting that all of my candy resides on the sinister side of my desk.

One thing about the Whitney Street house – while it’s pretty cold in the winter, it gets hot quickly in the summer. We came home from the birthday celebrating to find the second floor quite stuffy. We didn’t risk the third floor. I opened the windows in the bedroom, so hopefully it had cooled off in there before Barb turned in.

The office, however, has not. Not much anyway. You see, the two windows here don’t have screens. Well, one definitely doesn’t and I’m almost certain the other doesn’t either. Something for the new owners to concern themselves with, whoever those new owners wind up being.

None of this was going through my head as I opened the left hand drawer of my desk. I think what was going through my head was something along the lines of “Food. Eat. Now. Good.” I took out the Mr. Goodbar and proceeded to break it into its component rectangles as I always do. At least, I tried to. The bar wasn’t gooey, but it wasn’t breakable. Just a really pliable in-between state.

So I’m sitting at my desk, eating my Play-Doh textured Goodbar and something poignant and relevant comes to mind. Some grandiose statement on life, death, melted chocolate and Doing Things. Something to make all of you say “Holy CRAP! I’ve got to read this guy more often! He’s DEEP!”

Sadly, that poignant, grandiose statement is lost to the ether, eaten away by ADD, early morning and chocolate satiation. I promise it was really good too. Both the idea and the chocolate.

Even though I haven’t the slightest notion what my early notion was, it got my typing and I figure I should keep going. This is the part that makes me think I’m going to get into trouble. Not trouble exactly. Maybe more along the lines of uncomfortable. Different? Maybe. Depressed? Possibly. Boring? God, I hope not. Rambling? What, are you new here?

Whatever my thought may have been as I was trying to lick the melted chocolate off my fingers, it had something to do in no small way with This Thing I’m Dealing With. You know: the cancer.

Where does my head want me to begin? Let’s start with an update that I forgot to post, then you’ll be able to follow along with the bouncing ball that is my brain. Here’s what I posted over on the Hodgkin’s forum (partially edited so it doesn’t seem weird and stupid over here) :

I do have some good news this morning to add on to all the drama.

1) Barb has done some wrangling and made some phone calls and has managed to move our closing date on the new house up to June 9th. We’re both overanxious to get into the new place and really tired of being in the old place. She told me last night that she’s gotten to the point where having to come home to this place just wears her out and crushes her spirit. Then she realized that she feels like this coming home from work, but I’m having to spend 24 hours a day here. We might have to pay two mortgages for a little while, but we’ll figure something out to make it work.

2) I forgot to mention yesterday (I dunno why, something must have been on my mind), but my bloodwork is finally back to normal. Still a tiny bit lower than it should be, but no more mask for me! WOO HOO!

3) Last night Barb took me out to Outback for a “No more MOPP” celebration dinner. Incidentally, if you’re on MOPP a word of advice: Even though you can eat cheese again 14 days later, this is apparently something you should ease back into, as my intestines will attest. Anyway, as we were getting ready to leave, my phone rang and it was SuperCoop. It always amazes me when doctors call and talk to me themselves.

He said he had talked to the chest radiologist and the nuclear medicine radiologist and they both agree that it could be pretty much anything that’s lighting up on the PET. So he’s going to be talking to a “very very good” thoracic surgeon about getting that biopsy done. He thinks it’ll probably happen next week and said what will be done to me is called the Chamberlain Procedure (bottom of the page). Apparently I’m going to be a really good basketball player when it’s all said and done. When the surgeon calls, I’m going to see if he can do a Gretzky Procedure on me instead.

So there’s where things are standing now. We’re overjoyed that we’ll be moving into the house soon and super happy that we’re gonna be cutting part of this sucker out to see what’s going on. That’s all I would need is to go through the whole SCT process and still have the same thing light up just because it’s born from the nether regions of Mars. Now I just sit and wait for the thoracic surgeon to call.

That was Thursday morning. I haven’t heard anything from the thoracic surgeon yet, so I’m going to call my SCT coordinator and see who I need to bug about the biopsy. So all this means that there’s a possibility that I’m in remission, and might have been for some time. Except for one thing.

