August 14, 2002|

Farewell to My Tube

Today was a glorious day. After 186 days of bondage I was let free. Rather it was let free. Yank, yank, yank…pull! All it took was forty minutes, two pairs of scissors, three vials of Novocain and strong-armed Nurse Practioner named Joon.

You see for 186 days I have had a triple lumen Broviac catheter lodged in my chest. The white tubing extended internally from the largest vein in my neck to six inches above my nipple. From there it dangled externally to my waist. It was a completely necessary device, especially given the amount of medication and fluids I have received in the past few months. It was a bother, though. You ever tried sleeping with a tube in your chest? Twice, in the middle of the night no less, I tossed and turned, consequently twisting the tube underneath me, tearing the stitches attaching the tube to my skin. Twice. Then there was the one time when I played basketball and bruised it. And I couldn’t even count the number of times I stepped on it accidentally. Through all of those misfortunes, I never felt any pain. It had literally become a part of me. Will I miss it? Sure, but not for very long. Now I can return to playing contact sports. And now I can take off my shirt off without scaring little kids…uh…maybe not. Dang I need to gain weight!

Solitary Drinking

Since June 14, 2001, I have not partaken in the consumption of alcohol. On that fateful night, I had a glass of champagne to celebrate a friend’s birthday. Twenty minutes later my lymph nodes were causing me so much pain that I had to leave. I hopped on a subway, grimacing and wincing in agony the entire ride home. Thankfully I had an emergency stash of pain pills which subsided the discomfort. From thenceforth I vowed not to drink alcohol and have steadily consumed cranberry juice on the rocks in its place. (NOTE: I never was and never will be a “big drinker.” One glass of Merlot is my limit. I nurse that baby all night long.)

So Monday afternoon I did an experiment. I took a drive down to the local liquor store, purchasing a bottle of mid-level quality Merlot which the salesperson recommended. Why go cheap? Celebrate! But why go expensive? If there’s pain you certainly don’t want to drink the rest of the bottle.

I arrived home and busted out the corkscrew. I tried my darndest to open the bottle without breaking the cork. Being out of practice, I split the sucker in half. Could this be an ominous sign?

I sat down at my computer, half glass of wine in hand, preparing to do my e-mails for the day. For three hours I sipped, waited and typed. Nothing. Not even a twinge of pain. Other than the slurred speech and lack of dexterity, my experiment was a success. Seriously though, could this be a foreshadowing of good news from my PET and CT Scans next week? Stayed tuned to find out!

The Birth of Q-Tip Canning

Y’all can just call me Q. As in Q-tip. As in I look like a Q-tip. That’s what I have been hearing lately. Monday I received a lesson on living with curly hair from a local curly hair expert. Her introductory advice- “Embrace the curls.” We then moved on to a half-hour long discussion of product, style and history. “You missed out on the awkward curly hair phase. Junior high school was especially rough. Bad hair cut, curls everywhere, kids being cruel, you missed out. Q-Tip, embrace the curls. You were given a gift. Embrace the curls.”

There is a rumor to dispel in all of this. I did not get a perm. OK, so it looks like a perm. On bad hair days I feel like an aged 80’s rocker minus the Van Halen shirt. It’s out of control afro-ness, but it’s all-natural. No perms for this boy.

D-Day is Everyday

I also learned this week that the creator of www.curehodgkins.com, Matt Terry, passed away on May 26, 2002. Truthfully, I didn’t really know Matt. We had exchanged e-mails a few years ago, linking our web sites. That was the extent of our relationship.

When I read the e-mail from his mother detailing what happened, my heart sunk. It’s hard to verbalize my thoughts and feelings on this subject. I can only picture it and even then it is metaphoric form.

In my mind, I visualize all of the people I know battling cancer. Vividly I see a scene reminiscent of the beaches of Normandy. We are out at war. I look around and see fellow patients. They are not friends, though. They are more. They are fellow soldiers and comrades. There is an unexplainable bond that unites us.

