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.

(more…)

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.

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?

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… 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.

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.

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.

So it’s time for me to go on another Doctor Quest. That is, a quest for doctors, not a father of an intrepid young explorer, his Indian friend and small dog. I’m getting ready to begin my quest for both a primary care doc (haven’t had one really since my cancer diagnosis) and a shrink. The ADD’s been getting pretty bad as of late, and I need someone who can tell me whether it’s that acting up or chemo brain. Or both. The fun never stops.

Since the shrink may very well prescribe meds for me, I gave my favorite Kathryn a call to see if she could make a list of all the different chemo regimens I’ve had. She was able to, and holy moly. Turns out, I’ve had sixteen unique chemo drugs in the past year. Even wound up having a few of them twice. How’s this for a list of ingredients:

• ABVD: doxorubicin, bleomycin, vinblastine, dacarbazine
• ICE: Ifosfamide, carboplatin, etoposide
• No-name #1: Cisplatin, gemcitabine
• No-name #2: Ifosfamide, gemcitabine, navelbine
• British MOPP: Chlorambucil, vinblastine, Procarbazine, prednisone
• BEAM: BCNU, etoposide, cytarabine, melphalan

Wow. That’s one thing about SuperCoop - he’s thorough. I was doing a bit of research on some of these and whenever there’s a family of chemo drugs with subsets, I’ve pretty much had one from each of the subsets. It’s all quite impressive when you lay it out on a big piece of paper. I would hate to be the doctor figuring out my drug interactions for the next couple of years.

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?

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!

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.

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.

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.

Figured I should put up a quick post since I think there’s a pretty good chance I’m going to be back in the hospital today. I don’t know if it’ll make any sense, since I’ve been whacked out on pain meds since yesterday and I’m still a little loopy/shaky.

Thursday when I saw SuperCoop, I had started having some chest pain. It was primarily in my sternum and felt a lot like the old Neupogen/Neulasta type of bone pain. It would appear rather randomly, though elevation changes (going from standing to sitting to lying down) would usually bring it about. I initially felt it was probably just my brain causing the pain, since that’s the area we were going to be discussing. I told Dr. Kang about it at the start of the appointment, then didn’t think of it again after he asked me some questions and did some poking around.

Friday was the same as Thursday, though maybe slightly worse. Saturday was horrible. I tried to put up with it for as long as I could, but it was too much. It had gotten to the point where if I was sitting up in bed and slid down a little, it would hurt. My cough also started getting much worse as well. The pain is a throbbing sort of pain that seems to be tied in with a really strong/hard heartbeat. You know how you can feel your heart pounding after you’ve held your breath for a long time? That’s the heartbeat thing. Imagine having that happen to you after your sternum’s been broken open and you’ll have an idea of what this is like.

Aside from the elevation changes, by the afternoon the pain was happening to me at random times when I wasn’t moving. We called the oncology fellow and he had us go to the ER. You want to get a private bed super fast in the ER? Be a post-stem cell transplant patient with chest pain. Not only do you get hooked up, everyone listens to you.

They took some blood and blood cultures and a chest x-ray. Everything came back normal. The doc came back in and said SuperCoop wanted to see me Monday morning. We walk out of the ER and suddenly my chest feels better. As Barb will attest, I did a lot of cursing at that point, as it seemed my stupid brain had indeed been pulling one over on me. I was miffed to say the least. Then, around 11:00 at night, the pain started coming back.

I woke up around 3 AM in searing agony. In addition to the whole chest thing, my left arm (that I was lying on) felt like it had been ripped out of the socket and poorly reattached. The coughing was worse, which didn’t help the chest or the arm. I finally found some of my pain pills and started popping them down. They don’t completely take the pain away, but at least make it less frequent.

Sunday was pretty much complete hell all day long. I couldn’t really sit comfortably or lie down comfortably or stand comfortably or walk… you get the idea. In addition, my head’s in the clouds from the drugs and my arms and legs are all wobbly. The pain at this point seems to be all around my chest cavitiy - back, front, shoulders, sides - if I cough or burp or breathe, different parts shoot pain through my body.