The Itch is back.

It started three days ago, on my back for the first time. Sunday morning, the old familiar itching of the hands came back. Mom, Dad – close your eyes for this next line.

Fuck.

Yes, my number one symptom of the Hodge seems to be reasserting itself. It’s not as bad or as maddening as it was for a year and a half before diagnosis, but it didn’t start out that maddening then either. Am I angry? Not really. Sad? Maybe a little maudlin. More than anything, I’m just tired.

I’m tired of these early morning nights, too itchy to sleep, to tired to think.

I’m tired of putting my body through the wringer. I’ve been on one form of chemotherapy or another for a full year, for a disease that usually takes six months of chemo.

I’m tired of being tired. I can’t help anyone anymore and can barely help myself on the bad days. On the good days, I can sit down and type.

I’m tired of being emotional. Barb will walk into the room to find me bawling my eyes out and all she sees on the TV is a frickin’ long distance commercial. I was quite proud of myself for holding it together all through the wedding Saturday, though there were quite a few close calls. Interestingly enough, as much as I cry about external things, I can’t seem to bring the tears up for my own plight. In fact, thinking about myself is often a surefire way to make the tears dry up. How messed up is that? My theory is that some part of me knows that the other things I’m crying for are short term with a definite ending. If I start crying for myself, where will I stop?

I’m tired of waiting. My whole life has been on hold for the past year, particularly the last six months or so. While things are indeed happening, the majority of my life is in “sit and wait” mode.

I’m tired of scratching. I’ve already got scars from the first round of itching, all of the places where I clawed at my skin until I bled. I’m ready to heal now, not open up more wounds.

I’m tired of my brain not working. Sure, I’ve been doing Sudoku like nobody’s business, and I’m not a complete gibbering idiot just yet, but there are still frustrating short circuits I’ve been having to deal with. For example, I was reading a description of our house which mentioned the linoleum that had been installed “on the cellar floor.” I couldn’t read that correctly until the fourth or fifth time. On all of the initial tries, the line said “cellar roof,” which made no sense to me and caused me to keep rereading the sentence to myself. And this wasn’t just a simple misreading mistake. On those first three or four tries, the paper actually had the word “roof” typed on it, according to my brain. On that last attempt, the word finally changed into what was actually there. That was even scary than the now-usual random mistyping, where I’ll say, replace all of my “f”s with “p”s or something equally bizarre.

I guess most of all, I’m tired of this ever-looming and slowly growing specter of death hanging above me. Sure, Hodgkin’s is the most curable cancer out there. Sure, it’s the “easy” cancer to have. But guess what – the cure rate’s not at one hundred percent. And a good portion of the percentage of people who kick this thing beat it down with ABVD alone. With each different form of chemo I’m taking in and each new procedure being performed, I’m moving more and more into the “special case” category. The one time it pays to be average, I have to go and be different.

I’m often asked how I do it. How I get through the day, each day, every day. How I cope with this thing hanging over my head and the constant, crushing letdowns I’ve had through the course of this stupid disease. Well, there are a few things that have helped me up to this point.

One of the most important things is my ADD. This is one of the very few times it’s helped me out in life. If you’re distracted by shiny objects whenever you start to think Bad Cancer Thoughts, you don’t have a long enough string of Bad Cancer Thoughts to break through your clueless hide. Sure, I’m constantly reminded and remind myself of the fact I have cancer several times an hour. But there’s so much other stuff in the world to cram into my head that it’s easy to put the cancer thing on the back burner often, especially since it won’t stay back there. I mean, sure this cancer thing’s important, but look – tinsel!

That’s the easy, happy answer I most readily give out to people. And while it’s an easy, happy answer, that doesn’t mean it’s untrue. At most, it’s a lie of omission. Forgetfulness is a large part of my Cancer Sanity Program, but that’s not the whole story. It’s just the easiest story.

