Lord of the Hodge

Blogging on some new things

2008-06-08T10:01:00.000-07:00

Well folks, as treatment is over cancer is not going to define me on the blogosphere any longer. Therefore, I've started a new blog - A Philadelphia Guy's Blog. If the techy stuff isn't your thing, be sure to use the Health Updates link there, so it will filter that stuff out!

This blog will kinda be a mismash of everything, including checkup updates. I liked the blogging, and to be honest there were times I wanted to add more, but didn't want to change the theme. Now, I can do that. I'll be sure to tag posts about my treatment there so you can find them easily.

For everyone who followed along, its been a long, strange trip :) Thanks for riding it with me, and let's hope we don't have to do it ever again. As I've told the wonderful staff at the Paoli Cancer Center: I love you all to death, and I hope I never see you again in a professional capacity!

Head shaved for cancer costs woman her job

2008-06-06T09:14:00.001-07:00

Stacey Fearnall, of Owen Sound, says she was asked to leave her job as a waitress from Nathaniel’s, a casual fine dining restaurant in Owen Sound, after she had her head shaved to help raise money for the annual Cops for Cancer fundraiser.

read more | digg story

And He Lived Happily Ever After...

2008-05-31T12:00:00.000-07:00

Yeah, it sounds good to me :)

Anyway, I haven't written in a bit. Last Wednesday was my last radiation treatment, in fact my (hopefully) last cancer treatment. It felt kinda anti-climatic, at least compared to the end of chemo. Still, its good to know that when I feel better now, I'm better for GOOD.

My voice is completely gone at this point. I sound like Don Corleone whispering to avoid waking a baby or something. Also, my throat is still on fire, but that should only be for another week or so. Beyond that, I also went back out on disability - So I'll rest up this time and make sure I'm really good to go before I head back to the office. Beyond that, I have my deportation (my PowerPort people, I'm not getting sent out of the country!) sometime in June, and my first "follow-up" appointment with Dr. Szarka in July. That's just a simple checkup "How are ya" kinda visit. I'll have those (along with occasional tests) for at least the next 5 years.

Oddly enough, I'll have my first appointment with my regular doctor in June too, the last one being my cancer diagnosis. It will be damn nice to get back to stomach bug visits again :)

Anyway, I'll still post on how those appointments and tests go, just to keep this site alive if nothing else. If my travails help even one new Hodge patient get through this crap, it will be all worth it. As for me, I don't really have any life-altering plans. I have a respect for my own mortality that I didn't think I'd need, I think I'll be visiting family a bit more often that I used to, I'm being more careful about my diet, and I think I'm a bit closer to God then before. But for the most part I figure life will go on as it was before. And that's a good thing.

Cancer sucks. But I'll live.

Ever Have One of Those Days...

2008-05-24T06:49:00.000-07:00

Have you ever had one of those days where it just feels great to be alive? I mean, I'm sitting here waiting for the narcotics to kick in (prescribed people, prescribed...) to relieve my torn-up esophagus, and it doesn't matter. The kids are playing around, its a gorgeous day outside (that I'll be able to go out and enjoy), and we're almost done.

Adding to the euphoria is the fact that one of my biggest worries just went out the door. My radiation doc is pretty adamant I go back out on disability for another 4-5 weeks, to rest up. Apparently I'm the only one who thought going back to work was a good idea. Well, here's the problem: I only have 2 1/2 weeks of FMLA left. What does that mean for you folks who don't know FMLA law? Essentially, my company has the right to fire me. Naturally, that worries me.

I spoke to my manager on Thursday. Her response is one of the reasons when I'm better I'll work 24 hour projects for her: "We don't HAVE to fire you, its really there for people who abuse it. In your case, you probably are the opposite... You didn't take it when you probably should have."

In essence: You'll have a job, just get better... And make sure you're 100% better this time. Of course, I thought I was, but was under the impression that radiation was a cakewalk compared to chemo. It's still easier, but DAMN am I tired - And burnt. My whole neck and chest are red.

But, the fact is, I kicked cancer's ass. I'm going to enjoy a gorgeous day outside with my family, and I'll enjoy another one tomorrow. I have a lot of them to go. Yeah, we're feeling good about things today.

Am I going to live forever? No. The fact is, with the risks for relapse, secondary cancers (due to treatments), and the fact that my genes are fubar, I have about a 60% shot of making it 20 years. That's OK though. Go back to the beginning where I may have had something that gave me a coin toss for 2 years. I look at the wonderful people I've met through this who have the same "easy-cure" disease, who didn't make it. Twenty years sounds damn good.

But, the most important lesson is what I've heard constantly from the start: Live every day like its your last. Damn, its true. Enjoy every day.

Speaking of, I need to go shower. There's a gorgeous day outside with my name on it!

Ouchie!

2008-05-14T08:43:00.000-07:00

Rads suck.

Over the last three days, my throat has decided to betray me. Imagine having a sore throat that extends down a ways into your chest, so that you feel like you're running a gauntlet every time you swallow a bit of food... Yeah, that's where I am at the moment.

Tiredness is starting to kick in as well. I JUST got back to the office, and was having fun getting back into the groove... And now I wonder if I'm going to need to take more disability time. After initially being told rads would probably be a cakewalk, I'm finding myself back in the same situation again. Bleh.

Well, on the bright side, I only have two more weeks. And its my birthday - A year older (ugh, that's good news?).

Whaddaya Know -- The Buzzing Machine is Actually DOING Something...

2008-05-11T12:15:00.000-07:00

Well, the side effects started to hit over the weekend. First of all, we have the "sore throat". Now, is it a normal sore throat? Oh no friends, we don't get that. Since I'm getting hit below the jawline, it's more of a feeling like perpetually having something stuck in your throat. Good fun, and I'm all about new and exciting experiences, oh yeah...

Next, we have the tiredness. Still not chemo tired, but I just feel like I want to lay on the couch, put something mind-numbing on TV, and have Suzanne wait on me hand and foot. Oh wait, that's everyday. Just kidding of course (as I wouldn't want Suzanne to catch on to my grand scheme for lethargy), but its getting there. Also doesn't help that I haven't had coffee yet today.

All in all, things are going well. I'm back to work, and that's been going great (although I'm already swamped with work again). The gang is doing great. Still haven't really thought about the concept of "cancer free life" yet, but I suppose someday I'll get there.

I also have a few takers (from the WebMagic boards and at the Paoli Cancer Center) for my idea of an Ativan Pez dispenser. I figure we can start the line with a giant "A" on the top of one, and maybe Cheech and Chong on the other. We can add other characters later once the product goes prime time ;-)

So I'm a Sensitive Guy...

2008-05-04T07:08:00.000-07:00

Leave it to me to have side effects earlier than most.

To start with, I call the Cancer Center on Friday to ask if they can fit me in for 3PM. I'm told that they will squeeze me in no matter what the 3PM appointment says (I love Paoli). I take the ride out there, thank them profusely, and get my dose of the buzz machine. So far, so good.

I go back to the changing room, and see some nice-sized sunburn marks. I go chat with the nurses, who look shocked -- Apparently I'm not supposed to have sunburn after only two treatments (I had three at that point, but the 3rd just happened). They check me out, and I get a cream to stick on the burns 3 times a day. No worries, right?

Well, I got a cough again, and when I do so I get a metallic taste. This could be one of two things: One, its the radiation working on my esophagus and the cough is from my cold I picked up, or 2) I'm coughing up blood.

I have my next appointment tomorrow, and I see Dr. Curry at that time - I'll see what she thinks then.

Well Done Please, With Grill Marks if you Can...

2008-04-30T12:18:00.001-07:00

Today was my first day of radiation, yippie!

So, I walked into a nice big room with a machine like this one (its the same model, a Varian EX21):

Looks like something out of a bad sci fi movie, doesn't it? Anyway, I'm there barely a half hour - They run some last xray checks, the doc OK's it all, and then its about 10 minutes of listening to the machine buzz.

Now the bad news - They don't have an afternoon slot open for me yet. So, for now, I go first thing in the morning at 6:30AM. I'm pretty pissed off to be honest, as one of the selling factors was being able to do this at the end of the day (and close to home) so I don't have to worry about tiredness during work.

They are going to see if a lady at 3PM can switch with me. I sure hope she can, otherwise I'm going to get pretty PO'ed with Paoli.

Tattoo Man

2008-04-25T08:43:00.000-07:00

It was awesome, I have a trio of great, intricately designed dragon tattoos on my body now.

OK, maybe it wasn't dragons, but three blue-black dots. If you stare at them long enough, they look like dragons. Maybe you're not looking hard enough. Perhaps if you were cooler, you'd see dragons...

Today I had my simulation setup for radiation. As part of that process, you get three permanent tattoos on your midsection right above your bellybutton - One in the middle, and one to either side of your torso. The idea behind 'em is to make certain you are lined up exactly the same each time you go in for radiation treatment. In addition, they took some detailed scans of my body which my doc, techs, and the computer will map out to determine where the radiation beams will hit, and how they will setup shielding for important areas, like my heart.

I'll receive 3600 Grays over 20 days (four weeks), starting next Wednesday. What to look forward to on this one? About 6-8 weeks of flu-like fatigue, a massively bad sore throat... And the end of cancer treatment.

Sore throat... Here's hoping for an ice cream cake for my birthday in May!

Two Down, Eight to Go!

2008-04-22T07:08:00.000-07:00

Just got my scan results back -- Its CLEAN!!

Per Dr. Szarka, my CT scans came back great - I no longer have any nodes popping up in my neck (I had some scar tissue three months ago), and my mediastinal (chest) mass - Again, scar tissue - Shrunk another inch or so to 8.2cm x 5.2cm.

The PET was great too - Nothing at all, except a hotspot in my right mid abdomen. Dr. Szarka immediately cleared that up that it was DEFINITELY not lymphoma, and probably just stool or a intestinal flareup. Forgot to tell her while on the phone that I had some stress-related "issues" that morning, so her reason kinda fits like a glove.

Her word on the scans: Wonderful. I'll take that!

I see her again in June, but I won't have any follow up scans for about 5 months now (due to radiation requiring additional time to heal up). Good stuff!!!

I estimate I have another 8 scans to go in the next 5 years before I'm done and considered "cured" (although that's for all cancers; Hodgkin's usually doesn't require that long and my onc already thinks this is the case).

Keeping the Fingers Crossed...

2008-04-20T11:27:00.001-07:00

Well, tomorrow I get my first post-chemo CT / PET scans, then our simulation run for radiation on Friday. What's it all mean?

