Treatment 3 - Quarter of the Way Done!

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

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...

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!!!

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?!?

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

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!

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"):

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
   
8. 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!

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!

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....

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

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

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

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

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?

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

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...

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?

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

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!

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

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

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?

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!!)