A Poem for Shawn...

All is Well - by Henry Scott-Holland
Recited during Shawn's memorial service/celebration:

Death is nothing at all.
I have only slipped away into the next room.
I am I, and you are you.
Whatever we were to each other, that we still are.
Call me by my old familiar name,
Speak to me in the easy way which you always used.
Put no difference in your tone,
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me and if you want to, pray for me.
Let my name be ever the household word that it always was,
Let it be spoken without effect,
Without the trace of a shadow on it.
Life means all that it ever meant.
It is the same as it ever was;
There is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you,
For an interval,
Somewhere very near,
Just around the corner.
All is well.

IMPORTANT UPDATE: SHAWN'S MEMORIAL SERVICE ON MONDAY...

Due to the impending snowstorm, the memorial/celebration for Shawn has been changed.

The celebration of Shawn Felty's life is now scheduled for MONDAY, December 21st:
Visitation/Viewing from 3-5 pm
Service 5-6:00 pm
Location: Demaine Funeral Home
520 South Washington Street Alexandria, VA 22314
http://www.funeralhomesguide.com/Virginia/Alexandria/DemaineFuneralHome.html
703-549-0074

There will still be a potluck reception following the service at Shawn's house. The address will be provided at the services.

In lieu of flowers, guests may send donations to the Colon Club at http://www.colonclub.com/donate.html

Please bring a favorite Shawn photo to add to his Christmas tree that was started at the hospital.
For those flying in, the funeral home has offered a code for discounted bereavement flights. Please contact Dwayne at 571-277-6151 for the number.

Music for Shawn...

Dear Friends of Shawn,

This is a post on behalf of Shawn's neighbor Gale. We are putting together songs to be played during Shawn's memorial service on Saturday and need someone to download, or copy specific songs and burn the music to a CD. If you can download the music and burn it to a CD please contact me at this temporary... gmail address: AllItTakesIsGutsShawn@gmail.com with your name, number and email address. In the subject line put "Burn CD. "

I will send you the list of songs. This needs to be completed by Friday afternoon for the funeral home. Shawn was a huge Elton John fan - but none of us can remember which songs were his favorite - if you know, please send it to me at the above email address. If you know the names of any of Shawn's favorite songs please send them to us, too. A song was sung at Michael Jackson's funeral by Usher(?) about dying too young - if anyone knows where or what that song was please let us know. Thanks so much. Gale Nemec

Celebrate Shawn Felty...

A celebration of Shawn Felty's life will take place on Saturday, December 19th:

Visitation/Viewing from 3-5 pm

Service 5-6:00 pm

Location: Demaine Funeral Home

520 South Washington Street Alexandria, VA 22314
http://www.funeralhomesguide.com/Virginia/Alexandria/DemaineFuneralHome.html
703-549-0074

There will be a potluck reception following the service at Shawn's house.

In lieu of flowers, guests may send donations to the Colon Club at http://www.colonclub.com/donate.html

Please bring a favorite Shawn photo to add to his Christmas tree that was started at the hospital.

For those flying in, the funeral home has offered a code for discounted bereavement flights. Please contact Dwayne at 571-277-6151 for the number.

Knockin' on Heaven's Doors...

Dear Friends of Shawn,

It is with heavy hearts that we share the following:

On December 13, 2009 at 4:30 pm, Shawn Felty passed peacefully surrounded by family and close friends. He was loved by many, with nearly 100 teammates, fellow actors, colleagues, cancer survivors, cancer fighters, Colondar models and friends visiting him over the last few days. For two years he battled this disease with incredible strength and extraordinary grace and he was inspiration to all who knew him. The world lost an amazing man today, but he left behind a perfect example of perseverance, fortitude and friendship.

Memorial arrangements will be shared when plans are finalized.

Update from Shawn

[Shawn's friend posting on his behalf to keep you updated]

Hi everyone,

Shawn wanted you to know that he is currently at Georgetown University Hospital. He has been in and out of the hospital since November 30th when he had the catheter inserted (see previous post for more details). Shawn likes to receive and read your text messages, but asks that you refrain from leaving him voicemails. Also, he is not receiving email or Facebook messages. Thanks.

Take my breath away...

Actually, I'd prefer to have my breath given back. So tomorrow, I'm having a catheter implanted in my lung cavity. In the past two weeks, I had my lung drained twice (once for 1/2 a liter and again for over a full liter). I could continue going to the hospital for this, but for a couple of reasons it is better to get my on drain hooked up and do it myself.

One of the reasons is that I can do it often and be able to control my breathing better. The other reason is because when I go for a drain here and there, the doc is guessing at the route that the needle has to take from my skin, through my back, past my ribs and into the cavity. The last time when I had a liter drained, 1.5 liters remained because he hit the cavity too high to drain it completely.