Well, as for the scans, its pretty straightforward: If my scans are clean, that's a great sign and we start rads the following week. If its not clean, we head to either Fox Chase or Penn to begin salvage chemo (also known affectionately as savage chemo) and prepare for a stem cell transplant (as the "easier" chemo failed). Needless to say, we're rooting for the former option (and its the most likely scenario).

However, "scanxiety" has kicked in full-force. I'll know on Tuesday how things are. Say a little prayer tonight for me, if ya don't mind!

Yay for Work.... Whaaat?

2008-04-17T21:49:00.000-07:00

I'm starting to question my own sanity, as I'm actually looking FORWARD to returning to work. Per my oncologist (and my short term disability company), I'm scheduled to go back in two weeks on May 1st. The brain cells are starting to function again -- Not 100% yet by a long shot, but I'm not sleeping 16 hours a day anymore either.

My only worry is how badly rads will impact me, as I really don't want to take more time off. We will see!

Better... But the Nerves Still Suck!

2008-04-17T11:21:00.001-07:00

I ended up calling my onc, and she offered to have me come in and she'd check my neck. She took a peek, and while there's definitely something there... Its not lymphoma. She's chalking it up to scar tissue from my biopsy, or more likely my weight gain *cough cough*

Well, it sure as hell beats the alternative. In any event, off to our testing next Monday!

Don't Count Your Chickens...

2008-04-15T21:17:00.000-07:00

I'm having a bit of a rough week.

Ever since my last chemo, the right side of my neck (where we first discovered this lovely disease) has been a bit puffy and sore. Puffy scares me, sore confuses me. In any event, I almost feel like calling my onc tomorrow to ask if I can pop in for a quick check, but my guess is she will tell me to wait for the CT / PET scans coming up next week.

I just don't think I want to wait until next week without some form of reassurance. Is it probably nothing? Sure. I never felt sore or pain before when it was there. But knowing what the consequences would be... I'd rather have my doc take a peek and if she feels anything, I can try to move scans up and such.

Oh, and it looks like we're planning to go to Paoli Hospital for radiation. We really like the doc, and the care we've received thus far has been top-notch. Penn will definitely be my destination God forbid I relapse, but for now I think staying at my Fox Chase affiliated local hospital is for the best.

We're also going to go with late afternoon rads rather than mornings I think. I read somewhere that it works out better for working, as if I have it done in the morning, I'm more likely to feel extremely tired during the workday.

Starting to Wake Up Some...

2008-04-10T21:08:00.000-07:00

Well, following about a week of continuous hibernation, I'm starting to come to at this point. Still very much out of it, but feeling a lot better (short of the usual bone pain from Neulasta). Happy that should be the last shot of it.

What's on the gameplan? Well, the end of next week we should get our next PET and CT scans, and the week following I'll have my radiation simulation - This is the process where they actually map out and program the machine on how they will give me radiation (down to the millimeter). They will set up shielding for vital stuff like my heart and lungs (as much of my lungs as they can, anyway), and get me ready to rock.

Assuming we're good to go, radiation will start the week of the 28th -- Which should also be my first week back to work hopefully (yay!). Why am I going back before rads are done? Because rads aren't really supposed to start taking a toll until week 3, and if I need to I'll go back out then (partially or completely). At least it will give me a couple weeks to get caught up at work.

Rads are scary. While chemo isn't a pleasure cruise, ABVD (my chemo regimen) is relatively benign with long-term side effects. Radiation has the gambit of possible risks - lung cancer, thyroid damage, heart and artery damage. Better rads than not (since we have hodgkins NOW), but its the part that gives me some pause.

Where am I getting it done? Still don't have a clue. Do I go to Paoli, where I've met the doc (she trained at Sloan-Kettering, which is a well-known and respected cancer center), or HUP (Hospital of the University of Pennsylvania) which is a national cancer center, well-known and respected, and with a brilliant young doc -- Who I've never met.

I swear, this friggin thing is going to come down to a coin toss, you watch...

Zzzzzzzz....

2008-04-07T09:39:00.000-07:00

Well, my last chemo definitely put me into sleep mode. For the last three days, that's pretty much all I've done. Just as an example from yesterday:
- Woke up at 11AM
- Took my meds, back to sleep by 11:25
- Woke up at 5PM
- Have dinner
- Back to sleep by 11PM

My jaw feels like how it did after my early treatments, and I'm just achy. Also, my throat feels really tight (did I mention I'm whiny?). However, it looks like we're coming out the other side of things.

On Saturday, we went to Mechanicsburg, PA (about 1 1/2 hours west) to pick up our new puppy, McKendzie. She is drop-dead gorgeous. The breeder, Jill, was outstanding and we are so thankful to her after our pet-store experience a few months ago. We owe her alot.

I'll have pictures up shortly. In the meantime, Suzanne and I are in a real bind about where we are going to go for radiation. We have such a good feel for our Paoli doctor, but obviously HUP (Penn) is such a good name.... Then there's the issue of the 9 year old equipment (which Dr. Szarka doesn't think is a big deal - While she wouldn't tell us where to go, she said that shouldn't be a factor).

My brain is still mush, but I'm hoping to return to work in a few weeks. I'll probably call the boss and let her know that's my plan if all goes well (but I want to let her know the gameplan on where I'm going for rads).

Cycle 6B (Treatment 12) - MISSION ACCOMPLISHED!!!

2008-04-03T13:08:00.000-07:00

Well, that's it for the chemotherapy regimen known as ABVD. We brought a Thank You cake, a tray of cookies (which were AWESOME), and my Mom came over from Jersey to spend some time. It was great.

Did the usual routine, and got lots of hugs from the oncology nurses. The whole team over there at Paoli ROCKED. I couldn't imagine better care.

Speaking of, I think Suzanne and I have decided to get radiation done at Paoli after all. I may still be out of the office on disability when it starts (which would make HUP more difficult). Also, I may be able to arrange a modified schedule working mostly from Valley Forge for a few weeks to help transition (and while I'm getting treatments). We will see!

Its 4AM... Do You Know Where Your Brain Cells Are?

2008-03-30T01:17:00.000-07:00

I know where mine are -- And its not in bed. I've been sleeping like crazy, but then I have insomnia at night. Its freaky, but oh well.

Feeling better, but still sleeping like crazy as mentioned above. Short term memory is shot to hell. As much as I love driving, Suzanne is pretty much doing it now, as I'm becoming very forgetful of simple things (like when we went to Wawa for something, and I got out of the car, then went to lock the car... Only to realize I'd left the keys in the ignition). Its simple little things like that, and the inability to really focus. Sounds dumb and not that big a deal, but when you start to have stuff like this you start to question your control over things. Not good for a Type A personality like myself.

The good news is my oncologist thinks this will come back quickly once I'm off the chemo drugs for a few weeks (which will also help speed up my return to work).

Oh well, off to see if I can get some sleep.

Just Checking In

2008-03-25T09:39:00.000-07:00

So far, disability hasn't been the vacation its cracked up to be. Still feeling cruddy, and Suzanne still expects me to do stuff... So much for the Life o' the Lazy. Doing OK overall, memory is really crappy at this point. Symptoms other than that have subsided (which of course adds fuel to my phobia fire that I'm now immune to the chemo - time for an Ativan).

Treatment #11 (Cycle 6A) - And Then There Was One...

2008-03-21T05:59:00.000-07:00

One more to go party people, one more to go. Yesterday went without any major issues. I didn't have a whole lot of questions: They knew I was going out on disability, so the tiredness, weakness, and memory issues going over into the second week was a known. I brought up the mouth sores I've had (a new one, yay for me), and we got a standard treatment and a very unstandard (but awesome one) from Dr. Dabrow (Dr. Szarka was on vacation): I have a script for "magic mouthwash" (its an oral lidocaine solution or something that will numb the mouth before I eat). The unstandard treatment is to get a football mouthpiece so the teeth don't grind on the sores - Making for little pain and quicker healing. Needless to say, we'll be trying both.

Sue and I talked, and we're going to go to HUP for radiation. While my new radiation oncologist may be Doogie Howser, MD, all reports coming in say he's a serious brain trust, and trained until Yoda (if you don't know who I'm referring to as Yoda, read my earlier post on the Rad Onc visit). He wants to see me pretty much as soon as my latest PET and CT are complete in about four weeks, so we can finalize the gameplan.

So for now, we sit and relax - Tired, weak, and ready to put this C thing waaaay behind me.

One more.

And That's That - Disability

2008-03-18T16:41:00.001-07:00

Well, I'm now officially off the "Commuting to Philadelphia" list for the time being. I was able to handle my turnover stuff early, so since I have no specific need to be in town (and I'm feeling like crap), we're out. I'm expecting to be out for the next 4-6 weeks, but its really up to my doctor now - If anything, she'll keep me out longer.

I'll probably end up posting more here, since I'm going to have loads of free time. On the downside, I officially left "Good week, bad week" behind, I'm sore from walking 5 blocks, the memory is shot, and I have mouth sores that just made my favorite meal (beef stew) excruciating to eat.

Two more people, two more and that's it...

P.S. On the plus side, ALL of my hair is growing back - My father is now back to being the sole baldie in the family. Except... I like the bald w/ a goatee look. I think I may keep it through the summer in fact.

P.P.S. I love you people - Friends, family, new Hodge Homies... You really get an appreciation for the people you know.

Disability... Almost Made It

2008-03-11T06:36:00.000-07:00

Well, its Tuesday, and I'm home again. So, having talked it through with Suzanne, I think I'm going to have to take disability time with only two treatments to go.
Tiredness, weakness... I was working through those. However, I think I now have "chemo brain". I thought chemo brain would be forgetfulness, etc. What I didn't expect was to feel like I'm in a fog 24/7. I can't concentrate. I can't think. Therefore, I can't get my work done.

I'm frustrated more than I've been thoughout this thing. I've managed to make it though while only requiring two weeks of FMLA time. Maybe its for the best to rest up the last four weeks, and get ready for radiation.I'm still pissed though (and not in the fun British way).

Treatment #10 (Cycle 5B) - Easy Like Sunday Mornin...

2008-03-06T14:08:00.000-08:00

"He's not human. He's like a piece of iron."
Ivan Drago, "Rocky IV"

Hey, you lurkers! Just because I'm squeaky clean of cancer, having fun and no major issues (outside the weakness and tiredness), y'all mind LEAVING some messages? It gets lonely being the only one writing to this blog.

So, here we are in the 4th quarter of my football game against Hodgkin's. Still doing treatments, yada yada, and hoping Hodge never wants a rematch after I kick its rear. My hair is growing back in everywhere (finally), and my symptoms seem a bit easier to manage. My hair apparently is normal and can happen. The symptoms are more likely attitude more than a lessening (hey, three docs say I'm clean, I'm near the end of chemo.... Yeah, I'm gonna be happy).

