Turning 24 on the Peds Floor

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

I Must Have Been in Love…

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! 🙂

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

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

The Floor Has Spoken..

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!

A Room With A View

February 12, 2002|

A Room With A View

1122. That’s the new digs for the next month. As the days go by, the weather gets warmer, and greenery appears, I’ll be watching from my climate-controlled pad. As opposed to last year, I won’t be allowed out of the room. The fear of infection, colds and flu linger in the minds of many here on the 11th floor. Therefore my room is the safe harbor, where such vessels will not enter. Or at least shouldn’t. Guests wear rubber gloves and surgical masks. The air is new and recycled through a machine. The sweet smell of Lysol permeates the air. It is quite the safe harbor.

I do have a great view here. It’s of the East River. Ah, the East River. Garbage barges barreling up the river, oil rigs sauntering down, the occasional dead mob informant bobbing along this way and that, what more could I want? 🙂

Show Us Your Tubes

If I was down in New Orleans this week, I would get my beads via that suggestion (liken to a similar suggestion that most men shout at the ladies in the Mardi Gras crowd…think about the rhyming possibilities…). Ha ha! It took a day to get used to the catheter they placed in my chest. It was a tad sore and felt heavy yesterday, but today, I didn’t even pay attention to it. That was until my mom tripped on the hosing going to the IV drip and caused a slight yank. Yep, I yelped like a little schoolgirl. No harm done though.

Inherent Risk

I apologize for not having updated early. I also apologize for not writing back to all the e-mails I have received. With the insurance battle over, I had to set my mind on the road ahead. Preparing mentally and emotionally can be quite exhausting. I am thankful to all of my confidants, friends and family members for their gracious listening and probing. We had some great conversations, huh?

One of the most interesting topics that had me up till 4am last Tuesday was that of friendship. I always have a slight predicament whenever I meet someone new, more specifically someone who I know I will be interacting with more in the future. What do I tell them? I can’t hide the fact I have cancer. I don’t want to hide the fact I have cancer. But telling someone you have cancer who you just met over a dinner is not easy. It essentially is a weight. When I say weight, I mean that the person has to come to grips with life, sickness and death when he/she meets me. Those are heavy subjects that many don’t want to carry. Questions arise. “What do I do with these subjects (of life, sickness and death)? Do I continue to engage Art or solemnly move away? Do I really want to have these things on my mind?”

Once someone does accept the load and accepts the facts surrounding me, then much ground is covered. There is an amazing amount of engagement that occurs with matters of emotion and the heart. It is wonderful to get past the superficiality and facade that we all put up. The insides, the guts, that’s where a man lies.

I started to really ponder if I should be meeting new people last week. Should I try to meet new people? Should I make new friends? What happens if I die? Won’t they be hurt? Wouldn’t it be better and more loving to not give them hurt, if that were to happen? What about older friends, do I stop interacting with them so as to not heap more hurt upon them?

Well, to a certain extent I don’t (and I am sure you don’t) want to hurt anyone. This life has enough hurt, why heap anymore on someone? Why set someone up? But then I realized (after much discussion) that this is a selfish approach. Why? Well, it throws out that person’s personal choice in the whole matter. I am not giving the other person any options in letting them decide. Instead, I would be essentially controlling, manipultive and selfish. To a certain extent, it would be a power trip to make others decisions for them. That’s not very loving.

So what’s the solution? Well, it’s education. I make sure people nowadays know what they are getting into with me. They have a decision. Stay put, or enter into my life, an unpredictable adventure filled with harsh hazards, enticing oases and joyful pit stops. If people want to enter, they are free to, but it’s my job to make sure they know exactly what could happen to me. The facts remain: The mini-transplant is new, so all of the details surrounding it are “works-in-progress.” In a study at an English hospital, six patients with relapsed Hodgkin’s Disease were given this treatment. For three it worked, for three it didn’t work. Here at Sloan-Kettering, only two have been done on such patients, with outcomes still pending. Who really knows what could happen?