This procedure will get the tube right at the bottom of my lung. They say in 60-70% of the patients, the catheter actually helps dry up the fluid and it can be removed in a few months.

It's an out-patient procedure, so I'll be home tomorrow night (and also awake for the tube being inserted in my chest. As the Beach Boys sing, "and we'll have fun, fun, fun 'til the doctor takes the catheter away." (Okay, it wasn't exactly those lyrics!)

Ice, Ice, Baby...

"Oh, we need a little xmas...right this very minute..."

I meant to post this before now, but the last week has been a mess for me. Anyhoo...Last Monday, the 16th, I attended an event in DC for cancer. It was at the Verizon Center and featured ice-skating stars and recording artists. Included were: Dorothy Hamill, Scott Hamilton, and Olivia Newton John (All three are cancer survivors.) Also there were Kristi Yamaguchi, Nancy Kerrigan, Viktor Petrenko, a few 2010 Olympic hopefuls and a couple of American Idols.

The show will be airing Thanksgiving (short notice) on Fox at 4pm or 5pm (after the football game).

Because I'm part of a colon cancer group, we got discounted seats. Instead of the normal $40-$100, I paid $2 each! Yep, $2. And...I was four rows from the ice. I guess cancer has it's perks. (Keep the discount...take the cancer from me.)

The show was SO good. At age 51, Scott Hamilton was still doing back flips. Olivia Newton John sounds exactly the same. If you get a chance, check it out tomorrow.

Hospital trip...

He had half his liver removed. Now he's had a tube inserted into his lung cavity (while awake) to drain the fluid. He lives vicariously through himself. He is the most interesting man in the world. I never drink alcohol, but when I do, I prefer Dos Equis.

Well, last weekend I was feeling a little rundown, not much of an appetite, and a headache. I made the trip to Pittsburgh to see the Panthers beat Notre Dame, but I couldn't finish my Primanti Brothers' sandwich, so the victory was missing something! I had to take a narcotic for my head after the game. The next day, I figured out that the headache was due to dehydration. I drank a few bottles of water and was okay.

Monday came and I had a fever, so I stayed home from work. It broke later in the day and I went to a cancer event that night involving skating (stay tuned for post about that night). The event was great, but on my way home, I started feeling beyond sick. I felt awful in so many ways I didn't know what was ailing. I took some narcs and went to sleep. Tuesday was more of the fever, but not as bad as Monday night, so I thought I might be recovering. Tuesday night, it started to hurt with each breath. Not good. If I wasn't better on Wednesday, I was going to the ER.

ER Time... In the ER, there weren't many people in the waiting room, but the back rooms were full. I waited 3.5 hours in the waiting room. I entered at 100.2 degrees and 3 hours later was 101.8. They got me back to a bed fairly quick after that.

Saline was pumped into me to get me hydrated and they took a chest x-ray. It showed I could have pneumonia. There was fluid in my lungs, but people with cancer in their lungs can get fluid there, too. I did a CT scan to see if I had a blood clot, too. Here is the best news of the week...no blood clot! Okay, now back to crap...

I was admitted to the hospital and pumped with saline and antibiotics (even though we didn't know if I had pneumonia). Thursday night, doctors decided to take the fluid from my lung and then test the fluid to see what it was. I asked if my visitor could stay. No, they needed it sterile. So, we began... I sat on the side of the bed and leaned over a pillow on a table in front of me. My arm was stretched over my head. At this point, the tech enters my room to get my vital signs. "Can't you do this later?" "No, I have to do it now." (What? Was she an ant? If she leaves her line, can she not find her way back? I'm having a needle jammed into my upper back. Do you think you're going to get an accurate pulse reading with a sharp instrument in me?)

She eventually left and after using ultrasound, the lung docs found a path through my body to insert the tube. They began. It started off like they were trying to pop the most painful pimple ever on my back and they kept going...until they hit rib. I guess the ultrasound lied because they had to start over. This time worked and they sucked the liquid out. 600 ML of if. It was so gross. They said "we are going to get the most out that we can. we we get near the end, the lung will start to expand/contract and you are going to cough. I went from "fine" to coughing in no time. And I couldn't stop. I thought I might cough up that lung.

The results came back from the testing of the gross stuff. It was not from pneumonia. It didn't mean it was from the cancer, but since I have cancer there, it's likely. In fact, I still don't know what it's from because nobody can tell me a definite answer. That is why I left the hospital. I layed there for a day and a half more will no one was doing anything bug giving me an oral antibiotic. I can that at home and not have people waking me ever hour to borrow blood, take my temp, listen to my heart, or reach in and rip out my stomach.