This weekend will suck, as I'll be tired and weak. I'm staying home Monday too for that exact reason. However, the other effects that go into the week really haven't been so bad. I have my appointment with the youngster radiation oncologist tomorrow (she's good, I just call her that because she's only a few years older than me), but she's more of the 2nd opinion, as for practical reasons I need to be treated downtown (so I can work).

So, I'm happy since I'm clean. No way in hell was I letting my cousin come out the winner in this race, haha - We'll tie and both be cured.

And that's alright with me.

Preparing for the Future

2008-03-05T15:55:00.000-08:00

Well, tomorrow takes us into the home stretch, the 4th quarter of my treatments. I feel GOOD. I don't know if that means the treatments aren't bothering me as much, if I see light at the end of the tunnel, or what. I know I'll be tired again tomorrow, and for the next 4-5 days, but no biggie.

So, as most of you know I've worked throughout treatment (minus some days here and there as needed). Honestly, a lot of that had to do with my new role at work. I was named Solutions Architect for our division a whopping ONE DAY before I was diagnosed and this nightmare began. I stepped out of my supervisor / management role, and went into a entirely new role within the company - I didn't want to screw it up.

Well, while it leaves me wanting to get a refund on my MBA, I've had more fun in the role than I've had in years. I'm back doing some coding, while having a leadership role and say in the strategic design of our systems. As the role gets more exposure and work (as it has), I'll probably get some staff to assist me (there just wasn't headcount for this year). The fun is what's kept me trying (and its nice to hear your manager say your work effort is "Herculean"). I'm learning very current technologies, Microsoft's toolset: .NET, Reporting Services, Analysis Services, C#, SharePoint, PerformancePoint. This is good stuff - Its awesome putting together my company's next-generation portal, and it doesn't hurt the resume (not that I plan on going anywhere).

Its odd, but after my manager made me feel... Secure... With my job, I have some serious loyalty towards my company. Will I be a technical manager at 35 as was my personal goal (which is hard in my stodgy company)? Possibly, but probably not in my new role. Am I happy? Hell yeah. I can take my experience as a Solutions Architect and apply it in plenty of places; I just happen to love my company as well.

OK, enough gushing over my work. However, I'm starting to finally have thoughts of a future beyond cancer. As curable as Hodgkin's is, as great as the treatments are at nixing this stuff, its still CANCER. Your mortality definitely comes into focus, and stays there.

Now? I'm thinking of other long-term, strategic tasks I want my role / group to take on, tools I need to learn, a camping trip this summer to plan for, and a "Couch Potato to 5k" running plan to enact. I've applied to join a board committee for the Leukemia and Lymphoma Society, as well as offerred to speak publically on its behalf. I'm also trying to start a "Light the Night" Corporate Team.

Beyond that though, I'm really making sure I make more time for the kids and Suzanne. While I think I'm cured and my doctors feel the same... You never know when you might take a medical test and hear something you don't want to hear. That's the biggest lesson I'm taking out of this.

ARRGH!

2008-03-03T11:10:00.000-08:00

Well, I got to see Dr. Glatstein today down at HUP. Amazing doctor, he reminds me of the old Norman Rockwell style docs. He's also on Philadelphia Magazine's top docs list as well as the national Top Doctors in Cancer list.

And he's going on sabbatical about a week before I'd start radiation.

He's going to Oxford for six months. SON OF A B**TCH!!! Don't get me wrong, the doctor I'll see in his place is good (Dr. John Plastaras), but I was going to see THE MAN. The guy was involved in research on Hodgkins way back in the 70s for crissakes.

The good news out of today:

He's the third doctor to confirm I'm PET negative and in remission (yay!)
Based on what he's seeing, he thinks shielding my heart and lungs will not be difficult - The mass shrunk in the right places.
Paralysis is highly unlikely (1 in 10,000 chance).

Reports of my Demise May be Greatly Exaggerated...

2008-03-01T06:02:00.000-08:00

"We came, we saw....we kicked its ass!"
- Dr. Peter Venkman, "Ghostbusters"

So, do I have some goodies for you all today! As I have my appointment with our Radiation Oncologist on Monday, I received copies of all my chart reports, surgery info, and SCANS! Naturally, I took a look and made a copy. So here goes the slide show:

Here is a picture of a comparison of my October scan (when I first found out) to my February scan. In a PET scan, I get injected with radioactive sugar. Cancer cells tend to eat this sugar a LOT faster than other cells, so after some time they appear on the scan. Some other cells also chew this stuff up: The very dark, large black spots on my head and in my groin are normal things - my brain and my bladder. The heart, liver, and kidneys can also show some uptake safely. What's not normal is that nice big set of black in the middle of my chest on the left, as well as up in my neck. That's called Hodgkin's lymphoma, friends. The right hand scan looks much nicer, don't you think? It all cleared up! Oh, and don't worry about my bones showing in the newer scan - That's from the growth factor (Neulasta) they give me so my bones produce more blood cells (to keep up my immune system). All in all, can't be too upset with that.

Here are some more detailed scans, that combine PET and CT imaging. I think its pretty neat stuff, but really shows how incredible these technologies are. The images are both showing me from the back, on my right side (first being from October, second from February). The images in the upper left and right, and the lower left are CT images showing "slices" of my body. Check out the glow in the upper left frame on my October picture -- That stuff's dead, woohoo! Oh, and one edit -- I accidentally circled part of my heart in the October frame (the lowest circle) - That's safe stuff, and not bad.

October, 2007:

February, 2008:

Worries and Resolutions

2008-02-25T06:24:00.000-08:00

So, I've been given a clear PET scan - So why do I still have constant feelings of dread, feelings like nodes are popping up on my neck like corn in a movie theater popper? Why can't I just trust my doc that it's clean?

In any event, I think we've started the downhill slide with treatments. As I've mentioned before, these things are additive: Treatment 2 will be worse than Treatment 1, since its a combination of 1 and 2, etc. Well, I haven't been this weak or achy yet, so the annoying effects of treatment are definitely picking up. However, here's hoping it whacks any remaining cancer out of my system.

On the puppy front, we found a small breeder in upstate PA who was VERY sympathetic to our story, and seems like the kind of people we'd want to deal with. They have a few wheaten terrier pups that would be available in six weeks that we may decide to look at, giving the current situation a little time.

Sometimes Life Isn't Fair... And Sometimes its Downright Evil

2008-02-24T05:16:00.000-08:00

As I mentioned last week, we bought a puppy as a surprise for our daughter. He was a lazy sucker, but nothing out of the ordinary (other than picking up going outside very quickly). on Thursday, he was lethargic all day, and stopped eating. We got him to the vet on Friday (in the middle of a snowstorm, but homie don't play when it comes to his dogs).

The vet wasn't sure what (or if) anything was wrong with him either, but wanted to keep him overnight to get some xrays and bloodwork. Well, it turns out he had pneumonia, and didn't respond to antibiotics. We got the call this morning that he died.

My daughter is devastated, as are the rest of us. Talk about highs and lows this week.

Treatment 9 (Cycle 5A)

2008-02-21T14:42:00.000-08:00

"You will not laugh, you will not cry. You will learn by the numbers. I will teach you."

Gunnery Sargeant Hartman , "Full Metal Jacket"

So, why do I have Gunney Hartman yelling in my blog? Because after tons of good news, I'm still freaking myself out (probably for no better reason than being obsessive compulsive). Let me explain:

First, the news that has me worried:

On the official Radiologist's report for my PET, it says there is "slight to absent uptake, same as background" in my chest still. Per my oncologist, it's a hedge on their part because they can't really see anything, as it is blending in with the chest scar tissue (and probably is part of the scar tissue). There's also a 1.2 cm lymph node still in my right neck, but there is zero PET uptake anywhere in that region (meaning anything that's there is scar tissue, normal lymph nodes, or dead cancer).
My chest mass hasn't shrunk as much as I'd hoped. It was larger than originally thought (it was 12x9cm, not 10x9), and shrunk down to 8x6cm. Its about a 40% drop, but we still have a grapefruit in there.

Now, onto why it probably doesn't matter (which Suzanne will tell you is completely the case and I'm paranoid. She probably enlisted Gunney Hartman above. Evil woman ;-)

My oncologist has no worries about that label on my PET report - Her evaluation is that its nothing. My PET scan says we are NED (No Evidence of Disease). We're cancer-free at the moment.
I asked about getting the port out before our vacation in July. She said yes - She chemo'ed me with curative intent and believes at the end, based on these scans, I will be. No reason to keep the port around. If she was spinning the confidence I'm good, there's no way she would have agreed to that. This is probably the most important factoid for me.
Mass doesn't bother her, as we're going to radiate it, which will shrink it some more. Anything in there will be dead (if there's anything left at all).
She is stating we are looking at a 90 to 95% chance we're cured now, following these scans (of course, everyone has a 0 to 100% chance of relapsing, it depends on the person, yada yada. But statistics dont lie).

Her POV is we're either cured or will be by the end. That's some pretty nice info from an oncologist who is known (both from my personal experience and others I've asked) to be a no-BS kind of doctor (another reason we love her).

So why am I so friggin spooked? Honestly? If I think about it some, its probably due to the fact that we're approaching the end of treatments. Right now, if anything is in there, chemo is going to kill it if it decides to show its face. In less than two months, there won't be any more chemo, just radiation. Then a few weeks after that, there will be nothing but follow-up scans. That really is a scary thought. I need to get out of this whiny mode. I need Gunney Hartman to beat the crap out of me and remind me I have b*lls ;-)

Thank you all for the support you're giving me. We're near the end friends, and we can get on with life. I'm going to have scanxiety every 3 months for the next year, then 6 months the year after that. But I think we're good, just have to get over this silly nagging thoughts.

On a side note, the chemos are really starting to hit me kinda hard now right after treatment. I'm weak as hell, and TIRED. Only three more to go, but that "additive" effect is definitely kicking in

Pre-Treatment Jitters

2008-02-21T02:29:00.000-08:00

"Steve, you've just been told your PET is clean. What are you going to do now?"

Well, I'm going to worry about something else, of course! Disney will have to wait.

I'm really curious about how much scar tissue is left inside. I'm hoping SuperOnc will let me get the port out in May following rads - We're going camping / hiking in Maine this summer, and I get to backpack the 3 year old when he gets tired of walking. The strap will be sucktastic if its over top of the damn port. Some oncologists are OK with this right after treatment, others will make you wait a year or two (in case you have a relapse).

