April 28, 2002|

Sweet Baby Rain

When it rains in New York City, it’s just ugly. There’s just something depressing about seeing the beautiful skyline draped in a curtain of gray. It’s just dreary. And the rain. Rain is never any fun in New York City. Walking in the rain is always so dreadful. So it was on Thursday, for most people. Heck, for all people, except for me. It was the sweetest rain I have ever tasted. That may have been because of the acid in the rain, but I think it had more to do with my first experience with the outside world in 27 days. I didn’t have an umbrella or rain jacket. I simply walked the five blocks back home getting completely soaked. It was the best. I would have stayed outside the entire day drinking in the rain drops and breathing in the intoxicating air but I know I would have gotten yelled at by the 1,478 mothers in the reading audience. “You’ll catch a cold!” Instead I went to the grocery store, picked up some baby carrots, ranch dressing and lobster bisque and went home to cook lunch. The freedom to have ranch dressing and lobster bisque, I would never take it for granted again.

“The Eagle has Landed”

(Warning: This is a little gross. It’s funny though…) According to the hospital’s computer, I technically still had C-Diff, a bacteria of the G.I. tract. The almighty computer was completely wrong. I had gotten over C-Diff back in February when I was released the first time. In order to clear my good name, I had to provide a stool sample for the laboratory. I approached such very unenthusiastically. Nurse Lauren, though, was emphatic that she needed it. So I devised a code. I wasn’t going to announce to the whole nursing staff over the intercom that I had a stool sample ready for them. Instead I would report in with “the eagle has landed.” Confusion would reign with the staff, but Lauren would understand the code and get the business over with.

Somehow, I guess nurses talk a lot, other nurses heard about my little code and thought it amusing. The climax of such occurred on my last morning in the hospital. A few of the nurses had attended a nursing conference down in Washington DC the previous weekend. I was told a surprise awaited me from the conference. Slightly still asleep, I woke up Wednesday morning to a 12-inch stuffed animal eagle on my desk. As I looked it over, I saw it was wearing a tiny bandana around its neck with the words “Senokot. Works Gentle Over Night.” I chuckled. Sekokot is Sloan Kettering’s laxative of choice. As a promotion, Senokot was giving away the stuffed eagle and the nurses immediately thought of the code. I guess I didn’t pioneer the code after all.

Apologies

I am sorry I was such a terrible communicator over the past few weeks. My e-mail box is full of unanswered messages. My voicemail account the same. I have been quite a slacker when it has come to doing updates. I apologize. I was pretty miserable in those 27 days. The first go round I had a ball. It was, to an extent, fun. There was a novelty to it all. I knew I couldn’t leave so I made the best of the situation. This past time just sucked, to be perfectly honest. I felt healthy. I wasn’t tethered to any IV pole. At any point, I knew I could leave and no one would know the difference. But I couldn’t. I was trapped, simply put. Consequently I wasn’t very happy or joyful. The novelty of it all had worn off. I was tired of seeing everyone in yellow gowns and masks, not being able to see a live smile. The 4AM wake-up calls to take my temperature were taking their toll. The blandness of the food was making me bland. And the uncertainty of my release date loomed like a dreary cloud over my head. There wasn’t much hope in the situation. There wasn’t much hope in me, honestly.

So for four days I have been trying to come up with something good to write in response to that. Something philosophical. Something inspirational. Something hopeful. Nothing. I’m drawing blanks. Nothing would piece itself together here. That’s OK though. Sometimes there are periods of life where it’s just plain…blah. The lesson, the growth, the nugget is found much later upon retrospect. For now, though, I will relish my time out of the hospital enjoying the warmth of the sun, the coolness of the wind and the sweet taste of the rain. All of which I shall never again take for granted. And don’t forget the baby carrots and ranch.

 

April 11, 2002|

Condiments, Madras, Songwriting and 12th Floor Matchmaking

Week number two here in 1228. Slowly, I am starting to feel more like myself again. That whole flu thing (coupled with that transplant thing) really knocked me on my keister. I have had the flu since January according to tests and only this week do I feel like I have shaken it.

So anyway this floor hasn’t been nearly as fun as the Peds floor, but there have been some moments. In previous weeks, I have had horrific nausea causing me to just not eat. I dropped 15 in a three weeks. (NOTE:I don’t recommend that form of dieting. It is no fun.) This past week I have started to really eat again and let me tell you, I have greatly missed the joy of the condiment. Mustard (esp. spicy brown ballpark), mayonnaise and ketchup- the thrill is back! I don’t abuse’em, like my brother Frank would as a little kid. Frank would eat everything with ketchup, vegetables included. Ever see peas floating in a sea of ketchup? Not a pretty sight. Rather, I utilize the condiments sparsely but with just enough flare to make a party for my mouth. At least that’s what my taste buds are telling me.