Do I feel I should have left the hospital? No. But I also knew that no one there was going to do anything for me there. There were no tests lined up. I will monitor myself at home and if I need to return to the ER, I will (but at a different hospital.) 90% of what I have seen at Georgetown is a joke. I like my oncologist and my infusion nurses, but the rest of the staffs seem not to care at all. If you have something else on top of cancer, you might as well go to the local theater and see if there is a doctor in the house.

So, my pain was cleared up via the drainage, but that was the only thing the hospital trip did for me. I know have that lovely water-retention again. My body thinks it is dehydrated and is storing water for the winter like a squirrel with nuts. My legs and abs are huge, pudgy and blobby. And maybe because of this inflated torso, I also have shortness of breath. I get winded walking stairs or anything. Then again, the shortness might be from something else, but none of the docs cared to find out.

I'm banking that when the weight drains, I'll be able to breathe. I have to drink plenty for that to happen.

Stay thirsty, my friends.

Chemo decision...

Sorry to keep you waiting on my choice of chemo drugs, but I've been lazy about blogging lately. I'm on a chemo vacation while I get ready for the next treatment. So, I've been squeezing in all kinds of things. I went to the movies four times in the past week-plus.

And now the moment you've all been waiting for. Drumroll, please. tatatatatatatata... I chose to go with the clinical trial. Here is my thought process: The other choice was a treatment I was on right after my surgeries. That kept the cancer from coming back while I was on it. But I didn't have any signs of cancer then. So, I'm not 100% sure it would shrink the tumors I have now. Also, the clinical trial is said to have a lot less side effects. Why not give myself a chance to see if it works? Because if it does, I could take it for a long time and feel normal. Live normal. Be normal. That's all I really want, anyway, when you come down to it.

What does the clinical trial entail? Well, every week I have to eat all green sprouts and bamboo chips and bathe in algae-filled water. Wait, wait, wait...that's not right. Ugh, I thought I was looking at the paperwork for the study, but it was a pamphlet on how to take care of your pet panda. Where did I pick up that literature? Chemo brain...I don't recall.

Okay, here is the study's paperwork. For one week, I will take two drugs. Then I don't take anything for the next three weeks. One drug is a chemo that is proven on brain cancer and melanoma. The other is the experimental drug. That is called a PARP inhibitor. PARP is the ability for a cell to repair itself when it's damaged at the DNA level. The theory is that the chemo will work better if the cancer cells can't repair themselves. We shall see.

I'm hopeful, worried, anxious, excited. Let's just start already. D-Day is 23 November. Here is the fun part. I have to take the pills twice a day and I can't eat or drink for two hours prior and one hour post. That is six hours a day I cannot eat or drink. For a guy trying not to lose weight every day, that stinks. And Thanksgiving is during my first week of it! I'll have to set my alarm for 1am to wake up and eat turkey and filling (It's called filling in central PA. Basically, it's bread stuffing mixed with smashed potatoes. There. I like to keep my blog educational as well as sexy and scary.)

Took the words out of my mouth...

My newest best friend I met less than two months ago. We were part of a gathering in Little Rock, AR for the "Big Dam Walk." It was a walk for colon cancer over a big damn. A bunch of past and present Colondar models were in attendance. That included Becca (http://www.colonclub.com/2008August.html). Somehow people were just drawn to her...myself included. Anyhoo...she and I were up talking at 3am last night. (A common thing for people on chemo is insomnia.) We are both stage IV colon cancer survivors and we have a bunch in common with cancer, but it has also caused us to think a lot alike.

I didn't know until last night that she kept a blog, too. I read an entry she wrote this week. I felt like I had dictated it to her. Her thoughts are exactly mine. And since she already put them into words, I would like to share: (either click the link to her blog or read the text below)

http://thecolonchronicles.blogspot.com/2009/10/life-support-in-our-social-networking.html