I'm also getting nervous about the end of treatments. I have a clean PET, and I'm getting chemo for any of the little buggers should they try to multiply again. When treatments end, that's no longer the case, and a single friggin Hodgkins cell could start its process over again. That's scary stuff, and will lead me to needing a Stem Cell Transplant.

Speaking of, I'm also thinking about my Philly Hodge Buddy Bekah, who's back in for round 2 of the ICE chemotherapy protocol (its used pre-SCT, and makes my ABVD look like weak Kool Aid in comparison). Here's hoping it goes easy on her.

CLEAN!!!!

2008-02-19T16:40:00.000-08:00

"Zed's dead, baby. Zed's dead."
- Butch, "Pulp Fiction"

Can I get a HELL YEAH?

SuperOnc called this morning (as luck would have it, while I was not in range of a cell tower on the train) and left me a message - The PET is negative. We are clear of the no-good Hodge!

What does this mean? No, it doesn't mean we get to stop treatment and call it a day. PETs are hyper-sensitive; Inflammation from a cold could actually show up on these. However, a couple cells or a single one would not appear -- And it only takes one cancer cell to survive the chemical holocaust I unleased upon it to re-start this fun all over again. So, we do our last two cycles of chemo and the radition to be sure. I'm OK with that - I'd like to avoid this pleasure cruise in the future.

She also mentioned that I have some thickening of the chest wall, and that this is expected (just means my PET scans have a nice light shadow in the chest area). What she didn't mention was how far my chest mass reduced with regards to the scar tissue, but I guess we'll worry / hear about that on Thursday.

Right now, we're just enjoying the dance with NED (No Evidence of Disease in cancer parlance).

Oh, and a side note, we got a dog. Lazy bum is lying down next to me now.

ARRRRGH!

2008-02-17T08:40:00.001-08:00

Can it be Monday yet?

Counting Down to Scan Day

2008-02-13T11:04:00.000-08:00

Well, the countdown to scan day has begun -- My echocardiogram, CT, and PET are set for next Monday. From what I've been told, Dr. Szarka isn't one to leave patients waiting in the wind for results; When she gets them, I'll get a call one way or the other.

I got pretty pissed off at work yesterday. A co-worker of mine, who knew I had cancer and was undergoing treatment, sat down right next to me in a 3 hour meeting with some rediculous kind of toss-out-a-lung cough. Seriously, he was hacking one up every 30 seconds. Now, to make matters worse, he's on my left and the projector is set up for the right - Meaning we're turned in that direction, and he's hacking down my back. Partially my fault for not saying anything, but a lot his fault for being an idiot on the subject.

What makes matters worse is if I catch something now, it could potentially appear on my PET scan due to any inflammation. What does that mean? It means I could have a Complete Response but not look like it on the scan. Grr.

What a busy two weeks at work - Not that I'm upset by that. I appreciate that my boss has me WORKING and not just giving me busy work. Hell, I'm just happy to be working (dear GOD, did I just say that???). However, I'm home today -- Neulasta is a wonderful, evil thing. Its wonderful in that it keeps my counts nice and high so I can take my train every day to work without worrying about getting hospitalized. Evil in that I get two days of really bad bone pain, which started last night. Percocet to the rescue, but I can't go to work on that stuff.

Other than being really busy, everything is same ol same ol. Sadly, I'm feeling a bit lonely since most of my family and friends stopped calling or visiting constantly (Yeah, that's right - You know who you are, guilttrip guilttrip guilttrip). If you were worried I'd be annoyed - Don't be. Give me a call, pop me an email. Speaking of, I'm adding my email to my profile, if people want to contact me with questions or info they don't want to leave as a comment.

Suzanne and I are trying to figure out what we're going to do for vacation this summer, once the evil Hodge is all dead and treatment is over. Right now, the plan is to rent a pop up and head up to Acadia National Park for a week -- We loved it with Sara 5 years ago, and we figure Steven will like it too. Of course, laying on a beach in the Carribbean wouldn't hurt either!

Any ideas for stuff with a 3 year old and a 12 year old?

Treatment 8 - Down to Four!!

2008-02-07T20:31:00.000-08:00

CHEMO FACT OF THE DAY:
Chemo drugs wouldn't be so bad if they weren't so chemo-ish...

Well, we had our latest treatment today. I reviewed the results of the early checks with did for possible Bleomicyn toxicity (which can damage the lungs, and require pulling the drug from the chemo regimen):

Dematologist: The "cyst" things on my hands won't hurt me in the long run, and shouldn't spread off my hands. With a wink, she let me know that its a personal decision to either deal with it, or remove the cancer drug (Guess which answer I went with?).
Pulmonary Function Test: My lungs are working BETTER than before. We have no worries at this point (meaning we're not getting lung damage).

Treatment itself went fine, no issues in the office and we were out by around 2PM. The treatments are REALLY starting to cause some serious tiredness and weakness for me. I napped about three times today - And its making me wonder if Fridays are going to become "off from work" days rather than "work from home" days for the last two months.

Really can't wait for the PET scans, I need to know this crap is dead. Good news is that Dr. Szarka does not wait on stuff - She'll give me a call and let me know where we stand when the results come in. This is the serious one, boys and girls -- If this test is clear, we're in VERY good shape for the long-term. Doesn't mean that if its not 100 percent clean I'm dead, but it a much better prognosis if we have a Complete Response.

When I was in college, if I aced a test or major project, I'd come home and blast "The Humpty Dance" by Digital Underground. Partly because I think that's one of the most cocky songs ever made, but also because it made my roommate nuts (Sue wasn't a fan either, but she didn't give me issues with the A grades). I have that song locked and loaded in iTunes -- I get that call, the first thing I do when I get home is play that song. Booya.

I'm going to try to get Before and After copies of the PET scan, to show you what it looked like. Time for bed in the interim, see ya all later!

Incoming!

2008-02-05T22:39:00.000-08:00

Hi folks! Just wanted to give a quick update on what's coming in the next two weeks. Between the treatment on Thursday and the next, I'll be getting re-stated. What's that, you ask? Well, loyal readers, I'll tell you.

When this fun adventure started, I received a bunch of tests: A chest x-ray, a CT scan, a PET scan, a PFT and a MUGA scan. I'll run through these for those of you who don't know what they are (thank Melissa for pointing out that I may have picked up some medical lingo).

Chest x-ray: If I need to explain this, feel free to leave me a comment so I can ridicule you with the rest of our friends, haha.

CT Scan: CT stands for Computed Tomography. In my case, they will check me from neck to hips, looking for any enlarged lymph nodes. This may pick up some scar tissue on the scan, but is important in seeing that everything that was normal... Still is.

PET Scan: This is the big one. This is a VERY sensitive test that involves me getting a radioactive dye injected into me. This dye is actually a sugar, and cancer cells apparently gobble this up at a higher rate than regular cells. Areas of "uptake", or where the sugar is eaten quickly, are usually cancer areas (or the bladder or brain). This is a VERY sensitive test, meaning its also prone to false positives. We want this one clear though, its the most important one for trying to predict how treatment is going.

PFT Test: This is my lung test. One of my drugs in the chemo cocktail can cause pulmonary fibrosis. This would be a bad thing too, so they want to make sure my lungs are still functioning right. I breathe a few times in a big tube, and they tell me how good my lungs are.

MUGA Scan: Another of the drugs can cause problems with my heart. Similar to the above, they want to make sure the ticker is still going strong.

Its going to be a busy two weeks. I'm really hoping for a CR based on the scans above (Complete Remission). Best chance at cure, should we get that now.

So I Rooted for the Giants Last Sunday...

2008-02-05T16:11:00.000-08:00

... and I still feel dirty for it. Here's hoping the Iggles get their act together for next year.

Getting Ready for Phase 2

2008-01-30T21:18:00.000-08:00

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.

A Night of "Normal"

2008-01-28T16:50:00.000-08:00

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.

Treatment 7 (5 to go!)

2008-01-24T13:57:00.000-08:00

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.

Ready to Start the Downhill Side...

2008-01-23T20:58:00.000-08:00

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).

Do the Bone Pain Boogie!

2008-01-16T07:02:00.000-08:00

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!

Treatment 6 (Cycle 3B) - HALFWAY DONE!

2008-01-10T16:08:00.000-08:00

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!

I HATE THIS

2008-01-06T11:16:00.001-08:00

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

Update:

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.

Hakuna Matata

2008-01-02T19:04:00.000-08:00

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.

Interesting Changes...

2007-12-31T06:59:00.001-08:00

Well, without jinxing myself, the dose reduction has made a huge difference in symptoms. No jaw pain (yet), no "little c" (yet)... Just really, REALLY tired. I'm working from home today and have a few things that need to get done, but they're going to have to come in spurts - I see my lunch involving a nap this afternoon.

Oh, and didn't get any nausea this time around either. The neurotic in me wonders if they gave me 10% of my previous dosing, not a 10% reduction, ha ha.

Here's hoping everyone has a happy, HEALTHY new year!

This Disease Sucks

2007-12-29T15:26:00.000-08:00

I just found out today on the support forum I visit that one of the bravest women on there is not doing well, and may likely leave her loving husband and four kids very soon. Nothing worked for them, none of the treatments available.

"Good cancer" my ass.

Treatment 5 - A Long Post

2007-12-27T17:23:00.000-08:00

Hi all, this is going to be a long one, so grab a coffee and a comfy chair. I want to go over some things that happened today at the Cancer Center, as well as give everyone a quick tour of the treatment and my bald head (for everyone who hasn't seen me since we started).

For those of you who haven't seen the new "I Wanna Look Like Kojak" makeover show, here's a shot of Steve and I, sans hair:

OK, lets start with the first bit of news. I felt good going in, but the fact is I've been having shortness of breath issues. There's two things they really watch with this regimen: the lungs and the heart. One of the drugs can cause permanent lung damage (pulmonary fibrosis), and if there's any significant sign of it, they pull the drug. While Bleomicin is not the most critical drug in the cocktail (in fact, there are ongoing studies that seem to show its not really needed), I want to stay with "what works" and not get it pulled if I can help it. Second, I've had some occasional puffiness in my hands - The oncologist thinks its related more to the neuropathy (numbness in the hands and feet) than my heart -- Thank God.

So, where is this leading? OK - Dr. Szarka (aka SuperDoc) has recommended (and I agree with) a reduction in the dosing of the medication. The best description of why came from my superbrain niece who is heading into medical school (Dr. Szarka gave her props for the analogy): Suppose you have a headache. You can take two Tylenol and the headache goes away or is tolerable. You can take 20 Tylenol and only see marginal (if any) improvement, but you just killed your liver. Same applies here. There are three methods they use to determine dosing, and about a third of doctors use each type:

Your "ideal" body weight: The "ideal" weight based upon height. This would (for me, being big) result in the lowest amount of chemo drugs - By a long shot.
Your real weight, to a maximum of 2.0 mass to body surface area (I think). This is a more complicated formula that takes your weight into account, but has a ceiling.
Your real weight. This results in the maximum dosing (for someone big like me).