I glance to my side and see those who entered the war the same time I did. Some are still alive and fighting while others are down and injured. A few have fallen, never to arise again. A few have successfully navigated the beach, therefore ending their tour of duty. They are no longer in battle and you rejoice for them. Some later though, unfortunately, are called back into action. Regardless, we band of cancer patients are all fighting and when one goes down for good, you feel like a part of you went down with them. For all those out their fighting, keep on. Someday we shall win. And if you do fall, never to return, know that your life was not lived in vain. We have a special bond that shall not be broken.

August 1, 2002|

Undercover Brother

Eager anticipation has marked my summer. You think it would occur because of the various milestones I traversed through, eating normal foods again, regaining weight and strength, and the reduction of medication, just to name a few. Fact is, those all don’t compare to the joy of looking in the mirror and seeing a new creation. Yes, I have hair. But it’s…dark…and curly? BWOING!

I have heard many reports from cancer patients about the changes in the color and texture of their hair. My first two chemotherapy treatments did little to confirm those occurrences. I still was a dead straight brown-haired boy. But as the month of June staggered into July I noticed a stark difference in my appearance. My straight locks twisted and turned. This morning, in an attempt to see the extent of the transformation, I combed my hair, gelling it with the finest Aveda products, only to BWOING! five minutes later. Now I know how the other half lives.

So now the ongoing internal debate rages on in my mind. What do I do with my do? Do I let it grow to Afroic proportions? Do I resort back to the tried-and-true Carson Daly forward and up? Do I grow a curly mullet? Do chics dig curls?

Hanging with the Peeps

Next to the tried and true “How are you feeling,” the second most asked question I hear is “How do you spend your days now that you don’t work?” In response, I frequently mumble something unintelligible and sneak away. I feel I should have a good answer, like writing a book, sewing a sweater, or solving world hunger. What do I do? I water my dead garden. That takes a couple minutes a day. I spend all day Tuesday at Memorial Sloan Kettering (AKA Memorial Slow Kettering) reading Teen People and Vogue as I wait to receive my IV immune booster and see Dr. Perales (“Your hair looks funny. Ha, ha! See you next week.” in his stately British Portuguese accent). I roller blade in Prospect Park, hence my recent rash of black and blue marks. I drive to Starbucks daily and read various non-fiction works and periodicals. (Is there anything more addicting than using your Starbucks card?) Where does the rest of my time go?

As I drove the 14 hours back to New York from Chicago last week I reviewed my past two months. It’s been a whirlwind of activity, but doing what? Don’t know. I pulled out my trusty Palm VIIx and glanced at my calendar. Hmm…weekends spent at weddings, bachelor parties, summer camp, and entertaining out-of-town guests, countless days of lunches and dinners in Manhattan. Call it what I want, but it’s been the summer of “hanging out.”

Being a former (and current) workaholic, it has taken a major life-threatening illness to teach, and reteach me a valuable lesson. People are important. Many times previously I have written on this subject, but it never seems to get old, and I constantly need internal and external reminders. Did a book visit me in the hospital? Did a garden send me a reassuring and optimistic e-mail when I needed it? Were any of my accomplishments, awards or stuff there to hear me complain when I needed to vent?

I have found this to be more and more true. One of the more interesting confirmations has been what I discovered the Bible says about relationships. Christianity is based on relationship. God is made of a relationship between three parts. Adam wasn’t happy in the Garden of Eden, the most desirable place ever created, until he had someone to share it with. And heaven, it’s not about receiving material goods that we didn’t get here on earth. It’s a giant reunion and feast, shared with others we bring along with us!

This is not to diminish the importance of production and work. Where would the earth be without us lovely type A’s? If type B’s ran the world, nothing would EVER get done. But in the end, what matters? People. Family. Friends. Relationships.

The Merry Month of August

August could turn out to be an exciting month. If I am rid of the CMV virus in two weeks, my Hickman Catheter is removed. I can once again show my bare chest without scaring all the ladies. Ummm, well, maybe not. On August 21, I have both a PET Scan and CT Scan. Those are the big ones, so get your prayers ready. If those look good, well, watch out. And, if I forgo my haircut for the month, I could probably add another half inch to my ëfro. JJ Walker, here I come.

July 18, 2002|

As I now write I am home in Ohio. Quick trip to Youngstown, see the folks, the homies, the kids, then drive to Chicago for my second (of four) weddings this summer. Yep, it’s the season again, wedding season. Exciting to see friends from all walks of life come together for a weekend to celebrate and catch up.