When you are diagnosed, you have a few choices in terms of ways in which to cope. Among those choices are things like support groups, or networking groups of other people with cancer. In our social-networking-crazed world, its also easy (if almost impossible NOT) to build a community of cancery-people online. All the myriad of websites with message boards, email groups, blogs and of course...the big bad daddy of 'em all, Facebook. Over the years, I've met people who've either been through the same things I have for colon cancer, OR have had various cancers of their own but for some reason or another, we've connected and relate to each other. Sites such as The Colon Club, Imerman Angels, and Planet Cancer to name a few, have allowed me to either reach out to, or be reached by a huge network of patients/survivors/caregivers, etc. Many of these people I keep in more regular contact with via Facebook.
I actually have my "friends lists" in my Facebook broken down into "Colon Cancer People" and "Other Cancer People" and they're both pretty lengthy.
I figured it was healthy and good to have people you can vent to, and relate to in ways you never ever could to even the most well-meaning friend or family member. But inevitably, if you have a network of cancer-folk you will also lose some of those folk. And chances are, lose them to the very thing that you yourself are fighting. No matter how close you were to a person, or how long you knew them, ANY interaction in the cancer world, even a brief one, can form an intense bond.
I've posted on here before about someone I knew and was close to, passing away from her cancer. And in the time since then (roughly a year ago) several others I've met have passed away from it as well.
As of late I've been mulling over whether having this community of cancer-folk is actually a good and healthy thing after all? I recently was in an email discussion back n forth with a handful of other colon cancer survivors (of various lengths of time) and one of them made a comment about how he was glad he was finally getting "past this cancer crap" and beginning to "move on with life". It wasn't a comment directed at me specifically, but at the group as a whole. Many in the group had cancer quite a number of years ago (8, 10, 13 etc). Just those simple comments were enough to simultaneously enrage me with jealousy, and fill me with sadness and resentment.
I would LOVE to be able to get past cancer. I would give anything to be able to move on with life. I don't see how that is ever possible for me however. I mean, yes, I can still do other things and not dwell day to day on cancer, cancer, cancer. I can try my best to not let it consume me every minute of every hour. But ultimately the fact still remains that every day, twice a day, I have to remember to take my chemo pills. And every week, for an hour or so every week, I have to truck myself up to the burbies to get an infusion at my oncologists office. The time in between all of that, I am sometimes lucky to be able to distract myself and not think about my ultimate demise, or perhaps any of the MANY ramifications that come about from having cancer, or being on treatment. Although, successful in that as I may be, I can easily log into facebook or even just check my email and instantly be reminded about it in someway. Some friend will post about how a scan has come back clear! Or another will send a link to an awesome organization we cancery-people should know about. Or maybe there's a fundraiser, young adult cancer-mixer, or a walk/run for awareness we should support. Or...and these are the "or's" you begin to dread: You randomly happen upon a friends profile page in passing only to realize from the comments posted that a person who, not more than a week prior, you were reading about them celebrating a 27th birthday...or who that VERY day you had just addressed a birthday card to send to her, belated of course...apparently just passed away the day before. I don't know whats more sad, the fact that someone you know just died way too young and for not a good enough reason...or the fact that you find out on a website...or the fact that its not all that uncommon of an thing.
I begin to think about how if I didn't know all these people...all these wonderful, amazing, remarkable, hilarious, strong, intelligent, accomplished, loving, kind people...that I wouldn't have nearly as much sadness and sorrow. To be fair, with or without knowing them, I have my fair share of it. But with knowing all of these new friends, I've expanded the potential for grief many times over. So is that good for your psyche? Is it healthy and healing to have to continuously face the end result to things in which you yourself are facing? In the same respect if I ignored all these new friends. If i disassociated myself from all the organizations I've connected to that do so much towards cancer-support...is that any healthier? Would denial be any better of a way to cope? Common knowledge would lead me to think no. But I would be remiss if I did not admit that I don't always believe common knowledge knows what the hell it's talking about!! Of course, ultimately, there isn't a right or wrong answer. However, I'd love to hear others thoughts on this matter.

What to wear for Halloween...

Well, I got the results of my CT scan yesterday. It wasn't the shrinkage I was hoping for. Instead the tumors have grown...just slightly, but still. Also, there are a couple more. None of this is great news. But it's not a disaster. I have options.

One of the options is a clinical trial. This particular trial doesn't have any data to go by other than it worked in testing on animals, and they figured out the dosage needed. So I'd be stage three of the trial. The good news is that this combo of drugs doesn't seem to have any side effects. And I'd only do it for two months and then we would scan. If it isn't working, I could try the next option.

Another option I have is the drug treatment I was on after my surgeries. That "seemed" to work, but who really knows. The surgery removed the tumors and the chemo simply kept it from coming back for a year. But were things just starting to grow from nothing while I was on it?

So which do I choose? I wanted my biggest decision this week to be my Halloween costume, but instead I have to choose a drug that might work and save my life. I can't wait until the day when "What should I have for lunch?" is back in my thoughts.

I'm still here, so "We have one more game!"

Colondar sales...

I gotta say that I think being on chemo is a great marketing idea! My goal is to sell 300 Colondars and I'm at 220, now. But, now is the tougher sell. Most people I know who want one have already bought one. If you are one of those people who want one, but haven't told me...then let me know! Eighty to go!!!

