Round 2: Day 4

I'm halfway through day 4 of 5 of the "heavy" part of round 2. These 5 days look like this:

Wake up at 5 to be on the road at 6

Get to the hospital to check in at 7:15

Get assigned to my mini-room and get the IV and pre-meds started

Start 4 hours of chemo

Sleep during chemo

Start fluids

Escape room and lame room service for hospital cafeteria

Maybe sleep more

Leave just in time to hit horrible rush-hour traffic

Repetitive. But it could be much more worse.

The fatigue has really started to set in. Yesterday I think I slept something like 16 hours. Today I've got a little more energy, but not a lot.

I'm starting to think this is what chemo will be for me: just lots of IV's and fatigue. (and fighting off other side effects--mostly with success)

I don't know what else to say. I'm still around. I'm still kicking. I will not be broken. I'll just endure and walk out of this on the other side.

Out.

Round 2: Day 2

Sorry I haven't been blogging much. But this has turned into a bit of a routine, and *has* to be boring from an outside perspective. Good days, bad days and visits to the hospital. That's pretty much my life.

Right now, I'm sitting in the hospital. I've been plugged into an IV since about 8 AM and will be getting out around 5:30. I did that yesterday. And I'll do it tomorrow. And the day after, the day after that and the day after that. 5 days of this in total.

Honestly, I'm a little bored. Cory and Steph sent me an awesome stack of books. (thanks you two) But this part of chemo gives me the brain fog, so it's hard to concentrate on reading. (especially really good stuff like they sent me, so I don't want to "zombie" my way through them--they will be much more useful soon)

Mostly, I'm just a bit restless. Nothing bad--just not sure what to do. 90% of my life and activities revolve around my brain in some fashion. So when that's temporarily taken away, it confuses me as to what I should be doing. Yes Mark, I know what you'd probably suggest. And if I've got 3 more days of this, I might just have to... But only temporarily.

But I'm doing fine so far. The meds they are giving me seem to do a really good job of holding back the more unpleasant side effects. So, I've really go no room to bitch. I mean, I've got f'in *cancer* and I'm bitching about being bored. Boo hoo. Poor me. :)

Ready for some good news?

The primary way they are tracking the progress and success of my chemo treatments is via the Alpha-Feto Protein (AFP) markers in my blood.

In adults, the normal AFP levels are between 0 and 5. When I checked into the hospital on 4-Apr, mine was 923.

As of yesterday, it's down to 108!

Honestly, I'm not sure if that's a normal drop or not, but I can't see it being anything other than good.

Round 1: Done!

Yesterday I got my last infusion of chemo for this first round. The next round starts in a week. Looks like that will be 12-14 hours sitting in the hospital with a giant IV. But at least this time I'll get to head home and sleep there.

The last couple of days have been pure misery punctuated by a few hours of feeling decent. I've been up since 3 AM feeling like someone punched me in the stomach. About half an hour ago it finally started to pass. With any luck, I'll be up off the couch in a while. Until then, I've been making my way through season 5 of the X-Files.

At least the hour or two I felt well, I got to go to dinner with some of the guys here in town. It was nice to get out a bit and sit in a friendly social situation. I'm pretty sure that will happen less and less for a while.

...and Round 1 goes to me

This morning I get the last infusion for this round of chemo. Then I get about another week to recover before starting round 2.

They're going to take blood again and I get to meet with the PA for the doc overseeing my treatment. With any luck, they will test for my cancer markers and I'll get to see what, if any, movement there has been. Although I can't imagine that it would change in any way that would alter my treatment plan, it would be nice to see *some* kind of positive direction.

And tonight, if I feel up to it, some of the guys are taking me out to dinner to celebrate the fact that I'm still up and kicking. Life just ain't too bad.

What Now?

It's a quiet house again. For the past week or so, my parents as well as my brother and his wife have been staying here. It's been incredibly nice to have them here to help me out.

Against everyone's expectations, I tolerated the first round of chemo well. Everyone (including myself) assumed that I'd be more or less bed-ridden well before now. But so far, I'm still on my feet. Any kind of activity takes the breath from me and I still feel really stupid, but I'm self-sufficient for right now.

So everyone headed home for a while. It's time to get a little rest in anticipation of the next round. (that starts in a little under 2 weeks) I think that's when it will start getting a little rough. (but, obviously, I'm no good at prediciting such)

So, the question is: what now? I've got the better portion of 2 weeks before they hit me hard again. I'm on short-term disability from work, and I don't think I'd be any use if I tried to go back. (just paying bills this morning wore me down a bit--not to mention that my head is still foggy)

Don't worry--this isn't a plea for help or anything of the sort. It's just a very, very, very strange feeling to be at home this much. Not going to work after 11 years is taking some real adjustment. I'm sure I'll manage.

But I do realize that I haven't been doing my job of educating everyone on what's happening... (you know I get a kick out of that) So, here's some quick info:

Not all chemo is the same. Chemotherapy is the term for a type of drug that kills particular cells. Technically, the drugs they give me for treatment of Crohn's is chemo.

