Wednesday, November 5, 2008

Halfway back from the dead

Thanks to Cindy and Brian and the family for posting away in my absense. Let's just saw I was out of sorts and in no mood to even look at a computer monitor.

But I want to tell you about mucositis. You do not want this. If someone even mentions the word or tries to include it as a party gift, you run the hell away from the person in the opposite direction as fast as you can and report them to social services.

See, I was in the hospital for 5 full days as my family so caringly blogged about since I was a useless blob during this time. The hospital stay wasn't too bad, but the side effects were pretty tough and included severe nausea, headaches, fatigue, and a general lack of motivation to do anything. Other annoyances were vital sign checks every 4 hours and blood draws every morning at 4:30am. This was especially annoying since my IV pole was continuously dripping the nasty chemo fluids into my body for 4 days straight, 24 hours a day, including going to the bathroom, eating, etc. One particular morning around 3am this was made even more incredibly annoying while they had stuck me with a 2nd IV to get a whole blood and also had a blood pressure monitor wrapped around my around going off every 10 minutes since I had a fever. Trying to navigate to the bathroom with all that crap and not set of all the crazy alarms was quite an accomplishment.

But back to mucositis. The nurses and everyone warned me about this. So I tried to be the perfect patient and did everything I could. But then it started off in the corner of my mouth, like a pizza-burn-on-the-top-of-your-mouth sensation. Ow. And I had a been a diligent mouth cleanser, using the prescribed mouthwash not 4 but 8 times a day. Neverthess, it was during a plate of linguine with red sauce that I noticed a funny texture in my linquine and realized the entire inner surface of my mouth was schloufffing off. It didn't stop there and about I knew it the entire inside of my mouth was sitting in my plate. My mouth now looks like a ghoulish halloween picture where you can see all the red blood cells and all the ligaments in there. So you can imagine the pain of trying to eat anything at all at this point. To make matters worse, I'm stuffering from nausea so I have to get past the nausea part first will pills, then get to the eating part, and on top of all that, most food tastes like shit anyway when you're undergoing chemo. So far the Carnation instant breakfasts work well, and there is even some gel I can swish around after eating to alleviate some of the pain. The other gross part if you're not grossed out already is that the the chemotherapy affects the lining all the way into the stomach, so any liquid that goes in essentially goes out both holes down there, if you know what i mean. So yes, I've been sleeping a lot mainly to just get through all the side effects, but I am feeling a little more alert each day. Each 3 meals a day is a healthy struggle but it's worth it.

So now my goal is to survive the next several weeks with a white blood count of 0 (we check for fevers 4 times a day) and to get some nourishment in me, no small task with all the obstacles thrown in our way. I do feel a little more alert every day (I even watched the electoral fun on Nov 4) but I am still sleeping most of the day, mainly just go get through this hell and let me body heal as fast as it can.

ciao for now


Anonymous said...

Maybe the chunk of mouth you left in your plate could do all your talking for you? Send it to all your meetings! Think of the time you'll save. :-)

Glad to see you back on the blog, and hope you feel better soon.

- S

Nic said...

This post of yours makes it official - you're 'hardcore'! I don't like typing that much regardless of the situation, yet there you are updating like a mad man... nice job!

Keep pushing forward. Hope to see you soon!

buckmonster said...

yes the mouth parts left on the dinner plate made doing the dishes especially gross that night. And you forgot to mention the total body rash you have that just looks scary but doesn't itch. All of these things make you question the word treatment, but these awful weeks in recovery are an investment in our future sweet baby!

Sanaz said...

happy you're blogging again :) mucositis sounds absolutely horrible! hope you'll feel better soon and enjoy that linguine at La Bella e Vita :)

hope the next few weeks will be much better than the last few days! see you soon!!

Trevor said...

Steve - You know, there's an old Yiddish saying that goes, "You never really appreciate the roof of your mouth until it falls off." (They also have another similar saying: "Better to have problems with the roof of your GI tract than the basement." But I wasn't sure if it would be appropriate to share that in this family-friendly environment ...)
It's just a shame you were too neutropenic to enjoy Halloween; I'm sure you would've scared the crap out of some trick-or-treaters. But in the long run, all the chemo and other nastiness is going to be worth it. I've seen it firsthand, and it'll be great to see it happen for you.