The money goes for a couple of things...colon cancer awareness and also to support the next Colondar. Being part of the Colondar has helped me SO much. Three weeks after meeting all these people who have been in my situation, I was diagnosed with my recurrence. I can't tell you how much that has helped me. So, I'm asking you to help me help someone else. If you are looking for a holiday gift, Colondars are great!

Kind words...

I get very nice email notes from time to time. I thought I'd share a couple I got this week. Obviously, they made me cry. I cry at Campbell's soup commercials, for crying out loud!

Hey, I got my calendar and visited your blog. I was really charmed, moved, entertained, saddened, inspired, etc. by all you write and have written about your experience. You really are such a gift to the earth. I mean that. People with your fortitude and strength of character are rare. GO, FIGHT, WIN!!!

Now you are not only our hero but our celebrity too. Its a cool Colondar and I will be showing it to my doctor. You keep up the good work, we are in it with you. We tell all of our friends about your strength and resolve, your positive attitude. Guess you're just one special Dude. We are proud of you.

Worrisome things...

There are a few things I've noticed lately. One is that my hair is growing back on my head. Another is that the rash is getting better. Both of these things worry me. If the chemo is not causing my hair to fall out and it's not causing a rash, then is it working on the cancer?!? I have a CT scan on 26 October to find out.

On the other hand (or leg), my leg hair is falling out. I'm bald on my knees, thighs and calves. The rest of the legs are hairy. I feel like the GEICO caveman. Well, I guess any, old caveman. I'm just picturing one wearing modern clothes.

Either the open pours from the hair loss or the dry skin from the one chemo drug is causing pain. It feels like sunburn with every step, as my pants/jeans rub against my legs. That's a boat-load of joy!

I'm not normal...

My doctor said that I'm not normal. (Frankly, I'm surprised no medical expert has said that in the previous 39 years.) He didn't say it in so many words. You see, I had my routine oncology visit and while we were talking, he had this puzzled look and asked, "did you SHAVE your head?" "Yeah." "Weird. None of my other patients on (my chemo) have ANY hair."

Actually, in the past two weeks I've notice my hair seems to be coming back. And it's black! Watch...it'll be curly and I'll have an afro. If so, I'm going to grow it high and do a "Kid and Play" haircut!

The doctor went on with our typical questions. "So, how much Imodium are you taking?" "None." "Really?" So, I have Crohn's Disease and colon cancer, plus I'm on chemo and I don't have excessive diarrhea any more. I can vouch that I'm a weirdo! Well, maybe this is deceiving. I've had Crohn's for 20 years and diarrhea was the norm. So, what most people consider a problem while on chemo, I might be used to. Who knows.

One side effect I am starting to get...extremely dry skin (which leads to that rash). But lately it's been dry arm. The skin hurts to touch around my triceps...feels like sunburn. And the skin around my elbows is turning into "old man skin" as my cousin says. I'm wrinkly! So weird. Yes, I'm a freak! :-)

The tide turned tonight...

Over the weekend, I ventured to Raleigh, NC for the Pitt/NC State football game. I stayed with a friend of mine and also about 10 people from DC made the trip. So, I got to hang out with everyone. It was a lot of fun despite the rain throughout the entire game and the fact that Pitt had a big lead, but ended up losing. When I came home, I worked Monday and Tuesday. Monday night I went to see the movie, "Cloudy with a Chance of Meatballs." I laughed a lot! Tonight I played softball along the Potomac River and was shivering in the cold wind.

So, I dealt with rain, meatballs, and wind all in the past few days. But, I loved every minute of it.

Tonight after softball, I made my ordinary Tuesday night trip to the grocery store to pick up my chemo staples (bland, soft food that is high in calories). While carting down the aisle, I lost it. The tears just kept coming. As you have read, I cry often. But tonight was different. This cry was because I don't want to head to chemo tomorrow. I have felt so good the past few days and now it has to end -- as it does every two weeks.

I normally try not to think about it at all and just show up at the infusion center pretending to be naive about what will occur (if that makes any sense). But it got the best of me tonight. Even as I type this, my eyes are soggy. It just sucks only feeling good for eight out of every 14 days.

They'rrrrrre Heeeee-eerrrre...

Remember that line from the little girl in "Poltergeist?" (Trivia: She died of Crohn's Disease.)

Anywho...in the past five days, I've had old friends come to town from Philadelphia, Atlanta, Jersey City, and Berlin! I had the chance to spend time with three of the four (just too tired to squeeze everyone in...sorry, you-know-who.) Three just happened to be working in DC this week. Why did they all pick a week I was dead from chemo??? :-)

And now I want to return the favor and visit each of them! I see trips to Independence Hall, The Varsity, Madison Square Garden, and a concentration camp in my future. All four of those things are related to two of my favorite subjects...college sports and history. Sure the last one sounds morbid, but as you know, I cry all the time anyway, right?