So yeah, today I’m pretty messed up and I’m getting ready to go see SuperCoop. Something bad is going on inside me and I don’t know what - I can only hope that they’ll know at the hospital. I’m figuring that they might hold me there ’til they get it all figured out or that this might be some kind of infection (can the lining of your lungs get inflamed and infected?) for which they’ll need to pump me full of IV antibiotics. Whee.

Mom and Dad - I’ll give you a call later tonight to let you know the verdict and where you’ll be able to find me. Everyone else, I’ll be back to posting whenever I’m back to posting.

Hey gang

Sorry I’ve been quiet lately - I saw that there was some franticness a bit earlier before Barb stepped in with an update. We’ve gotten to another one of those tired spots, where we realize we’ve been in a constant fight for fifteen months and a sporadic fight for a couple of years beforehand. We’re both getting tired and worn out, but The End is Near. No, not that End - the good End.

I think today is Day +37. I’m a bad SCT patient, ’cause I’ve never been able to keep up with my days. Makes sense though, since most of the times I can’t keep track of the days or dates. I saw SuperCoop and he says I’m ready for radiation. I got a call from the rad onc’s office a little bit ago and I’ll be seeing him on Tuesday. It’s either Dr. Rogers or Dr. Roberts, I would assume that depends on how beautiful Tuesday is in his neighborhood.

The actual results for that PET I had in the hospital were in, and said pretty much what SuperCoop told us - other than the kidney problems at the time, no Hodge was showing up. No talk of NED or remission or the like, but they agreed that the alien is gone. Not a whole lot of celebrating in the room, primarily because SuperCoop had already mentioned this and after going through surgery, it had better not be showing up. Plus SuperCoop was a little miffed that the thoracic oncologist got all the credit. “It says it’s gone after the surgery, but I gave you chemo afterwards to get rid of the stuff he missed and I don’t even get a mention!” I did notice that he was mentioned as being there looking over their shoulder while they read it, though I believe the phrase “pain in our ass” was redacted. SuperCoop’s the Man.

So now I just wait for Tuesday to see what/when happens next. My tastebuds are still majorly out of whack, but I discovered last night that Eggo’s taste good, so I’ll be burning myself out on those pretty soon. The homestyle flavor, not any of those fancy city-boy flavors like blueberry and whatnot.

So far, other than the mental struggle, that’s been the worst thing about the SCT experience - the tastebuds. They’re so screwed up it’s hard for me to eat, so I don’t get any energy, so I’m weak, so even when I feel up to eating, I’m too tired to do anything about it. If I could just get the food thing going, I’m sure I’d already be over this - it’s just at this point, I can feel the little bit of energy I have drain out of my arms and legs when I try to do things. Everyone says I need to force myself to eat, but there are very very few of those everyone who know what this is actually like.

The one thing I’ve found that’s consistently good to eat - Taco Bell crunchy tacos. Go figure. So far I haven’t burned myself out on those, but I am getting to the point where I can’t look at sweet or sour stuff anymore.

Since I feel like I’m just rambling at this point anyway, I’ll bring up my latest eye exam from the day before yesterday. The band of color I was seeing has mostly faded away, though I’m still seeing the arc in my right eye. I saw Dr. Portela, retina fella (if that didn’t make you laugh, say it out loud), and she said the spots they saw in my right retina a couple of weeks ago are getting smaller. They still don’t know if that’s the cause of the band or what else might have caused it if it isn’t, but at least things seem to be improving. This time I wait a month before a re-check.

So there you have it - the latest on me. Now I’m going to go crawl back in my little cave for awhile again. I’m sorry I’m not posting more, but I’m a little too tired to censor myself, and I’m afraid of letting out something bitter and angry in my current mood. You all know how that goes - good days and bad. So, once I have another good day or Tuesday arrives, I’ll be seeing you again…

(and lights)

Today was a busy busy day. Well, it didn’t start off that way. I spent most of the morning watching my Arrested Development DVDs, the best comedy show ever put on a network. Then suddenly after lunch, a transport person shows up to take me for my EEG. Sweet!

I packed up all of my stealables and hopped on the stretcher. You have to be taken on a stretcher to an EEG in case you have a seizure while you’re down there. I guess that way it’s easier to push you out into the street.