Yesterday morning my main nurse chic Lauren bolted in and exclaimed, “Madrasboy!’ “Huh?” I retorted. “You are making Madras! Cranberry juice and orange juice! Can you make me a Seabreeze next babe?’ Lauren is a fireball. Ah, I realized. For breakfast, I always order cranberry juice and orange juice and mix them together. It’s a delightful concoction in the morning. Anyway, add vodka to the mixture and you have a Madras. (NOTE: That would probably be even more delightful during certain mornings I have had.) Regardless, it all hit me, dating back to my days as a part-time bartender/waiter at Bent Creek Country Club in Lancaster, PA. Seabreezes (Cranberry juice, Grapefruit juice and Vodka), Baybreezes (Cranberry juice, Pineapple juice and Vodka) and Cape Cods (Cranberry juice and Vodka)- your standard Vodka combinations. Now when I order my breakfast I keep my juice-Vodka combinations in mind. Hmm…what’s a prune juice and Vodka?

Lauren also celebrated her birthday yesterday. In order for me to get a working TV/VCR and exercise bike for my room, I had to in exchange write a birthday song for her. I guess word got around the hospital after my Dr. Boolad song went public that I write songs when I am bored in captivity. So I wrote her a song. Unfortunately as my friends all pointed out, all of my songs sound the same. What can I do? I only know three chords and one strum pattern. Who do they think I am here, Van Morrison?

“There’s a girl down the hall with a Penn blanket on her bed? Didn’t you go to Penn, Madrasboy?’ My ears perked up. Another person on my floor, the Lymphoma-Leukemia floor, from Penn. I sent Lauren back to get details. Another girl, on my floor, getting chemotherapy, went to Penn, graduated my year, in SDT…what?!? “Why don’t you go visit her?’ Lauren exclaimed with gleam in her eye. I was getting set-up on the Lymphoma-Leukemia floor of Memorial Sloan Kettering! Is that allowed? Is that right? Is that ethical? Lauren was loving it. It was a total chic moment. Women love this kind of stuff- playing the matchmaker. Who cares WHERE, let’s make a match!

I had my lines ready (“Uh…nice hospital gown…so, uh, do you come here often?’) Lauren returns. “The docs say you can’t go. You are supposed to be in isolation with the flu, she has 0 counts. They said call her on the phone.’ Now that wouldn’t be a little awkward, would it? (“Uh, yeah, uh is Jessica* there? Yeah, this is Art, um, I’m the guy from Penn down the hall. Room 1228? Do you know it? Uh…so do you like non-alcoholic Madras? I make a mean one…’) I balked. As I write this, actually, my night nurse, Laura just heard the Jessica* story and is totally stoked. She’s got my website business card and my extension written on the back. As soon as Jessica* wakes up to receive her 11:30pm medications..boy, do I need Madras right about now.

Wild at Heart

As you probably can infer, I must have been really sick the past few weeks. I’ll also add that I was in a terrible mood. No one should be told on a Friday night they have to immediately enter the hospital for an indefinite period of time. That just plain sucks. It took me a few days to accept. I really feel sorry and must apologize to my parents for reacting so badly. They were probably questioning their reasoning for staying in New York City with me. To them I owe much gratitude.

What did help me get over the hump into acceptanceland was a book thata friend gave me. Essentially, “Wild at Heart” (www.sacredromance.com) is about “discovering the secret of a man’s soul.’ The author, John Eldredge, hypothesizes that every man has a desire in his heart to have three things: a battle to fight, an adventure to live and a beauty to rescue. For women, he believes that they yearn to be fought for, want an adventure to share in (but not be the adventure) and want to have their beauty unveiled. Much of the problem with our American culture, he further writes, centers around the emasculation of today’s male, who is taught to be nice and sweet, but not daring and adventuresome.

I think his points are correct. Eagerly I feasted on how that applied to others and myself. One thing that was noticeably absent was something that I had read and posted on earlier.

“And that’s the way of a real tale. Take any one that you are fond of. You may know, or guess, what kind of tale it is, happy-ending or sad-ending but the people in it don’t know. And you don’t want them to know.”

– Lord of the Rings: The Two Towers; JRR Tolkien, page 378

It’s encouraging and strengthening to look back on adventures and battles, but hardly ever is it at the time.

I know I will look back at this period of life fondly, but right now, with all of its uncertainty, cruelty and difficulty, it’s not especially fun or pleasant to be a part of.

The other extension that hit me was that when you are in a battle and/or adventure most of the time you are severely weakened. Typically, from the adventure and/or battle, you are wounded, hurt and tired. But, it is in that weakness that strength is born. In concurrence, I have been reading the accounts of Martin Luther King Jr., Mahatma Ghandi, John Donne, Feodor Dostoevsky and others in Phillip Yancey’s book “Soul Survivor.’ All of those great figures, their ideas, their stands, their impact were born when they were at their weakest point. Jail, torture, disease, they experienced hardships that made them stronger for future adventures and battles. How I long to be at full strength to tackle the world! But oh how I need to be strengthened first in order to do so. As much as I think being isolated in a hospital room is a waste of my precious time, it is only the foundational support that will allow me to do and build much more later in life.

“Life is a gift. Life is happiness, every minute can be an eternity of happiness. Love every leaf, every ray of light, love the animals, love the plants, love each separate thing. Loving all, you will perceive the mystery of God in all,’ Dostoevsky wrote after his imprisonment. I hope to write the same after mine.

