So Brian is in the hospital now and I’m across the street at my office. It’s great that I work so close to the hospital so I don’t have to take too much time off from work and can still visit him and keep the doctors on their toes.
He checked in at noon and by 3:00pm they still hadn’t hooked him up for chemo yet. I started getting sleepy just watching TV waiting for the transplant coordinator to show up so I came back to the office.
I’m sure I’ll have more to tell y’all soon…
So Brian is in the hospital now and I’m across the street at my office. It’s great that I work so close to the hospital so I don’t have to take too much time off from work and can still visit him and keep the doctors on their toes.
He checked in at noon and by 3:00pm they still hadn’t hooked him up for chemo yet. I started getting sleepy just watching TV waiting for the transplant coordinator to show up so I came back to the office.
I’m sure I’ll have more to tell y’all soon…
Well, it’s that time – I’m leaving work to go get checked in to the hospital. Don’t worry though, I’ll have a special guest blogger keep you all up to date – Barb!
Don’t miss me too much…
Well, last night I didn’t get home quite as early as I wanted. It was getting dark pretty quickly, so I grabbed a bag full of pucks and went out back to shoot some around. My wrist shots were pretty snappy and surprisingly accurate. My slap shots, however were wild to the point of dangerous. Anything within about a 270 degree arc of me was fair game. I only tried about ten slappers all told. We have new garage doors and while I was shooting with my back to them, you read how wild my slap shots were.
I got in about 40 or so wristers before I had to call it a night on account of darkness. Black pucks on black asphalt are really hard to see in the dark.
I was feeling pretty good, but this morning my back was feeling the workout. Especially after I sat at my desk for a bit and then stood up to walk anywhere. Holy crapoley. Regardless, I made a point of getting out the door right on time tonight. I made it home with enough time to get on my gear and actually do some skating. That’s what I’ve been hoping for all week. I’ve had work stuff taking up my weekend hours and I was starting to think I wasn’t going to get to skate before I went in to the hospital.
Luckily, I got to have one more skate. Who knows how long it’ll be before I get another. I’m getting admitted into the hospital on Thursday and will be there through Monday. Then I’ll probably be too tired to get out of bed for a few days. Plus, I’ll have to be getting my blood checked every couple of days. The comes the stem cell harvest. Then comes the high dose chemo. Then comes the hotel room confinement. Then comes the re-strengthening.
Then comes the hockey season.
Almost forgot to mention that I made it through last night – the house didn’t kill me after all. I think it’s just biding its time. I woke up around 8:30 this morning ’cause I could feel a presence in the room. It was Barb. I guess her Spidey-sense must’ve been going off last night, so she came home early. Yay!
Okay, so my imagination works a little too well at times. Because of this, I’ve often been hosed when it comes to being alone in the dark. My ears hear a noise and my brain starts going crazy, thinking of all of the horrid mundane and supernatural things that could have caused it. This old house (our house, not the TV show) doesn’t help very much.
Barb is in Boston tonight. I’m here alone in Hartford. I’ve been up a little too long, so my mind and ears are having a blast. Ever see the Simpsons where Marge left Homer alone with the kids and when she got home, there was a huge hole in the front door and Homer and the kids were hiding behind the couch, scared out of their minds?
Welcome to my world.
Now, I was preparing for things to go a little crazy tonight, just because I learn from the past. There’s one thing I didn’t count on. You see, there’s one room in the house I’ve never liked. I’ve just gotten a bad vibe every time I’ve gone in there. I affectionately call it The Room of Evil. If I’m alone, I stay out of there and keep the door closed. If I have to go in the room, I go as fast as I possibly can.
Is it possible for a second floor room to be built over an indian burial ground?
So tonight, just a mere few minutes ago, I decide it’s time to turn in. Flashlight? Check. Hockey stick? Check. Backup hockey stick? Check. I’m settling under the warm covers, ready to be lulled to sleep by the hum from all of the lights on the second floor burning brightly, when all of a sudden…
Actually, much louder than that, but I’m too freaked out right now to mess with my CSS.
I grab a stick, find my glasses, put on my slippers and investigate. A picture just up and decided to fall off the wall. Makes perfect sense. And where was the picture? Outside The Room of Evil.
Bloody Hell.
Just know that if I happen to not make it through the night, it wasn’t the cancer that killed me. It was the house.
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.
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?
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.
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.
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.
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!