December 27, 2000

December 27, 2000| (taken from Message Board)

I sure miss Patrick (my webmaster)! The site is not the same, huh?

Friday I was released and my parents and I rushed to LaGuardia to catch our plane. No need to rush we discovered. Our flight to Pittsburgh, scheduled to leave at 3:40pm, didn’t actually get out till 11:30pm. Everyone at the airport was complaining and bellyaching. Me, I couldn’t have been happier. Nothing could have beat waiting for my flight, anything was better than being in the hospital. It was a busy weekend, I don’t think I got a chance to breathe. I had so many people to visit and see, so much to do, it was great.

The Quilt
Little did I know, behind my back, many of you were taking part in this quilt making deal. I couldn’t believe that no one blew it! No one blew the surprise! Not even my mom! The quilt is amazing. My aunt Joyce, who made it, thought she would get a couple pieces back and that she would have to do the rest. She ended up pulling an all nighter getting all the pieces sewed on, as there were enough pieces for a back and front! What is the quilt? Anyway, for those of you who they couldn’t reach in time to get a piece on the quilt, there are still a few empty squares to sign if you ever come to visit. I was totally shocked though, and really touched. The only thing I could think was that I have a responsibility to all these people to work my darndest to get better. It’s inspirational to see it. I was so touched. Man.

Going in…
Today I go into the hospital to start the stem cell transplant. Five straight days of chemo, then the recovery. Happy New Year! 🙂 Hey, I am ready to get it over with and to get healthy. It ended up that these lesions are of the utmost concern, but the stem cell should knock them out. I hope so.

Am I ready?
I don’t necessarily feel prepared for this battle. I haven’t had time to prepare physically (I am still way down weightwise), mentally, emotionally and spiritually. Last week kinda set me back. But that is part of this adventure, going into this not at full strength. I think in the end it will make me that much more stronger.
Last week was rough. And I realize how I didn’t help make it better at all. Yeah, I am allowed to get down, yeah I am human. But a lot of what got me down was my own selfishness. It was all about “me.” I was so focused on myself and why this had to happen to me that I missed opportunities to help others, especially during that week of Christmas. I feel somewhat ashamed. For example, my roommate really needed to be cheered up as he was going to be in the hospital during Christmas, and my dad did an awesome job. But where was I? Complaining on my butt. Just because life throws a curveball that doesn’t seem fair doesn’t give us any right to dwell on it. The next pitch is coming. Yeah, it was rough last week. But the next couple weeks are going to be rougher. Now is my time to step up, and be the light I need to be.

I am really behind with e-mails, as so many of you have e-mailed me cheerful notes trying to bring me up from last week. Thank you and I am trying my best to catch up.

More updates on the way…


Well, the new word.

December 21, 2000| (taken from Message Board)

Well, the new word.

First, thank you all for your prayers, thoughts, emails and gifts. They have sustained me during this most difficult of weeks. I have tons of emails to respond back to, so if you don’t hear from me in awhile, know that someday I will finish replying to all of them. I haven’t forgotten about you, trust me.

Seond, I have been given the OK to go home for Christmas to Ohio. Very fortunately, my parents were able to get tickets for my flights, so I will not be alone. I will be leaving Friday afternoon and returning to NYC on Monday afternoon (treatment bright and early on Tuesday afternoon).

The pain has gotten better. Not much, but manageable.

It took one last test, but the MRI with dye showed what we were looking for, the cause of the pain. It’s not the lymph nodes in my back, it is individual lesions of cancer along my verterbrae up my back. I don’t know exactly what a lesion is, but I don’t like the sound of it. I think it is like a little cut or buildup of cancer cells on the verterbrae.

Distressingly Dr. Moskowitz doesn’t know what he wants to do next because of these lesions. The stem cell is on hold. Maybe more chemo next, only he knows.

Personally, this is going into my soul, I am having rougher time not with the disease, but with the uncertainty and unexpectedness of these lesions. Just when I thought I had this thing licked. I keep on fighting and getting up, but this things keeps on kicking me down. It’s getting harder and harder to pick myself up and get up. I am running out of strength to do it. It makes me even more scared to realize that I could battle this the rest of my life, and that I will have to continue to get myself up.

I have never really thought it was appropriate to pray for a miracle. I just wanted to be healed, that’s all. I pray now for a miracle all the time. That’s what I am going to need. I fight hard, this cancer fights harder. I need a miracle to beat this thing.

