Wednesday, January 30, 2008

Getting Ready for Phase 2

As mentioned, I get my re-staging scans in a few short weeks - Essentially, all results will be in before treatment 5A (treatment number 9 for you non-cycle thinking fans). These scans will let us know how well the ABVD has worked thus far. The goal (and what everyone should be praying for) is COMPLETE RESPONSE. That means no living cancer cells are detected. We may see some "uptake" in a scan related to inflammation, so not getting a CR isn't the end of the world either. What we don't want (and no one expects, so don't worry) is uptake in places other than my neck and chest, or if it grew in those areas. That would be a bad thing, and since it ain't happenin, we'll leave it at that.

Once those tests are in, we figure out if we're done treatments April 9th, or if it goes out another two months. Also, these scans are used to start putting together the game plan for phase 2 of this fun, radiation treatment. That's the good news for today.

My fellow Hodgie, Bekah, is currently kicking ass and taking names at the Hospital of the University of Pennsylvania (HUP for short) following a relapse -- It does happen unfortunately. However, she was wonderful enough to pass on the radiation oncologist recommended by her doctors: Dr. Eli Glatstein. Apparently he's among the "best of the best", and I've been lucky enough (with Bekah's help) to land an appointment with him in March. Radiation is no joke, and I'm not taking chances with it -- If I can have the best working on me, then damn skippy.

Bekah, can't thank you enough for helping me get an appointment with him.

On a separate topic, I find myself in the horrific predicament of once again having to root for the New York Giants. I hate cheaters, and while it was a small event I find the Patriots to not be a team I can root for. That leaves me rooting for the Giants, my brother's favorite team. I wish I liked pro basketball, sigh...

He's throwing a party on Sunday for the game, so it should be a fun time. I'll be damned if I'm showing up in a Giant's jersey though. Hell no.

Monday, January 28, 2008

A Night of "Normal"

Hey, wanted to catch everyone up on Saturday's events (since I haven't posted since last week). Suzanne and I made it to the fraternity reunion Saturday night. I felt GOOD, although a little tired and week (only two days after tx). What a friggin time warp! I haven't seen any of these guys in ten years (Suzanne and I lost touch when we lived in Ireland back around 2000).

I sent an email out last week to one of my brothers, letting him know if I didn't make it, here's the reason why (i.e. Hodge). Well, Jackass (namely me) does a reply all on the email, so rather than low-key, it goes out to everyone. Yeah chemo brain!

Wow, the reactions though. I have guys who I haven't seen in forever offering their help if I need it, giving me contact details. I love Theta Chi -- Its a brotherhood forever. I was touched, big time.

We had a BLAST! We didn't stay for the whole event (I started "crashing" around 9PM), but we talked with friends, and I met a brother from the 80's who just beat cancer - twice. He lives in the area, and he left a standing offer to take me out to lunch and talk if I need it.

I'm so glad I went. I got a night of normal, and it felt good. I plan on many more once this thing is beat in 3 months.

On a side note, please say a prayer for a woman named Sarah and her partner. She's a person I called my "Hodge Hero" on the Hogkin's Support forums, and she's in a bad way right now. She was like the Den Mother for the forum, having battled this for years and no treatments providing her the cure she deserves. I'm hoping for a miracle.

Thursday, January 24, 2008

Treatment 7 (5 to go!)

So far, so good.

We went in for our 7th treatment, knowing that the dose reduction did a number on my symptoms (they're mostly gone). I have some interesting "cysts" on my thumbs which are probably viral and will go away on their own, but we're supposed to watch them. Other than that, the eyebrows continue to slowly work their way off my head. We will soon be making the transition to bald in-style guy to Moon Boy. Oh well.

The real annoying thing is I put on 9 more pounds in the last two weeks. 9 pounds!!! Damn playoff football and the awesome foodstuffs one has then! We're going back on the diet. Dr. Szarka said if I don't at least maintain weight next time, she's going to dose reduce me. (She said that in joking, it was pretty funny).

The week before treatment 9 (in about 3 weeks), we will be re-staged: They will run a CT scan, PET scan, chest xray, pulmonary (breathing) function test, and heart echo. The first three are to see how treatment has worked thus far. We're all convinced it will be a Complete Response - Everything is dead. The last two are to check the functions of my lungs and heart following the treatments, as they can cause toxicity. My lungs sound great though per my onc.

So, we're back to dieting, and getting anxious to get the story on where we're at. A Complete Response gives us the best chance that this is not refractory disease (recurring).