Shock the Dawg

I arrived home to find a new collar on our dog, Cosmo. She (it’s a she, go figure. My dad asked for a male dog at the pound. For two weeks we thought it was. Then we realized the dog was missing an organ crucial to it’s being a male, if you know what I mean. How we were duped for two weeks is beyond my understanding…) is the most wild dog I have ever met. She used to jump and nuzzle next to me at night in bed. I put an end to that. She knows not to mess with me. It’s not that I don’t like animals. It’s that I don’t like OUR animals. Three dogs and four cats. They rule the house…except for when I am home.

I digress. Cosmo had this new collar. It wasn’t just any collar, but a shock collar. If at anytime she runs out of the house and we can’t catch her, we push the red button on the remote control and give her a shock. She no longer runs away, that’s for sure. Whenever I see the dog now, I just mouth a little “zap!” and she goes running. Aw, technology at it’s finest. It’s great to return home to obedient animals.

Up Close and Personal with Matt Lauer’s New Do

Last Friday, Amy Grant and Vince Gill performed live on the Today Show. Having been a huge Amy Grant fan since conception, I felt obligated to join the horde of camera-frenzied tourists and watch them perform the requisite three songs. I remember attending my first Amy Grant concert 14 years ago at the Richfield Coliseum. I even went to school the next day. Eleven years ago the whole family treked to Blossom Amphitheater in Cleveland to see the “Heart in Motion” tour. Frank and Billy sat with their fingers plastered in their ears the entire concert. “It’s so loud!” Kids these days, never appreciating finely crafted pop music.

So, my friend Anne and I must have been the only native New Yorkers in the crowd. First off, no sane New Yorker would get up that early. Secondly, no New Yorker would go see Amy Grant and Vince Gill. New York City didn’t even have a country radio station till last year! Despite the early time, we had a great time and even got on TV for two seconds. And yep, Matt Lauer’s new hairstyle is awfully short.

The Redemption of Artichoke Canning

As of Tuesday afternoon, I can actually brag that I am not a complete gardening failure. For as of Tuesday, I had a tomato plant that was growing. Sure my purple-wave petunias are out of control wild, but everything else is brown and shriveled. My first foray into the world of horticulture had been unkind, until this tomato plant sprouted in the past week.

I thought it (and all my plants) would morph overnight from this tiny stem to this gargantun monster. Boy, was I wrong. It was a really slow process that occurred over a month of heavy watering, weed-picking and pruning. And it was completely unperceptible to the naked eye.

I find it’s growth fascinating, maybe more on a personal level than anything. It’s not just the accomplishment of being able to grow something, it’s the analogy that comes with it.

The person, leader, man I wanted to be two years ago, I know I am becoming. Recently I looked in the mirror and concluded I look a lot different. It’s not external- the new long, dark, curly hair or Calvin Klein-anorexic model build- but the internal.I wanted the growth, the maturity, the wisdom, like the tomato plant, to happen over night. Instead it took small incremental growth of meditation, prayer, and self-analysis watered by pain, hardships and trials. Now is the time for the next step, to produce a hardy crop. I look forward to doing such. And I anticipate eating a big beefy tomato come August.

July 7, 2002|

Artichoke Canning?

Recently looking at my garden, I concluded that I am not my mother’s son. Well, most likely, I am. I just didn’t inherit her talent for gardening. I think she bleeds MiracleGro. In utter contrast, when my plants see me coming, they hide underneath the mulch.

So it comes as no surprise that I have had few success stories in my first batch as Artichoke Canning- Gardner Extraordinaire. My petunias are looking spectacular, I must admit. But you really can’t screw up petunias. Everything else, though, is looking like death. My tomato plants are one step from shrinking into oblivion. My hiccus curly is shriveled like it was in the bathtub too long. And these little red flowers, I don’t remember their name, hang low like they are in mourning. I once read that singing to plants help them grow. Hmmm…I think that may quicken their demise given my voice. Hmmm…Maybe I’ll have to have Mom come out for a garden resuscitation trip. Ah, the joys of being a home renter.