I am also praying that this suffering and pain will be over by March 2001. I guess if I want to see results of prayer, I need to pray specifically. Please, God, let it be March. Let it by March. Let it be a miracle.

Have a Merry Christmas y’all. Thank God for all the blessings we’ve been given. And the most precious one of them all.

Turn for the worst

December 20, 2000|

Turn for the worst…

It wasn’t supposed to happen this way. Not at all. Instead, I am back in the hospital, in my same familiar room (1211A) with the same familiar nurses, with the same familiar pain. I wasn’t supposed to be in the hospital till next Thursday…I was supposed to be home for Christmas weekend…

It’s always the back

Last week, innocently, a little pain started growing in my lower left back. I didn’t think much of it. I hadn’t felt the pain in over a month. The chemo had shrunk the nodes that were causing the pain before. I had felt fine for such a long time. But then, as last week went on, I started taking more of my morphine to ease the pain. Unfortunately, it didn’t do much good. The pain was growing too intense.

Friday, I had a MRI done to check on this nagging back. The results came back inconclusive. No one knew what was going on. No one knew why the pain was there. Not the doctors, the neurologists, no one.

By Saturday, I could barely move out of bed and away from my heating pad. Something was the matter.

On Sunday at 9:30am, I went to wake up my roommate because of a phone call. As I gingerly walked down the hall, I felt something snap or break or crack in my lower left back. I screamed in pain and fell face first to the ground, catching myself only quick enough to roll over onto my back. My roommates heard my screams, called 911 and the next thing I know I was carted off in an ambulance to New York Presbyterian Hospital. After waiting for thee or four hours and not getting any pain relief, I was transferred to Sloan-Kettering, across the street. Still no pain relief, but at least at my familiar hospital.


Still to this day, no one knows anything. The doctors can’t figure out why my back is in such pain. No one knows what cracked or caused my sudden fall.

We are still doing the twice-a-day radiation treatments, and hopefully they will help relieve the pain, but for now, I am still in just as much pain as when I came into the hospital. The doctors still don’t know the cause. I have another MRI with contrast dye scheduled for sometime this week. Maybe that’ll show something. I am not too optimistic.


This is where I get honest. I don’t have any inspirational words or lessons learned. I don’t have anything really positive to say.

I know what I should say and how I should feel, but I don’t feel that way. Simply put, I am screaming, “God, where are you!?! I know you are there, you have been there before for me, where are you now?! Help!”

I don’t have any answers to this and I wish I did. I wish I knew why I have to go through this pain period again. I wish I knew what was going to happen to my schedule for the stem cell transplant – even that is up in the air now. My Christmas spirit has been totally quashed.

I don’t see any light in the darkness of this all. There’s nothing to guide me, nothing to show me where to go, nothing to show me how to survive from one point of the struggle to the next. It’s just dark.

Back to Reality

December 12, 2000|

Back to Reality

I had being living “normally” for the past few weeks and enjoying it. I thought it was going to last awhile, at least until my hospitalization. Then last Thursday I got a whammy – the back pain came back. I don’t know where or how, it just did. Everyday after that it got worse and worse. I started taking my pain killing morphine pills, but then those side effects (extreme drowsiness, mad constipation, loopiness) kicked in. We are hoping the radiation on that area, which I start Thursday, shrinks those bad boys and knocks off the pain. If not, then I have to deal with this until the 28th, when I get admitted into the hospital. Pain is one of those things that grows you up really quick, ya know? Especially in this situation, I know it hurts, but I also know it won’t hurt in three weeks. There’s not much I can do but suck it up, try to manage it, and move on with life – doing things! Gotta stay busy.

I also have been closely monitoring the Mario Lemieux story. Super Mario is back and will be playing for the Pittsburgh Penguins again. That is an amazing story. He’s had to fight off back pain and also beat Hodgkin’s Disease. Shoot, if Mario can do it, I can do it! I am in good company.

Better Understanding

I had a big shock occur Friday morning. My mom told me the scary news that my high school choir director had gotten into a bad accident the night before while driving to a performance. Dr. Baird was late, so the kids knew that something was wrong. Dr. Baird is never ever late. The kids did the performance accapella, and then went across the street to the Highway Patrol office (convenient!). There they were told the bad news and rushed to the hospital. The information from here gets sketchy, but she is not doing well and remains in stable condition.

