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! 🙂

February 19, 2002|

Mickey Mouse Phones, Darth Vader IVs and Doing the Shower Limbo

It’s Day 1 here at Sloan Kettering, Art reporting from the Peds (pronounced “PEEDS”) Floor. Friday was quite the move. You would have thought Diana Ross had entered the Peds floor with the entourage of handlers and baggage that I came down with. The hall looked like a refugee camp- a bright happy refugee camp (insert smiley face!). The hallway walls are painted a bright (screaming) yellow and dark (joyful) purple. My room, while the trademark hospital white adorned the walls, had a Valentine’s heart on the door, smiley face corkboard, and a Mickey Mouse phone (standard in all Peds rooms, thank you very much).

As if all of this wasn’t shock enough for my system, the worst I have yet to write. The room is half the size of my old room.

That shouldn’t have shocked me as much, I mean c’mon, duh, you are moving to the kids floor where they are half your size. A room like this would be gargantuan for them. And a room like the one I had upstairs, heck you could have had a very competitive game of hide-and-go-seek or capture-the-flag in it (Okay, you got me, we played once…).

Other than the size of the room, I can’t complain. The nurses have been exceptional. They are diligent, thorough and all roughly my age. (“So, uh, you come here often? Did I mention you look fabulous in white? Nice scrubs!”) The TV is bigger. Parents get free meals. It’s not a bad deal at all.

Sunday I was attached to a new IV. Not just any IV, but a Darth Vader Star Wars-looking (and sounding) IV contraption. I couldn’t help but play “The Imperial March” on my computer while I was being hooked up to it. It is huge. There are approximately 234 different pumps that attach to the three computers that attach to the tubes that lead to the three tubes in my catheter.

By the way, also to dispel any rumors, I don’t have a real catheter. Those are gross! I can get up and walk to the bathroom on my own, no need for such devices. The catheter I speak of is the one that is attached to a main artery in my neck, which then goes under the skin and protrudes out of my chest. It then splits into three different udders, which attaches to the ten-foot tubing which attaches to Darth.

Now the room is small, so I don’t have to move Darth at all. The ten-foot tubing is ample enough that I can reach all corners of the room, except the shower. If you ever need a good laugh, you should see me shower…hold on, that didn’t come out right. What I meant was that it is difficult enough showering with a catheter in your chest. It doesn’t get any easier when the tubing doesn’t quite reach all the way to the end of shower. My torso is bent back, my arms are flailing to help maintain balance, as the tube is completely taut around the shower curtain, connected to Vader outside the door. It looks like I am in an intense limbo match. Meanwhile the water only reaches as far as my bellybutton (Remember? Peds floor, They’re all midgets. The bathroom sink must be eleven inches off the ground and the toilet is closer to six. The shower-head, around four feet.), so I have to somehow manage to utilize my poof and shampoo while trying to get wet while trying to not fall and lose my balance (and hence lose the limbo match). It is an incredible act of skill, bravery, courage, flexibility and suds.

Hot in the Middle, Cold on the Outside

So the next question invariably will be: “How are you doing?” Well, so far so good. I have had very few side effects to any of the many chemotherapies, antibiotics, anti-fungals, anti-nausea…that I am on. I had a short bout of nausea, an hour of back pain, a fifteen-minute fever and a sour stomach. That’s about it. I feel great. The only other side effect I have had is from an anti-graft vs. host disease drug. The side effect, which is documented, makes your fingers and toes freezing cold, yet makes the rest of your body extremely hot. I have been through many a bizarre side effect, but this one is may top the list. Itís not painful. It’s just annoying. And confusing. My brain wants to dress me in shorts, a t-shirt, boots and gloves.

Nothing else to report. Tomorrow is transplant day. Billy’s cells have successfully been harvested and now it’s just a matter of getting them in and working. More on that in a later update.

Thank you all so much for the many cards, packages, visits and e-mails. It has made all of this so much more bearable, knowing that you are out there praying and thinking about me. God is listening and is working. I know. I can feel it. I thank you, and Darth thanks you.

New Address:

Art Canning

Room 506

Memorial Sloan Kettering Cancer Center

1275 York Ave.

New York, New York 10021

February 14, 2002|

The Floor Has Spoken…

It’s only been five days and the decision was rendered. A few alliances formed, I tripped over my IV tubing during the immunity challenge, and…well…I was booted off the floor. My flame was extinguished. No worries. You’ll hear the whole story on CBS This Morning tomorrow. Letterman the night after.

Just joking! 🙂 Actually, I have been booted off the floor, but for other reasons. There is a shortage of rooms here on the 11th floor and there are excess on the 5th floor. Yep, I’m going to the 5th floor- ahem, the “Pede” Floor…short for Pediatric.

If you are not laughing by now, I don’t know what else to write to make you. I think it is hilarious. I was the youngest patient here on 11, so I am the first to go. I just hope this trend doesn’t continue or we could have forty year olds joining me. I am sure they would thrilled to have a Nintendo in their room along with all of the Barney videos. Me, I am pro-Barney. He’s dealable.

Cheese Sandwiches, Pizza and Ensures

I am just now getting in the groove of living here. One of the many daily adventures revolves around meals. Everyday I receive a paper with my menu choices for the next day. If nothing appeals to my liking, I can write in something. So the past two days I have written in “cheese sandwich.” I was thinking, hmm…a nice grilled cheese with soup, can’t beat that. Instead I erred in my communication and got what I asked for. A cheese sandwich. Two pieces of American singles inside of two pieces of wholesome white bread. I forgot to write “grilled”. Doh! Have you ever tried to eat an ungrilled cheese sandwich? Instead I have feasted on these personal pizzas that I swear they are using in Salt Lake City for hockey pucks. Thank God for Ensure. Mr. Ensure, if you are out there, thank you.

Continuing to do Well

Just to dispel any rumors. I feel great. The docs are amazed that I have had no side effects from the antibodies and chemotherapy. This is actually the best I have felt all 2002. Last month, ugh. Colds, flus, stomach bugs, no sleep. Miserable January. Now, I feel so much better. Goofy booty-shakin’ Art dancing has returned. Me and my Justin Timberlake bobble head, dancing the night away…maybe that’s why they voted me down to the fifth floor…hmmm…

Anyway, thanks for the many responses to my last posting. I do need to clarify some things, though. The main point of what I was writing was to say that me, you, we need not be afraid of taking risks in relationships and love. The joys far outweigh the sadness that could come in any relationship. I wasn’t writing to anybody in particular or any constituency. I just felt that that is an amazing lesson and wanted to share it. It does not by any means imply that I am pulling away or the people are pulling away from me. Instead the opposite is occurring. I am drawing close to SO many more people, as they are doing likewise. It’s awesome. It only took me 24 years and a battle with cancer to fathom it all.

Now if you will excuse me, I have to eat my dinner…dang! Cheese sandwichs again!