King of My Colon? Not Yet…

It’s been almost three months since I have had a normal colon. Since then, I have dropped close to twenty-five pounds. In the words of one of my friends who recently saw me for the first time in months ‘You look like Billy! You’re so skinny!’ (Me: ‘NoooooOOOOOO!!’) After much procrastination and silliness (in my estimation) by Dr. Perales, I am finally taking medication to clear up the irritations in my intestines. I won’t delve any further into details. You know what they say about dinner conversations- to be polite don’t talk about religion, politics or colon activity.

Driving Miss Crazy

My Jesus Fish fell off my bumper just the other day. It was quite appropriate timing. Driving in New York City brings out the ‘best’ in people, including myself. I think God had been observing my driving and deemed me unworthy of such an article on my car. ‘You frickin BLEEP BLEEP! Get out of my lane!!’ ‘What are you doing?!? You just BLEPITY BLEEP BLEEP cut me off! BLEEP!’ ‘PEDESTRIANS right of way!! I’ll never be able to turn! BLEEEEEEPP!!’

Getting Special Love at Special Love

Last weekend, after eight long hours of stop and go traffic on I-95, I made it to Special Love YAC Weekend, a camp for young adults age 18-35 recovering or battling cancer. (www.speciallove.org). My friend Jen had been emphatic about my attending as a counselor for the little kids camp. I didn’t think I was just yet ready to be a counselor in such an environment. I still have way too many issues to work out. But I was game for going as a participant.

There was almost a cult-like feel to the weekend. Most campers had been attending Special Love for years, first as campers then as counselors. They all had very intense and fiercely loyal feelings for each other and for the camp itself. I must admit that I felt more intrigued watching the group interact (the trained social scientist I am) than I did participating. I recalled my studies of group dynamics, noting how powerfully one single commonality can incredibly unite a group, despite regional, racial, religious and gender backgrounds. Some had cancer when they were babies. Others were still in treatment. It didn’t matter and it wasn’t really discussed. There was no ice-breaking introduction of medical history or diagnosis (that was what late night one-on-one discussions were for). The underlying premise of the camp was known and understood. A given in the whole equation, if I must continue in scientist mode.

I had a few striking conversations and observations that I am still processing.

– In this cancer business there is always a factor of uncertainty discreetly hanging over one’s head. I had a great discussion with a guy in his thirties who had a very rare case of testicular cancer ten years ago. Recently he had an occurrence of pain, which he naturally concluded was a return of the cancer. Thankfully it was just a kidney stone. (Nothing much we said, just a kidney stone. Ha!) Probably the most difficult thing to deal with cancer is not the actual disease, but the uncertainty of it. If you know what and when you are fighting, you know what weapons are required, emotionally and physically. If those two variables are unknown, what can you do? It is truly a plaguing of the mind.

– One of the most troubling sights of the weekend was seeing a few of the campers smoking, especially a camper who had a sun tattoo on his back with the names of recently deceased campers circumscribed in the middle. I wasn’t personally offended by the smoking. Everyone has a coping mechanism for dealing with such stress, which is totally understandable. Rather I felt such sadness and heartbreak for them. Why put yourself through the rigors of treatment again? Why risk your spared life? Why increase the odds of adding your name in that sun?

– Perhaps most agonizing was my learning one of the volunteers of the camp is battling stomach cancer. I didn’t find out till the drive home. I thought she was a normal healthy Gen Xer. How much different my interactions would have been had I known! Ugh! I wasn’t mean or anything, but I would have been more upfront with my hope and my driving force. I would have asked her more questions on a deeper level. I would have… You never know! You never know.

I learned many a lesson that weekend. I also had some fun to boot. I hope to someday be a counselor at the children’s camp when my colon is functioning and I am catheter-free (no swimming or soccer with a catheter! D’oh!). I have a feeling I will one day be a part of that Special Love cult, if given the opportunity. You never know. You never know.

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!

June 12, 2002|

Normal

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|

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…

May 23, 2002|

Living with Billy

Today Billy left for Ohio. After 92 days of supervision, Dr. Perales granted me my freedom to live by myself. I am healthy and competent enough to care for myself. Not that I haven’t been saying this for 91 days. But that’s OK that they are clued in now.