Day 50

I don’t know how much longer I will be in here. At least for another week, probably more. The CMV isn’t responding to conventional treatment so the docs have brought in the big gun drugs. I feel very good though. My energy has returned somewhat, my nausea has been tempered and my rash is history. Now let’s work on this CMV thing…

Today is Day 50. Halfway to hot dogs and Ruth Chris steaks. I can imagine the taste now…mmm…

My e-mail program has not been working properly. I apologize for not responding to e-mails. It’s not me this time, it’s the computer’s fault : ) If I did not respond to an e-mail you sent lately, try again. I am in the process of getting it fixed as I write. Thanks for understanding.

Battles, Adventures, Romance and Grace to all.

*names have been changed in order to protect the innocent

April 6, 2002|

Cytomegalovirus (CMV); any of a group of highly host-specific herpes viruses infecting humans, monkeys, or rodents, producing unique large cells with inclusion bodies. Opportunistic infection with cytomegalovirus is extremely common in immunocompromised individuals causing clinical illnesses such as chorioretinitis, pneumonitis, esophagitis, colitis, adrenalitis, and hepatitis; the most common of these is chorioretinitis. Cytomegalovirus also causes cytomegalic inclusion disease, although a majority of infections are very mild, and it has been associated with a syndrome resembling infectious mononucleosis. (Miller-Keane Medical Dictionary, 2000)

Back in the Pen

While reading at Starbucks, I got the call. I knew there was a good chance it would come it was just a matter of when. “Art we need you to come in ASAP. You’ve got CMV and we need to treat it.” So my mom and I packed a few of my things and then promptly waited five hours in an isolation room in the Emergency Room at Sloan Kettering. So much for ASAP. By midnight I finally got into my 12th floor isolation room. I was back in the Pen.

Seventy percent of the population carries CMV. You just never feel its effects because your immune system is strong enough to keep it under control. As for me, right now, my immune system is in a weakened state, so the chance of CMV presenting itself was great. From what I have gathered from my sources, almost all transplant patients come back in the hospital for another stay. Typically CMV is why.

So I spent most of last week trying my best to make time pass quickly. I have never napped and slept so much in my life. By Friday I couldn’t watch another episode of “The Simpsons” or “Seinfeld.” (I can’t believe I just wrote that!) Twice a day for two months in and out of the hospital. I had seen them all. I could line for line quote most of the episodes. My parents are quite freaked out by such displays of memorization.

Making it more difficult, though, has been the room I currently reside in. It is similar to a prison. Freshly painted and redone, it is as bland as a salt-free saltine. The new TV and VCR aren’t hooked up yet. The old two-inch TV gets half a channel. I brought my slow-footed and low powered laptop instead of my desktop computer, thinking I would be out of here in a week. In the words of Homer Simpson, “D’oh!” No DVDs, slow Internet connection, no MP3s, it was a LONG week. The scary thing is that it can only get longer. I could be in here, with all of those enmities, for a month, if the CMV virus can’t be subdued with normal medication.

I apologize for not telling or writing about this sooner, but I really thought I would have been out a long time ago. This wasn’t supposed to be a big deal I thought. It still isn’t a big deal- well, it kind of is- but it is quite manageable. It’s just hard to feel genuinely good, to have your legs about you, to finally be eating food without yakking, and to be unattached to an IV pole while still stuck in an isolation room in the hospital. UGH! Character, Art, such moments as these develop character.

Finally, today, I was able to snag a TV and VCR. The movie nights that I planned for my earlier stay may come to fruition. Just today I watched “Braveheart” and “Chariots of Fire.”  No movie, other than “The Matrix,” gets a man more fired up to kick butt than “Braveheart.” Hopefully it will inspire my cells to kick butt and kill off the CMV. Let’s pray that happens.

March 28, 2002|

Long Time, No Update

I apologize for not having completed an update sooner. Almost two weeks have passed, which from the sounds of it, appears to be an eternity for some of the readers.

Frankly, I have been really tired. I sleep a good 10 hours a day. In the afternoon I usually take some sort of nap. The rest of my day is spent waking up. Literally.

I just have a lot of different things going on inside that are just taxing my system. I have been battling a wicked flu that finally is starting to let up. I had a terrible sore throat that was hindering what little eating I was doing. For some unknown reason, I have a very nauseated stomach that has limited my eating significantly. My rash, which we know of no origin, is sticking around longer. And the heebee jeebie chills have returned. So many side effects, so little time. It has not been a fun two weeks.

I wish I had more to write, but I really don’t. My brain has been on hibernate mode. Further add multiple watchings of ‘Monty Python and the Holy Grail’ and ‘National Lampoon’s Animal House’ and my brain is just down for the count. I sit here replaying various scenes on my DVD, entertaining myself into oblivion. ‘Bring me a shrubbery!” ‘What over? Nothing is over till we decide it is…was it over when the Germans bombed Pearl Harbor? Hecks no!” ‘Just because some watery tart gave you a sword does not establish a system of government!” …

So that’s all here. The dumbing down of Art.