As we left the floor, each nurse’s station had at least one of my many doctors at it, who all waved and asked if I was going for my EEG. Okay, so maybe I groused a little about being stood up yesterday. Who wouldn’t? I asked the transport guy if it was a bad thing that every desk we passed had one of my doctors. Before he could reply, SuperCoop came down the hall toward us as well. I’m POPular

At the last desk, I met a first year opthamology resident who was going to be looking into my eyes. She stopped us and asked a couple of quick questions, then put some numbing and dilation drops in my eyes so I’d be ready for her after the EEG.

We finally made it downstairs, where I made the EEG tech’s day by being bald. Much easier to place all of the electrodes on skin than on hair. The worst for them are the in-betweeners: the chemo patients who are just starting to lose their hair and haven’t shaved yet. Talk about embarassing for both parties involved.

The exam itself was pleasant for the most part, just lying there on the stretcher with my eyes closed and breathing calmly. Then came the end portion with the Flashing Light From Hell. They were either testing my epileptic response or my patience tolerance. The thing would flash like crazy at me through my closed eyes, then I would have to open them. Are you kidding me? Then she’d speed it up. Repeat. And faster. And faster. I felt like I was in Willy Wonka’s boat ride.

The eye resident followed me downstairs and started doing some examining while we waiting for me to go back upstairs. This primarily consisted of shining lots of lights in my eyes. Then we get back up to my room. She closes the curtains, shuts the door, dims the lights… and shines more bright lights in my eyes. Only this time, she’s got this magnifying glass thing like you use to fry ants on the sidewalk! When she left, I was seeing everything through a hot pink fog. Psychedelic, man.

I called Barb to let her know what had been happening for the past few hours and the eye resident stuck her head back in to tell me she was going to take me to the eye clinic to have more people look at my eyes. Great.

We make it to the eye center and she gives a third year resident a call so he can come take a look at me. In the meantime, she looks at my eyes again using the real equipment, rather than the handheld stuff. She also finally sees my ols corneal scar this way. You see, I was a forceps baby at birth and the doc scratched my eye and the surrounding areas when he yanked me out. As I had told her earlier, this is my test when I go to a new optometrist. If he sees it, I stay. If he doesn’t, I move on down the list.

So third year gets there and starts looking at me with the wicked bright lights. Right off the bat: “Were you a forceps baby?” You’re hired, Mr. Third Year. At least that’s what I thought until he started poking me in the eyes. First he’s looking at me with the bright light and the ant-killing magnifying glass, then he’s got a stick in his other hand that he’s using to press in on my eyeball!

What are two things that eye doctors always tell you not to do? Don’t stare into the sun and don’t press your fingers into your eye sockets. Do as I say, not as I do.

So after he’s looked for awhile and confirmed first year’s findings, they go outside the room to call the retina resident fellow. As they’re doing so, they run into the actual retina specialty honest-to-goodness doctor. Apparently, it’s been awhile since third year has been in her presence, so they’re outside catching up for awhile.

There’s a reason I like dogs - I understand them. When I get bored and I’m feeling ignored or forgotten, I act out and occasionally get myself into trouble. This time, I was safe on the trouble part. I was exceedingly bored and forgotten, so I started playing with all of the equipment. I was in a typical eye exam chair with all of those neat opthamologic devices right in front of me. What else could I be expected to do?

So I pulled that light torture device to me first. Not much of interest. There was the joystick thing they play around with, but without the light being on, I couldn’t see what I was moving. Then I moved to the real treat - the superhero mask with all the little lenses. That kept me entertained for quite awhile. I really enjoyed flipping around that little “Is one better or two?” lens they’re always playing with. There’s all kinds of dials for them to play with over there. Next time you’re left alone at the eye doctor’s, give it a looksee.

Eventually, they all come in to the room (but not after I accidentally flicked all of the lights on and off. Honest, it was a power surge. I saw nothing.) and I find out who’s been taking up the resident’s time. Turns out, it’s basically the head of the clinic. Sweet! She gives me a quick exam and agrees with what the residents were seeing. The funny thing is, each one of them did the same exams, but as you went up the experience ladder, each one was faster.