What am I thinking?

Do you wonder about that? Well, today was my long chemo day at the hospital. I woke up at 6:30am to leave by 7am for my 7:30am appointment. The first think that happens is that the nurse "accesses my port." In English, she sticks a needle into my surgically implanted device in my upper chest. We count to three together so I can take a deep breath. It's not that it hurts THAT much, but nobody wants a needle jammed into their breast.

She draws blood and then I wait and wait for the blood test results to see if I can even have chemo today based on my blood counts. When I was on chemo last year, I would just lay in the bed and wait. I no longer do that. I take the stairs down 4 flights to the donut shop. (I hate elevators and I need the calories...they work against each other, i know.) Then I talk to other patients. This go-around, I'm trying to remain more normal than before.

I felt bad today. One guy (maybe around 30-35) was in a chemo bed and it was his first time. He was holding his significant other's hand and his mom was there, too. I could tell he was scared. I thought about talking to him, but they drew their privacy curtain. If I see him again, I have to say hi.

The blood tests came back and I was on the low side, but still cleared for chemo. The pre-meds are first. Two Tylenol and then IV Benedryl. Talk about loopy! It's a great drunk feeling. (I'd like to say without the hangover, but I'd take a hangover over my next few days any time!)

Then the chemo starts. I'm asleep for most of it. I have to wake up to pee every so often. And when I do, my clothes are wet. It makes me sweat. And it's not like I get to shower to clean up...I take home the IV pump for 46 hours and I can't shower while that is still connected. Also, another cool effect of the drugs I get is that my calf muscles start to spasm. They actually look like aliens are trying to find their way out of my legs. It's so gross!

Later, at home (in other words, now)...I feel just plain weird. I have to keep food in my mouth most of the time or I know I'll puke. But the trick is finding the right foods because a lot of different things will make me puke. It's not easy.

I would love to be in the movie "Click" with Adam Sandler. I would fast forward the remote control 4 days and be back to almost normal. The chemo effects always linger until you completely stop the drugs, but after 4 or 5 days, they aren't so bad. So, sometimes I sleep because I'm worn out. Other times I sleep just to pass the time and not realize that I feel like complete crap.

I also try to do things to get my mind off of it. For instance, on Saturday morning, I'll try to meet up with my running group and run/walk. Also, tomorrow, I'll go to keep score for my one softball team. That takes my mind off everything. Sometimes, that is all you can do.

I like to think that I am doing everything I can. I received a note from my sister, Shannon, today. I'd like to share because it made me cry:

Do you remember when you said you liked the song, "I Hope You Dance" by Lee Ann Womack? There is a line, "When you get the choice to sit it out or dance, I hope you dance." Dear brother, you are dancing.

Someone in the know...

I was at the infusion center today for chemo. I overheard a girl talking about how her cancer is back as of this month. Based on the drugs she was taking, I knew it was colon cancer, so I introduced myself and started talking.

We both had stage IV colon cancer. And now we both have mets (it spread) to the liver and lungs. I told her, "stay right there. I want to show you something."

When I came back, she immediately said, "Oh you have a Colondar!"

"You've heard of it?"

"Of course. I'm on Colon Talk all the time!"

"Well, I'm in it!"

She looked at my page and said, "yes! I read your bio online and watched your video. I was about to order one, but I'll get one from you."

Does one person knowing of me make me famous? :-)

"Ditto"

I woke up this morning and read my Facebook page. It was littered with quotes from Ghost and Dirty Dancing, so I knew right away what had happened. I'm sorry to hear about Patrick Swayze. Pancreatic cancer is one of the worst you can get. There are no symptoms, so usually when it's found, it's too late. But Swayze kept acting until the end. Gotta do what you want to do!

Also, I'll leave you with a light-hearted note... My debit card expired, so they sent me a new one. I cut up the old one and when I went to use the new one, the ATM said it was expired. I cut up the new one! Damn chemo brain!

Doh!

OMG...so much has been happening this week that I totally forgot to post that I got my CT scan results last week! As you know, I had seven cancer nodules. A few got ever so slightly smaller and a few got ever so slightly bigger. The radiology report classifies this as no change or "stable disease." That is all the doc hoped for in the first two months. So, the chemo is doing what it's supposed to. In three months prior, we went from no cancer to seven nodules and in less than two months we stopped that growth of all of them. All good news.

