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 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!

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.