Okay, I’ve kept you in suspense for enough time - the results. Basically, they can’t see anything that would definitively be causing the spots I’m seeing. They can see the floaters I have, but that’s something different. They also see two white spots in my right retina. I believe they called them something along the lines of “cotton balls.” I almost replied “nylon ass!” but was too intrigued to interject. Plus, everyone was still pink.

So these white spots could be caused by any number of things, but they think the most likely scenario is from me being anemic and neutropenic after the SCT. They want me to come in to their retina clinic on Monday morning so the fellow can take a look in my eyes with bright lights and poky sticks and they’ll also take a photograph of my retinae so they can see how they change over time. Basically, the cure for these white spots is to wait it out. Once whatever caused them is fixed, then they’ll eventually go away.

I received some great and glorious news when I returned to my room - I’m getting out tomorrow! They said if I really wanted, they could rush things and get me out tonight, but they’d prefer it if I stayed on through the night. For once, I’m not going completely apeshit in here, and I think that’s primarily due to this here laptop. Thanks again for letting me borrow it, Sue - you’ve saved my sanity, such as it is.

So tomorrow morning at some point I get to go home and see if we can do things right this time. Yay!

Okay, I have my Rice Krispies in me, so let’s see what else we have to cover here. If you need to catch up, scroll down for parts 1 & 2.

The neurology team has been by a few times, specifically the oncology neurologist. They’re interested both in the spots I’m seeing and some of my more interesting pre-cancer history. They’ve done all kinds of neurology tests and tricks (spell “world” backwards) and at some point I’m supposed to be getting an EEG. Yesterday, the nurse stopped by at 1:30 and said I’d be having the exam in a few minutes. Since Barb was here, I had her take the laptop and various other stealables back to her office. The EEG never happened. I was going bonkers by the time the dinner trays got here. At that point, I was ready to refuse to go - they can make me wait, but they can’t make me miss food. Luckily for them, they didn’t show up.

So theoretically today I’ll be getting an EEG. We’ll see. I’m also supposed to be seeing a retina doctor at some point today as well. This should be interesting.

Let’s see, what else is happening with me? The cough is still there, though getting a little better. Previously, I would cough when I changed positions (lying to sitting, sitting to standing, etc), laughed or talked for too long. Now it just happens at random. I’m having occasional headaches, pounding like migraines, but not as consistently there. Like, I’ll feel okay just lying there, but if I sit up or cough, WHAMMO!

They did half of a sputum sample test on me the other day. Respiratory comes down and makes you breath in some noxious vapors for half an hour. These vapors make your lungs produce some mucous, which you can then spit up into a cup for them. Lovely, right? This is to see if I have PCP pneumonia, the big ugly one that affects people with suppressed immune systems. It’s one of the main things that historically kills AIDS patients, for example.

So the test itself is performed twice, two mornings in a row. However, the second day was the day after my kidney biopsy and the docs all thought it would be a bad idea to intentionally make me cough and hack for an hour. They called off the second day, so I don’t know if we’ll get half the results, or if we just have to do the whole thing again. We’ll see.

Okay, I know there’s a lot more that’s been happening, but it’s not coming to me right now. I’ll just have to sit and ponder a bit as I wait again for an EEG. In the meantime, know that my condition has improved greatly and everyone is still astounded at how healthy I look.

So, I’ve got that going for me.

Okay, I didn’t plan on leaving you in that much suspense, but it turns out my room’s not so close to the wireless access point and has a rather spotty connection. It works this morning though, so I’m typing as fast as I can.

So, to pick up where we left off, I wound up receiving 1500 cc’s of fluid at the clinic before my PET scan. This time, rather than looking for cancer, the PET was to look for infection. Apparently it shows those too - go figure.

I walked over to the PET place and drank the horrid gastrografin mixture. I brought my own water this time and it didn’t really make that much of a difference. It was slightly less horrid, but only slightly.

After the exam, the tech came in the room to get me out of the tube and asked me about the chemo I had had between the last scan and this one. I explained the thymectomy and the BEAM/SCT. He said he was just wondering because he had looked at the previous scans and there was a big area of uptake in the center of my chest (you know, the alien) and it was gone in this scan. Yes, you read that right - gone. Of course, he’s not the radiologist, but later the rads agreed - no more uptake in the center of my chest. The alien’s gone!

