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.

Oops… Still Alive.

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.

The Plans for Tonight

Well, it’s time for the End-of-Cancer present we’ve all been waiting for! Barb’s taking me into NYC today to see… The Colbert Report! If you have Comedy Central (11:30 EST people – get a nap today after work!), be sure and look for a bald guy if they happen to show a shot of the audience (it’s the Colbert Report. It happens.). Tonight we get to see Dr. Michael Novacek, dinosaur hunter – you know what that means: EVOLUTION DEBATE! YES! Al Franken’s supposed to be there too – sweeeeet.

You might have noticed I alluded to being bald. While I’ve had some hair grow back in since the stem cell transplant, what was there was short, fine and babyesque. I decided to shave off what I had in the hopes that stronger stuff might come out. Plus, it’ll make me easier to spot in the audience 🙂 It already feels like a good idea, ’cause my head feels a lot stubblier than it did when this stuff was growing back on its own. It looks slightly weird though, ’cause the stubble gives my head a sort of blue tint. Maybe that’s just what color it’s going to be growing back as.

Back to Work I Go

Well, I did it – today was my first day back at work. That would be Day +122 for those of you keeping track of such things. I myself had to sit down with a pen and paper and do the figuring, so that number might not be right anyway.

Work went well. I’ve forgotten a lot of programming stuff, but I’m well underway in re-learning it all. I went up and down the stairs four times and was quite bushed when I got home tonight.

In other news (since I did no posting in the month of October – for shame!), we’ve rented out the Hartford house! They’re a nice young couple and love the house. So much so, that they’ve mentioned a couple of times that they really want to buy it when the lease is up in April. Cross your fingers that we have a mild winter so they won’t be freaked out by the gas bills. This came just in time for us, since we can now take the house back off the market and someone will be there to shovel the walks and keep the pipes from freezing. Plus, they’re covering most of our mortgage payment, which always helps.

Of course, the very day that the lease was signed and we got the first/last/deposit check, Barb’s check engine light came on. Then my airbag light went on. Barb’s car is gonna cost us $2600 to fix, and I’m pretty sure mine’s a short in the dashboard, as it does other weird things. For the truck, we’re doing research on trading it in and getting something that’ll be safer for me to drive in the winter. That’ll give me something else to write about out here, at least, right?

We had a moderate number of trick-or-treaters last night, with the best being our little next door neighbor. Her brother was dressed as Anakin and she was something furry (both near ten-ish). She asked Barb if Barb could guess her costume and after a little pause, perusal and a couple of spins, Barb asked “Are you a squirrel?” She was overjoyed, since in fact, she was a squirrel. Barb mentioned that squirrels were my favorite and how I take care of my little buddies. Turns out, they’re constantly feeding the little guys as well. No wonder we have such fat squirrels in our neighborhood!

One last sad Halloween note – I came very close last night to reporting some parents for child abuse. We had to return some pants I bought earlier in the day and around 7:30 the trick-or-treaters had slowed down to a trickle, so we went back to the store. When we get to the store, it was us, the employees and a family consisting of two parents and two kids, both within trick-or-treat age. Not only were the kids not dressed up for Halloween and out trick or treating, but they were in a clothing store SHOPPING FOR SHOES! Sure, if you have some wacked out religious beliefs, you can keep your kids from celebrating pagan holidays like Halloween, Easter and Christmas, but to instead take them shoe shopping? That’s just cruel and unusual.

Oh, and a quick website note – I’ve added some more warriors over to the Hodgkin’s Army list. If you’ve sent me your URL at some point, I probably have you added now. I’m going to make a resolution to start going through my backlogs of email and start replying to all of the people I didn’t get to reply to through the stem cell days and such. Better late than never, right? Right?

AWK! AWK! Hallelujah!

So I just returned from a trip to Stop & Shop and discovered that Father Time drives a Benzo. In the S&S parking lot, I followed a silver CL500 with the license plate “Time” driving substantially under 5 mph. After wondering if Jerome was driving it with the big mirror in the passenger seat (come on people, stay with me here) and if Morris Day was in a Beamer behind me somewhere, I got a gander at the driver. Well, not the driver so much as a little bit of his gray hair, since naturally, that’s all I could see over his steering wheel. Who new eternal beings went for German luxury?

