June 27, 2002|
Down with da’ CMV
OK. So I am starting to really hate CMV. Friday afternoon I was napping away after a long week when I got the call. “Your CMV count is 13 cells. We need to admit you. Hope you don’t have too many plans this weekend.” Talk about a bummer.
I was pretty disgusted the whole weekend. How ridiculously unfair! I was put on the Neurology Floor. ‘We don’t have too many walkie talkies on this floor. They’re going to like you.’ Walkie talkies as in people who are conscious. Goodness. And then, even more unbelievable, I got put in isolation. Why? Para influenza (the flu) was still coming up on my blood tests. I have been testing postive for para flu for 7 months! I’ve had to have shaken it by now! So let’s review the situation again. I feel absolutely fine, I get an IV treatment twice a day for an hour, I am not allowed to leave my room, anyone who comes to visit has to wear a mask, gloves and gown, I have no computer and a TV the size of my pinky. Sounds like jail. Art was very unhappy.
Thankfully I was released on Wednesday afternoon. I still must continue the IV foscarnet for the next six weeks. At least I can do it from the comfort of my own home. Tuesday I officially cleared the flu. Seven months! I was given the OK to head to the patient lounge, which has an outdoor patio. It was hot and humid, but I would have stayed out there all night.
I am frustrated as well can be discerned. It’s hard not being able to plan more than three days in advance. It’s even harder for a Type A organizational wizard like myself. My Palm VIIx is screaming to me. It wants to be used more. Simply can’t.
This all boils down to my immune system or shall I say lack there of. It’s weak, very weak. Everyone carries CMV in their body. Your immune system keeps it in check though. Not mine. It may take another 3- 6 months till it does. This is going to be a longer recovery than I imagined.
Who Rocks the Body who Rocks the Party? Dr. Salib Rocks the Body who Rocks the Party!
At least my dry skin and acne is under control. Dermatologist Dr. Stacey Salib coming through in the clutch! Granted I have more tubes of lotion (5 to be exact) to put on, but if it works, it works. ‘Does your brother have dry skin? That would be fascinating!’ Uh, no. If I had Billy’s skin, it would be soft as a kitten with a pinkish hue. Him and his moisturizers. Pearberry! Woo hoo! Anyway, major props to Dr. Salib for cleaning up the skin problem.
I still have major diarrhea. Hopefully we’ll get this under control. I am down to my 7th grade weight- 135 lbs. I still am heavier than Billy, but not by much. I eat like a horse, but it doesn’t stick. I am definitely pro-colon but anti-diarrhea.
Random Notes:
– My tomato plants look like death. Does anyone have any helpful hints? The rest of my flowers are doing great. Miracle Gro is the stuff.
– I had my first ‘real’ steak two weeks ago at Smith and Wollensky in Chicago. It was excellent! The sides dishes were mediocre though. Ruth’s Chris is still my very favorite.
– My new apartment/house has an refrigerator (or icebox, for us Youngstowners) with a crushed ice machine. I have got myself sick making snow cones.
– In Chicago we played the coolest game. It’s called WhirlyBall. It’s like Quidditch (of Harry Potter fame) but only you are in a bumper car instead of a broom. Highly recommend it if you are ever in Chicago.
– This weekend I am traveling again to Special Love (a little cheesy, I know), a camp outside of DC for young adults 18-25 with cancer. I am eagerly looking forward to trading war stories. www.speciallove.org
– another web site for you: http://www.rmdh.org/index.htm
– And while you are at it, give Webmaster Patrick a congratulations, he’s heading to Nashville on a promotion/transfer with WebMD!