Dr. Szarka has me on #3, and given my ideal weight is below 190, that means there is a HUGE difference in the amount of drug I get now vs. the #1 method. Based on this and my numbers (which are also dropping), she made reductions of about 10% in the Bleomicin and the Vincristine. The reductions still have me above 1 and 2, but in her mind it will allow me to continue using the drugs - Something she is afraid she'd have to pull if she continued at the higher dosing. Everyone involved in the medical field has told me before its not a problem, and logically I know it. Heck, even my Mom told me I was an idiot if I went against the doctor we trust. Yeah, funny how that kicks you into gear too.

We will play it by ear. I'm still going to get my symptoms, but the hope is given the very high cure rate, my chemosensitivity, and the fact that we've kicked the crap out of this so far... She doesn't want me curing this only to find me requiring oxygen 24/7 and unable to button my shirt, or as Suzanne's concerned not being able to zip my pants when she's not around (no, she does not zip my pants at present - perverts). I'm on board with this call.

On the brighter side of things: We went over the vaccine trial with Dr. Szarka, and the researcher in her came out right away in a loud "Ooooh...". She then got her game-face back on and said there's always risks too with trials and vaccines, but she will research it for us. Given its based on a very successful existing vaccine, it may be something she agrees with too.

We also covered the next steps following our February PET scan (which shows if cancer cells are still active anywhere in my body. Her opinion: She has every expectation that we will be in CR (Complete Response - no sign of active disease). If there is anything, it will be small and either a) inflammation and not active disease or b) small amounts of slow-growing Hodgkins in the nodes that are going to get nuked (radiation) at the end.

While she doesn't at all think we will see unchanged or enlarged uptake in my chest, she's open to possibly finishing me off with the BEACOPP cocktail for 3 cycles. BEACOPP is used for stage 3 or 4B'ers, where extremely aggressive treatment is required. The good: BEACOPP gives everyone a 97% cure rate. The bad: BEACOPP has about a 20-30% chance of causing leukemia about 10 years down the road. Again, she is fully expecting a CR (and I should note that while she is very positive, she doesn't throw stuff like that out willy-nilly; She's been right 100% of the time she's said something like that). So, I consider that badass good news.

OK, on to the tour of the Paoli Cancer Center treatment process!

First, you have to get a Barco Lounger seat. They have a bunch of 'em: Some are private rooms, others are semi-private with TV screens, or you get plugged into a public lounge area. I get in early to snag a private room so Suzanne and I have Movie Afternoon (Today was Pirate's of the Carribbean - At World's End; Not bad). So, I plop down into a Lounger, and Suzanne gets a fairly comfy chair too.

Second step, they plug me in and pull bloodwork before I get a visit with the doctor, where we go over things. Dr. Szarka, in my opinion, is one of the best doctors I've worked with. Why? She puts up with my neurotic-ness, knows poor Suzanne deals with it the other 13 days of a treatment, and (most importantly) takes the time to get ALL of our questions answered. What's really neat is we came in with a list of 11 questions. She asked 8 of them herself. She knows her business.

Once we have the treatment gameplan, I go back to the Barco and in about 30 minutes, out come the custom-mixed pharmaceuticals. My drug combination is known as ABVD. This is the "tried and true cocktail that kicks Hodgkin's ass.

They give me the Adriamycin shot first (aka "Big Red", due to its Kool-Aid color), then the Bleo and Vincristine (I always forget the order), followed by the brown-bad drip of Dicarbazine. All in all, treatments go from 4-6 hours.

We're still in very good spirits (Hey Santa! I still want that clean PET scan for Christmas!!!), even with the reduction. I'd be lying if I said I wasn't scared about it emotionally, but I've had too many people with medical backgrounds (including my doctor) tell me this makes sense and will not make a relapse more likely. In fact, Doctor Szarka point-blank said if I relapse, it will not be because of a 10% reduction in two drugs. There's no risk from her perspective.

Right now, I'm tired and feeling weak, but on-board with the changes. No queasyness like I've had the last two treatments, so I'll take it since Fridays are work from home days (woohoo!). However, if my counts keep dropping with Neulasta, I may have to spend the last few months working 100% from home (to avoid infection risk) or on disability. Here's hoping we don't have to, but again: The goal is to kill this thing, so we do what we have to do.

Sorry, I've Been Slackin...

2007-12-21T20:11:00.000-08:00

I haven't posted in a while, generally because there hasn't been anything interesting to post! Symptoms are the same ol stuff, dealing with it the same ol way. I think we're pretty much in a routine at this point.

One thing that I'm watching though -- I'm noticing myself getting a little out of breath relatively easily (playing with Steven for a few minutes, etc.). It may be nothing, it may be just the effects of treatment (I am getting more tired). The other thing it could be is Bleomicin toxicity; Bleo is one of the 4 chemo drugs given to me. Its not at all uncommon for it to happen, and it can damage the lungs if not caught in time. I'll let the doc know, and she can decide if she wants me in for another pulmonary test. My lungs are crystal clear, so I'm still learning towards 1 or 2.

I decided to not go to the Hodgkin's support forum I visit for a little bit (a couple of weeks at least). Its nothing in particular; While I know the vast majority of people recover from this and move on, there's a large population of relapsers there which, for some goofball reason, scares me right now. I don't want to think of relapse, not right now. And that's nothing against them (of course) -- They are hardcore cancer killers, and most have awesome experiences following SCT (the next step after relapse). I just don't want to think about that, because its putting ideas in my head; Its purely selfish reasons, but it is what it is. Suzanne is still checking in though and keeping me in the loop.

My Neulasta fun (aka all-over bone pain, yeeha) should be ending by tomorrow, and I'm looking forward to an awesome Christmas week. If I don't post again before Tx5, everyone have a merry Christmas!!

Dear Hodge...

2007-12-16T15:24:00.001-08:00

Dear Hodge, here's why I'm going to beat you: I'm going to redo things with my kids like below, and you're not going to stop me.

May you die a quick and complete death.

Love,

Steve

(For those interested, first pic is from the beach at Duck, Outer Banks North Carolina. Second picture is on top of a trail in Acadia National Park, Maine)

Treatment 4 - Cycle 2 Down, and a Third of the Way to the Finish Line!!!

2007-12-13T13:29:00.000-08:00

OK, just had my next treatment. Feeling funky (as usual), and took the IV Ativan there for my stomach. Post-treatment 3 was the first time I actually experienced a little queasyness. Trying to nip that in the bud.

So, looks like the side effects were much better this time round when we actually WORKED on them, ha ha. White counts are higher than the last tx (up in the 8's), so that's good too.

Downer: I chipped the crown on my one back molar. I had a root canal a few years ago, and the crown's porcelain chipped a big chunk. Its one of the gold with porcelain over top ones, so I don't think I'm in trouble as long as the metal's on, but even so -- You can't see the metal, there's still porcelain over top.

My onc wants me going nowhere near a dentist until we're done, due to the risks of infection. As its still fully covered with porcelain, not loose, and not causing pain, I tend to agree with him.

Speaking of, Dr. Dabrow is an excellent oncologist (he's also a blood cancer guy), but he's more the research-seeming type than the teacher, which is what we love about Dr. Szarka. Then there's the jokes - I think Dr. Dabrow is definitely the straight man to Dr. Szarka's comedy routine. Still, I feel like I have some serious care at this place.

Yes, I'm Still Here

2007-12-10T19:36:00.001-08:00

Sorry about the lack of posts. I've just been... Good. I feel great, which of course means its time for another treatment. I have lots to go over with Dr. Dabrow on Thursday though:

There's a major shortage of the isotope used for PET scans, which check to see if there's any living cancer cells left in a body. Seems the brain trust that is our medical industry and government decided that having a single source for the stuff -- a 50 year old reactor in Canada -- Was a fine idea. Well, said reactor's been down a while for repairs, and the supply has dwindled out. Here's hoping we're good for my February scan.
More importantly though, I'd like to get his opinion about a Phase 2 trial going on down at John Hopkins U Hospital in Baltimore. Seems they have a VACCINE that fights Hodgkins cells. No lie. Its for folks who complete initial treatment to clear out the cancer, and will help train your body to fight off any cells that decide they might want to make a comeback. It sounds freakin awesome; While I have a 85-90+ percent chance this isn't coming back, every little bit more is great in my eyes. I'll have the app in tomorrow, and if I'm selected I'd get the vaccine sometime next August (once all my treatments are done).

The kids are getting real excited for Christmas. We have the tree up and decorated, and Steve (who loves trains to begin with) made our office TV into the "Polar Express" channel.

We Cured the Big C!!!

2007-12-06T09:21:00.000-08:00

No, not cancer (yet). Constipation.

The plan of action my oncologist put me on seems to have done the trick. I'm not having horrific gut pains, so I think I'm back to "Good Week / Bad Week" (yes friends, that's a victory in my book).

My plan of action was SenoKot S, two pills every day following treatment (one the night before). When things started to "seem" like they were getting stopped up, Milk of Magnesia on top of the SenoKot kept things going.

Yeah, its gross. Welcome to my world. However, if one other Hodger reads this before treatments and gets to avoid the agony, its worth it.

My guts still feel a little off, but I'll take it (and it could be the SenoKot). Other than that, I can't shake the tiredness. I don't know how to describe this. The constant sleeping is over, but I can't seem to just "wake up". I'm completely out of it.

I'm home again today (working, but home). I had to take two days off at the beginning of the week, and two days working from home. If this keeps up, I may have to consider disability. That would upset me, as we've been evaluating SQL Server Analysis Services, and the geek in me is having some fun with that.

Speaking of, I got my temporary handicap placard for the car. Its bright red, and good through May (i.e. radiation). Do I need it most days? Nah; At least not so far. However, for a day or so after treatment? Its amazing how weak you can feel.

On the same token, I spoke to our parish priest about mass and communion. Apparently I qualify for home visits (since church is pretty crowded, and I'm supposed to avoid crowds). I get to have mass delivered, hold the anchovies.

Dr. Szarka will be off on vacation for my next treatment December 13th, so Dr. Dabrow (the head of the Cancer Center) will get to see me. Lucky him, ha ha.

P.S. And what the hell, I've had some SERIOUS bloodshot eyes the last few days. It looks like I've been smoking some sort of alternative medicine...