Sure, I wanted shrinkage, but I'm greedy. But I live on. Or as I've stated in my previous softball blog (something I've kinda adopted as my new motto): "We have one more game." :-)

And I still owe you guys a blog about my trip to Little Rock for the Big Dam Walk. I'll get to that soon!

Colondar Video...

One of our models, Miss October (Evelyn Reyes), has her on TV show "Boston Latino TV." They created this video...

http://www.youtube.com/watch?v=VDs5FZsTtvk

2010 Colondar has debuted! I'm Mr. May!

I know you have been waiting all your life for it! Okay...well, probably not. But, the colon cancer awareness calendar that I'm in is now available for purchase. How do I get my hands on one, you ask? Well, there are two ways. One is to order online: http://www.colonclub.com/colondar.html

The other way (and my personal favorite) is to order one from me if you are local. That way, I can personalize it for you. Just email me and we'll figure out how to get it to you.

Online, they are $16.50. I'm asking $20 for the ones I'm selling. That's totally up to you, but it makes transactions easier and I'm donating the extra $3.50 to the Colon Club. (You can also donate more, if you like.)

You can read the stories of the models and (soon) view videos of each of us talking about our experiences: http://www.colonclub.com/2010models.html

On a personal note...Why am I selling these? Well, besides me being IN the calendar, my experience has been incredible. Colon cancer is normally an old person disease. I had joined cancer groups in DC and I was the only one with colon cancer. Then I went to the photo shoot and met 14 other people just like me. We were best friends from the instant we met. And I cannot put into words how valuable these new friends are now that I was re-diagnosed three weeks after meeting them all. Just being able to talk to people who have been there is so incredible. I want people in the future to be able to have the same experience I've had. And in order to do that, I have to help make sure the Colondar keeps going.

So, if you have the means, I'd really appreciate you helping out a tremendous organization.

It's so not fair...

In a previous blog, I had posted that despite cancer being the worst thing ever, I was thankful for the friends I had made. Not long after I had my cancer surgeries, a mutual friend introduced me to "Cherie." She wasn't in good spirits and I was asked if I could help cheer her up by showing her how well I was doing. It worked. We started hanging out...basketball games, DVDS, shopping (she was the first person to actually find clothes for me that fit.) She was also my physical therapist as I was having herniated disc issues this past spring.

Well, her cancer came back and it was more aggressive. I had not seen Cherie since my neck surgery. Today I got a text from her cell phone. It was her sister writing to tell me that Cherie passed over the weekend. I've never had a good friend die before...this isn't easy to take.

"We choose to go to the moon...

...and do the other things, not because they are easy, but because they are hard."

Okay, that was his brother's quote, but I like that one. I wanted to say something about Ted Kennedy's passing.

It was a very weird feeling to wake up early today, get to the hospital, sit down in my chemo chair and turn on my personal tv to see CNN with non-stop coverage of Ted Kennedy dying from cancer. I can't even continue this blog because I don't know what I think about it. It was just a strange feeling to be getting chemo as I heard about it.

Meet me at the animal shelter?

It's time for another CAT scan. Well, not yet...Tuesday morning. I was around a cat the other night and he kept rubbing against me. He didn't say anything, so I guess he didn't see any signs of cancer. That's a good assumption, right? And he was a lot cheaper than Georgetown. He works for belly rubs. Hmmm...maybe the nurses do, too. I've never asked them.

This will be my first scan since the cancer has returned. We get to find out if the vomiting, diarrhea, hair loss, fatigue and rash are all worth it. I've had three rounds of the "hard stuff" and four rounds of the "easy drug." (Yeah, right.) Remember I told you that the rash was a sign that the chemo was working...well, we shall see. My scalp is itchy and hurts like heck. I know my head gets sore just from the hair loss. I think its because my pours are now hairless and exposed. Add to that, the rash...and it's painful. It even hurts to put my head on a pillow. But, if the cancer is shrinking, I'll deal.

The hope this time is for no change in the "nodules." This past two months was to fill up my body with chemo so the next rounds can blast things to Timbuktu. (Hopefully, not to any people in Timbuktu...just some dead land away from civilization.) As I've said in the past...shrinkage is a bonus!

Tournament -- Final Day...

I don't even know where to begin. I guess I'll start at the beginning. "Well, let's see. First the earth cooled. And then the dinosaurs came, but they got too big and fat, so they all died and they turned into oil. And then the Arabs came and they bought Mercedes Benzes." Wait, no...that's from the movie, "Airplane!"

Saturday was the last day of this softball tournament and it was also the first time my mom was ever going to see me play softball. So, I really had two separate goals for the day: one was to win the entire tournament (as the goal has been all year) and the other was to at least have her witness one win. I just wanted her to see me happy because I knew that would make her happy, too.