In cancer news, I saw SuperCoop today and everything looks okay. I’m going to be getting a PET scan in November sometime and it occurs to me as I type this that I have no scheduled appointment either for the scan or a followup appointment with SuperCoop. Oh well, I guess someone will call me eventually. I also set up an appointment to see a headshrinker (the licensed kind, not the aboriginal kind) and will perhaps discuss my Father Time sighting with her on Monday.

Oh, also as I was driving to the Stop & Shop (current craving: OreIda crispers. current need: bigger freezer) and I get to the end of my block, a lady is driving towards me and preparing to turn to her right as I turn to mine. As she turns and I see the side of her car, I think to myself, “What a nice lady, showing her support for someone in her life that has cancer.”

I tootle on down the street a ways and pull up behind a car at a stop sign and think, “Here’s someone else giving us… ‘Support Our Troops’? Ohhhhh yeaaaaahhhh… the yellow ribbons aren’t for us. Crap.”

I’m not sure if this means that cancer is still very much on my mind or if I’m just really, really self-centered.

The oven might be preheated now, so I’ll leave you with those nuggets. I have more to write on what I’ve learned (eventually) and I’m also going to be getting around to answering all of your emails really soon, so don’t despair!

I’m NOT Getting a Yellow Jersey

First, the cancer update. I saw the retina folks yesterday and, after a 53 minute wait, found that my eyes are still doing slightly better. Two hours of sitting and a fifteen minute exam to find this out. I have an appointment in three months to do the same thing.

I also saw the dietician for the radiation therapy folks to discuss the types of stuff I should be eating right now, since my esophagus is acting a little wonky. Basically it boils down to avoiding spices, citruses, acidics and sharps. So no Thai, no oranges, no tomato sauce and no chips. She also was trying to paint a semi-bleak feature for me, mentioning that the esophageal effects could linger for a couple of weeks after treatment. Then she got around to asking where I was, treatment-wise. After hearing I only had three treatments left (two as of today), she changed her tune. Naturally, she didn’t realize she was dealing with a badass.

I’ve recently gotten it in my head that it’s time to start riding a bicycle. I’m thinking about getting a single speed mountain bike, ’cause I’ve never really been enamoured of the whole bicycle-shifting thing. A single speed bike is supposed to be a tougher workout that requires less concentration, which is right up my alley right now. The only problem I have (aside from finding a place that sells the one I want) is the image thing. The cancer survivor is taking up bicycle riding. You know what that means – Lance Frickin’ Armstrong. Thanks for spoiling it for the rest of us, Lance. Now everyone thinks we’re you or trying to be you. Maybe I’ll wait until my hair grows out some more, tell the shop owner I’m recovering from a shark attack.

Okay, Call Off the Dogs

Wow, a month can go by pretty quickly when you’re not paying attention. Let’s see how quickly I can get you folks caught up.

In my last post, I thought I’d be admitted to the hospital later that day. I was right. After a nuclear medicine study of my lungs and an echocardiogram, I was eventually admitted to the hospital. The primary reason for the admission was because SuperCoop wanted to have a CT of my chest done with contrast (aka x-ray dye). This stuff is iodine based and rough on the kidneys, which isn’t good when you’ve recently had renal failure. Thus, he wanted me in the hospital so they could overhydrate me and give me a drug called mucomyst, which helps protect the kidneys.

Long story short, I was in the hospital for six days and all they could come up with was a little pneumonia. In addition to the echo, nuc med and CT studies, I also had an MRI of my C-Spine and T-Spine (neck and upper back). Turns out I have a slipped disk around T-5 T-6 or T-6 T-7. Maybe it was T-7 T-8. Anyways, it was apparently an old injury but interesting to learn. Not quite worth the fifty minutes straight in the MRI tube, however.

Oh, and I got to meet with the radiation therapy folks who did my simulation on Friday (a CT exam that lets them figure out where they’re going to aim the radiation). I then receive three tiny tattoos in the form of black dots.

