The Response

December 24, 2001|

The Response

It’s Christmas! What are you doing on my web site? 🙂 Shouldn’t you be doing last minute shopping? Or baking that last dozen cookies? Or getting the tree up? Or visiting family and friends? Surfing the web during a down time between it all? Me too. My little brother Billy just taught me about MP3s. Oh, that’s dangerous, especially being a music junkey. Like I tell everyone who encounters my towering collection- I don’t smoke, don’t drink, don’t play video games, don’t have a fancy car- but I buy music in the bucketful and record it (via my CD burners) like a fiend. I am allowed one vice, right?

The Deal

So here’s the new deal with my sabbatical in Manhattan at Hotel Hospital. December 30th I fly into LaGuardia- that afternoon is reserved for Steelers- Bungles game. Can you believe the Steelers? I gotta be out of the hospital by the Super Bowl! I can’t be in the hospital watching the Steelers in the Super Bowl on a lil’ 13 inch TV with no surround sound! We have a goal to meet, that’s for sure.

I digress. December 31st is CT Scan, PET Scan and Times Square Day. I don’t know how I am going to do it all, but I am going to be in Times Square on New Year’s. I can hear all of my second mothers in the reading audience protesting with rage over such an adventure that could endanger my weakened condition. “It’s cold.” “You are too out-of-shape.” “The bathroom situation is hideous.” Let me tell y’all. What is one of my major themes? Live life! Don’t be a spectator, be a player. Make a memory. I am there. The pictures will be online in a few weeks:)

Oh yeah. So I am admitted into Sloan Kettering on January 8th. Around the 16th I get Billy’s cells. We have been hounding him to eat. The kid weighs all of 70 lbs. sopping wet from a shower full of his pearberry and Bath and Body Works lotions. He drinks 15 cans of Pepsi a day and only eats mozzerella sticks. I have been beating him down all my life. Now it is his turn- via his cells- to get revenge. I have a bad feeling my cells are going to kick his cells’ butt, typical Artfashion. He better eat. Gotta save my life, know what I mean?

Serious Note

I have gotten such positive feedback on my last update. I have so much more information to pass on from experience and research on trials, tribulations and suffering, I don’t know what to do with it all. I am going to try to write a nice paper on it. Citations and all. That’s another goal when I am in the hospital. Thanks for all the wonderful e-mails.

You know what astounds me? It is hard to believe, as we are in Christmas time, that God, the maker of everything, came down to earth as a little baby. We all know babies. They are helpless, stinky, finicky…can you believe God came down in that form? Wouldn’t it have been cooler to float down in a super-herolike form? Big, tough, totally independent? The more I think of it though, it is amazing. Because He came down, was born a baby, was reared a child into a teenager into an adult, He can relate to anything we give Him. Hunger pains, bad haircuts, sore muscles, family death, tasty food, good times…He’s been there. That’s amazing. It’s more reassuring than anything. Whatever we throw at Him, no matter how difficult, He can say “Been there, done that, relax.” Just something to think about during this season.

Have a Merry Christmas and Happy New Year’s. And if you watch Dick Clark, look for the bald kid whooping it up…that’ll be me…ah, I mean..Yes ma’am…I’ll wear a stocking hat…I promise:)

There’s Something About NYC

December 15, 2001|

There’s Something About NYC

Maybe the doctor at the Cleveland Clinic was watching TV on Thursday night, saw the New York City Tourists commericals, and decided that I was what NYC needed- another body spending money there. Maybe. Or maybe he was making his opinion based on the medical data. Regardless, he (and I) recommended that I go back to Sloan Kettering to get my Bone Marrow Transplant. Why? First, he couldn’t get us into Cleveland Clinic fast enough. It would have taken a month to get all of the paperwork, tests, scans, everything before they would let me in. Second (this is my choice), he wanted to do a full transplant, while at MSKCC they wanted to do a mini-transplant.


The timing issue is important, as I need to do something- fast. Things are getting worse and worse everywhere. Leg, lungs, rib, neck, underarm, groin- the cancer is kicking art’s butt. This week I am going to do some Rituxin and Zivilin (brand new drug), which may put stuff at bay, but no gaurantees. The faster we can do this transplant, the better. Right now I may be in NYC for New Year’s. We gotta move.


The treatment issue is important too. Technically, I have already done a full BMT, only having given my own bone marrow, last year. To do it again would suck majorly (not pulling any punches here). But at Sloan (and around the country) there is a new belief that the donor’s cells will do the job of the chemotherapy, and therefore why not let them do it. So the mini isn’t as bad- I won’t be as sick. There still are many serious complications, but it won’t be as bad on Art. And, the mini is brand new. Like I will be in the top 25 of people doing this in NYC. Like I have said before, no one gets this far except Art. I may be the first mini Hodgkin’s patient. Ridiculous, right? Everyone gets cured at first crack, not me. Need to be different.

Depression and the Tootsie Pop

One thing that I never ever want to portray on this site is that I am the model and perfect example of suffering. Never ever. I sometimes get that from people, and I don’t ever want to confirm that. I am just like everyone else. I have good days. I have bad days. Many of them lately, which is what I want to talk about.