The next part of the story would be that indefinable trait of human nature known as me. While I can have my dark, brooding depressed moments, it’s not in me to blather on about them to other people. He says as he blathers on to other people. I guess what I’m trying to say is that most often when I’m around other people, I don’t tend to be exceedingly serious. Quiet, certainly, but it’s my nature to be quietly funny. I like to put the people around me at ease, and it’s easier to do that by making fun of this stupid creature than it is to whine about my life’s injustice. There are enough people doing that in the world already – we don’t need one more voice.

As difficult as things may get for me, I always keep in mind that there are so many who have it worse than I do. No matter how I want to look at it, I can always think of people in worse situations. Yeah, I have cancer, but it’s not brain cancer. Or colon cancer. I could easily be in much, much worse shape than I am right now. I could be in a third world country with no available resources for cancer treatment. I could be in this first world country with no insurance. I could have no support. I could be alone. I could be dead.

Aside from that, I really get sick of one-downsmanship. I mean, here I sit with the trump card for almost any one-downsmanship faceoff, and I refuse to play it. In public, at least. In my head, I’m thinking “Oh you poor thing, there with your sore throat you’ve been whining about for the past three hours. I’m glad I only have CANCER to deal with!” Not that I’ve become a less caring person, but come on.

Another large part of my story is support. A big thing that keeps me going are the supportive emails I get from all of you out there, whether family, longtime friends, newfound friends or random folks who stumbled across the site. Each word of encouragement helps me lift my head and prepare to fight the next battle. When I see folks in person and they give their support, I get lifted a little higher yet. You people play a big part in keeping me going, and I do thank you for that.

The last thing is a world premiere. I’m pretty sure I gave Barb a sneak preview awhile back, but as Barb is basically a part of me, this is the first time I consider it to be telling someone else. The biggest secret that keeps me going was a revelation I had awhile back. I don’t remember when it was exactly, but Barb probably knows. She’s the part of me that remembers things.

One day, I was thinking about this whole Cancer Experience. I was thinking about fighting, I was thinking about winning and I was thinking about losing. Mostly, I was thinking about giving up. Let me rephrase that. I wasn’t thinking about actually doing the deed and giving up, more like I was thinking about what “giving up” required. What thing in your body or your mind would have to change to make you quit. I’ve heard of people with other cancers who have relapsed, often multiple times, and have decided to just let the cancer take them. The treatment was worse than the illness, so they’d rather enjoy things while they could, rather than go through the agony of more chemo or more radiation.

I was reading someone’s blog or maybe just a story about someone with some other kind of cancer. One of the bad ones. They had recently made this decision themselves and were going through the process of dying. Something in their story or in their words finally made a connection fuse in my brain.

You see, up until that point, I was fighting this thing under a major misconception. Not an actively thought out one, mind you. Just working under a notion I hadn’t thought about or thought all the way through. Up until I finished that story, I thought of the death option as a light switch. If I got to the point where I decided to give up and let the cancer take me, it would be over. As if the mere act of giving up and deciding to die would flick this life/death switch to “death” and it would be all over and done with.

I should interject at this point that I’m not a stupid person. I’m merely of an age where I’ve never really thought about death from illness. People in my little world died from car crashes and hurricanes and freak accidents and heart attacks – things that take you rather quickly. Therefore, the people dying from cancer and old age and disease all went the same way in my mind. Sure, I know these aren’t quick deaths, but I never really sat down and pondered what one of these would be like. Have you, little Mister/Miss Healthypants?

Once I thought about it, I was stunned at just how idiotic my subconscious notions were. Giving up on this thing isn’t an easy out. Dying from cancer is a horrifying process. To die from cancer is to lose pieces of yourself little by little each and every day until there’s nothing left. Not only does it steal you away from your loved ones, it steals you away from yourself.