Please pray, if you can, that I would be able to have more energy and that my immune system would be able to fight off these side effects. Thank you so much. 64 more days. 64 more days…

 

March 17, 2002|

What is a Neutropenic Diet?

Last week I wrote of my 100 days. Well, you were probably asking why I can’t eat certain foods. Below is link that will give you the details.

http://www2.mc.duke.edu/9200bmt/NeutropenicDiet.htm

It’s interesting and somewhat intuitive for my case. As you will read, hot dogs from vendors, WAY out of bounds. 84 more days, 84 more days – we will have to have a hot dog party on day 100. Just around Memorial Day. What better way to celebrate?

Was I Really A Bubble Boy?

Not really. Those pictures of me in the bubble were simply of a pentamidine treatment that lasted all of 20 minutes. Because I have a new immune system, I am very susceptible to a host of diseases. Pentamidine is a drug that is inhaled, coating the lungs in order to defend against a few types of pneumonia. In order to get the full effect, I had to go in the bubble. I thought it was hilarious. I couldn’t help but think back to the classic Bubbleboy Seinfeldmepisode. “The Moors!” “The Moops!” “The Moors!” “The Moops”

Hanging By A Moment

I have been asked the same question by dozens of people in the past week. It basically goes as follows: “Now that the insurance battle is over and the hospital stay is complete, what next? What are you going to do in the future? Where are you going to be?” It’s a very legitimate and important question. Very. I never discredit it. I have the answer, but it’s not always for me to admit.

You see, I was (am) a typical Type A dominant male. There is nothing that us Type A males like more than long-term strategic planning. We relish the chance to do it, on our own lives and other’s lives. I (used to) bristle and cringe when I met someone who didn’t have his or her life planned out for the next 5 years. “Get yourself together son! Where’s the initiative? Where’s the drive? Where’s the organization? Pull yourself together man!”

Now. Hmm. My Type A-ness has been eroded. It wasn’t by my own choice, that’s for sure. I have gone down kicking, scratching and screaming. Eventually Providence won out, like He always does. To assure and console me, though, I have a constant reminder.

The number 1 song of 2001, according to Top 40 radio, was a simple, catchy three and a half minute tune by an unknown 20-something alternative band named Lifehouse. They and the song essentially came out of nowhere. It was the first major hit for SKG Dreamworks records and very much a fluke.

The first time I heard “Hanging By A Moment”, I ran out after work to the Virgin Megastore in Union Square and snapped it up. I can’t tell you how many times I have listened to the CD since. I never tire of hearing the song, even though I can only imagine most of America has. To me, though, it encapsulates…me…my story…what I believe. It also holds the answer to the question of “my future.”

Desperate for changing

Starving for truth

I’m closer to where I started

I’m chasing after you

I’m falling even more in love with you

Letting go of all I’ve held onto

I’m standing here until you make me move

I’m hanging by a moment here with you…

Forgetting all I’m lacking

Completely incomplete

I’ll take your invitation

You take all of me

I’m living for the only thing I know

I’m running and not quite sure where to go

And I don’t know what I’m diving into

Just hanging by a moment here with you…î

You can totally interpret it as a human love song. Jason Wade, the lead singer and writer, writes on www.lifehousefans.com: “This is a love song that can be interpreted in a bunch of different ways.” I can really only picture this as a deeply spiritual love song that transcends human love. It has to. Can mere human love be that deep, trusting and intricate? It has taken me until now, a year after the song was released to fully grasp what I believe is the real meaning.

My life right now is “hanging by a moment.” I can’t plan out a month in advance in my life, let alone a year. Who knows what could happen to me? In a month I could be back in the hospital battling pneumonia or some other infection. In a month I could have a relapse and be back in getting more of Billy’s cells. In a month I could be fine and outside rollerblading in Central Park. Who knows? I certainly don’t and any long-term planning I try to make is in vain. Instead,

…Letting go of all I’ve held onto

I’m standing here until you make me move

I’m hanging by a moment here with youÖ

I’m living for the only thing I know

I’m running and not quite sure where to go

And I don’t know what I’m diving into

Just hanging by a moment here with you…

Application for yourself? It’s easy to get into the mindset that we control and can plan our own destiny. It is. I certainly have fallen into the trap many a time. Instead things happen that are out of our control. Look back at your life. What do you see? Were you able to plan everything that happened to you? If you are really honest you will say “hecks no.î”We can’t control that things that happen in our lives, we can only really control our reactions to those things.

I like to think that we are all in some sort of story. The plot surrounds us at all times. What do we want to do? We want to plan out the plot. (There is a Type A-ness in all of us I have come to find. It is in our inherent nature that we want to be in control. It’s just part of being human.)

This afternoon I was talking with some friends about the whole marriage thing. It’s funny how us single people love to dream about how we will meet the right person, how their timeline and goals will fit into ours, and how ‘realisticallyî we have it all planned out to work. We think we have the best plot line worked out. As I have observed, though, it never ever works out that way. That’s a good thing though! God’s plot lines are so much cooler than ours will ever be.