How does this all tie in? It took me a week to get my arms around it all, but finally the word came to me that sums all of this up. Risk. Life is a risk. More specifically love is a risk. (There must be a million quotes floating out there about this very topic, but with limited internet and library access, I’ll just have to convince you with my own words.) To put yourself out there, to love someone, essentially comes down to a risk. ìWhat happens if I drop the facade and that person sees me for who I really am? Will he/she still be my friend? What happens if I see the other person dropping their facade and I see who they really are? Could I accept them? To love is to risk getting hurt, rejected and betrayed. But to love also is the risk of missing out on the experiencing of happiness, adventure and joy (or essentially the meaning of life). Somewhere along the lines it comes back down to the same old theme, the importance of our decisions and our choices.

The Future

Today I started my chemotherapy and immuno-suppressants. I was supposed to have side effects. I sat around all morning waiting for something to hit. Nothing. Nothing. (The prayer calendar is working!) So I got up and enjoyed the day, talking, flirting (with the nurses, always a fun pastime) and reading. The rest of this week is more of the same. Next Wednesday is transplant day. (Billy, if you are out there, you best be eating well! We need strong cells! Get to work son!) After that, it’s strictly monitoring the new immune system.

There really is not much excitement in this whole procedure. No surgery, no casts, no mind-altering drugs. It boils down to someone else’s blood doing all the work, in order to kill off the bad and heal me. No action on my part will achieve anything. Now that’s a risk. It’s a risk to believe that. It’s a risk to do that. But I choose to. Let the hazards, oases and pit stops come.

Going In

February 6, 2002|

Going In

Latest word: I am going in early Monday morning to start the real battle. Thanks to all again for all of your prayers, thoughts and hard work. Look for new links about how you can help in the future.

What happened? Who pushed the button? Who pulled the trigger?

February 4, 2002|

What happened? Who pushed the button? Who pulled the trigger?

I am not exactly sure what happened or how. All I know is that on Friday afternoon I was making phone calls and organizing the next round of work to be done when I received a call on my cell phone from my Benefits contact at Goldman Sachs. Excitedly all she could say was that independently Goldman Sachs had been doing their own research and based on medical trends, the future of medicine, current thought today, such a procedure as mine should be covered by Cigna. Therefore, they had persuaded Cigna to change their policy on such procedures for all employees of Goldman Sachs and I was the first to benefit from it.

The natural question then, is did we have anything to do with that. The answer is I donít know. I was told their final judgment was made independent of my case and they had been researching this for awhile. Maybe we pushed them over the top? I donít know.

My first reaction is to say I donít care how they did it, but that they did it. But after thinking about that, I disagree. What provoked the change is important, not to me, but to others who have to go through similar struggles. Who did push the button? Can they do it again for someone else in a similar situation? Maybe we’ll find out.

Celebration Weekend

When I heard the news, I was pretty darn happy. I jumped out of my chair and pounced on web master Patrick, who happened to be in for the weekend and was taking a nap to recharge his batteries after taking the red-eye in from San Francisco. If you see Patrick in the pictures I have posted on this site, you realize he’s a big boy. Not just that, but a former college defense lineman. You don’t ever want to pounce on a former defensive lineman. Needless to say, he was ready to body slam me until the words ‘WE’RE FUNDED!’ penetrated his brain through the grogginess of the nap. Then he just hugged me. really hard. 🙂

Hearing folks reactions that night were quite amusing as well. More than once I heard, “THIS IS THE HAPPIEST DAY OF MY LIFE!” The funny things was these people were a.) married and b.) had kids. Hmmmm…

The rest of my weekend was spent with five of my boys from college, who had planned to come in this weekend to visit me in the hospital. Instead we celebrated the entire weekend goofing all around Manhattan. What a more fitting way to celebrate than with the homies in town. God’s plots are always cooler than our plots, huh?

What next?

From all indications, I will be admitted next Monday or Tuesday. As I get more information I will pass it along.

What you can do:

Help me in writing thank you notes to all of the players. Nothing will impress Goldman Sachs, Cigna, Intercorp, and Memorial Sloan Kettering more than getting 1000 thank you notes. I will have their names and addresses up shortly so that you can write them.