Saturday is my fraternity chapter's reunion party (Theta Chi). I'm going to be exhausted, but dammit I'm going to make this thing. I even got clearance to nurse a couple beers while I'm there!! I just want to make sure I don't turn it into a somber event -- I doubt it, but I hope not, no matter how much I want to see them.

I'm tired, I'm weak... But I see a light at the end of the tunnel now.

Wednesday, January 23, 2008

Ready to Start the Downhill Side...

Anyway, off to treatment tomorrow, just wanted to say hi since its been a bit. Doing good, just had a whallop of bone pain last week from Neulasta (haven't had that before, must have kicked in).

Wednesday, January 16, 2008

Do the Bone Pain Boogie!

Hello everyone!

Sorry to (once again) be remiss in my ramblings, but the 10% dose reduction has made chemo - dare I say it - almost easy. I have one shot weekend a month, but I'm relatively back to normal by Monday after treatment.

Except for my Neulasta bone pain. Its only a day or so, but its always fun.

I got a very nice case of that today, so I'm missing my last day of Analysis Services training. Ah well, I have the book and know the product pretty well already - Should be good to go. Its nothing a few Percocet can't handle, but I'm not one to go to work (never mind drive) on that type of stuff.

Other than the training, nothing really new to report. I'm just spending the evenings watching my daughter's favorite show, American Idol (hey, the first few weeks are FUNNY), and pigging out unfortunately. One thing I'm NOT doing with cancer and chemo is dropping weight.

I've been in great spirits this week, but my onc has me a little on edge - When I mentioned last week that I was "halfway done", she hedged. Of course, its her JOB to, as they could always extend me to the max 8 cycles (16 treatments) if needed. She doesn't think that will be necessary though, but she's not going to out-and-out say I won't need it until we get our halfway scans.

Speaking of, I wouldn't mind getting those sooner than later. I want to know how this chest mass is doing (hopefully very dead), and I want those so I can start interviewing radiation oncologists about my treatment plan post-chemo.

Oh, and I forgot to mention -- Dr. Szarka did some research on that vaccine trial thingy in Baltimore. Its not a Hodgkin's specific trial, they want to see if this non-targeted vaccine creates any sort of Hodge response. So, in essence, there's really no benefit to me. That sucks, but I'm glad I know about it NOW before I let someone stick crap into me that really isn't going to help!

Thursday, January 10, 2008

Treatment 6 (Cycle 3B) - HALFWAY DONE!

If you know the enemy and know yourself, your victory will not stand in doubt; if you know Heaven and know Earth, you may make your victory complete.
- Sun Tzu

Well, we're halfway through the hardest crap I've dealt with in my life thus far. The good news is that other than the sinus infection, this was the easiest treatment yet. None of the major symptoms, my bloodwork looks good, and all seems well.

We had another delay at treatment today - Once again, the brown bag over the dacarbazine hid a kink in the iv line, so I lost an hour while my saline flowed before it turned on an alarm. No biggie, we were out by 2PM.

As for the sinus infection, it seems the infection is now gone but the "virus" part remains (a bit of a sniffle). We have to keep an eye on things, but pretty good.

I'm friggin exhausted though, and really, really weak. Just getting up off the couch requires some effort, and that sucks. Its temporary, but this is the symptom that will get worse as we go.
We also will be looking to line up our "retests" in another month, so I'm definitely looking forward to that. Keep praying, and thanks again all of you for reading my regular rants!

Sunday, January 6, 2008


I'll explain later, but needed to say it (can't explain now for reasons that will become apparent this evening).


OK, now that's its over (or still ongoing), I'm pissed because I missed my brother's 30th birthday party today. A couple weeks ago I picked up a small cold, which managed to make itself into a full-blown sinus infection. I'm on antibiotics, but its not doing anything to help it so far - And I'm running an occasional low-grade fever. Being in a smoky bar with loads of people (who I love, but still) wasn't going to be the best idea ever.

I'm really, really upset at the moment. Brian, happy birthday bro if you read this (which is why I didn't post earlier). Love ya man, even if you like the Giants.

Wednesday, January 2, 2008

Hakuna Matata

The dose reductions have seriously curtailed my symptoms; A lousy 10% change has made my jaw pain go away entirely, my "little c" much less, and in general this week was (gasp) easy. I'm still freaked out about the reduction, but even my wife is now rolling her eyes and telling me to take an Ativan, so I'm probably freaking over nothing.

On the other hand, I caught some sort of bug and I've been laid out sick. Here's hoping I get back to work tomorrow.