Hibernation

2007-12-05T09:14:00.000-08:00

Wow, the tiredness has finally arrived. Up to this point, I had about 2 days of tiredness, then was back to normal. This treatment, no such luck. I slept literally all of Monday and Tuesday (Days 4 and 5) away, and I'm working from home today (glad I am - I'm getting really tired again). I can see how this will be frustrating.

Now, partially its my own fault. Normally we plan the weekend after chemo to be free, so I can sleep like crazy. Unfortunately, we made a bunch of plans this past weekend and while I was up and running around, I think it just delayed the inevitable. Lesson learned, we'll make sure the weekend is for sleeping from now on!

On the other symptoms side, I think we're getting the hang of things. The jaw stuff is pretty much gone (just some residual dull aching), and no gut pains yet. The Senokot and Milk of Mag is taking care of business.

I made a big mistake in reading a bunch of articles online too. I read something about the 15 year disease-free survival rate being an abysmal 60-some percent. That doesn't jive with the 85 percent cure rate, but hey leave it to me to find some fun reading. I have 13 days every two weeks where I am completely confident in beating this thing, then 1 day where I let a little doubt creep in. Thirteen days where I'm excited since my treatments are down to single digits, and one day where I'm like "Oh s**t, I have 9 more of these mofo's left?".

I HATE feeling this weak. I swear, I'm getting back into powerlifting when this is done, damn the waistline.

Oh, and beyond that: We're looking for a dog. The kids have been begging, and its supposed to actually be good for me. As long as Suzanne and Sara are willing to do the cleanup for now, why not. I want a bulldog if we can, so ugly they're cute.

Getting Into the Routine

2007-12-02T09:55:00.000-08:00

I don't know if its good or not, but I think I'm getting into the rhythm of this stuff. My mouth is starting to hurt a little (Day 3, makes sense), but not as bad as last time. I'm being proactive on the constipation crap (sorry, pun intended), and haven't had any issues yet. I should have my steroid crash tomorrow, be down for a night, then bounce back happily with my jaw pain. Its like having a school schedule - You know what you have coming up!

Only thing throwing me off this time is I don't have anything to judge improvement anymore -- Now that my neck is "normal", its hard to tell if the stuff is working. However, I emphatically state I prefer this to having something come back to let me gauge progress, haha.

I definitely had some queasiness this go-round, I'll have to keep an eye on that. Its partly my fault, I forgot to take my Emend and Kytril first thing in the morning. Once I took them, about a 1/2 hour later I was golden.

My son's 3rd birthday is tomorrow, so we're celebrating today with the local family and friends, then heading to my parents house next weekend for the Jersey folks. Given I'm in hibernation mode, I'm hoping I stay up for it, but I think I'll be fine (had a nice long sleep last night).

Oh, and we scored the Wii, so more good news over the weekend.

Treatment 3 - Quarter of the Way Done!

2007-11-29T14:43:00.001-08:00

This week has been chock full of good news. On the medical front, my oncologist confirmed that she can no longer feel any nodes on my neck. At all. Nothing. Nada. That friggin rocks. She did feel a little something on my scar, but it seemed too surface to be a node (she believes) and thinks its definitely scar tissue from my incision.

There was no mention of the dreaded "dose reduction", and things went pretty routine. The only real new info was that I'm actually not getting re-scans done until Cycle 4 is done, not Treatment 4. That means rather than getting my PET scan before Christmas, we're not going to see how the chest is until early March. I'm cool with this, as the neck is pretty good proof SOMETHING good is happening, and my cough being gone definitely would correspond to good news on the chesty front.

I'm a little tired, felt some VERY minor nausea (for the first time), but other than that feeling pretty good. I also have some jaw pain, but I actually got that BEFORE treatment; I wonder if I'm clenching and grinding at night - That could be the culprit as much as the Vincristine. In any event, I got stuff for that, haha.

Looking forward to seeing everyone at Christmas. I'll get treatment the week before (so eating may not be as... Forceful... As Thanksgiving), but I'll be in good spirits.

What a Weekend

2007-11-25T13:16:00.000-08:00

Wow, this weekend sucked.

Thursday night, after getting home from Thanksgiving dinner, my son Steven started projectile vomiting. Huge mess, including our brand new sectional sofa. Wouldn't eat on Saturday, but then neither would I, as apparently I caught the same thing. My entire lower GI felt on fire. I got the other end of things as an issue, and couldnt (wouldn't) eat or drink anything.

The scary part was around 7PM, when we checked my temperature and I had a fever of 100.8 (over the "magic" number of 100.4). Called the on-call doc, and he said to take some Tylenol and call back if it goes over 101.5. Given what happened after treatment 1, we have no idea if I'm neutropenic or not so it was a bit nerve-wracking. Happily, following Tylenol and since the temp has gone down, and my gut problems have subsided (although I still have some residual pain).

Ugh, so much for a "good" week before Thursday's next treatment. We stop in tomorrow morning to make sure I'm not neutropenic (before I go to work), then hopefully get treatment 3 on Thursday.

On the bright side, my collarbones and neck (both sides) now appear "normal". Another good sign.

Someone Please Send Nintendo a Few MBAs...

2007-11-23T22:56:00.000-08:00

Seriously. How the hell could they have not been prepared for this holiday season? Once again, the Wii is damn near impossible to find. Now with my lovely cancer treatments, I can't hang around crowds at 4AM in freezing weather to try and get my hands on one.

Its actually good exercise. We want to get one for the kids. However, the only way to get one online is if you pay off unscrupulous vendors on Amazon (charging over $500 for a $280 retail product), or Ebay (again, same prices but by unscrupulous individuals this time). Walmart (the kingdom of cheap) had them, but only if you bought them in a $700 package: They sold out Thursday night too (not that I planned to spend anywhere near that).

I blame Nintendo - Wrote them a letter in fact on the subject. Anyway, if any family / family friends see this and stumble upon one (the console system, the sub-$300 one), feel free to grab it and give me a call.

On the health side, doing well with the GI, got a couple mouth sores (another typical symptom) that aren't too bad. Really just back to normal and waiting for tx 3.

Happy Thanksgiving All!!!

2007-11-22T06:44:00.000-08:00

Happy Thanksgiving! For immediate starters, I'm giving thanks that my gut issues appear to finally be resolved - I'll have a week or normalcy it seems. Other than that, we all feel good, got the lists for Santa together for the kids, and our hunt for the elusive Wii is on.

Really looking forward to our next treatment, mainly because I want to talk to my onc about a lot of things. In the meantime, going to enjoy turkey (but only so much - Suzanne won't have me getting sick again), bring home a ton of leftovers, and get some quality bread for sammiches over the weekend!!

As shitty as this stuff is, I have a lot to be thankful to God for. The rest of my family is well, I'm feeling better (and we see some more reduction in my neck), and we're happy. We caught this early, treatments appear to be working... What more could one ask other than a miraculous cure?

Have fun today, everyone!

Dose Reductions?!?

2007-11-21T08:07:00.000-08:00

Been an interesting 48 hours.

First off, my gut was killing me the last couple days. I've been trying everything to get it gone, but no joy. I called my oncologist's office yesterday and we went over some other over the counter stuff that should help get me "regular". I took Milk of Magnesia and SenoKot last night. The dam has burst, but still having abdominal pain (which could just be residual - it doesn't feel as bad).

My concern is my oncologist brought up possibly reducing my chemo dose again. I feel like crap, and I still have 5 cycles to go - I know this. But dammit I don't want to do anything that reduces my chances of getting rid of this thing. The fact that I'm only taking over the counter crap so far for the symptoms makes me wonder why we arent trying to be more agressive with the symptoms FIRST.

I love my oncologist, she's great. But she's going to need to do some serious convincing here. A lot of other Hodgkin's Survivors I spoke with are incredulous that a dose reduction would even be considered yet (and particularly for these kind of symptoms).

Day 7 from Treatment

2007-11-19T17:49:00.000-08:00

Well, we're a week out, and unfortunately I'm hurting something fierce. My gut is killing me - It hurt a little earlier, and Dumb Ass (that's me) decides that given I'm home late, a run to McDonalds should be fine... Yeahhhh, greasy food would go down nice on my chemo'ed gut.

Damn it hurts. Tack on some bone pain (from the Neulasta I think) and Day 7 has been a real blast. Time for bed and hoping tomorrow is better.

Almost Normal... But Not Yet!

2007-11-18T09:08:00.000-08:00

A little discouraging news today, loyal readers. Nothing bad with regards to treatment not working or anything like that, but the symptoms are definitely taking longer to get rid of. I haven't really compiled a list yet, but here they are (in descending order of "problem"):

Jaw / tooth / mouth / throat pain. This is easily the worst part of the chemo - Not as sharp as the Neupogen was, but it feels like how I felt following my wisdom teeth removal for five days every other week. This one starts about 48 hours after treatment, and goes for about five days. Right now, its almost gone (thank God). Percocet barely takes the edge off. This will be one I'll be talking to the doc about next week.
Constipation. Understand, I've never really had constipation. I can crap like Big Ben rings in the hours (sorry for that visual, but wanted to explain myself). I now essentially get a traffic jam in my gut for about a week, and it hurts. I've tried Colace, Metamucil, some nasty sodium drink the pharmacist recommended... Its hard to go. This will last for another few days, and then I'll be going regularly again for a week. Another one that will be getting a review by Dr. Szarka.
Weakness / dizziness. The day after treatment I was awake, but very, very weak. Today, I thought I was great but felt a little dizzy while out. May be from the lengthy hibernation time I've had the last few days, but we will see -- This is a new one to treatment 2.
Tiredness. This is the grand standard of chemo side effects. Its hard to describe, as there are different "tired" feelings. A few days after treatment, its hibernation tired - I just sleep and sleep. Other days, it just feels like I'm tired earlier than I normally would be at night.
Neuropathy. This is a neat one, ha ha. The meds I'm on can do some odd things to the nerve endings in your appendages, so I've had some numbness in a few of my fingertips. Relatively mild, and its not overly bothersome. Also, it went away before treatment 2, which is a good thing.
Doubt / Depression / Mental. Huh? What? Well, this one really only happens for two days -- Days 3 & 4 -- When my steroid from the treatment day wears off. I just get feelings like what if the treatment wont work, etc. etc. I will now refer to them as the Pity Party Days.
Pain in my port shoulder. I'm not sure this one is related to treatment or not. About a year ago, I got a shot of cortizone in my left shoulder due to some pain I was having. It started hurting again in the midst of treatment 1. The orthopedic guy said I might need another shot someday, so it may just be wonderful timing.
Hair loss. I'm shedding like a family pet. My darling wife Suzanne is at the point where she WANTS my head shaved, as she's the one getting to vacuum the couch.