As for the rest of the scan, I was unusual as usual. Namely, my kidneys were showing uptake in ways they don’t usually see. At this point, I’ve got my new bed in the hospital, next door to the bed I had last time. I have a slightly smaller window and older bed, but the rest still feels the same.

Next begins the procession of doctors. SuperCoop and Erin, of course. The usual groups of residents, interns and students (on one visit, I had four stethoscopes on my back as I hyperventilated and three others tried to figure out how to nose in and listen). The nephrology team. The neurology team. The respiratory team. Just to make sure I hit all of the bases, I’ll be seeing the retina expert later today. Maybe I should fake some foot pain to get those lazy podiatrists off their butts.

Probably the most important of the teams has been the nephrology team. They’re the ones who deal with your kidneys and urinary system. Not only was I peeing less and less (after filling that specimen cup, the next five or six urinations would have barely filled the cup. After 1500 cc’s of hydration), but my creatinine level was rising. The creatinine shows how well your kidneys are working - the higher the number, the worse they’re doing. Mine wasn’t outrageously high, but along with the other issues, it wasn’t good.

The first I heard from the team was through my nurse. They had given her an order to put a foley catheter in me. I’m not sure I’ve expressed my views on the catheter before, but to say I was displeased is to put it very lightly. My nurse was behind me on this too, as she didn’t see much of a reason for it (I’ve had some great nurses during this stay) either. You see, the main point of a catheter is to drain your bladder. In my case, my bladder was staying empty - there was nothing to drain out. All of my urine was somewhere else. So we made an agreement that I was a difficult patient about this so she wouldn’t get into too much trouble and then I could discuss it with the nephrology team. I told her to feel free to tell them I threatened her with my fork, and kept it from my tray to back it up. Also, you never know when that sort of thing will come in handy.

Turns out, they figured out on their own that putting a catheter in me was a stupid idea. I didn’t even get to stab anyone. Sigh… So they got my history and went into a huddle. The initial verdict was an allergic reaction. With the pain and reduced urine output I was having, along with the timing of it all, it was their belief that the oral antibiotic I was given after my last stay (avelox) was causing an allergic reaction in my kidneys. The other possibility was that at some point while I was at home, my blood pressure dropped dramatically. When they say dropped, we’re talking a top number in the 30’s or 40’s rather than the normal 120’s. When this happens, it makes the kidneys decide to start shutting down.

So how do we decide which one it is? One of three ways:

1. Leave it alone. Both of these situations can resolve themselves over time, and as long as I stay off the antibiotic, any allergic reaction should stop. The drawback to this is, if my creatnine levels get too high in the meantime, I could have to get dialysis to support my kidneys. Plus, it could take a long time.
2. Start taking some steroids. Assuming the problem is an allergic reaction, they could hit me with a lot of oral steroids, which would calm the inflammation and speed the recovery time. The drawbacks would be the usual ones when you take steroids.
3. A kidney biopsy. This would tell them exactly what was going on with my kidneys and they can focus the treatment. The drawbacks here would be a little pain for me and the chance that it’ll show an allergic reaction and we’ll do the steroids anyway. They also made a biopsy sound quite scary.

They were leaning towards the steroid route. Everything they saw pointed toward an allergic reaction, so they might as well get me going on it. They just needed to look at a urine specimen and check my creat levels in the morning.

The next morning, the nurse comes in and says I need to be sure and not eat my breakfast, since I was having the kidney biopsy that afternoon. Pardon?

We get the doctor dragged in to do some ’splainin’. He said it was all kind of a quick decision with a short window. The specimen was pretty inconclusive, but that my bloodwork in the morning showed a major jump in my creat levels. Basically, if we didn’t get the biopsy done that afternoon, it would be a few days before we could get it done. That would be quite bad for my health. So they made the quick decision to do the biopsy and didn’t get a chance to come talk to me before the nurse did.

So after hearing the explanation, we agreed this was the best course. They did a CT-guided needle biopsy and it was quick and relatively painless. The worst part was the numbing part. After that, it was cake. I haven’t really felt any pain at the biopsy site either. At least until the doc stopped by the next day and poked at it.

