Sunday, June 8, 2008
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!
Friday, June 6, 2008
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Saturday, May 31, 2008
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.
Saturday, May 24, 2008
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!
Wednesday, May 14, 2008
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?).
Sunday, May 11, 2008
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 ;-)
Sunday, May 4, 2008
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.
Wednesday, April 30, 2008
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.
Friday, April 25, 2008
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!
Tuesday, April 22, 2008
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).
Sunday, April 20, 2008
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!
Thursday, April 17, 2008
My only worry is how badly rads will impact me, as I really don't want to take more time off. We will see!
Well, it sure as hell beats the alternative. In any event, off to our testing next Monday!
Tuesday, April 15, 2008
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.
Thursday, April 10, 2008
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...
Monday, April 7, 2008
- 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).
Thursday, April 3, 2008
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!
Sunday, March 30, 2008
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.
Tuesday, March 25, 2008
Friday, March 21, 2008
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.
Tuesday, March 18, 2008
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.
Tuesday, March 11, 2008
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).
Thursday, March 6, 2008
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.
Wednesday, March 5, 2008
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.
Monday, March 3, 2008
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).
Saturday, March 1, 2008
- Dr. Peter Venkman, "Ghostbusters"
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.
Monday, February 25, 2008
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.
Sunday, February 24, 2008
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.
Thursday, February 21, 2008
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
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.
Tuesday, February 19, 2008
- 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.
Wednesday, February 13, 2008
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?
Thursday, February 7, 2008
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!
Tuesday, February 5, 2008
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.
Wednesday, January 30, 2008
Once those tests are in, we figure out if we're done treatments April 9th, or if it goes out another two months. Also, these scans are used to start putting together the game plan for phase 2 of this fun, radiation treatment. That's the good news for today.
My fellow Hodgie, Bekah, is currently kicking ass and taking names at the Hospital of the University of Pennsylvania (HUP for short) following a relapse -- It does happen unfortunately. However, she was wonderful enough to pass on the radiation oncologist recommended by her doctors: Dr. Eli Glatstein. Apparently he's among the "best of the best", and I've been lucky enough (with Bekah's help) to land an appointment with him in March. Radiation is no joke, and I'm not taking chances with it -- If I can have the best working on me, then damn skippy.
Bekah, can't thank you enough for helping me get an appointment with him.
On a separate topic, I find myself in the horrific predicament of once again having to root for the New York Giants. I hate cheaters, and while it was a small event I find the Patriots to not be a team I can root for. That leaves me rooting for the Giants, my brother's favorite team. I wish I liked pro basketball, sigh...
He's throwing a party on Sunday for the game, so it should be a fun time. I'll be damned if I'm showing up in a Giant's jersey though. Hell no.
Monday, January 28, 2008
I sent an email out last week to one of my brothers, letting him know if I didn't make it, here's the reason why (i.e. Hodge). Well, Jackass (namely me) does a reply all on the email, so rather than low-key, it goes out to everyone. Yeah chemo brain!
Wow, the reactions though. I have guys who I haven't seen in forever offering their help if I need it, giving me contact details. I love Theta Chi -- Its a brotherhood forever. I was touched, big time.
We had a BLAST! We didn't stay for the whole event (I started "crashing" around 9PM), but we talked with friends, and I met a brother from the 80's who just beat cancer - twice. He lives in the area, and he left a standing offer to take me out to lunch and talk if I need it.
I'm so glad I went. I got a night of normal, and it felt good. I plan on many more once this thing is beat in 3 months.
On a side note, please say a prayer for a woman named Sarah and her partner. She's a person I called my "Hodge Hero" on the Hogkin's Support forums, and she's in a bad way right now. She was like the Den Mother for the forum, having battled this for years and no treatments providing her the cure she deserves. I'm hoping for a miracle.
Thursday, January 24, 2008
We went in for our 7th treatment, knowing that the dose reduction did a number on my symptoms (they're mostly gone). I have some interesting "cysts" on my thumbs which are probably viral and will go away on their own, but we're supposed to watch them. Other than that, the eyebrows continue to slowly work their way off my head. We will soon be making the transition to bald in-style guy to Moon Boy. Oh well.
The real annoying thing is I put on 9 more pounds in the last two weeks. 9 pounds!!! Damn playoff football and the awesome foodstuffs one has then! We're going back on the diet. Dr. Szarka said if I don't at least maintain weight next time, she's going to dose reduce me. (She said that in joking, it was pretty funny).