Other than 1 and 2, overall I think I'm pretty lucky with symptoms (there's some really nasty ones that can occur). Still, it sucks knowing that most of the above will get worse before they get better. However, as long as its working and does its job, I'm good with it.

The other question I'm going to bring up to my oncologist is WHY its chemo then radiation. They give you a month off between chemo and rads; What's keeping a few of the Hodge cells from travelling outside the radiation field? Wouldn't it make better sense to have a few extra cycles of chemo AFTER radiation, just in case? While I'm not trying to add extra months to treatment, I also want every chance that this thing won't return.

OK, enough about treatment. For the first time in a few weeks, we got out to breakfast with my brother in law's family. Normally its breakfast before or after church, but church probably isn't the safest place for me presently (days 7-10 are supposed to be when your white counts are lowest). As for breakfast, if I can go to work tomorrow, I figure I can go to the restaurant.

Nudy's Restaurant is a small chain (3 restaurants) with probably the best breakfasts out by where we are. I downed a huge breakfast burrito (did I mention I'm not having nausea problems, ha ha). We give them problems as we have to seat 8, but they know we're regulars now.

My next treatment is still a week and a half away, so I'm hoping things will be great for Thanksgiving. Getting Hodgkin's or not, I have a lot to be thankful for. I'm getting treatment, the treatment appears to be working, and we caught this thing early. The rest of my family is healthy, my work is still going strong even through chemo, and what I have is something that is cured for the vast majority of people. This, in an odd way, might even be a blessing -- My priorities were screwed up, a wake up call that gives me a chance to change that around is a good thing. I just wish my counts would allow me to go to church without risk.

Back to Work, Slacker!

2007-11-16T15:47:00.000-08:00

Well, following hibernation yesterday, I was back to work today, quite happy and feeling pretty good. The jaw / mouth pain is about all I'm experiencing thus far - For some reason, Neulasta isn't giving me bone pain (yet). Perhaps my bones felt I suffered enough when I treated them to Neupogen. Remind me to send them a thank you note.

And also on the happy side of things, my "burn" is back in my chest in neck - The fun feeling caused by inflammation of millions upon millions of evil cancer cells dying. I LOVE that feeling.

Hibernation Over!

2007-11-15T19:39:00.001-08:00

Well, I crashed out last night, and woke up sometime into today. The good news is the post-treatment sleepies is apparently over. Treatment 2 isn't too bad thus far (just inconvenient about when in the week it happened). I'm getting the mouth pain and jaw pain still unfortunately, that's probably the worst part of treatments.

Still... Thanksgiving is now in an off-week, so guess who is chowing down on some turkey next week - Yeahhhhhh.

Ugh....

2007-11-14T18:21:00.000-08:00

I ended up having to work from home today. I wasn't happy with that. Even with all of this stuff going on, I still care about my job and I don't like not being in the office.

Worse yet, I really started to crash this afternoon, and if it continues I may just have to be out (never mind working) tomorrow. I so hope my numbers stay up so I can do treatments on Thursdays again, I don't like missing this much work.

Whinefest over.

Missing... One Pair of Functioning Legs

2007-11-13T18:03:00.000-08:00

Well, treatments appear to have their own set of odd things. The good news so far on this one is I'm not doing the hibernation thing, and mentally I'm feeling pretty good (although a little tired).

However, I'm weak. Weak as in climbing the stairs (which I usually take 2 at a pop) sucks at the moment. This MAY not be different than last time, as I was pretty much asleep so wouldnt really know.

No major complaints thus far, but my Neulasta fun should start tomorrow - Don't want to get my hopes up too high!

Treatment 2: That Was Easy

2007-11-12T16:15:00.000-08:00

So yeah... About that Neupogen pain. Seems like it was for a good cause. We went in today with high hopes, and we were rewarded.

Total White Blood Cell Counts: 2.1 Friday, 27 Today
Total Neutrophil Counts: 0.3 Friday (ugh), 22 Today

Them there bones did good, give em a night off. Well, one night -- Until the Neulasta kicks in so we can avoid boy-in-the-bubble-itis again. May not work, but at that points its definite that I'm getting too much chemo and they will reduce the dose a bit (no risk, as that would confirm I really am getting too much).

Treatment 2 went well physically, and I feel better than I did after 1. However, it went a few hours extra: Apparently a kink got into the tube from the Decarbazine bag, under the nice brown bag they put it under. So, the extra bag of saline kicked in on a slow drip. An hour later, they stopped by to check and noticed the bag was still full, and the kink. I picked on my nurse (in fun) about the extra saline, peeing like a racehorse, and how I'll hold it over her. She offered me a cupcake, needless to say I told her it will take much more than that (laughing of course, as she was). The nurses at the Cancer Center are friggin awesome.

So, just a matter of waiting to see what symptoms I get this round, but so far its better than 1. We can only hope!

Hair Today, Gone Tomorrow

2007-11-11T09:53:00.000-08:00

Hello faithful readers! Well, the fun has started -- My hair has started coming out. A couple days ago, my body hair started first. Annoying, but I could live with that. However, this weekend I started getting patches on my head where hair is definitely coming out FAR too easy. As an added bonus, my eyebrows are also having fall-out-itis, so more than likely I'll be going full-on hairless.

Wait, I mean aerodynamic. Hairless sounds odd, but aerodynamic... Yeah, I'm just evolved, that's it... *whistles innocently*

The neupogen bone pain has been manageable with Percocet, but I'm looking forward to getting off of it. I also picked up a stuffy nose over the weekend; Not unusual given I'm in a house full of sick people! Here's looking forward to treatment 2 being tomorrow!

OK, Now its Serious

2007-11-09T14:48:00.000-08:00

I am in friggin agony over the neupogen. My entire spinal column radiates pain in waves, up to my neck and shoulder blades. My oncologist gave me percocet, which I'll be taking very soon.

The plan was to take the neupogen over the weekend, with the darling wife getting the honor of stabbing me. However, my insurance company initially declined the order (saying this drug requires mail order). Given the shots are $1,000 a pop, I understand somewhat, but:
a) We're talking a weekend here -- We CANT go to the office
b) We need it THIS weekend so I'm not neutropenic through the weekend and next week!

Suzanne popped on the phone with them and explained the situation. To my insurance company's credit (and my sincere gratitude), they were quick to provide us an override once they understood the situation. We have our shots, our percocet, and I'm ready for a weekend of being an invalid.

UPDATE: Thank God for percocet. Pain has pretty much subsided, so I'm not in agony.

Umm... Ow?

2007-11-09T10:01:00.000-08:00

No joy on getting treatment today unfortunately. My neutrophils went from 0.1 to 0.3, a jump but not the 1.0 to 1.5 they want to continue. So, we got a new neupogen shot and will hope for Monday.

Speaking of neupogen, we are also waiting to see if my insurance company approves it. Not the shots in the office (which are fully approved), but the take home doses for the weekend. More doses = better odds we're getting tx 2 on Monday. At a grand a shot, I guess they need some time. On the bright side, once we get the next treatment we'll be on Neulasta, which is only a single shot.

In preparation, though, Suzanne got to give me the shot today. So my wife was legally permitted to stab me, how nice.

I want to get my next treatment as soon as possible, but a couple things are weighing on my mind. One, if I get treated next Monday, the work week will be in tatters. I need to work Tuesday for some fairly important meetings, and Wednesday will be... Well, it will be just ugly. Two, if I drop like this again, my oncologist will be forced to lower my chemo doses. Supposedly there's no risk (her point was she could treat me daily and practically guarantee killing the Hodge, but I might not care much as I'd be dead), and lots of people on the support forum have survived multi-week delays and crushed it, but I'm paranoid as usual.

Oh, and on neupogen -- It sucks. Every bone in my body aches, and I'm walking like I'm twice my age. My doc just gave me some Percocet for the weekend (wheeee!), but I'm dreading next week and the Neulasta now...

The Boy In the Bubble

2007-11-08T09:58:00.000-08:00

Today's episode is brought to you by the letters D, A, M, and N and the number 0.1.

So, we went in bright and cheerful for treatment 2. Cocky confidence was in full effect, and I wore a smile from ear to ear. Got plugged in (didn't even get upset when the nurse didn't use the numbing stuff), got my blood drawn, and saw my oncologist. She was amazed by the reduction in my neck area -- My left side has no feelable nodes left, and the right is smaller than when I saw her originally on October 2nd. Booya, baby!

Her next words were, "OK, now I'm going to have to make you a little sad." And sad she made me.

Apparently, while my white count was fine, my neutrophils were down to 0.1. This officially makes me NEUTROPENIC: Where I have no infection fighting ability. I'm in a lucky 1% of the ABVD taking population where I am EXTREMELY sensitive to the chemo. Good for killing Hodge, bad for making me wear what's on the left as a business suit if I want to go to the office. It also means I wouldn't get my treatment today.

Instead, I got a shot of neupogen, which makes your body's marrow go into overdrive and produce white blood cells. While we are going to try and have treatment tomorrow, the fact is its very unlikely they will come up in time. So, instead, I will get another shot of neupogen and get treatment Monday. No risk for delaying just a couple days, so c'est la vie.

In the meantime, public places crowds, public transportation, the office... All are out. So I'm working from home for a couple days.

The good news is that when I get treatment, they will start giving me Neulasta, which is like neupogen except you don't need to get it every day (just once per treatment). The bad news is its like a super neupogen, and your body's marrow lets you know how unhappy it is for working overtime by causing some lovely bone pain. Its just a few days and for a good cause, but still...

Other than that, everything is looking good. My kidneys took the barrage of dead cells they had to clear well, and are functioning great, as is the rest of my system. Now to just get an immune system back!

Anyway, I'll let you know how things make out tomorrow.

Twas the Night Before Chemo...

2007-11-07T16:03:00.000-08:00

Well, another day down, and tomorrow is treatment 2 - My first cycle of ABVD will be complete! I'm looking forward to killing Hodge (as I always am), but I know I'm due for some craptastic feeling for a few days.

I'm also getting nervous about my blood counts. Once my white blood cells get low enough (they are killed along with cancer), my oncologist will start hitting me with Neulasta. Neulasta is a drug that puts your bone marrow into overdrive, creating more white blood cells so a cold won't land me a trip to the hospital. Sounds like a winner, right? Well, the downside is that bone marrow likes to remind you how pissed it is when put into overdrive. It does so by causing your bones to ache - badly. My oncologist said to me day 1 "There are drugs for pretty much everything we need to work with, and every drug has side effects."