Most of the results are in and they point to the low blood pressure situation - ATN, or acute tubular necrosis. There was some evidence of an allergic reaction, but not as much as they would expect to see. They said this could be due to my lowered immune system. Without a normal immune system, I can’t throw as much stuff at the problem, so therefore, less would be seen. They’ll be getting more refined results from the slides back in a week or so.

So what does ATN mean for me? Basically it means sit and wait. ATN is completely reversible given time and lots of fluids. Already my creat levels have been coming down, almost as dramatically as they were going up. Plus, I’ve finally started feeling the urge to urinate, meaning my kidneys are finally passing stuff to my bladder. And as for output, let’s just say Barbaro’s got nothing on me.

Breakfast’s here and I’d better get this posted before I lose my connection. Part 3 coming up shortly. Hopefully.

First off, I’d like to give a big thank you to Sue, one of my wife’s coworkers who has graciously and awesomely loaned me her laptop with a wireless card. She’s totally awesome and headed for good places.

“Why does Brian need a laptop, other than the usual geek reasons,” you ask? Because I’m back in hospital again… back where a friend is a friend… Sorry, I’m feeling cowboy-ish for some reason this morning. Must have been from the nephrologist/fork incident yesterday. Since I’m sitting here in my hospital bed, that means two things: my email replying will possibly be even spottier than usual (my webmail system is kind of a pain, though if I’m in here too long, I might finally catch up on correspondence) and this will be a super long post. Lucky you!

So over the weekend I wasn’t feeling so hot. Well, sometimes I was feeling reallyhot, but sometimes I was feeling really cold. My temp kept bouncing from 99 or so up to 101.9 and back. Erin had said we didn’t need to call in unless I was at 102, so I made damn sure we didn’t call, ’cause I didn’t want to wind up in the hospital again.

On Sunday, I started having kidney pain on the left side. It was the kind of pain where you feel like you’ve been punched in the back, and no matter how you roll around in bed, you can’t make it feel better.

Barb called Erin on Monday and they want me in for hydration and, you guessed it, a hospital admission. We arrived there around 9 and I started getting hydration. Found out around 9:45 that I was to have an eyes-to-thighs PET scan at 5:00 that afternoon, so I couldn’t eat anything after 10. The really fun part was that my last “meal” (still haven’t been able to eat much ’cause of the tastebuds thing” was around 5:00 Sunday night. Lovely.

So they pumped a good 1000 or so cc’s of fluids into me and I felt no need to go to the bathroom. I did feel both of my kidneys hurting at this point. My favorite nurse Jodi sat down next to me around 1:00 and explained just how bad it was that I hadn’t peed by this point. So, I decided around 1:25 that I would go ahead and give it a try.

Basically as soon as I stood up and took a couple of steps, I felt The Urge. I had to give them a specimen, and despite over 1000 cc’s of IV fluid at that point, I had just enough to fill their little cup - around 100 cc’s.

Holy crap - the nurse just came in and gave me Benadryl and my boady has IMMEDIATELY started to get tired. I’m going to go ahead and post this in case I pass out completely. I’ll give you part two either after I shake it off or after my kidney biopsy this afternoon.

Now that’s how you leave someone in suspense.

Yes, it’s reached that point again where I’m Sick Of All This Shit.

So the past few days have been interesting again. My temperature keeps going wildly out of control and now sometyhing new has been added - spots in my vision.

It all started around 3:00 AM on 7/28. Whenever my eyes were closed or open (in the dark) I saw colorful spots. These spots are like the afterimage you get when you look directly at a camera flash. The only trick is, there’s a whole bunch of ‘em. Imagine staring at the sun through a lace curtain or a tree’s leaves. You’d probably wind up with a lot of little spots like me. If there’s some kind of light on, I primarily see them when I blink. If it’s bright, like outside in the sun, it’s harder to see them. Basically, it’s been constant since 3 that morning. I had a head MRI on 7/28 to see if they can spot anything. They didn’t get all stuttery and hold me there, so I must not have a big ostrich egg sized tumor in my brain, so that’s something.