The week before treatment 9 (in about 3 weeks), we will be re-staged: They will run a CT scan, PET scan, chest xray, pulmonary (breathing) function test, and heart echo. The first three are to see how treatment has worked thus far. We're all convinced it will be a Complete Response - Everything is dead. The last two are to check the functions of my lungs and heart following the treatments, as they can cause toxicity. My lungs sound great though per my onc.
So, we're back to dieting, and getting anxious to get the story on where we're at. A Complete Response gives us the best chance that this is not refractory disease (recurring).
Saturday is my fraternity chapter's reunion party (Theta Chi). I'm going to be exhausted, but dammit I'm going to make this thing. I even got clearance to nurse a couple beers while I'm there!! I just want to make sure I don't turn it into a somber event -- I doubt it, but I hope not, no matter how much I want to see them.
I'm tired, I'm weak... But I see a light at the end of the tunnel now.
Wednesday, January 23, 2008
Wednesday, January 16, 2008
Sorry to (once again) be remiss in my ramblings, but the 10% dose reduction has made chemo - dare I say it - almost easy. I have one shot weekend a month, but I'm relatively back to normal by Monday after treatment.
Except for my Neulasta bone pain. Its only a day or so, but its always fun.
I got a very nice case of that today, so I'm missing my last day of Analysis Services training. Ah well, I have the book and know the product pretty well already - Should be good to go. Its nothing a few Percocet can't handle, but I'm not one to go to work (never mind drive) on that type of stuff.
Other than the training, nothing really new to report. I'm just spending the evenings watching my daughter's favorite show, American Idol (hey, the first few weeks are FUNNY), and pigging out unfortunately. One thing I'm NOT doing with cancer and chemo is dropping weight.
I've been in great spirits this week, but my onc has me a little on edge - When I mentioned last week that I was "halfway done", she hedged. Of course, its her JOB to, as they could always extend me to the max 8 cycles (16 treatments) if needed. She doesn't think that will be necessary though, but she's not going to out-and-out say I won't need it until we get our halfway scans.
Speaking of, I wouldn't mind getting those sooner than later. I want to know how this chest mass is doing (hopefully very dead), and I want those so I can start interviewing radiation oncologists about my treatment plan post-chemo.
Oh, and I forgot to mention -- Dr. Szarka did some research on that vaccine trial thingy in Baltimore. Its not a Hodgkin's specific trial, they want to see if this non-targeted vaccine creates any sort of Hodge response. So, in essence, there's really no benefit to me. That sucks, but I'm glad I know about it NOW before I let someone stick crap into me that really isn't going to help!
Thursday, January 10, 2008
If you know the enemy and know yourself, your victory will not stand in doubt; if you know Heaven and know Earth, you may make your victory complete.
- Sun Tzu
Well, we're halfway through the hardest crap I've dealt with in my life thus far. The good news is that other than the sinus infection, this was the easiest treatment yet. None of the major symptoms, my bloodwork looks good, and all seems well.
We had another delay at treatment today - Once again, the brown bag over the dacarbazine hid a kink in the iv line, so I lost an hour while my saline flowed before it turned on an alarm. No biggie, we were out by 2PM.
As for the sinus infection, it seems the infection is now gone but the "virus" part remains (a bit of a sniffle). We have to keep an eye on things, but pretty good.
I'm friggin exhausted though, and really, really weak. Just getting up off the couch requires some effort, and that sucks. Its temporary, but this is the symptom that will get worse as we go.
We also will be looking to line up our "retests" in another month, so I'm definitely looking forward to that. Keep praying, and thanks again all of you for reading my regular rants!
Sunday, January 6, 2008
OK, now that's its over (or still ongoing), I'm pissed because I missed my brother's 30th birthday party today. A couple weeks ago I picked up a small cold, which managed to make itself into a full-blown sinus infection. I'm on antibiotics, but its not doing anything to help it so far - And I'm running an occasional low-grade fever. Being in a smoky bar with loads of people (who I love, but still) wasn't going to be the best idea ever.
I'm really, really upset at the moment. Brian, happy birthday bro if you read this (which is why I didn't post earlier). Love ya man, even if you like the Giants.
Wednesday, January 2, 2008
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.