Do you believe that? I finally do. Just my last month has proven that. The weekend I was approved by the insurance company all of my homeboys just ‘happened’to be flying in from across the country to visit. We had planned it out months ago. What a better way to celebrate! The weekend I was released from the hospital? It just so ‘happenedî that one of my best friends from college flew in from San Francisco to visit. We had planned that out months ago. What a better way to celebrate! How about me moving to the Peds floor? Moving down there was the best thing to happen to me- I got out in record time because of their care. Could I have planned that out? Would I have been able to orchestrate the logistics of it all? Could I have created a better storyline? Hecks no.

‘…There’s nothing else to lose

There’s nothing else to find

There’s nothing in the world

That could change my mind

There is nothing else, There is nothing else, There is nothing else

Just hanging by a moment here with you…î

It annoys me to think that many believe we on earth are a mere product of chance. Do you really believe that your life and everything that has happened in your life was mere coincidence and not the perfectly detailed plot line that it is? What a depressing existence! What do you have to live for? I can’t help but know that there is something more out there. I can see it. That is what puts my mind at ease and gets me out of the Type A controlling mindset. Yep, I certainly am ‘hanging by a moment,’ but the difference is that I am in the care of an Author who is writing the most amazing plot line for me and for others. That’s why I have no need to plan out and try to control my future. That is what allows me to answer the question about my future. “Frankly,” I say, “I don’t know and I don’t have anything planned out.”

‘…I’ll take your invitation

You take all of me

I’m living for the only thing I know

I’m running and not quite sure where to go

And I don’t know what I’m diving into

Just hanging by a moment here with you…î

March 14, 2002|

100 Days and 100 Nights

In the movie theaters across the country…

Josh Hartnett: “No sex for Lent! For 40 DAYS!”

Confessional Priest: “You won’t last a week!”

In an examining room at Memorial Sloan Kettering…

Dr. Perales: “No fast food, no fresh vegetables or fruit, no crowds, no going anywhere without masks and gloves! For 100 DAYS!”

Art: “I won’t last a week!”

Just the mere thought gave me a shudder. Almost every time I go to Sloan Kettering I always order two mustard and sauerkraut hot dogs from the vendor on the corner. They are the most delicious morsels you have ever tasted. OK, maybe not. But those dogs are darn good. But, alas, I cannot have one for the next 88 days. Same for Big Macs, Ruth’s Chris Steaks and Chalupas. It’s going to be a LONG 88 days.

I gotta do what I gotta do, unfortunately. Duty beckons. The risk of infection, fever, flu, colds, germs all potentially await a new baby immune system that I now carry around. Even presently, having just been released from the hospital, I am battling para influenza (common flu) and possibly a minor case of pneumonia. And I was just released! Those bad boys probably started there, knowing the symptoms I have been exhibiting pre-release. Thankfully I have wonderful medication that is keeping the two at bay. Regardless, it’s going to be a rough 88 days of discipline for an undisciplined rogue like myself.

As you have might have seen in my new photos, I sorta kinda already broke the whole crowd rule deal. The first thing I did once I was released on Saturday? I dropped off my bags at the RMH and headed for J. Crew. So it maybe, most likely, was not the smartest thing to do. I figure mental and emotional well-being is just as important as physical. I needed to enjoy my new found freedom, walk around the city, smell the crisp intoxicating air, and buy a new baseball cap. That green J. Crew one is in way too many of pictures. On the trip, I wore a mask as much as I could tolerate. I am still getting used to the whole smell your-own-warm-tepid-breath feeling you get when you wear a mask. It takes awhile.

What’s Your Favorite Sport? What Foods Do You Like? How Many Kids Do You Have?

I must mention that I have received just an overabundance of cards, gifts and letters. The number is quite staggering. Thank you so much! In the department of most cute, though, are the letters I have received from the students in Mrs. Titus’s third grade class. All are excellently hand-written and well composed. They have given me quite a chuckle. I’ll leave you with a few of the verbatim highlights.

Dear Mr. Canning

I have bean in the hospital I think 1 or 2 times. I had to get stichis on my chin. Hear is the story how it happened. I was standing on a chare over by a window and the chare collapsed and I hit my chin on the window sil and I split my chin open. And it took 5 people to held me down in the bed.î

Dear Mr. Canning

I wish you good things and get well soon. And get out of the hospital. Can I ask you a question? Good. How long have you been in the hospital? Where you at in New York when it happened? And one more question, will you right us back?î

Dear Mr. Canning

I am nine years old. I was in a emergency room on a ship. I fell off a top bunk going on a Galapagos Expedition. I really hurt!

Do you have any favorite sport? How many kids do you have?

(My reply to the second question: I don’t have any kids just yet. I am only 24. I need to find a girlfriend and get married first. Those are hard enough. I’ll work on those for you.)

