Speaking of Armies…

Since I had to break out my camera a little while ago (a long story involving bad power supplies, idiot scanners and a million fonts), I finally took a picture of the package I got in the mail a bit ago from The Regulars. If you wanna see the big picture, click the little one.

Regular Goodness

Inside was a strip with three Regulars-logoed stickers, a photo and the now-expected password hint paper. Unfortunately, my hint is for the number seven in the second slot, which has already been figured out. Now we all just have to sit around with bated breath until the next recipient posts their hint.

As for the photo, it’s markered with the phrase “Where are we going?” in the lower left corner. The photo itsels if of a map of London with the National Portrait Gallery circled. Upon receipt, I zipped over to the gallery’s online presence to try to find a clue, but it was no help.

Or was it?

Taking the Mantra to Heart

Well, I’ve taken my first step in the “It’s not Art” revolution. I was originally waiting until I had the whole site redone before I added a link to survivor’s blogs, but today I said the hell with it. It doesn’t have to be pretty (yet), it just has to be there. So, if you look over to the right there, you’ll see a list of people who have either beaten Hodgkin’s or are in the midst of the battle. More information about the list can be found by clicking that first link. If you know of someone with The Hodge who’s keeping track of their progress online, click that “Add Me!” link at the bottom and send me the info. The more members we have in the Hodgkin’s Army, the better.

Of course, if we suddenly had no more recruits because this thing was beaten, that would be even better still.

It’s not Art.

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

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

It’s not Art.

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

Idiot.

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

That would be quite a change.

Quick Update Before the Devils Game

Well, things are moving again for me treatment-wise. The oral surgeon (Dr. Tool as Barb and I affectionately call him) said Tuesday that while my wisdom tooth holes weren’t healing as fast as a typical patient, they’re on track for me with my loverly situation. That means we are a go for the new chemo. I got the call from the transplant coordinator today and took some notes.

Next Thursday (March 30th) I get admitted into the Yale Children’s Hospital. My coordinator says it’s because the facility is the nicest to put me in, but I highly suspect one of the infusion nurses wrote something in my chart. I’ll be getting four bags of ifosfamide, each one given over a 24 hour period, a bag of gemzar for a couple of hours each day, and one push of the navalbine in one day.

The best news of this? After this chemo, I get my stem cells harvested! Crazy thing to get excited about, but to me, this means we’re moving forward. Once I’m done, the Neupogen (like Neulasta but less evil) starts. I already can’t understand my notes at this point. Once I get admitted, the coordinator will bring down a calendar with all of the dates for things, since she’ll then be able to figure out the specific dates and such depending on what time this starts. The Neupogen can either be given to me by one of us, by them, or by Dr. D’s office. I think at one point she said something about getting 2-3 shots per day? In the ensuing time period, I’ll be getting my blood checked occasionally by them (Yale) as I will possibly need transfusions after this chemo.

For some reason I’ve written “middle of the week of the 11th” at this point – I think that’s when the cells will be harvested. the week after that will be another PET scan. That will determine if I finally get the BEAM. If that blasted tumor’s still misbehaving, I might go for another cycle of this stuff or a cycle of something completely different. Apparently the doc’s had a lot of success with this combo, so hopefully this will do it and I can finally get started on the SCT.

I think that’s all I have written down on my piece of paper. A lot of stuff still hazy in the future, but at least we have the next step.

PBS Kids go!

Free the Wattsmouth One!

Well, I’ve just gotten back from having my little enamel sandinista liberated from its gum gulag and I don’t know (yet) what all the fuss is about. I’m sure I’ll figure it out when the novocaine wears off. The procedure itself was surprisingly fast. The doctor (who Barb and I agree was quite a tool) numbed me up and said something about breaking the tooth which, badass or not, can really freak you the hell out. He tugged around on it for a bit and said “okay” and stopped. I figured he had broken it or whatever and was going to get ready for the rough stuff. Instead, the nurse says that she’ll go out and get Barb so we can talk about post-op care. Aside form the paperwork filling out and the numbing, the whole thing took about two minutes.

The doc (tool) said he was just going to leave the spot open, because apparently there’s less chance of infection that way. He told me that I should wait a minimum of one week before getting the next round of chemo, preferably two. I’ll be seeing him again next Wednesday for a followup. He also said that if I’m still having pain after this heals, I can NOT have my chemo. Apparently when your immune system and/or your blood is all screwed up from chemo or other things, there’s a possibility of infection attacking your teeth from the other direction – root up instead of crown down like a cavity.

Heh heh – crown down.

He said it’s kind of hard to see that sort of thing going on unless you’re specifically looking for it and if I still have pain, they’ll specifically look for it. He brought all of this up just because of the chemo and the fact that my pain wasn’t always directed at the one wisdom tooth. This past week it has, though (he never quite gave me enough time to explain that fact. Tool.) so I’ll probably be fine once I’m healed.

So, it looks like I’m going to be chemo free for the next couple of weeks. I guess I should go run a marathon or something, just so I don’t get used to not being tired. At least this gives us a little more time to overprepare for the hospital, right?

Another Word. Well, Four More.

I realized a little while ago that I never brought back the old Semi-Weekly Word site. I’ve got it up on it’s own little subdomain now, and it’s even more patched together than this site right now. If you’re new here, I had this bright idea back in 2002 of picking random words out of the dictionary every week (or so) and writing something revolving around that word. I did it all of four times. One day I hope to go back to my semi-weekly ways, so I got it back up and going. If you’d like to see the little bit I wrote, head over this way. One day, it’ll be nice and pretty and functional. Say… in a week or so.