Immediately upon leaving the hospital that Saturday, Barb took me home so I could shower the hospital off me. Then we went to Moe’s Grill for a burrito and stopped by the movie theater to see Little Miss Sunshine. Great afternoon and the way everyone should get to leave the hospital.

The next week or two I was pretty depressed. Not sad depressed so much, but a combination of blah depressed and “don’t feel like doing anything” depressed. Unfortunately for you folks, that means no web updating.

Two Thursdays ago (9/7), I started developing a pain in my left shoulder. Initially it just felt like I slept on it wrong, but by Sunday it had progressed to an unrelenting stabbing pain down through the top of my shoulder. Put your hand on your shoulder. Not there – more between your shoulder and your neck. You know how you can sort of feel the gap in the bones there? That’s where the pain was.

Last Monday the radiation folks look me over and say it’s not ’cause of them, since this is out of the radiation field. Unfortunately, they don’t have the power to order random x-rays and such over at the hospital, so they recommend I go through the ER. Incidentally, everyone at Yale calls it the “ED,” which I know stands for “Emergency Department” (after having the first person who used this acronym repeat it three or four times), but it’s still wrong. An ER is an ER, not an ED. If anything is an ED, I would say a school is. Especially if it’s special.

Anyway, I go over to the ER and they zip me right in again (let’s hear it for cancer!). They take a chest x-ray and think they see some pneumonia. Guess who’s going back in the hospital. This time I’m in there for four days. This time was quite exciting because the floor just got brand new beds.

It really sucks that I know this.

After I had been there for a couple of hours, SuperCoop comes in the room, eyes all agoggle. “What are you doing here?”

I figure he’s joking and start gushing at length about the cool new bed (it was quite impressive after the clunkers they used to have, believe me) (still depressing). He stops me as I’m showing him how the head of the bed goes up and down silently to say, “No seriously – what are you doing here?”

Turns out the ER folks had been talking to SuperCoop’s fellows, who had neglected to relay to him that his star patient was causing trouble again. He was on the floor making his rounds and just happened to notice that my name was on one of the doors. Comforting.

So after four days and a few more random tests, I leave the hospital minus the shoulder pain and any knowledge as to why it might have occurred. It just stopped around the third day (same day I had a shoulder MRI), so they figured they couldn’t hold me there any longer. Damn straight.

So now I’ve decided that if anything hurts or feels weird I’m not telling anybody. Every time I do, I wind up in the hospital for a week. I’ve also decided that I looooooove dilaudid (aka hydromorphone). Up until this point, I’ve had a lot of different pain meds and I’ve remained puzzled that people get addicted to them. I’ve had morphine, percocet, darvocet and a lot of other pills you hear about suburban wives getting hooked on. As soon as I stopped hurting, I stopped the pills, no problem. No desire whatsoever to continue. After this stuff though, I understand. Aside from twisting my reality a quarter turn and knocking me on my ass, it left a definite impression in my brain that I liked what just transpired and would be quite happy to have it transpire again. Scary stuff.

Skip forward to today. I have four more radiation treatments (out of an original 20) as of today’s treatment – Monday will be my last one. I have a little bit of a sunburn on my chest and back where the radiation shoots through, but my skin’s been holding up pretty well thanks to early glooping of Aquaphor on the affected areas. Internally, I’ve been having some esophagus troubles. Originally, this consisted of a burning feeling right around the esophagus/stomach juncture. Now it’s turned into more of an indigestion feeling which sometimes morphs into… Have you ever swallowed wrong and it feels like your esophagus either gets a knot or swallows backwards? That’s kind of what it feels like. Often. But not enough to really bother me – just annoy me.

I think that does it. Today’s been a better day than usual – I replaced one of the headlights on my truck and got a spare key made for the house after locking myself out this morning. Idiot. That’s been safely hidden (no one looks under mats, right?) and my squirrels have been fed. You think I haven’t written here in a long time – it’s been even longer since I’ve fed my poor little furry buddies. They were going apeshit today over the piles of peanuts that suddenly appeared all over the deck. Eventually I’ll get around to taking some photos.

