All Clear

August 27, 2002|

All Clear

It was a tense week. I used the extra nervous energy to my advantage. In an absolutely incredible breakthrough I conquered the formerly unconquerable hill in Prospect Park on roller blades, without stopping. It was like climbing Mt. Everest. The air was thin and my mind was clouded. Billy goats and sherpas climbed around me. I almost blacked out. I almost stopped. I didn’t. I conquered the hill.

But things were still tense.

I was so anxious on Monday night at Starbucks that I couldn’t do my normal reading or writing. My mind was racing around an endless track at unbearable speeds. I needed to find a worthy distraction.

I shoved my shoulderbag in the car and sped to Coney Island. After a few rounds in the batting cages and in the video arcade I was able to breathe easier. And the cheese fries from Nathan’s, those helped too. Tuesday was the big day.

I was expecting the worse. Like a post-it note slapped on my forehead, a nagging pain in my lungs and along my spine had become a constant reminder of my current situation. I thought, without hesitation, the note read “The cancer has returned.”

I snatched the papers off the desk in the examining room. I couldn’t believe what I was hearing from Dr. Perales. I read the reports myself. “There is a normal physiologic pattern of radiotracer uptake and distribution seen throughout the remainder of various body tissues and organs with no evidence of FDG avid viable malignant tumor.” “No pelvic lymphadenopathy or ascites is seen.” “No enlarged mediastinal, hilar or axillary lymph nodes are seen…” Six months post-transplant and the scans are clear.

I am not out of the woods just yet. Yes, it is great news. I couldn’t be more pleased. But remission isn’t declared for another 6 months. That means two more rounds of PET and CT scans in November and February. I’ll breathe much easier then.

Thank you for your prayers, encouragement and support. I still have a few more hills to conquer. Only with the above will I be able to do so.

 

 

Happy Birthday Art!

August 22, 2002|

Happy Birthday Art!

‘Happy six months old Art!’ That’s what you all should be saying to me. Technically, I’m 24 years old and my birthday is February 28. Truthfully though I was reborn six months ago when I was injected with my brother Billy’s stem cells.

To celebrate the occasion I didn’t receive a cake, a card, or even a present. Instead, I had an all day affair at Memorial Sloan Kettering Cancer Center. At 8:35am, I was injected with radioactive insulin for my PET Scan. So much for staying radioactive-free on my birthday. At 3:45pm, I polished off the last drips of my Crystal Lite & Contrast mixture for my CT Scan. At 3:55pm, I was injected with the IV Contrast. So much for staying Contrast-free on my birthday.

Truthfully I was scared and am scared. The scans, ah, they’re cake. It’s waiting for the results that make the heart pound, the adrenaline flow and the mind race. The wheezing in my lungs, what could that be? And how about the pain along my spine, could the cancer have returned? Why has it taken me a month to get over a silly head cold? Why haven’t I gained any weight? Will I ever be healthy? Will I make it to see my next real birthday? The questions had been circling like sharks for the past two weeks. Tuesday. Is it possible to wait that long?

An Involuntary Reaction

The accordion player could have been a corpse for all I know. At first glance I thought it really was a skeleton wearing a seer-suckered suit, bifocals and mesh ball cap. A cheesy teethy grin lingered on his face. The light breeze from the bay could have been bristling his fingers against the keys. The stiff crosswind from the ocean, only 200 yards away from the makeshift stage where he sat, could have been the propelling force needed for the expanding and contracting motion of his arms. The two other members of the band didn’t look dead, but they didn’t look so hot either. They must have all been octogenarians. It was a peculiar sight to see that sunny Sunday afternoon.

When the trio launched into their first song, a smile crept upon my face. It was an involuntary reaction. Filled with worry, a frown doting my face, I had been battling the sharks. But the music, it almost made me giggle. The pace was slightly faster than a crawl, for arthritic hands can only move so fast. The guitarist strummed softly. The accordionist twinkled in and out. The drummer sang. ‘When Irish eyes are smiling…’ I couldn’t help but smile.

I was fastened to my bench. I wasn’t afraid of losing it-there were only seven people in the crowd- but I was enchanted. I must have looked strange- a twenty-something boy, sitting alone on a bench, grinning from ear-to-ear.

A few songs later the group played ‘Happy Birthday’ for an older gentleman seated near me who looked like Abe Simpson, bolo and all. The gentleman bounced up, grabbed a girl and did a lil’ jitterbug to everyone’s delight. ‘Good ol’ boy is 97 today!’ the drummer announced. I couldn’t help but smile.

The band took a break. It’s not easy to play five straight songs with arthritic hands. I went to the arcade and played skeeball and pop-a-shot basketball. I gave the tickets I had won to a cute four-year-old girl. By the look on her face, you would have thought I gave her gold. I couldn’t help but smile.

The band was back on, joined by another old coot playing a trombone. They were really jamming now. A crowd of twenty had formed. The 97 year old rose again and boogied. A father waltzed with his little girl. The rest of the audience cheered in delight. I couldn’t help but smile.

It was a little sad for me to leave Ventura Harbor that day. I still had to drive up to Santa Barbara that afternoon. I opened the door to my rental car, a PT Cruiser with wood paneling. I couldn’t help but smile. I rolled down the windows, cranked the CD player and drove along the California coast at 70 MPH. The sun was shining, the ocean was glimmering and the mountains were looming in the distance. For the afternoon the sharks had gone away. And I couldn’t help but smile.

 

 

Farewell to My Tube

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.

Undercover Brother

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.