Finally, a Word.

I finally heard back from someone about the PET scans and the schedule. Naturally, I realized halfway home that I left all of my notes at work, so here’s what I’ve got from memory.

Basically, the PET scan sucked. It still shows the uptake in my chest, which means there’s still cancer there. What Dr. C wants to do is give me a harsher form of chemo. I’ll be back on the ifosfamide (the one that screwed with my bladder), only this time it will be matched up with gemcytobine (which is either another name for the gemzar I’ve had or something new, depending upon how it’s spelled) and navalbine (or navelbine which is something else that starts with a V but isn’t the “V” in ABVD – it’s something new). The trick to this chemo? I’m going to have to be in the hospital for it.

The nurse practitioner is the one who finally called me back and she said I would be in the hospital 4-5 days as the treatment was being given to me. The two main reasons for the hospital stay are that it’s going to be a rougher chemo than the others I’ve had and because at least one of them is on a really long drip cycle, so they have to keep me there while they give it to me.

When will this fun start? Well, now we’re back into the fuzzy haze of the future. She said it all depends on what the oral surgeons say. Tomorrow when my sandinista gets liberated, I have to ask the oral surgeon approximately how long it will take me to heal. This seems like a strange thing to ask, since people heal at different rates, and I figure that’s what he’s going to tell me. Whatever tentative date he says, I’ll call Yale and give them that date and they’ll set me up for chemo on the very next day. The NP didn’t think I’d need a really long time to heal, estimating that they’d probably be seeing me late next week. If so, that could work out well, since straddling the weekend would mean two less days of work I’d miss.

Of course, getting all of this arranged would have to find a way to throw a wrench in our plans somehow, right? Of course it does! Next weekend is Kevin’s birthday in Boston that Barb was going to be participating in. Naturally, she’s already reserved and paid for a room down there too. Oh boy! So in addition to all of this, she’s a) not going to get a break to have some fun and b) going to have to deal with the hotel people.

So now the question remains: Is it time to fall to my knees, rend my garments and shout up to the heavens “Why God, WHHYYYYYY?” Well, I considered the possibility for a bit, running through my options after the phone call. But come on – have you been reading this site? I’m a badass. Things will happen when they happen as they will happen and I will continue plugging along, proving to cancer who the boss is.

Hint: It’s not Tony Danza.

PET Scan (non)Update

Okay, here’s the deal. I had my PET scan on Monday. I talkked to my transplant coordinator, who told me she would be off this week. I could call A, who’s covering for her, on Tuesday afternoon to find out the results of the PET scan and find out what my upcoming schedule would be.

Yesterday I called A and she was having computer issues and said she’d call me back as soon as she could access her files again. No return call at work, no return call at home. I get in to work this morning and give her a call.

She is out of the office on Wednesdays.

Would you not assume that exam results are important to a cancer patient and everyone in the immediate vicinity of the cancer patient? Would you not leave a big note somewhere saying “For the love of GOD call this patient ’cause he’s probably going crazy right now!”

So I call the emergency contact person, S, that A leaves on her voicemail. I try to explain to her how this is actually a sort of emergency, since I’m going to be out of work the next two days with the wisdom tooth thing and my boss needs to know if I’ll be in next week since I have projects that have to be handed to someone else if I’m not. Not an “I’m dying” emergency, but an emergency nonetheless since I WAS NEVER CALLED BACK YESTERDAY.

So S checks around and calls me back in a few minutes (learn a lesson, A). She starts out the call with “I’ve found out what’s going on, but you’re probably not going to like to hear this.”

A nurse practitioner is going to be looking at my scan and discussing the results with Dr. C. Why is an NP looking at them and not the doc? Go on, guess.

The doctor is on vacation this week.

Yes, even doctors need vacations, but couldn’t this have been mentioned last week? “By the way, your doctor’s going to be out of the office, so you might have to jump through a bunch of hoops to find out anything.” That’s all I ask is to be informed.

In other news, the bloodwork came back good, so tomorrow the wisdom tooth extraction will proceed. Every time I use the word “extraction,” I picture my wisdom tooth as a sandinista rebel ensconced in a guatemalan gulag. Too ’80s?

I Can Go to Sleep Now

Ahhh… looks like everything’s all sorted out. Like I said, there’ll be some more tweak and changes and refinement to the site once I decide what else and where else I’m putting things. Consider this the alpha version of the site design. I would’ve waited until I was completely done, but I couldn’t take those round corners any longer. Now we’re back to sharp and pointy and I can relax for a day or two.

Speaking of relaxing, tomorrow morning is my PET Scan to see how the cisplatin/gemzar combo did. Then later in the afternoon I get my weekly bloodwork to see if I can have my wisdom tooth extracted on Thursday.

Yay me.

Slowly Going Insane

So I’ve been working a bit on the site design today, as well as getting Barb’s site up and running where she can get back to posting things too. I gave up on coding everything with the new site’s design and made do with hacking and slashing through the default template’s code until I got what I wanted to see. You’ll notice that the site still looks the same. That’s because something wonky’s happening with my webhost right now and it’s driving me insane. I have the new design ready (well, the bones of it – it still needs a LOT of refinement), but I can’t get it uploaded right now for multiple reasons. Plus, I’m looking to do some domain name switching around so there’s that little headache I’ve given myself too. Whee.