Thursday, April 9, 2009

Here We Go Again

I returned to the City of Hope today for the results of my Tuesday tests, and, sure enough, the EOS count jumped another 10% in one week.

I won't lie to you; those little buggers scare me. I'll be relieved to start the attack with a daily dose of 60 mg of Prednisone, the drug I call my ironic little diet pills. I'm already losing a pound a week (five pounds total), thanks to the EOS. If I'm not a complete glutton, I will now lose weight at an even faster rate. Let the gorging begin!

My doctor is still reluctant to give me an official diagnosis of HES (hyper eosinophillic syndrome), primarily because it's such a rare blood disorder. We knocked one rare blood cancer into remission. What are the odds that I would immediately develop another, unrelated blood disease?

Our short-term strategy is to decimate the EOS with the Prednisone and eventually taper off. And then we'll play the watch and wait (i.e. monthly monitoring) game to see if they come back again. If they do, then we'll develop a different plan.

This afternoon, I used the City of Hope computers while I was between appointments. Both hands were on the keyboard, frantically trying to set up interviews for an article that's due tomorrow. I started coughing, and my busy hands didn't make it to my mouth in time. The "gentleman" (not a patient) sitting next to me used his nastiest tone to admonish me, "You need to cover your mouth." I used my surliest voice to respond in mock politeness: "I'm so sorry that I failed to do that. I will work hard to be better the next time, especially since you have taken the time to remind me of this in your nicest possible voice."

I actually did work hard to supress my cough and cover my mouth after that, especially when I was in the waiting room with masked patients. I was trying to make amends for my earlier bout of bitchiness.

Lord help us all if the Prednisone makes me more irritable.


Trish said...

oh gee whiz, didn't know you were THAT rare!

how ruuuude of that guy at CoH. Apparently he put on his cranky pants today. The even more obnoxious thing is, what you've got is not TB or other easily communicable disease---that he might be worrying about. Shoulda handed him a copy of the graph of your EOS levels and explained what that means to those of us who have watched their EOS counts go up and down. Moronic people do abound. Someone told me just last week to "get some more sun, you're pale!". Uhm, do the words melanoma ring a bell?

Have "fun" on your diet pills. Both of us are ROTFLMAO at the prednisone "possibly" making you our experience it is not an if, but when. Which explains why I'm not allowed to own a gun, ESPECIALLY when on prednisone.

Hang in there---luv & hugz from both of us.

Margaret said...

1: Damn those EOS.

2. The world would be a better place if we were all as bitchy as you.

3. That guy just had his own demons to face. Don't let him bug you.

4. Eat, eat, eat.

altadenahiker said...

You're the nicest bitch I've ever heard of (I'm going to have to give you lessons). Well shit, don't like that news -- I see lots of pommes frites in someone's future.

Trish said...

I have to third the comments made by M and AH---you are about the nicest bitch I know and even if the prednisone makes you a little edgy I think the general public will think you're still awfully nice.

Had a dream last night. Today I'm taking a friend for a procedure. I dreamed your asshat of a guy was at the hospital talking to the friend I'm taking today. *I* showed the asshat what a less than pleasant reply could be like and coughed on him the entire way through (thanks to my awful allergies, the coughing is no problem right now). It resolved *my* anger over all this and I woke up smiling! :-)

I think you're destined to eat lots of goooood things in the next bit of time...HAVE FUN! If Wolfburgers on Lake is still in biz and they still have the coquets---omg, that ought to help with about 3/4 of your calories for a day!

altadenahiker said...

Here's a link to the highest calorie prepared-sandwiches. and there's a Quiznos in Altadena.

Ronni Gordon said...

Bummer. Sometimes it seems like if it's not one thing, it's another. Hope you get those EOS under control. In the meantime, it's good that you like to cook and like to eat!

Susan C said...

Trish, You're a character, ya' know.
People (myself included) just don't think sometimes.

Margaret, great advice. I'm especially going for the "eat, eat, eat."

AH, A nice bitch, huh? I think I'm fading away down here. I will send up my special pomme frittes flare. I hope I don't have to resort to that monster meat sandwich from Quiznos.

Trish, your dream was hilarious. I'm glad your working out my issues in your sleep. I haven't been to Wolf Burger for years, but will have to try those croquettes (?).

Ronni, I'm confident we'll get those EOS under control, but the question remains, will they stay that way without Prednisone. Is your appetite starting to revive yet?

Susan C said...

Oh, I'm learning a lot from the link that AH left. Everyone else's what NOT to eat list is now my "what's for dinner" list. Did you know that "awesome blossom" (fried onion) from Chilis has more than 2,700 calories?

Paula L. Johnson said...

Smooky, you can rachet up the calories on the awesome blossom if you dip each bite in bleu cheese dressing!

Susan C said...

I'm gaining weight just at the thought of individually dipping each onion slice into blue cheese.

I tell ya' though - the effect of Prednisone on my body is amazing. I can easily lose two pounds a day if I don't eat like a pig.

Twig, pig . . . Can you throw in 15 more words and make a haiku out of that?

Liz said...

I'm collecting pictures of cancer survivors/fights for our Bras for a Cause performance (breast cancer specifically) Would you be ok if you used your picture in a slide show? I'm trying to help this presentaion come together and it would really help us complete this project. I just eed to make sure we have permission to use any media. It will be held at my school in Seattle, Art Institute of Seattle. Please let me know if you don't mind. It would be much appreciated. If you have any questions please email me! thank you