So, that brings you all up to date. Aside from locking my keys in the house, this has felt like a pretty good day, so hopefully that bodes well for keeping the blog up to date. Hopefully.

Can’t Stop… the Music…

First off, I have to say I have no idea why I have “American Pie” stuck in my head right now. I must have done something really bad in a previous life, so this is my punishment. Well, this and that cancer thing.

I’m currently awake not because of Don McLean, but rather because of my head swirling into another deep depressing “I’ve got cancer” spiral. I’m not sure how I got to thinking about my previous career as an x-ray tech (in February it will be ten years since I’ve taken an x-ray. Man, I’m old), but somehow it spiraled and coalesced into more greiving about my current situation.

Perhaps grieving is too strong a word. This is nothing like last Wednesday’s breakdown. Merely more of a tired re-pondering of my current life. In the movie world, I’m somewhere between “Snakes. Why did it have to be snakes.” and “I’m getting too old for this shit.” So yeah, more tired than sad. In either case, it’s keeping me awake right now.

On Thursday, I saw SuperCoop to get the rundown on what’s happening to me next and when. All of the fun starts next Thursday, the 6th of July. It’ll be much as we expected way back in February – high dose chemo (BEAM) followed by the stem cell transplant. About a month after the SCT, I’ll get some high dose tightly collimated radiation to my mediastinum. For those of you who are scratching your heads, that means I’ll be getting a tight beam of radiation to the center of my chest. Here’s sort of what my upcoming schedule looks like:

Day -6: receive the “B” of the BEAM chemo: BCNU. I already forget what that stands for, but it’s long.
Days -5 through -2: I get the “EA” portion – Etoposide & Cytarabine. I think the Cytarabine is the “A.” I know, but what can you do? I get the drugs at the clinic in the morning, then again at night at home by a home care nurse. Two of the treatments are on Saturday and Sunday, so morning and night doses will be given at home.
Day -1: I get the “M” drug, Melphalan.
Day 0: I get my stem cells back. SuperCoop says it won’t take me as long as most, as we collected all of my stem cells in one day, which means they should be in one bag. They give me the cells back and super-hydrate me to help my body get rid of the extra red blood cells that were in with the stem cells. Once there’s no more blood in my urine, I’m free to go. One other thing to note, I will reek of creamed corn due to the preservatives they kept my stem cells in. Good thing I already hate the stuff.
Day +1: Rest day. As long as I feel okay, I don’t have to go anywhere.
Day +2 through Day +12: Show up at the clinic each morning for bloodwork, IV fluids, neupogen (yay.), anti-nausea meds and anything else they might need to pump into me.

After that, everything pretty much depends on how I’m feeling and how my counts are doing. Yay.

In happier news, we’re continuing to get our nest padded and organized here at Dogwood Place. It’s a weird experience after Whitney Street. In Hartford, we spent so much time just making it liveable that by the time we were able to live in it, we had already decided to get it ready to sell. Rather than making it a home, we began making it ready for someone else to live in.

Now we have our real home and what should be our last one. It feels so much different when we’re doing things here, because every action has a certain… permanence. I was going to say “finality,” but us cancer patients shy away from that word. “Permanence” gets the point across though, I think. The things we’re doing to this house are not to increase the selling value, they’re to increase our enjoyment and comfort. As I’m lying on the floor, upgrading our electrical system from two prongs to three, the thought hits me that this may be the last time I ever do this in our house. Once every outlet has three prongs, I’m done with that job. We won’t be moving on to another place that I have to do electrical work on.

The thought astounds me.

I think the idea of permanence has really helped out my perfectionism as well, at least in the arena of home repair. While there’s still a needling need for doing things perfectly, since this is Our House, I can now sometimes take the broad overview and say to myself “It isn’t absolutely perfect, but it’s good enough to last for twenty or thirty years until it drives me crazy and I have to make it perfect.”

That being said, I still have yet to get everything moved into my workshop, as everything there naturally has to be “just so.” I tell myself it’s just because it’s a small space and I have to make sure I have enough room to do what I want, but deep down I know the real reason.