So just to clarify the spots a little more, these aren’t the “I’m dizzy and about to faint” flashes. For me, those present as little electric worms shooting across my visual field before the darkness closes in. So basically, I don’t have to be dizzy for them to show up. They’re also not “floaters,” as I’ve had those for a long time and they’re totally different. I do have a history of migraines, but I’ve never had visual symptoms with them.

The word came back yesterday on the MRI. Apparently I have three small “abnormalities” in the occipital lobe of my brain - that part in the back that controls sight. SuperCoop said they’re really minor and that the radiologist probably wouldn’t have mentioned them in the report if he (SuperCoop) hadn’t been right beside him and hounding him. Apparently, it just looks like my occipital lobe is older than it should be. Or at least belongs to an older person. I guess that’s why I’m wise beyond my years, but it seems like this should enable me to see into the future or something.

SuperCoop said he’s doing a big literature search right now to see if he can find any references to this happening anywhere to anyone. So far, he’s found a paper from 1999 where a patient had a similar experience after an SCT. He’s going to have me do a follow-up MRI in a couple of weeks to see if there’s any change. Also, I get to go talk to the radiation onc soon to talk about the nuking process.

The last thing, we did another chest x-ray on the MRI day and it came back as clear. Apparently I’m just imagining that I’m coughing my brains out. Thankfully, it doesn’t happen too often.

Well, there’s been excitement since the last posting. About an hour after I made that post, I was in the hospital being admitted for a fever. It was around 101 when we left home, 101.6 when we arrived and 102.4 about an hour later. At some point after that, I finally started cooling back down. I was in the hospital from Saturday night through Tuesday morning, and by Tuesday morning I was well past ready to get back home. Actually, I crossed that line Sunday afternoon.

They took a chest x-ray of me Saturday night and read it as me having pneumonia. Dr. Cooper felt that since I had a chest CT just that morning that showed no pneumonia, it must have just been a bad x-ray. They took another Tuesday morning before I left and I found out today that the area they read as pneumonia was clear, but now there was fluid elsewhere in my left lung.

The floor nurses didn’t give me printouts of my labwork like the clinic nurses do, so I don’t know what my blood’s been doing the past few days. I do know my WBC was 1700 yesterday, so today is a move in the right direction. Erin said that after you get taken off the neupogen, you can have a big drop in your WBC, so it’s good that I’m climbing back out of the hole. Today all I needed was some hydration and bloodwork. Tomorrow will more than likely be the same. Looks like everything’s finally on the way up.

Now it’s time to go lie down in the air conditioning again.

Since my arms are getting weak, here’s the update I just posted over on the Hodgkin’s forum:

Well, I’m back from the clinic where I’ve had a meteoric rise in my WBC - 600 yesterday, 2800 today. Booyah. I’m officially not neutropenic! Let’s hear it for neupogen! SuperCoop did blanch a little when I mentioned diving into the public swimming pool or wrestling a herd of toddlers. I’ll go ahead and put off those activities ’til next week.

The only other thing I have going on is a weird bubbling sound/feeling in the lower lobe of my right lung. SuperCoop sent me right over for a chest CT which was mostly inconclusive. There’s a little bit of fluid in my lungs (I blame Netflix) and around the middle of my lung is a thing that had a name that started with “A” which I’ve already forgotten. Basically, it appears to be an aftereffect of the thymectomy, where possibly some scar tissue is preventing my lung from inflating all of the way in that one spot/band.

Speaking of thymectomy, the oncology fellow (who was actually a woman) walked me over to the CT and was asking all about my history and the thymectomy. When I told her that the Beckster thought he had gotten about 90% of the mass and that it was much more difficult than he thought it would be (10 hour surgery instead of 2 hour), she said “oh yeah - you’re the one where it was attached to the lining of your heart!” To which I astutely replied “Bwuh?” Looks like the alien inside was going after my tasty bits and didn’t want to let go. Go figure.

So tomorrow I go in for a little bit of fluid and a listen to the lungs, but probably not much more needs to be added to my system. Plus, the best news of all!

Today was the last of the neupogen.

This will be another short one - it’s getting steamy in the office and I’m still in a bit of a Benadryl hangover right now.