Above all else, this has become my primary driving factor. Not necessarily a will to live, or an urge to not die, but a definitive goal to specifically not die from cancer. I have no fears of being shot or stabbed or killed in a horrendous car wreck. Drowning and burning are still in the top three of ways I don’t want to go, however. But more than anything else, I’ve made a vow to myself that I’m not letting cancer take me. I am not going to give in to disease. I am not going to waste away. I am not going to lose myself. No matter how dark the night, how early the morning or how dismal the test results, there is one thing I can promise to both you and myself with no doubts in my mind or heart.

I will not give up.

Imagination… is Funny

Posted on by Brian

Okay, so my imagination works a little too well at times. Because of this, I’ve often been hosed when it comes to being alone in the dark. My ears hear a noise and my brain starts going crazy, thinking of all of the horrid mundane and supernatural things that could have caused it. This old house (our house, not the TV show) doesn’t help very much.

Barb is in Boston tonight. I’m here alone in Hartford. I’ve been up a little too long, so my mind and ears are having a blast. Ever see the Simpsons where Marge left Homer alone with the kids and when she got home, there was a huge hole in the front door and Homer and the kids were hiding behind the couch, scared out of their minds?

Welcome to my world.

Now, I was preparing for things to go a little crazy tonight, just because I learn from the past. There’s one thing I didn’t count on. You see, there’s one room in the house I’ve never liked. I’ve just gotten a bad vibe every time I’ve gone in there. I affectionately call it The Room of Evil. If I’m alone, I stay out of there and keep the door closed. If I have to go in the room, I go as fast as I possibly can.

Is it possible for a second floor room to be built over an indian burial ground?

So tonight, just a mere few minutes ago, I decide it’s time to turn in. Flashlight? Check. Hockey stick? Check. Backup hockey stick? Check. I’m settling under the warm covers, ready to be lulled to sleep by the hum from all of the lights on the second floor burning brightly, when all of a sudden…

CRASH!!

Actually, much louder than that, but I’m too freaked out right now to mess with my CSS.

I grab a stick, find my glasses, put on my slippers and investigate. A picture just up and decided to fall off the wall. Makes perfect sense. And where was the picture? Outside The Room of Evil.

Bloody Hell.

Just know that if I happen to not make it through the night, it wasn’t the cancer that killed me. It was the house.

It’s not Art.

Posted on by Brian

I had one of those “stuck behind an idiot in the faster lane” revelations this morning on the way to work. Basically I have a new second mantra that deals with the non-cancerous portion of my life.

Let’s go back a bit. You see, I have ADD. One of the symptoms of this is getting very easily overwhelmed by things. At least for me, that’s a biggie. One of the ways I do this is by paying attention to all of the little miniscule details of things, especially anything creative. Then, if I have more than one creative thing to get done, I see all of these miniscule details, shut down and don’t do anything.

It’s not Art.

That’s what I’ve decided to start trying to tell myself. I realized this morning that I always take some Higher Approach to anything creative I do, like it’s going to wind up in MoMA or something. Photography, woodworking, sewing, programming, designing, writing… I never quite do these things for myself. There’s always this Other who will eventually see and judge everything I do. Why? Because it’s Art!

Idiot.

So now I’m going to try to leap over this huge mental obstacle of mine so I can actually get things done and possibly enjoy doing them.

That would be quite a change.

I have this image of styrofoam in my head

Posted on by Astro

Two little facts of life occurred to me today:

1) If your girlfriend makes you wonderful cookies with powdered sugar on the top, don’t take them back to your computer to eat. The slightest puff of air from your face, be it nose or mouth, will coat your keyboard with a light white powder.

2) One of the more disgusting feelings in the world is to be convinced that a glass is full of Sprite and realize in mid-gulp that it’s ordinary water. I have no problems drinking water, but when you’re expecting bubbly and sweet you’ll probably do a Danny Kaye spit-take too.

A thought on thanking

Posted on by Astro

After writing the aforementioned email to Patrick (no, not Patrick Stewart – keep guessing), I realized that I did a lot of thanking in the email and the added one on this site. Well, maybe not an effusive amount, but enough so that I noticed it. Mostly, it’s due to a philosophy change on my part. Well, maybe not a philosophy change. Change of outlook? New goal? Resolution?
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