He’s Back Again

Hey Gang

Well, we’re finally back on the net at the new house, so I can go back to keeping everyone up to date on what’s happening in the World of Me.

I made it out of the hospital the Friday before last, though it was a bit touch and go due to the recovering heroin addict sharing my part of CCU. Apparently wherever they go to dry out was full, so they were keeping him there with a 24 hour a day babysitter. I wake up the first morning hearing “Here’s your Ativan… and here’s your methadone.” Lovely. He did okay the first day, but then started flipping out more and more as the week went on. I didn’t get a lot of rest.

To top it off, it was astounding how slow time moved in CCU. Barb stopped by the first morning and then headed off to work. As the hours passed, I figured she must have said something to me about stopping by after work. Maybe she had a meeting or something for lunch. So I slept and I laid there and I waited and I waited. Finally, 5:00 must have arrived, because Barb was back! That’s the good news. The bad news was that she was indeed back for lunch. Rather than an eight hour wait, she had only been gone for about two hours. This time disjointing continued all through the week, with the nighttime being the worst of it all. Especially when the junkie would decide he needed to sweep around his bed at midnight.

So everything happened pretty quickly after that, getting the catheter out, the chest tubes later and eventually being plopped out on the street. I got to come home and recuperate in the new house and it was a very good thing. We were still planning on me overseeing the movers on the following Monday (last Monday), but Sunday night my fever started spiking, so Barb had to be in charge of the move. I must be worn out from all the chemo and such to not be able to follow around movers two days after being released from the hospital, right?

So Monday came and the movers did a fanTAStic job. They were incredibly nice and friendly, fast and strong. If you have to do any kind of house move, give Joyce Van Lines a call. I believe they’re based here in Connecticut, but give them a try if you’re elsewhere too. We had heard lots of horror stories about movers and moving companies, and not a single one of them came true with these folks.

So now we’re going through the whole unpacking thing. Between Barb and Bev and Mary, the first floor’s starting to look pretty presentable. I think I’m finally healed up enough to start lifting things, so I’ll be able to help out more as well. There’s nothing more frustrating to me right now than having all of these people (and mostly women at that) buzzing around me, doing all of this work and not being able to join in. Not to mention getting yelled at for trying to help out. Yes, I’m supposed to be resting and healing, but come on.

On Wednesday, SuperCoop gave me a call. He had the biopsy results, which showed Hodgkin’s Disease in the thymus. He said the best result we could have hoped for would be either an active thymus (the thymic rebound thing) or a thymoma. The one good thing about HD being found was that Dr. Detterbeck was able to remove about 90% of what he found, so that means a good portion of the HD has been physically removed from my body. Plus, hopefully that area won’t light up on PET scans anymore.

SuperCoop told me that depending on what Detterbeck thought about my healing, we could go right into the high dose chemo and stem cell transplant. He said that could be as early as this week or the next.

I thought I was okay with this, but a few hours later, the magnitude of it all finally hit me. Going through chemo again. This time, going through something worse than any of the others I’ve been on. The long road to recovery. The side effects. I had myself a pretty good little breakdown. I’m just so tired of it all. Tired of recovering. Tired of weird things happening to me and thinking it’s probably just a side effect of some drug I’m on. Tired of being a happy little soldier. Tired of fighting.

So now, I’m taking my own mini-break from cancer. I’m not going to be looking in on the Hodgkin’s forum every few minutes. I’m not going to think about cancer. I’m not going to think about the future or the past. I’m just going to be. I saw Detterbeck on Friday and he said SuperCoop can start on the new stuff whenever he wants. I see SuperCoop at 5 on Thursday to get the gameplan. Until then, I’m going to do my best to forget I’ve got cancer.

I’ll still be posting stuff out here, of course, but for the next few days, it’ll more than likely be non-cancer related. Thursday will be here soon enough. In the meantime, there’s plenty to be doing here around the house. Unpacking, storing, organizing, building… and if all else fails, I just sit and watch the squirrels.