My WBC is rebounding like gangbusters. Yesterday it was .1, or 100, and today I’m .6, or 600. Dr. Cooper and Erin were both grinning from ear to ear and rather excited about the whole thing. SuperCoop even said that I would probably not be neutropenic as early as this afternoon. That would mean I can go back out in public and eat restaurant food and such. Giggedy giggedy! We’ll know for sure where I stand with tomorrow’s blood count.

Aside from that, my platelets were starting to bottom out again at 16, when the normal is 150-350. I think around 25 or 30 is when they start panicking and giving platelets, so yeah, I’m low. This platelet infusion went much better than the last one, where I got super-nauseous right as we were trying to leave the place.

I also got two bags of potassium which are tiny little bags, but have to be given over the course of one hour each. I’m going to have to find something to read tomorrow - today almost made me finish my sudoku book.

Yesterday afternoon the neupogen pain finally started in my lower back and it’s been a bear. I just try to keep the tylenol flowing to keep it under control.

Well, back to the cool bedroom I go. More tomorrow when I’m brimming with white blood cells.

Hey everyone, I’m finally back. Due to the current heat wave, I’ve had to stay away from the computer, as it’s located in our non-airconditioned office. Plus, the folks were out here for the past week, so there wasn’t as much pressure to race in here and update everyone since my top two readers were here in person. Now everyone’s spread out again, so you all get to be updated again.

It’s a little cooler today, which brings me to the computer, but still not supercool, so this’ll be kind of short. Maybe more tonight when everything cools down again.

Today’s appointment went well, and after a few days of my white blood count (WBC) being less than .1 (4 is the low end of the WBC range), I’m finally back to being AT .1! That means that somewhere in my body, I’ve got a white blood cell bouncing around in here!

Two days ago (the day my parents left), my hair started hurting in that pre-fallout way, so the folks got to see us go through the shaving process. That was also the day I had one of my more severe reactions at the clinic. I had to get platelets on that day and right at the finish, my stomach decided it did not want me to leave just yet. I wound up getting some wonderful IV Ativan and crashed on a stretcher for a few hours. Afterwards, no ill effects.

Today’s was uneventful, even boring in comparison. Just the typical hydration, Zofran (antinausea) and antibiotic with a neupogen chaser.

Now it’s time to go lie down and rest my arms for a bit. Once it gets cooler, I’ll backtrack and tell you all about some of the experiences since I was last out here. Until then, know that I’ll be slightly more regular in posting the day-to-day. Unless it gets hot again, of course.

Well, tomorrow’s the big day - I go back on the sauce. I think we’ve done what we can to get ready for the latest chemo. We’ve moved around all of the heavy things in my workshop I want to have moved around, we’ve tried to put away all of the heavy things that need to be put away, I’ve signed up for Netflix again and we’ve put an air conditioner in the bedroom.

One additional way I’ve been getting ready - freaking the hell out. I am so not ready to start poisoning myself again. Here I thought having a layoff would be good for me, instead it’s given me the time to realize just how good it feels to feel normal. Well, except for these last few days. My sleeping pattern’s been all screwed up, partly due to the heat, partly due to the frickin’ Itch coming back with a vengeance, but probably mostly because of the trials ahead.

Other than the sleep thing, I think I’ve been keeping it together rather well, but you’d have to ask Barb for the real verdict. She always sees right through me. I know I’ve been mopey on occasion, and worse as Day -6 grows nearer, but I haven’t been completely inconsolable, I suppose.

I was going to go see Superman Returns today, as Barb and Mary went for a day at the spa. I figured it would be a good last day cheery thing to do for myself. Instead, it was pouring rain outside when I wanted to leave and I wound up falling asleep on the couch. Sleep is relaxation… TO THE EXTREME!!! After I woke up, I grilled a couple of steaks (take two, they’re small) to near perfection and watched Snatch for the billionth time. Still makes me laugh like a loon. Vinnie Jones should be in every movie.

Well, I guess I’ll go back to doing something else, assuming I can think of something to do. Maybe I’ll spend the next couple of hours trying to figure out how I’ll sleep through the night. Whee.

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.

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 h