Living with Billy has been quite the adventure and learning experience. I really haven’t lived with the little guy for five years, so to see him in his current adult state was quite peculiar. For example, he is the master of the 30-minute shower. He has special shampoo and conditioner (no sharing, only his). He needs to let the conditioner stay in for at least 10 minutes in order for his hair to reach its peak of softness. He uses two loofas (aka poofs) in the shower. One is for his back, the other for the rest of his body. Special Herbal Essence body wash can only be used.

Now see here. I may wear pink shirts. I may wear baby blue shirts. I may even wear a pink and baby blue shirt, but I will never reach Billy’s standards of (in the words of middle brother Frank) prissiness. Living with him has taught me so. Why do I endure the taunts of being the high maintenance, ‘prissy’ one in the family? There is a much better candidate I discovered.

Light Sabers and Web Slingers

Episode II came out this past week. There was no way in heck I wasn’t going to go see it opening day. The combination of seeing the second prequel plus being in Manhattan plus seeing it with all of the other Star War geeks plus a sold out show was just too much. I brought a mask just in case- no worries moms.

Beforehand, though, I had to get in the mood. This wasn’t just any old movie, this was Star Wars: Episode II. We had grown up on Star Wars. We had all of the toys. We watched all of the movies. I had the Yoda Underroos. I remember having debates with playmates Chris and Preston Wells about the viability of Star Wars actually existing (my argument was that it happened a long, long time ago). I can even recall, at the tender age of five, waiting in line to see ‘The Return of the Jedi’ at the movie theaters. It was more than just a movie series- it was a part of ArtCanning-lore.

So last Thursday Billy and I packed our lunch and set forth to FAO Scwhartz. I needed to buy a light saber. Billy thought I was insane. Considering what I paid for it, I must have been insane. Sure it is just a toy, but I rationed a.) it is a reminder of my childhood, b.) it is symbolic of my current fight and c.) it is a REALLY cool toy. The light blade shoots out. It makes cracking noises when you hit something, like Billy. ‘Whap! Whap!’ And when it is just still it goes ‘wwwwooosh, wwwoosshh’ like a real light saber. Man it rocks.

But I didn’t just stop there. For the past three weeks I have had this (bad) habit of pushing in my two middle fingers and saying ‘Fwwwing! Fwwing!’ in replication of Spider-man’s web-slinging. ‘Man,’ I thought, ‘I would love to be able to shoot out webs like Spider-man!’ Well, dream it and it shall come. Or rather be made, into a toy. Yep, I couldn’t believe my eyes. A Spider-man wrist webslinger. You too could pretend to be Spider-man! You too could fight the evil Green Goblin and win Mary Jane’s heart! Oh man!

It truly is so cool too. You press in your two middle fingers on the plastic trigger and zoom! Silly string (or water, depending the cartridge you insert) flies out. Does life get any better than this -fighting evil with a Jedi light saber in one hand and a Spider-man web-slinger in another? Would anyone dare make fun of me now for wearing a pink shirt? A baby blue shirt? Even a pink and baby blue shirt? Ha!

Oh, Yeah, that Silly Health Thing

While not fighting crime and pastel-hating, non-fashion-knowing individuals, I have been a mild-mannered patient at Sloan Kettering. Rapidly Day 100 approaches. Next week at this time, I will finally be able to get off most of my medications, many of which hinder me on a day-to-day basis (a little nausea, sore throat, headaches, terrible acne). Yesterday, I had the first of many tests and scans to determine the benchmark of how much healing needs to be done. Billy’s cells actually don’t start working until after Day 100. That’s when the cancer cells start getting zapped, IF Billy’s cells aren’t too busy in the shower. (Hehe!) My appetite will also start to increase. I am down 27 pounds from my normal weight. Ugh! That’s a lot to gain back. Thankfully I do have all summer to work out, eat like a horse and get myself prepared to reenter the working world (doing what, when and where- I don’t know just yet- I’ll keep you posted). I will be staying in New York City, though. I am in the process of signing a lease with two other fellas for a house in Brooklyn. Yeah, a real house with garage, driveway, yard and all, can you believe it? That story is for another time though. Regretfully I need to get back to work. The streets of New York are pounding with activity and someone’s got to be there to keep the peace. ‘Wooosh! Whap!’ ‘Fwwing! Fwwing!’