The treatment they've found that works best for testicular cancer is what they call "BEP". That's a combo of 3 drugs: Bleomycin, Etoposide and Cisplatin (platinum). Each does their own little thing.

The schedule they are administering it to me is as follows:

Day 1-5: All 3 drugs

Day 8: Bleomycin

Day 15: Bleomycin

On day 22, it starts over. (3 weeks per "round") This Friday is day 15, so I'm heading back to the hospital for the morning. I'm doing a total of 3 of these "rounds" for a total of 9 weeks of treatment.

Almost 2 weeks

Sorry I've been a bit out of touch, folks. My parents are here and my brother and his wife came into town to help take care of me. It's been quite the circus around here.

So far, chemo hasn't been what any of us expected to. Other than feeling very weak and moderately sick to my stomach most of the time, I feel really good. Nobody (including me) knew what to expect, but so far it's been much easier on me than anyone imagined.

Now, I've got no illusions that this is just temporary and that it's going to get really hard. But, at least for the moment, I'm able to relax a little and enjoy not feeling too bad.

Home

Finally got out. Don't get me wrong--MD Anderson is a great place to be. But I was definately ready to get home.

I'm exhaused like I haven't been in years. I'm really looking forward to some relaxation--laying on the couch and such.

Jerm & Andia: Thanks for the goodies! It will absolutely come in handy starting right about now. But now I've got to get tested for Avian Flu... ;)

Day 4: Almost ready to get out

Yesterday was a pretty good day. I still felt fine, so I grabbed my IV pole and headed over to the pediatrics wing for the afternoon. I got to spend a few hours playing with some of the kids and their parents. It was very cool.

Last night wasn't so fun. Chemo started at 11 PM as usual, but the IV in my arm stopped giving a good blood return at about 2 AM, so they had to come up and put in a new one. That meant not much sleep last night. And as nice as the people are here, there is no such thing as more than 1 hour or uninterrupted sleep. There's always someone coming in to check on me or give me more information.

Anyway, I'm still up and kicking. At this point, I'm really looking forward to going home tomorrow morning. T-21 hours...

Day 2 (or 3) Update

I'm not sure if this is considered by second or third day here since my infusions start at 11 PM... Anyway, I've had my second infusion of chemo. The only side-effect I seem to have noticed is what I think is "chemo-brain".

Even more than the fatigue and nausea, this is the side effect I've feared the most. I acutally considered not doing chemo because of this side-effect. (that was until I heard how much my blood markers had increased)

But, no worries, I'll find a way around this one. It isn't bad yet, but my brain definately seems a bit "foggy". Maybe it's something else, but I don't think so.

In any case, my day has been good. I spent the last couple of hours sitting outside--enjoying the perfect Houston weather and returning phone calls. (the only reason I'm inside is because the IV battery only lasts a few hours)

My view while sitting outside

Day 1 : Overview

The view from my window

Well, I'm thought my first chemo treatment. Luckily, it turned-out to be a non-event from the standpoint of side-effects. I'm not sure how they managed that. Maybe it's because chemo has a cumulative effect, so there's not enough in my system to tell yet. Or maybe they are just that good at managing symptoms.

My IV pump at the beginning of the night

But I know this, I've never had this many drugs pumped into me at one time. Since we started at 11 PM last night, they've added at least 9 bags of meds into my IV. (they even had to add a third IV pump) So, I'm attached to a *huge* tangle of wires.

So, I think it's time for breakfast. I just ordered a banana, some yogurt, scrambled eggs, canadian bacon (low-fat alternative to bacon) and some apple juice. (but if I wanted, I could just as easily have ordered strawberries with Fruit Loops, a Belgian waffle with whipped cream and a made-to-order omelet--this place is awesome)

Maybe?

Ok, I'm going to give this a bit of a try... Over at the right, you'll see a new part called "Chemo Twitter". I'm not sure if this is anything I'll keep up with or anything you're interested in, but I thought it would be something to try. (if you don't know Twitter--just think of it as posted text messages. Not big blog posts, but quick thoughts of what's happening right then)

Starting a new phase of my life

Starting today, my life is going to change for a while. I saw the doctor yesterday and the cancer is being agressive. But I'm still considered a low-risk patient and they have given me excellent odds for beating this thing.

But, to beat it, I need to start chemotherapy immediately. So I'm currently waiting for my room in the Admissions office of MD Anderson. I'll be here for the next 5 days so they can monitor me closely and make sure I don't have any adverse reactions.

After that, I will continue my 9-week chemo treatment from home. Fortunately, my parents are coming down and are able to move in with me for a while.

I'm still not really sure what to expect. I've done some reading and talked to several people. However, I still don't really have a good idea of how I'm going to be feeling during all of this.

So, basically I'm saying that if you don't hear much for a while, don't assume anything bad--I'm probably just feeling sick and don't have the energy to blog.

I'm sure I'll be perfectly fine after this. Chemo is just the price I have to pay for that health.

I'd like to say yet another huge thanks to everyone for their support. Everyone I've talked to have been extremely supporting. That's made this process easier to handle.

Talk to you soon.