I never really understood how a lot of you felt about my situation. Words of frustration and helplessness dotted some of my earlier conversations when you found out about me. I now understand, though. I have such a helpless feeling now for Dr. Baird. There’s nothing I really can do. Even those in Youngstown can’t do very much as only family can visit her right now (despite the fact that anyone who went through the Youngstown Connection can be seriously considered her family), so they are in the same boat. I feel doubly helpless, four hundred miles away. The only thing we really can do in such situations is pray for that person.

New Pages/Site

I did realize that I could do something. I could write. I had amassed a ton of e-mail addresses of friends, family and former members of the groups. So I e-mailed them out, informing them and getting some prayers in motion. In addition, I have been waiting for the right time to put up the Connection page off of my web site. Last night I cranked out the page. I still have a lot of pictures and stories to put in, but for now we have a page. Definitely take a look at it when you get a chance.

Webmaster Patrick and I also spent most of the weekend redesigning the site, as you can tell. There is now a message board. You can also e-mail me straight from the site. And the February Prayer Calendar is up and running. If you have any suggestions for the site, pass them along!

That’s all for now…please pray for Dr. Baird. Another update should be up next week about this time.

Home for Christmas…literally!

December 6, 2000|

Home for Christmas…literally!

The word was given today. I could go home to Ohio for Christmas. What a surprise that was! It actually happened yesterday when my whole plan for radiation was bumped back about three days. That then bumped back my admittance to the hospital which meant that I wouldn’t have had to spend the holiday in New York City.

I was totally sold on being here in NYC for Christmas. More importantly, the lesson I needed learn was burned in my head- the real meaning and purpose of Christmas. At first, I was really really bummed about not being able to go home to a familiar Christmas- with family, friends, good food, and presents. But someone posed to me the challenge of what Christmas was all about- and I realized that Christmas is not about any of that stuff. It’s about God coming to earth- it’s about giving, just as was given to us. So, I was fully prepared to go into the hospital, armed with a mission of somehow giving to others on that day, despite being strapped to an IV filled with cancer-killing chemicals. I would dictate the situation, not the situation dictating me.

I think, though, that I am needed at home instead, perhaps even more. Who knows who I will see that needs to learn that lesson, that person I can touch? Who knows what old friend I will run into at the mall that weekend who I can inspire? Or maybe that is my last gasp of personal encouragement before I go into the last battle of this war?

The Situation

The results of the CT Scans came back today. The CT Scan is the best test to measure the effect of the chemo, showing a 3 dimensional picture of the infected lymph nodes. The infected nodes in my right lung (the one I was most scared about), it’s gone. It’s back to normal size. Here, here. The nodes in my back are still the same size, but it is not known where they are still infected with cancer cells or scar tissue. The radiation will toast it though, and then the 5 days straight of chemo during the stem cell transplant will further eradicate it.

…And one tree-lighting ceremony

Oh yeah, I decided to trek the five blocks to see the tree-lighting ceremony at Rockefeller Center. If you ever want an experience to see how diverse America is, go to any one of these type functions in New York City. It was crazy, people everywhere. Cops, everywhere. Barricades, everywhere. The experience was quite amazing.

I ended up leaving before the actual lighting, and got home to catch it on TV. I didn’t feel it was the best thing for me to be standing for three hours, to be three blocks away and hardly see the tree. No, I didn’t see or meet any boy bands this time. Dang! J

Personal Thanks

Anyway, your prayers, calls, and e-mails, they are all working. For the node that I thought would be the most troublesome, to be toast- well I am flabbergasted. And to go home for Christmas, well that is equally flabbergasting too. And my immune system, let me tell you. Did you know I was a superhuman last week? Let me tell you.

Today, I found out a normal count for the immune system is 4- 11K/ul. Mine, it was 30,000 K/ul last week! There was no way I was catching a cold during Thanksgiving or last week! Those shots of white blood cells I was giving myself, they really work! Forget the vitamin C! Anyway, this time when I go home, I will be allowed to go out and do stuff, so I plan to see as many of you as possible.

So anyway, keep up the good work. It’s the best Christmas present I could ever (and probably will ever) receive. Look for another update next Tuesday or Wednesday.