Help me in strategizing a long term commitment and plan for working on behalf of patients who are having issues with their insurance. Just because I got in, doesnít mean others are getting in. We need to help them too. Something to think about.

I hope you had a good celebratory weekend. Many thanks for all the hard work, dedication and prayers. Once again, I am amazed. Blessed and amazed.

Send thank you notes to the following people. Show appreciation and thanks for all of their hard work. Overwhelm them with love, baby. Overwhelm them with love.

Henry M. Paulson

Chairman and Chief Executive

Goldman Sachs & Co.

85 Broad Street, 30th floor

New York, NY 10004

Susan Carney

Benefits Vice President

Goldman Sachs & Co.

180 Maiden Lane, 24th floor

New York, NY 10038

Angela Gardiner

Goldman Sachs & Co.

180 Maiden Lane, 24th floor

New York, NY 10038

Nancy Adams-Kenny

Wellness Vice President

Goldman Sachs & Co.

180 Maiden Lane, 20th floor

New York, NY 10038

Patricia Walka

Bone Marrow Transplant Coordinator

Memorial Sloan Kettering Cancer Center

1275 York Ave.

New York, NY 10021

Margaret White, RN, BSN

Cigna Healthcare

Transplant Unit

3200 Park Lane Drive

Pittsburgh, PA 15275-1117

Fax: 412.747.7090

Thanks so much!

Celebration Dinners! Celebrate this weekend!

February 1, 2002|

Celebration Dinners! Celebrate this weekend!

Preliminary reports are in and WE GOT FUNDED!! 🙂 🙂 🙂 LOL!!! Ha ah! Look for an update on Monday with more details! Thanks for all your hard work, prayers and time! Look for more news on Monday.

More information on Mini-Transplants for your reading interests. I don’t know about you, but after reading these articles, I am pretty psyched!







Here’s who to mail and fax your complaints to (notice the new zip code, Cigna had the wrong zip code on all of their stationary! I wonder why?):

Attn: Margaret White, RN, BSN

Cigna Healthcare

Transplant Unit

3200 Park Lane Drive

Pittsburgh, PA 15275-1117

Fax: 412.747.7090


Update: The CPP is up and fully operational. A few important notes:

1. Before you do anything, please reflect, meditate, and/or pray. Make sure you fully understand not only my position (wanting to live!) and your position, but also the position of all the parties involved (hospital, my employer, insurance company, etc.). Especially remember that the doctors and managers who work for Cigna are human, and therefore deserve grace. While we all want to fight for justice and against wrongdoing, we also need to be seasoned with understanding, empathy and courtesy (see my past two letters for more on this subject).

2. If you have any questions, concerns or ideas feel free to contact me. Be aware, though, that it is taking a little longer than normal for me to respond to e-mail correspondences. I will get back to you, just give me time.

3. It is really easy to assume that ‘someone else will do the job.’ I get caught up in that thinking all the time, and for me that could literally be deadly. Unless otherwise instructed, assume that you are the only person doing the job. (This is a reminder to me, more than anybody.)

My news:

Things aren’t getting any better. Despite recent chemotherapy treatments, I am having an increase in pain and soreness in my chest and back. I spent most of yesterday and today battling a painkiller-induced hangover. This truly has been the most challenging test I have ever faced. At first it was just a mental and emotional exercise in management, vision and communication. Now the physical side has been added, further complicating the matter. I need prayer. I need help. Two years back I would have been too prideful (and immature) to ask for either. I now know better. I can do nothing without either and I humbled. Thank you in advance.

January 25, 2002


At 5:30pm we didn’t have an answer. At 6:30pm it came. The call. Dr. Perales, the Bone Marrow Transplant Specialist called with the news. Once again, Cigna denied the appeal, based upon the procedure being too “experimental.”

Why is it too “experimental?” My guess is that too few participants have done this procedure. It has good results so far, 3 out of 6 patients at Sloan-Kettering who were in similiar situations, in terms of relapsed Hodgkin’s Disease, responded positively. It is a small number though, statistically speaking. I imagine Cigna wants case numbers in triple digits.