I don’t handle them well. I mope. I sleep a lot. I watch TV and read the newspaper. That’s it. Really. I don’t read my Bible, I don’t try to get myself up to do stuff or call people, I don’t particularly do anything. I just think of myself. My poor self. Shingles, darn shingles. Can’t go outside. Stupid leg. Can’t walk around. Groin. Ugh, definitely can’t walk around. And my dreams of going to grad school next fall- down the tubes. And helping with the foundation, can’t get out to help with that- ugh. Why me?

Today, though, after three weeks of such behavior I got sick of it and really pondered it. Thinking of depression and down times is like a Tootsie Pop. It is so hard on the outside, that you have to work it, taking many licks and many small bites before you get the good stuff inside. That’s what I have been doing most of today (and have done most of this year). I don’t think I have fully gotten to the middle, but I am getting there. Here are some thoughts, really brief thoughts. You can correct me as such.

Everyone gets depressed. Don’t let anyone fool you. I don’t care how good of a do-gooder they are, they get depressed. And it is OK to be depressed. It’s natural. What’s the killer is staying on it. It will literally kill you if give it any legs of its own in your life. It will corrupt your relationships, your work, your personality. It is a killer.

Really, what depression is to me is simply a time when you are stuck on yourself. What are the questions we ask ourselves when we are depressed? Why ME? It is isn’t fair? (To who?) To ME. Why did this have to happen? (To who?) To ME. The center of the universe is Art and everything that happens goes against him.

What gets us out of depression is recentering the universe. Moving it to God and others. Getting away from self. It’s easier said then done. But calling others, serving others, going out with others – getting in other peoples’ worlds. From there, remembering God, remembering who is in control. All can be turned to good, it’s our choice. But we have to move from the self-universe to the others-universe.

I know this is not quite the good explanation or understanding of this deep and difficult topic, but I felt it necessary to remind myself and others, during this Holiday season, that we can’t get self-centered. It’s not about us. It’s about others. It’s about Him. Especially this Holiday season.

So for you New Yorkers, we have three months to play. Let’s roll.

Sent Home Early

December 1, 2001|

Sent Home Early

The shingles were at it again this past week. In addition to be a general nuisance causing itching, soreness and pain, they also got my chemo cancelled. I am definitely anti-shingles.

On Monday we rolled into NYC with plenty of time to spare on my PET Scan. Unfortunately, I was sent right to isolation, as not to infect anyone else. The shingles are contagious only to those with low immune systems. Think ANYONE who is at a cancer hospital. My PET Scan got bumbed to the last slot of the day, where afterwards there were big “DISINFECT” signs posted on all the rooms I graced. It was like being a leper.

Just when I thought the shingles had caused all the problems they could, then Tuesday it got good. “No chemo for you!” shouted the chemo-Nazi! To have done chemo would have weakened my immune system greatly, and therefore I would have NEVER gotten better from the shingles. So my Wednesday and Friday all day chemos were cancelled and I was sent back home to Ohio.

We did meet the bone marrow transplant doctor on Tuesday at MSKCC. Nice guy, knew his stuff. We are exploring our options to as where to do the BMT. Slaon Kettering, Cleveland Clinic, who knows? All that we know is that we will do it within the next month. The PET Scan showed that the cancer is regressed as much as we can get it.

Billy, my brother the donor, also came, to understand what his part would be. He also had to give some blood to be tested against mine. Amazingly they were able to get a half pint of blood out of the kid. I mean he weighs like 30 lbs wearing wet pajamas. I thought for sure they would miss his vein and hit his bone. Oh, the skillful nurses. As for being the donor, his job is pretty easy. He sits in a chair, reads the Sports Section of the USA Today and allows a few million stem cells to be taken out of him.

The Reunion: Drugged up and Scratching like a Fiend

Last Friday was my 5th year Class Reunion. As Class President, I have the honor of planning the reunions from now to eternity (another reason why I can’t let this cancer win). It was a blast, we had around 75 out of 208, not a bad yield for being so last minute. I was majorly drugged up on oxycontin, benedryl and hydromorpohone. Thank God for drugs; prescription drugs you sickie 🙂 I made it through the night without incident, but I did sleep much of Saturday. Some new pictures are up from the event in the photos section. The glasses were the key my friend. If you have good accessories, you can pull anything off. I was unrecognizeable with glasses. Let me tell you. I was the mysterious guy, the guy no one recognized…until I went over and hounded my classmates to pay up for food:) “There’s Art again, making us pay money- shoot!”

Confirmation: I am not Superman

This whole shingles event once again has taught me a valuable lesson: I am not Superman, like I tend to believe. Many times I get on this kick, that I can do anything I want. I am young, I am strong, I think postive, nothing can stop me. Ha! A simple bout of graduated chicken pox put me on my butt for a week. I didn’t do a thing last week, a thing! Didn’t read a book, didn’t watch TV, didn’t do e-mail, didn’t go out of the house. Basically I was a big mound of covers who occasionally coughed up an empty can of ensure for a whole week. I was so itchy, so sore, so tired. I couldn’t go down the stairs without getting winded. Geesh!

It’s amazing, sometimes I feel like I can take on the world. I feel like I can do it. Pride wells up. Then it takes something simple from the Lord to humble me. Send me begging for a little relief, a little help for a brother. My thinking/mentality has changed significantly from this episode. Maybe I won’t be ready for grad school next fall? Maybe I should just get better and relax all of 2002 (if the BMT works, granted)? Why rush life? Get 100%. Be humble. I hate those hard lessons 🙁 Gotta learn them somehow.