May 14, 2002|

Keep Your Shirt On! Wham!

OK, I was being a little secretive. I wasn’t sure if I would be able to swing it. I mean Dr. Perales is one heck of a negotiator. My usual strategies didn’t work with him. I had to dig deep into my can of bull-crap. It was a WIN-win in the end. By the conclusion of our negotiation I had weaseled my way to going home to Ohio for the weekend.

The provision was that I had to drive home with youngest brother Billy. And I would have to have Billy live with me for the next few weeks at the Ronald McDonald House. I could live with that. He’s a twig and I could bully him around. Alright.

Wednesday afternoon we packed up and hopped in the car. The trip started with the usual shenanigans from Billy. ìAaaaahhhhh! Aaaaahhhhh! I’m eathing a salth packet! Aaaaahhhh!” See what happens when you drive and munch on fries out of the bag? Then hearing Billy sing along with Diana Krall and Elvis Costello, torturous, my friend, torturous. Then I bought a really watery slurpie. I didn’t want it, so I was hoping Billy would hold on to it until we made it to a rest stop. What did he do? He chucked it out the door! Litterbug! I have the immune system of a litterbug!

Our time in Youngstown was short. I had a lot of shopping and organizing to do. It’s getting hot in the City so I needed to bring back my summer gear. I apologize if I didn’t see you. It was a short trip. July, I’ll be back in July.

Anyway, the trip back was relatively calm. Thankfully my Spidey-sense kicked in and averted certain disaster. You see three years ago Billy and medium brother Frank were on a road trip to a Transformers (toy) Convention. Billy accidentally spilled his beverage all over his shirt while driving. Decisively he took the shirt off and continued to drive. Happening upon something refreshing, he drove the rest of the way to Fort Wayne with his shirt off. It was summertime, maybe it was acceptable. But now it has gotten absurd. Whenever he drives for long distances he takes his shirt off. The weather outside has no bearing. Have you seen Billy? With his shirt off? He is Axl Rose anorexic skinny. It is a sight to see Billy, shirtless, wearing his seatbelt driving. What kind of sight? I do not know. But it is a sight.

He knows I will punch him into oblivion if he takes his shirt off while driving. I don’t want to see no naked boy wearing a seat belt next to me. Gross. What would a state trooper say? What would we say to a state trooper? Sunday it was freezing and pouring rain.

So I started to fall asleep when my Spidey-sense alerted me to a disturbance in the car environment. I glanced over to see Billy trying to stealthily wean his way out of his shirt. I punched him to oblivion. He kept his shirt on.

The lesson in all of this? This is the guy I am getting my immune system from. This is the guy whose cells are going to save my life. Scary. The results are starting to show. I have hair on my knees now. I never had hair on my knees! Billy is already starting to take over starting with his overabundance of leg hair. Eeeeekk! If I start eating salt packets, littering along the highway and taking my shirt off while driving, it actually maybe a good thing though. Scary. I give thanks to Billy, heck I may live because of him…but I’ll still punch him into oblivion. Keep that shirt on. Road trips.

May 6, 2002|

Isolation Part II

Somewhere God is laughing. Hard. Mysteriously last week the Ronald McDonald House of New York City fell silent. The hallways usually filled with screaming and giggling kids were now silent. The playroom was locked. The dining room was empty. What was going on? The sign on the elevator said it all. Quarantine.

Some little rugrat came down with chicken pox last week. That is not a good thing. That actually could be a devastating thing to a hotel full of children (and one adult-me) with compromised immune systems. Children merely playing with each other could easily pass the virus along wrecking havoc on all in its way.

So the house management put us all under quarantine. All of the common areas are off limits. The dining room is virtually closed. No visitors allowed. Stay in your room.

If you think the little kids are having troubles obeying, you should see me. I can’t play my arcade games anymore. And where am I supposed to read, in my room? God has to have a sense of humor. I’ve moved from one bubble to another.

