Archive for the 'Cancer' Category

I Feel Like a Kid Again…

August 22nd, 2007

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

June 22nd, 2007

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

June 14th, 2007

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

March 12th, 2007

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.

Oops… Still Alive.

December 5th, 2006

You know how sometimes you’ve got this nagging feeling that there’s something you should have done, but can’t quite put your finger on it? It turns out that in this case, that thing was you, my lovelies. Or at least giving you guys the latest updates in Moondoggieland.

Actually, it’s not so much a forgetting as it is a remembering at the wrong place. Like thinking of posting something when I’m downstairs and worn out from a day’s work and two hours worth of sleep the night before. Then it all reaches that awkward point where there’s so much stuff to tell that I’m too tired to sit and type for long enough to get it all out. But you know what I discovered today? Stuff keeps happening. So I’ll just start typing and we’ll see just how updated you get.

First off, the biggest news I’ve been keeping from you, my loyal and adoring fans. I had a PET scan last Monday. This was a follow-up PET scan, specifically to check up on the cancer. Unlike those previous ones that were mainly to check for infections or weird pains and such. Last Tuesday, I visited SuperCoop for the answer.

I am cancer-free.*

In deference to my parents and grandparents, I will say “Holy expletive EXPLETIVE!”

No wonder four letter words are so easy to use – “expletive” is hard to spell and doesn’t quite look right.

So can you imagine how excited and thrilled and overjoyed Barb and I are? I can guarantee that you can’t, because you’d probably overguess us by a mile. It’s not that we aren’t all of those things, it’s just that our minds haven’t grasped the meaning behind the results enough to let us be ecstatic and giggly. In fact, I think some people are a little concerned with our rather nonplussed attitude. My current theory is that we’re so used to hearing bad news and expecting bad news that we haven’t fully figured out how to act when good news hits.

It does seem to be sort of time-released happiness, though. I’m definitely more happy, excited and giddy about it that I was last week. This time next week, I may be wetting myself with joy. We’ll see.

You might have noticed the asterisk on the diagnosis. That’s another reason we can’t be 100% ecstatic right now. Remember The Itch? The Itch that started this whole ride and would occasionally rear its ugly head? It’s been back in full force since just before Thanksgiving. Wasn’t this supposed to be caused by the Hodgkin’s? We all thought so. But hear I am, clean PET scan under my belt and torn up, scratched-through skin everywhere else. SuperCoop is rather stunned, since my PET looked so good. He checked me over and found one lump behind my collarbone that was negligble. He said with my PET results he wouldn’t think it was anything, but with all of this itching, he wants me to see an ENT and get checked out by someone specifically concerned with neck stuff just to be sure. He also recommended I go back to my dermatologist to see what he thinks. As SuperCoop said, since it doesn’t appear I have any cancer right now, there’s not much an oncologist can do for my skin.

I saw my dermo on Friday. We’ll call him Dr. Heald ’cause, interestingly enough, that’s his real name. Dr. Heald gave me a good looking over and tossed out a few theories.

  1. This itch we’re seeing is The Itch of 2003, which never really went away. You see, with most of my chemo treatments they would give me various steroids to keep down inflammation. That also keeps down itches. This rings true, ’cause looking back through my blog before the appointment to write down my full medical history (damn, these things are useful) I saw a recurring theme: I’d go through chemo, then a few days to a week later I’d freak out ’cause the itch was back. Not every time, but repetitive enough that I was surprised I didn’t pick up on it sooner.
  2. The itch is something new. That’s kind of a given, if it’s not the old one, it has to be a new one.
  3. The itch is something weird from the stem cell transplant time. There are a couple of possibilities with this one. One is that I picked up something weird in that post-sct time when my immune system was compromised. Maybe I have monkeypox after all. The other possibility is just that something weird happened. That one’s less likely, since my stem cells came from me. In scts where someone else is the donor, he said there have been instances recorded where really weird things happen. For instance, say Barb is giving me her stem cells and let’s pretend she has psoriasis. Turns out, there’s a good chance I would wind up with psoriasis by taking her stem cells, even though I didn’t have it before then. Weird, huh?

Right now, the theories are academic. We won’t know much more until we get a biopsy (which he did last Friday) and we have the results (which we get this Friday). In the meantime, he gave me a really strong antihistamine to take and some Elidel cream for my blotchy face. I dropped off the prescription after work and picked it up to find in my bag a tube of Elidel and an antidepressant. Pardon? I called Barb to make sure I heard Dr. Heald right. Yup, she heard “antihistamine” too. Huh.

Naturally, this is all Friday night, after doctors have left the office. All I have to go on is that he told me it would put me to sleep that night. The three nights previous, I had two, two, and four hours of sleep. This pill said “May cause drowsiness” all over it. Good enough for me. I get home, take the pill and go to bed at 10:00.

I wake up at 2:00 the next afternoon. Holy crap! And I wake up groggy too, like if I wanted to, I could’ve squeezed in a couple of more hours. Nice! The effect wasn’t as strong as my itching Saturday night or Sunday night and I’m back down to around four hours of sleep again. I called the office early Monday morning and they confirmed that while this is an antidepressant, it is also a strong antihistamine. The trick to it is, it’s one of those drugs that has to build up in your system before it starts to really work. The little Walgreen’s drug sheet just says it may take “several weeks.” Doc says the good thing about this drug is they can actually measure it through my bloodwork and see how well it’s working. My itch does already feel different. It’s not as… urgent. Like, sometimes I can almost ignore it for a little while. If I do happen to scratch, it gets just as maddening as ever. Hopefully this will improve with the ensuing days.

Oh, and just in case someone stumbles across this page on a random Google search (I’ve been seeing a lot more medical questions coming this way since I was diagnosed), I’ll state it plainly. The antidepressant doxepin is also a powerful antihistamine and can be used strictly for that purpose. I’m living proof. See the above paragraph if you skimmed to the good part.

So that catches you up to my life now, health-wise. We still have technology-wise and life-wise, but those will have to wait until another day. Now it’s time to go rest my weary hands.