It’s a beautiful day here in Manhattan. I am spending the day in Central Park. Maybe I’ll find a girlfriend. (“Baby, if you were words on a page, you’d be what they call FINE PRINT!) Maybe I’ll have hot dog…uh, maybe not. 88 more days, 88 more days, 88 more days…

March 11, 2002|

“Dr. Boulad, Oh my Dr. Boulad, He makes me feel better, he works at Sloan Ketter—-ing”

Saturday, oh, Saturday, quite the bittersweet day. While I was ecstatic to be leaving the confines of room 506, I also was somewhat sad to depart the comfort and safety of the Peds floor. Friday the stir-craziness had reached its peak though. All of my material possessions were sent back to the Ronald McDonald House down the street, leaving me just my guitar and the TV. Averse to having to watch anything other than “Seinfeld” or “The Simpsons,” I sat down and composed more songs, Adam Sandler-style. The attending physician, Dr. Boulad, now has a theme song. So does Dr. Joe, the attending Fellow. At 7:45pm, the world (actually Peds floor) premier hit the streets, as I was persuaded to let all of the nurses and aides hear it over the intercom. Judging by the fact I was let out the next afternoon indicated to me the response of the song. Hmm…

Actually, in all seriousness, things went way better than I (or they) could have ever expected and that’s why I was released. The song thing may have just put it over the top. 🙂

I was released in supposed record time, 26 days- two weeks earlier than planned. I had one fever the entire time. And even that wasn’t really a fever. It was more a reaction to having a room temperature Ensure not sit well or stay in my stomach. While last week was rough, it was nothing compared to anything I had experienced with my previous transplant. I now know what it feels like to have allergies for the first time. Itchy eyes, runny nose, ugh. And the rash, well it’s there, but doesn’t really cause discomfort. The only thing that really is bothering me is lack of sleep. Even now, out of the hospital, I haven’t been able to sleep for more than 40 minutes at a time. I think all of the chemicals and Billy’s cells are just working overtime. If that’s the worse I got, I’ll take it any day.

I must give a big thanks to all of the many nurses, doctors and aides on the Peds floor who made my stay so comfortable, enjoyable and fun. I truly was sad to leave. Thankfully, once I get better, I can always go back and volunteer in someway, seeing all those great folks again. I will have more fun pictures up tonight. The pictures always tell a better story than I could ever write.

What Happened and What’s Next…

I just realized I have so much to write. There are so many stories, so many insights, and so much new health information to pass along that I could be here all day writing. Indeed, this update could very well be a book in itself. Judiciously, I would rather let everyone know that I am out and doing well rather than have you waiting for three days to know my story. So let me end it at that. I promise, barring any freak health incidents, to have more written later in the week. For now, enjoy the pictures and stay away from room temperature Ensures.

March 4, 2002|

BUSTIN’ OUT! DARTH NOT INCLUDED!

Latest news: If all goes to plan, I will be released on Saturday! 26 days! Wow! Anyway, please pray that no freak fevers, rashes, colds, flus, and infections pop up over the next 48 hours. Art’s back on the town. Watch out! Thanks!

You Look Like…

Finally it hit like the proverbial poop in the fan. Billy’s cells have started their work. After initially whining for three days (I know, I heard them inside of me), they started to redecorate the insides of my body. Needless to write, my cells retaliated in big brother fashion, only to be put down in weak fashion. “The Fuzz Daddy” (Billy’s self-given nickname- he thinks a.) he has the softest hair in the U.S. and that therefore makes him b.) the sexiest man alive) has taken over.

Naturally, then, I have felt like poop. Three people today have even said I look like poop, in so many words. My usual peppy and energetic self has been drained the last few days. It’s not all Billy’s fault. Most of it actually lies in my lack of sleep. I just have a lot of liquids going in me…and therefore going out of me. True to my oft-mentioned mission statement, “Art: a 64 year old trapped in a 24 year olds’ body with a 4 year olds’ bladder” I have been going every 45 minutes between the hours of 10pm to 9am. No lie or exaggeration. Ask any one of my night nurses. It’s like my body thinks I am on family vacation, barreling down the Pennsylvania Turnpike. “I gotta go! I gotta go! There’s a rest stop! There’s a rest stop!” (I don’t mean to be graphic or anything. This web site receives hundreds of hits a month from transplant patients. I don’t want to sugarcoat what has been my fiercest nemesis.) It’s just the root cause of my general drowsiness and discomfort and why I don’t answer my phone or e-mails nowadays. I am just too tired. And maybe that whole transplant thing had something to do with it too.

I am happy to report that my sore throat is on the mend, as is my queasy stomach. My blood counts have also shot up in the past three days, which is a great thing. Unfortunately, as with any new immune system, new allergies arise. I have a nice red prickly point rash growing on my hands, wrists and feet. Thank you Mr. Antibiotic. Chics dig gashes, not rashes. D’oh! 🙂

My hands are still chilly. New Nike batting gloves did arrive from Eastbay last week, which have made my hands feel quite toasty. I do get queer looks, though. (“Who’s the old guy on Peds playing with a toy truck wearing gloves?”)