Ways to Respond

The human/natural response to such is outrage. “Let’s get violent!” Baseball bats have been brandished and fists have been clenched. “Let’s get the bastards!” It’s what first comes out, isn’t it? “How could any company, anyone, potentially stand in the way of giving someone a chance to live if they have the means? How could they be so cheap? How could they do this to Art?” (swing, swing, smash, smash!)

Here’s the deal though. Yeah, I am unhappy. Yeah, I am a little frustrated. Yeah, I am even miffed. But you know what, I am going to get this transplant. It’s not a matter of “if”, it’s a matter of “how” and “when.” We have the resources. We do. You all have called and e-mailed. You’ve gotten me in touch with people. You’ve helped me develop “The Contingency Plan of Persuasion” (hereby, the CPP). I am not worried, not one bit frankly, and neither should you be. We are going to get this, it is just a matter of the “hows” and the “whens.”

Being “Masters of Persuasion”

I’m a lover, not a fighter…that’s what my personality profiles say. I am a collaborator, not a competitor…according to conflict style surveys. I’m a harmonizer…that’s what the the strengths test in “Now Discover Your Strengths” tells. I am a “man of persuasion”…at least that’s what my mommy says. She says I can BS anyone to do anything I want them to.

While other college kids were taking their nice fluffy liberal arts classes, I purposefully took “Negotiations” and “Getting People to Do What You Want Them to Do” (a.k.a. Education 508: Managing People- great class, Professor Dwyer is amazing). And I learned. Oh baby I learned. Competition, yelling, screaming, negativity never got anyone anywhere. Us vs. them mentality only hurts you (except for the Steeler/Patriot game on Sunday). Finding common ground and working to make the pie bigger through mutual collaboration. That’s the way to go.

In this type of situation, this what I think we need. This is a time to work with Cigna and persuade them. (I don’t mean “persuade” like the way us Italians use it. Example: “Guido, go and “persuade” the man to pay his bills on time. And don’t forget your Louisville Slugger.” “Fuggetabboutit.”) I actually mean persuade. It may take some different avenues, but eventually we will find the right one.

Here are the avenues according to the CPP:

– Public Health Advocates

– Attorneys

– Business friends

– Political friends

– Media exposure

– Doctor friends

All of the above have been contacted, but we could always use more help. Write me with suggestions.

Monday we will hear from our advisors on how to get this rolling. Look for another update then.

Final Words

Personally, if I am going down, I am going down fighting. And no one is going to fight harder or more passionately. I didn’t eat all evening till I forced myself to run to the deli and grab a fake reuben (they used turkey. weird.) at 10pm. I was too busy e-mailing, calling and planning the ways we can get this pushed through in the shortest period of time. No time to eat, I can eat all want when I am in hospital.

But, like I emphasized before, I don’t want this to be a slugfest. If anything, I want Cigna to say, “What the heck? He never slammed us once! And neither did his people. Shouldn’t he be against us?” I want them to be confused. I want massive amounts of cognitive dissonance (Education 508). I want them to see that I/we are different than any other case they’ve dealt with. Not to be cheesy, but I/we want to show understanding, compassion and love. Who knows- someone’s job could be on the line? Who knows what the doctors and case workers who are dealing with this are up against? My/our attitude can make a difference in how this plays out.

This all starts with me. Not easy. I am the fall guy in this all, I need to be the example. Two years ago, when I first was diagnosed, no way. “Let’s go crack some skulls!” would have been my mantra. Me now? I am a little more empathetic. Why? Because of what I have gone through, what I have seen, what I have experienced and most importantly the people who have been empathetic with me. I see the love I have been shown, and dang it, I want to be mirror, reflecting it back. And not just in the easy situations, but in the situations where it is hardest to. That’s the true test. I hope and pray I can live up to those standards.

Trust me. I am going to get this transplant. It’s going to take work. It’s going to take time. It’s going to take prayer. It’ll all be worth it. I know it.