Down with da’ CMV

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.

– another web site for you:

– And while you are at it, give Webmaster Patrick a congratulations, he’s heading to Nashville on a promotion/transfer with WebMD!



June 12, 2002|


Let’s start from the beginning. A few weeks ago I celebrated my three-month transplant anniversary. According to protocol a few things were to happen. First, my diet restrictions were eased. No vendor hot dogs just yet, but I am allowed to eat just about anything else. Secondly my medications would taper down to just the bare essentials. Thirdly I would have to do a barrage of tests to see how the transplant was working. The first test was a CT Scan. It returned similar results from a month earlier. Nothing exciting. A few nodes here and there still showing up on the radar. The next test was the PET Scan. The PET Scan is the newest and most sensitive scan on the market. Basically it shows cellular activity. Cancer cells are identifiable by increased reproductive activity in an area of the body. Amazingly my PET Scan came out normal. My first reaction when Dr. Perales told me was ‘Define normal.’ ‘Normal,’ he said, ‘as in no cancerous activity.’ I was quite shocked. He didn’t know what to make of it either. My transplant is a relatively new procedure with few cases to compare against. He didn’t know if this was expected or not.

It is still great news. I never thought I would hear that news. ‘No cancerous activity.’ Golly. Anyway, in regards to the discrepancy between the CT Scan and PET Scan, from all of my medical learning, I deduced that those nodes are just scar tissue. I can’t really feel them like I used to. More importantly the pain is gone. It wasn’t till I started shooting hoops (of course I got reprimanded for it) that I realized I could run pain-free. No left leg pain. And the hips and groin area are pain-free also. Something’s working. Something’s working! Dang Billy may actually be doing some good beyond giving me hairy knees.

I still have some major issues to deal with. Don’t get too happy just yet there Sparky. Yesterday I had a colonoscopy. What a pain in the butt, literally. Haha! We are trying to see why I am having so much diarrhea. The prep work for the colonoscopy is just brutal. Clear liquid diet plus phospho-soda. The Nazis must have used such to make the Allies talk. Brutal.

I also have some major skin rash issues. My face looks like I am thirteen again. Acne galore. The rest of my bod is all dry and itchy. Tomorrow I see a dermatologist thankfully. Lastly I keep on losing poundage. I am below my junior high school weight now! Goodness!

“Oh, THAT Art!”

Saturday I went to see my friends Mike and Beth get married. Yep, it’s marriage season again. Interestingly, on three different occasions, three different members of Beth’s family met me and said the exact same thing, ‘Oh, THAT Art! You got a lot of people praying for you.’ The poor girls who I just met and was sitting with at our assigned table thought I was some celebrity. ‘Long story,’ I replied, ‘long story…’

It really hit home to me that night that there are so many people out there praying and thinking about me. They have no clue what I look like, what I act like, who I am. It’s mind-boggling to me. I think of the members of the Church of Rock in Youngstown. Since the church began two years ago, my name has been printed in their bulletin under the prayer requests column. I laugh thinking about the number of people who must wonder who I am and why I have been on that list for so long. But yet they pray.

Don’t take me off just yet. The PET Scan may have come back with amazing results, but there are still many prayers left to be said. I wince at the thought of how much rehabiliation I need to do this summer. I tried to jump and touch the backboard one day. It was fairly easy when I last tried three years ago. I must have jumped 5 inches off the ground. Arms flailing, not even coming close. It was so embarrassing. And it’s not only the physical, it’s also the mental and emotional work. My brain doesn’t work like it used to. My writing has slipped a bit, if you haven’t noticed. I can’t imagine going back to work. I doubt I would have the necessary mental stamina. Goodness. I still have far to go in the healing process. Very far to go.

So anyway, thank you for your many prayers and thoughts. You may know who I am. You may not. Thank you regardless. They are working. They are working.


June 7, 2002

June 7, 2002|

It has been two weeks since I last wrote. While I would like to fill you on all the various stories- eating Big Macs, locking myself in the Ronald McDonald House laundry room, pining over vendor hot dogs, relearning the intricacies of driving in Manhattan, assembling IKEA furniture, making snow cones, getting my first haircut at SuperCuts, etc.- I realize I would not be able to do justice to all of the various adventures. Therefore I will write a more substantial update later on this week.

I also will have more details on my latest PET and CT Scans. The PET Scan, I am happy to report came back normal…as in normal activity…as in no lymphatic activity…as in no cancerous activity. Quite a shock for me, I am still not sure what to make of it. The CT Scan came back the same from two months ago. The PET is the more senstive scan showing cellular activity while the CT just shows unusual masses. We’ll stick on that level of technical analysis for now.

More coming later this week…