Truck Report: No Fatalities, One Freaked Out Three Year Old

Latest news on my radio controlled monster truck while we are on the subject: Nick is a three-year-old down the hall who gets daily visits from my dad. Saturday, my dad suggested that as Nick takes his walk in the hallway (his first in two weeks), I drive the truck out and see if Nick wants to play with it. I must say I was a tad apprehensive. Regardless, like the good son I am, I obeyed my father’s orders and drove the truck out to the hallway, turning right towards Nick. “BAAAAAAAAHHHHH!!” was all I heard. I didn’t even have to see Nick to know it was his piercing shriek and crying. I didn’t hit him, but I must have been close. The truck had frightened him senseless. Nick’s walk came to a close shortly after that. Let’s recap so far; one doctor hit and one toddler freaked out. This truck is turning out to be more fun than I thought. 🙂

Stir-Crazy? No, That’s Just My Normal Self

The looming question on everyone’s mind is if I am going stir-crazy after three weeks confined to one room. Well, not yet. The symptoms may be appearing though, according to some. Today I spent thirty minutes in a trance composing a song on my guitar about my favorite sleep-inducing medicine (“Ativan, Ativan, oh, you are my best friend. Oh yes, for us weary non-sleepers, you help to close our peepers”). I also started working on a song about my favorite night nurse’s aide, but then she walked in, embarrassingly leaving me a in a heap of gibberish (“Kate, oh Kate, my temperature you do regulate. And every time you take my pulse, it shoots up, which isn’t falseÖnrrmshigmrashenterni”) I haven’t gone crazy, yet. I have so much to keep my mind occupied- books, videos, computer, visitors- that I don’t have time to get stir-crazy. Plus, on the physical side, I am getting massage/reflexology every other day in order to keep my blood flowing and my limbs limber. It’s not a hard massage like I need, but it’ll do for now. What I really need is a BIG blond Swedish woman named Olga or Helga to come and pound me to smithereens with her manly bare-handed grip. I don’t see that being permitted in the hospital. Oh, I can’t wait till I get out. Oh, uh, pardon me now, though, it looks like I’ve reached a rest stop again. My 45 are up. D’oh!

February 28, 2002|

Turning 24 on the Peds Floor

It was an ominous morning. It all started at 4AM with my nurse mentioning the b-word. Then at 5AM another nurse. Then at 6AM another nurse. By 8AM I was utterly freaked out. That’s when Z, my chillin’ nurse’s aide, came in to take my temperature and mentioned everybody knowing about my big day, even the playroom. “Not the play room.” I moaned to her half-asleep, I’m turning 24 on the Peds floor. OOOOHHHHHHî I was envisioning a scary birthday, not a happy birthday. Remember, I am 24 on a Peds floor. “Clowns, ponies, cakes with sparklers, balloons out the wazoo, midgets…when would the madness end?” I pondered.

I approached the day cautiously. Blinds covered the windows. The curtain was pulled. No one would know. It wasn’t till I received my breakfast that I realized it was all in a futile attempt. On the little menu card dictating my choices was a little typed-in line. “Happy Birthday from Dining Services!” Shoot! If Dining Services knows, well then everyone knows. Might as well enjoy it while you can. An extra apple juice with my Cheerios- happy birthday to me.

Thankfully the playroom folk never materialized. Two clowns stopped by, though, and did a stirring rendition of “Happy Birthday,” in Basso Nova style, with a harmonica, shaker egg and two tongue depressors. The pictures are now available online under the photos section for your viewing pleasure.

The rest of the day was event-free. No ponies, cakes with sparklers, midgets. I did get a bunch of balloons, though. Balloons, I can take balloons. Sue, from Integrative Medicine, stopped by to give me my weekly reflexology treatment (read: foot massage). Oh ho ho! Man, that’s better than any pony or midget!

Someone sent me a radio-controlled truck today. Let me tell you. I already wrecked it twice. Once onto the shoe of the attending physician, who started rounds today on the floor for the first time. I was in my room; the truck was out in the hallway (off-limits to Art). He picked it up and walked to my door. I shut the blinds. Busted. I can only imagine his thoughts. “The 24-year-old birthday boy, playing with his toys.”

The rest of the day was spent with friends, watching Friends and enjoying Minute Maid juice boxes. Personally, that’s what I would have wanted in the first place.

Anyway, this is not an update to solicit Birthday wishes or the like. Contrary. Instead I hope you enjoyed reading the story of my birthday as much as I enjoyed partaking in it. I think it’s another hilarious chapter in the saga of “Art on the Peds Floor” that will have to be part of my book, whenever I get around to writing it.

On a Sappier Note

I was watching the Grammy’s last night and became very intrigued with the first performance, U2’s Walk On.I am not sure what it was that got me, but I was hooked. So this morning I listened to the song very closely and discovered this nugget of truth and profundity, spoken in the first few seconds of the song:

And love is not the easy thing

The only baggage you can bring…

And love is not the easy thing….