God always provides an out though. I have actually been given two outs- the weather and Starbucks. The weather has been beautiful so I have stayed outside as long as possible each day enjoying Central Park and getting my exercise (walking 2-4 miles a day!). And Starbucks. Their coffee stinks and is too strong but one lies on every corner on the upper East Side. Saved. Ahhh…the sweet smell of coffee beans signaling one’s freedom. Now if those little grimy kids would stay away from me…

Rules and Regulations

It seems lately the more time passes the more rules and regulations I have to abide by. The latest? Looking for an apartment. I briefly mentioned to my doctor that I needed to start looking for a place to live in the City. He goes on with a 5 minute long list of where I can and cannot live. ‘No basement apartments, nothing near construction, no mold nearby, preferably a 10-20 year old building, westward facing windows, doorman named Jose, adequate closet space…’ OK, The last three I made up. It only felt like I needed those though, as the list went on. Golly, where the heck am I going to find something like that in my price range? Florida?

This whole food restriction thing is taking its toll on me. Saturday I went to the Cloisters up in extreme northern Manhattan. I had just walked close to three miles to get there. I was hungry. There, like an oasis, stood the vendor. The intoxicating aroma of sauerkraut filled my nostrils. Like Pepe le Pew’s scent, I could visibly see the smell. Oh. Just one hot dog. It wouldn’t hurt. Oooohhh! Thankfully my companions pulled me away. 25 more days, 25 more days, 25 more days…

This is not to say that I haven’t broken a few rules here or there. I have I admit. I just won’t post them to the world. The scary thing about a web site is that everyone in the world can read it, including certain doctors, or rather a certain doctor…named Dr. Perales…who would be none so happy as read of my various bad behavior…

But all of this has got me thinking on a macro level. Psychologically, what we can’t have we typically want. What we aren’t allowed to do, we want to do. There is something inherent in our souls that values individual freedom of choice. Take that away and revolution occurs on an individual and later on a societal level. There are too many examples to count, ranging from the American Revolution to the Cabbage Patch craze of the 1980s.

Moreso lately I think of the Taliban regime. They had bazillions of rules, restrictions and regulations. One of the most intriguing things about the terrorists attacks occurred the night before, when these ‘devout’ Muslims spent the night at a strip joint. Correct me if I am mistaken, but isn’t that what they were fighting against? Were they not against American society and our freedom to go to such places? The Taliban surely would never allow such a joint to be opened in its territory and none of its leaders and ardent followers would ever frequent such a place, right? Wrong. The night before the attacks, the religious pinnacle of these guys’ lives, they are doing exactly what they shouldn’t be doing. The irony is incredible. I daresay on the whole, those who push their rules and regulations are usually the worst at following them!

I by no means am trying to link the Taliban to Dr. Perales, even though I would like to sometimes. Rather I am thinking more of the implications of how in our own lives it is easy to get caught up in the legalism of religion and culture. We think if we follow all the rules we will be happy, healthy and all will work out. But the flaws are obvious. None of us can, have or will follow all the rules of life. Our naturally psychology tells us to do otherwise, constantly. What we cant’ have we typically want. What we aren’t allowed to do, we want to do. Secondly, the only person to ever perfectly abide by those rules was executed 2,000 years ago by the very same people who were making up those rules. Thirdly, there are many who break all the rules and end up happy, healthy with everything working out for them.

So what’s the answer? Ultimately freedom to do as we please is the most satisfying alternative. Yet is not always the wisest. So maybe there is something more. Maybe it comes more from understanding the spirit of the law and its creation. My regulations are in place in order to decrease the chances of my catching an infection and ending up back in the hospital. They are for my good ultimately. An occasional break from the rules in order to fuel my emotional and mental state, under the right conditions (key!), will ultimately benefit me. The rules of life, that God has truly ordained, are here to decrease the chances of us being hurt in this life. An occasional break, in order to help fellow man (not ourselves), will ultimately benefit me, and humanity. There is a certain power in all of that. Having the freedom to exercise what you want, but yet restraining because it is not in the best interest of yourself and others. That is power. That is freedom. Isn’t that true love?

So I avoid eating hot dogs for another 25 days. I did go see a certain movie this past weekend featuring a certain guy wearing red and blue tights. Hearing the six year old in front of me yell “Gross! They’re kissing!” during that incredibly passionate rainy moment was priceless. The smile and internal chuckle still lingers to this moment, reminding me that it was ordained by a God who laughs with us and sometimes at us, all in the name of freedom and love.