Speaking of my oncologist, she's in for a surprise tomorrow. She gets to go through my list of questions tomorrow. Hope she's light on the appointment calendar Thursday morning. However, we're bringing coffee and donuts for them all, so hopefully she won't mind so much.

Steven has been sick for the last two weeks, and still sounds like ass. I've been playing with him (not going to lock myself up), but I've been washing my hands raw at the same time. Suzanne took him to the pediatrician a while ago, but they said it was viral and they really couldn't do anything, it would clear on its own. Friggin lovely.

On the bright side, I got to hit DiBruno's for some quality italian bread today for the nice spaghetti and meatballs dinner tonight. I also helped myself to a nice chicken, mozzarella, roasted pepper and pesto sandwich for lunch (while the stomach is in good-week mode). The downside of my enjoyment of food is that I've gone up to about 248 lbs. Not losing weight (good), but getting the "I told you so" comments from Suzanne (bad).

So, tomorrow is tx 2. The Emend is in the medicine cabinet, the Colace is ready for the constipation, the ginger ale is in the fridge, and my saltines are standing by in the closet. Bring it on.

Is It Thursday Yet?

2007-11-06T15:52:00.000-08:00

I'm soooo ready to start Treatment 2. My left side of the neck is completely normal (looking), the right side is down, and I want it gone. Bring on my cocktail!!!

Well, Thursday will be here soon enough. Otherwise, same ol same ol. Work is going great, I feel good...

On a side note, keeping stress down is supposed to be important; On a whim, I decided to pick up one of those foo-foo, new age albums from Wyndham Hill. They had a compilation called "Relaxation" that I thought might be worth a try on train rides and such.

The first song was Yanni. I want my $9.99 back.

Since Suzanne and I are going to have lots of time to watch movies every other Thursday for a while, we grabbed a membership with Blockbuster Online. They have a nice deal where you pay $16 bucks and get two movies out at a time (shipping them to your mailbox). What's nice about them is you can return them at a Blockbuster store (rather than sending back) and even exchange movies at the store. So, we're watching The Illusionist and Casino Royale this week, should be fun (if the drugs don't knock me out again).

Weird Set of Emotions Today

2007-11-05T17:07:00.000-08:00

Been some ups and downs today.

On the plus side, I felt GOOD today. And for the first time since I found out about this, I had some serious confidence about beating it. Not just confidence - I know the statistics, comfortable with the treatments, etc. But I'm talking about COCKY confidence: The kind where I'm not even thinking about the Hodge, because its going to go away like a damn cold after I kick its ass. Got some great feedback with how I'm doing in my new role at work, and its just been a great day overall.

So why a downside? Someone from the support forum I frequent unfortunately lost her 6 year battle with Hodgkins today. She passed away peacefully at home with her family. Good cancer my ass, and just proof that while the vast majority do beat this thing, some good people are taken down as well. I'm still confident, but the news is keeping me sober.

Beyond the Hodge, my Eagles put up a rather pathetic display yesterday. Can anyone say LETS GO FLYERS?

Hooray for the Purple Pill!

2007-11-04T08:28:00.001-08:00

I caved yesterday and called my oncologist, letting her know about the stomach pain I was having. Based upon my symptoms and timing, she didn't think it was the chemo, but rather gastritis or a stomach ulcer (Why, how could that be? I haven't had any stress or anything lately...). I mentioned I was on Nexium back when I was heavy, and she suggested going right back on it and avoiding acidic foods. While it wouldn't fix me right away, she said, I should start to feel better by today.

Well today is here. And I'd say I'm back to 97%!!! I'm not having stomach pain anymore; Rather, I just FEEL that my stomach is there, do you know what I mean? In any event, between that and everything else, I feel great!!! I took Nexium for years, and it was never a problem for me (its actually a very safe drug).

On the bad side, the right side of my neck "felt" weird, like it was growing. The wife doesn't think it is, so I'm probably being crazy, but I am looking forward to my next treatment (did I actually say that???).

So, here we are T minus 4 days to treatment 2. I miss the burn, and want to make more Hodge cells writhe in pain.

Well, off to watch some serious football today. Pats - Colts should be awesome, and here's hoping the Iggles can pull off an upset of the hated Dallas Cowboys. This is another sign I'm sure the Hodge won't get me -- I refuse to go out in such a horrible Eagles season.

EDIT: While the purple pill fixed my stomach, my gut has still been out of whack (however, that is more in line with what the chemo does). Oh well.

Some Halloween Pictures

2007-11-03T06:19:00.000-07:00

The wife decided to finally copy a couple pictures off the camera from Halloween. Here's a few shots of the rugrats:

Here's me and Steven:
And here's a picture of Sara with some of her friends (she's the third from the left):

Bad Stomach, Bad

2007-11-03T01:58:00.001-07:00

Well, maybe I spoke too soon about the good week. Yesterday, I felt great, and came home to an awesome dinner (some sort of ham cheesy macaroni bake thing), so good that I decided to have a second helping.

Bad idea.

I was doubling over with stomach pains, so it was back to the Kytril (which didn't help all that much). If it wasn't for the fact that I'm not having diarrhea, I'd have thought food poisoning (although the family didn't have any problems either). My guess is something started working or wore off from my lovely ABVD cocktail.

It continued (to a lesser extent) into Friday, and here I am Saturday morning with no real pain, just a residual ache. Maybe I ate so much I stretched my stomach (I hadn't eaten like that in a long time)? Dunno, but it sucked in any event, particularly since Friday I REALLY felt 100% with my energy levels and such -- Just the damn stomach ache to keep me down.

On a separate note, I figured I'd give some more information on my oncologist / hero at present: Christine Szarka is one of the oncology docs at the Paoli Cancer Center, which is affiliated with the Fox Chase Cancer Center (a NCI location). She was a researcher there as well, and is certified with hematology as well as oncology (so blood cancers are her thing). Besides her knowledge on the subject, the fact that whenever I've called the cancer center I've had HER call me back within an hour every time has been nothing short of amazing, particularly with what's going on. I'm being good now and bringing questions with me to our appointments, but early on she was there to help answer things as they came up. That was so critically important.

My goal now is to give her another big W to put in the win column!

So It Will be Good Week, Bad Week, Eh?

2007-11-01T16:05:00.000-07:00

Well, today was a VERY good day. I feel practically normal, minus some aches and pains. I also continue to have a "burning" sensation in the areas where I have Hodge, and I will continue to think its the Hodge getting its butt kicked.

So, it looks like it will be a good week, followed by a bad week, for six months. I'll live with that (particularly if it kicks this thing so I can live!!)

Happy Halloween!

2007-10-31T16:06:00.001-07:00

Happy Halloween everyone!

Today's been pretty good. My mouth pain has subsided somewhat, and now I just feel achy like I have the flu. Minor stuff for now, and I'm in good spirits.

Even though I was tired, I managed to get up and go out trick-or-treating with my kids. That was fun, and glad I did.

Work is hellish for the next week, and I'm not pleased. I have three days scheduled with 4 hour meetings in the morning and afternoon - Meaning I'm working from 7AM until around 6PM this week. Not very good on the body. My work is pretty much office stuff, so it won't be too bad, but I wish it wasn't so concentrated.

How to describe chemotherapy so far? I'm tired. Not "I can't walk another step" tired (I do a 1/2 mile walk each way from my train station to the office in downtown Philly), but "Its 7PM but feels like midnight" tired. I'm ready to crash now (and with the early morning tomorrow, I just might).

The Beginning

2007-10-30T15:25:00.000-07:00

"I am waiting for you Vizzini! You told me to go back to the beginning, so I have."

-Inigo, "The Princess Bride"

Where to start? Well, let's start with hello. My name is Steve, and I'm a 34 year old typical guy with an office job, married, and two kids (12 and 3). What's NOT so typical is that I found out out on October 1st that I have lymphoma. Since I have a month of catching up to do, this will be a LONG post :-)

I should start by saying that in the spring, I hit 300 pounds. Office work plus food didn't really help my body much. However, hitting 300 pounds scared the crap out of me - So I started watching calories very closely, and started exercising. In a matter of 4 months, I lost about 50-60 pounds (before you start thinking it, it was NOT related to the cancer -- I put on 10 when I found out, and my wife lost 40 in the same timeframe, ha!).

In August, I noticed a bit of puffiness over my right collarbone. I figured it was a muscle pull from my workouts, and didn't think anything of it. A few weeks later, and it didn't go away, I figured it time to see the doctor.

My family doctor is awesome; We moved, and still travel 30 minutes to get to his office since we like him so much. I felt kinda whimpy for seeing him about a muscle pull, but I figured what the hell. He took a look and immediately said it was a fatty cyst, and no big deal. Then, he paused for a second, and asked me "Hey, if I sent you for a test, would you go? I don't think its anything, but I'd rather be safe." His precaution may have saved my life (to be determined yet, ha ha). So, I went for a CT scan on Monday, October 1st.

CT scan technicians are not poker players. This was obvious as I went in joking and laughing with the two technicians, but when they came to take me out of the machine it was like a graveyard. I knew something was up, to the point that I called my doc about it and asked him to give me a call back.

7:30PM that night, I got a call. Its never a good thing to get a call from a doctor at night. I'll always remember the words "Steve, its bad news, it looks like you have lymphoma. Its in your neck as well as your chest." My wife started crying, and I don't remember much beyond that. Luckily, my doc was on top of it and gave me a name and number, telling me to see this oncologist the next day, and that if I couldn't get an appointment to call him back immediately.

So, I did get an appointment with my oncologist (who we LOVE) at the Paoli Cancer Center. I won't go into the boring details, but in the last three weeks I've had multiple CTs, a PET scan, a biopsy, and a port-a-cath inserted for treatment. My hospital system has been nothing if not fast and on the ball.

So what's the bottom line?

I have Stage II ax Hodgkin's Lymphoma. As far as lymphomas (and most cancers) go, this is a "good" one to get. "Good" is relative, as I will state firsthand that cancer sucks, and even with this "good" one, too many people die. However, Stage II ax means that I'm considered early disease, with nodes only in my neck and chest (good thing), I'm "a" as I have no symptoms (good thing), but I have bulky disease in the chest, with the mass there being 10cm x 9cm (not so good thing). I'm right on the borderline for being considered bulky, but it is what it is. I had a second opinion at Fox Chase Cancer Center, and they don't even consider that a negative prognosticator -- Only that it means I will have radiation when done.

Last Friday, I started the first of 6 cycles (12 treatments) of ABVD chemotherapy, which will be followed by a course of radiation. This should give me about a 85 - 90+% chance of CURE. I like the sound of that. I'd prefer 100%, but I'll take what I can get.

I'll keep everyone in the loop on how I feel, and how things progress.