The only baggage you can bring

Is all that you can’t leave behind

I never got the title of the CD. What does “All That You Can’t Leave Behind” mean? What is Bono trying to say? Later on he continues at the end of the song:

All that you fashion

All that you make

All that you build

All that you break

All that you measure

All that you steal

All this you can leave behind

All that you reason

All that you sense

All that you speak

All you dress up

All that you scheme…

My feeble translation? Bono is saying that there is nothing, nothing that is more permanent in this life than love. All of the “stuff” that we deem important in life- fame, riches, success, happiness, work, identity…doesn’t come with us! It’s all stuff that we leave behind here on earth. But the permanent, the thing we should be striving for and doing, is love. Yet, why do I put those things first many times? Add to that the little throw-in “…is not the easy thing” for your answer. It’s much, much easier to pursue the other stuff in life. Love, man, it’s gosh darn hard work. Loving people we are supposed to love, that’s hard. How about loving people we are not supposed to love, that’s even harder. Loving people who not our age, race, religion, status, that’s the hardest! It’s so much easier to pursue the other stuff. But what’s the point? It doesn’t come with us. It doesn’t make the trip.

Well, you may be asking, why is that hitting me now? I can’t help but look around my room for the answer. I look at my right wall and I see a quilt with 100some squares made by as many friends, family and co-workers. I look at the wall in front of me and see 50some greeting cards. I look at the wall to my left and see balloons, postcards and gifts. Now those are things that will get left behind. But the love behind them, that never will. Never. That’s remarkable. I can’t help but tear up as I wrote that very sentence. It’s humbling and touching at the same time.

I know I’ll never be able to reciprocate it all. I don’t think Hallmark would be able to print enough thank you cards. Instead, though, I have come to realize that I need to do what I can and make love my priority here. It’s the only carry-on bag I keep. The rest, it’s all checked-in baggage that gets “lost” in route.

And you all, you all are my example. I am blessed and fortunate to have many a visual monument reminding me of what’s most important, the one thing I can’t leave behind. Thank you, in my sincerest gratitude, for providing those monuments. May I someday, with a little Help, do the same.

And love is not the easy thing

The only baggage you can bring…

And love is not the easy thing….

The only baggage you can bring

Is all that you can’t leave behind

February 24, 2002|

I Must Have Been in Love…

Wednesday was the big day. It was an incredibly uneventful affair for being the procedure that could end up saving my life. I got up late (you’ll understand the significance of this later), had a little oatmeal, took a shower and then received the cells. I even wrote thank you notes and ate a mediocre lunch while getting infused. It was like getting any old transfusion, going through Darth and everything. I took a nap. The Benadryl knocked me out. I woke up. It was done. I watched The Simpsons and Seinfeld.

Then it happened. I fell in love. Isnt that what chills are all about? Let me tell you, I must have been REALLY in love. I had chills so bad I yakked. Really.

I don’t know who I fell in love with. All the nurses here have boyfriends. At least that’s what they tell me. (“Are you a surgeon? ‘Cause you just took my heart away!” “If you were a new hamburger at McDonald’s, you would be McGorgeous.”  “There must be something wrong with my eyes, I can’t take them off you.”) The doctors, well, they are doctors. And, well, that’s the extent of my human contact. Hmmm…

My other theory is that Billy’s stem cells were fully integrated into my system and started giving me the major heebee jeebies. Thankfully whatever happened has passed.

Since then I have had very few side effects, which is remarkable. I still have the crazy “cold fingers cold toes hot body” side effect. I have bad bouts of chills, but nothing like I had Wednesday. My throat is getting progressively sorer. That’s about it. Remarkable.

Life in Peds Part II

I have discovered that I really am digging life on the Peds floor. It’s so much better than being an adult, let me tell you. Let’s compare. Upstairs, on the adult floor, the nurses wake you up at 4am to weigh you. Then at 5am they come in again and draw their blood tests. At 8am the team of doctors make their rounds. One word for you- ugh! The chance of getting any sleep up there is remote. (You would think the more sleep a patient would get, the better, right?) Down here. Ah down here. I crisply wake every morning around 8:30-9am. The nurse comes in after I have awakened to weigh me. At 10am my primary nurse comes in to draw bloods. And maybe 10:30-11:30am I see the team of doctors. I can sleep in! I can sleep in!

Fridays are a good day. Friday afternoon the junk food cart comes around. Oh junk food! Any junk food you can imagine, they bring to you, to your room! I haven’t eaten a whole lot in the past week, but I couldn’t pass up that chocolate cupcake and bag of popcorn. You never get junk food upstairs. Maybe a tropical fruit cup. That’s as wild as they get up there.

Also down here they have started me on TPN, which is calories and nutrition through the IV. Hello? Where was that upstairs? Where was that last year when I lost 15 pounds?

Last week, I remarked about my shower limbo. What I didn’t mention is that my bathroom here is twice the size and twice as warm as the one upstairs. That’s huge. Quality of life, my friends, quality of life. It’s the little things. (Ha ha, get the joke? Little things? Peds floor?)

Up Next

From here is just the monitoring game. Today my blood counts have just about bottomed out. I have no immune system today. Scary. In a few days Billy’s will grow back. From there I will be in here a few more weeks just to make sure Billy’s cells take over and I don’t catch a cold or get the flu. So I’ll be here. I just hope I don’t fall in love again. Don’t you go fallin’ in love either! 🙂