We arrived at the fields around 10am for our first game at 11:15am versus whoever won the game currently being played. After everyone had gathered, I asked the team if anyone would do the honors of shaving my head (because it's falling out like crazy!) Ryan and Erin volunteered and I ended up with a mohawk for the day. Not what I planned, but hey...why not??

The # 4 seed in the tournament, Florida, ended up winning the right to play Pitt. Earlier in the season, they beat us to win the division title. Ugh. Our coach's pep talk included "we have one game to win. That's all. We'll worry about the rest later." And I kinda thought that too...for my mom. The game started off back and forth for a few innings as they grabbed a 5-3 lead after 3 innings. The score remained the same until they tacked on an insurance run in the 6th. So, we had one more at-bat in the last inning and trailing by three. It wasn't looking good as we only scored three in the previous six innings combined. First batter -- base hit, next batter -- base hit, next batter -- base hit, next batter -- base hit, next batter -- base hit, next batter -- base hit (that was me), next batter -- base hit, next batter -- base hit. I kid you not. Eight straight hits to start the inning and we took an 8-6 lead. It looked like that Bugs Bunny cartoon where the Bronx Bombers got hit after hit as they rounded the bases in a conga-line. We were going crazy...I literally was hoarse for the rest of the day because of that inning. Florida had the final at-bats. But, I knew I was not going to let them get anything easily. How'd they do? Well, as the Soup Nazi would say: "No runs for you! NEXT!" What a comeback. My mom got to see us win and we were moving on in the tournament. SURVIVE and advance. Our coach smiled and told us, "we have one more game."

We then waited to find out our next opponent. It turned out to be the #1 seed, Villanova. We had just lost to them a few weeks prior, 9-1. Our team had a mental block against them and I was hoping we could fight through it. We batted first...we were out, 1, 2, 3. Then in the second inning, we had base-running errors and errors in the field and we found ourselves down 4-1 after the dust cleared in the 2nd inning. The following two innings were scoreless. We were just marching through the innings in what could be our final game. Luckily, the 5th inning arrived. We got some life in us and got some people on base and scored 4 to take the lead. As I arrived at 2nd base, the shortstop said to me, "You guys just never quit." I responded, "I can't." He just smiled...as he knew my situation. I don't think Villanova quit, either, but they couldn't manage to score again and we pulled off another comeback win, 7-4. SURVIVE and advance. Our coach smiled and told us, "we have one more game."

We had about 10 minutes to grab something to eat or use the port-a-potty or whatever before facing #3 Auburn. What the heck is up with us? We fell behind 3-1 after one inning. For some reason, other teams loved to jump out in front of us and we seemed helpless to stop it. I'm glad games last seven innings. I was comforted that we had just come back from deficits in the previous two games. And it worked that way again...we scored runs in the 3rd, 4th, and 5th innings as Auburn never scored after those three in the first inning. Our defense has to be the best in the league. I didn't mention it in my writings about the other two games, but we commit very few errors and make unbelievable plays. There were diving catches in the outfield, double-plays, diving stops by the infielders, complete splits by the firstbase girl! (Just like Geena Davis in "A League of Their Own.") Amazing stuff...you had to be there. I can't do it justice. I makes my job as the pitcher so nice! I just have to make the batters hit the ball. Anyhoo... The Auburn game was over as we won 7-3. SURVIVE and advance. Our coach smiled and told us, "we have one more game."

Next up? #8 Virginia who had sent us packing to the losers' bracket the previous weekend. How would we handle that fact? We exploded for five runs in the first inning. I was psyched! I finally had a lead to work with at the begging. Well, that didn't last long as I had my worst couple of innings of the tournament. It seemed like anything I threw they hit well. It must have gotten in my head a little, too. Virginia had a pitcher who is about the same age as Mr. Burns on "The Simpsons." I can joke about it because his jersey read "Fossil" on the back. Well, he batted and I knew he wasn't going to swing the bat. Sure enough, he didn't. But I threw three straight balls to walk him. That was so foreign to me. I walk a batter about once ever 10-15 games, I think. I still don't know what came over me there! Okay...back to the game. After two innings, we lead 8-6 because my team was hitting a groove with the bats. I got my head straight, our defense did it's thing, the bats continued and after six innings it was 13-6 in our favor. Now, give me a 7-run lead and one inning to pitch...and I'll take that every day of the week. I just threw pitches so they would hit them...they scored twice, but that wasn't nearly enough. Another win. We were still playing (four hours after the first pitch of the first game). SURVIVE and advance. Our coach smiled and told us, "we have one more game."

Well, look who we had next. #10 Maryland. The team that beat us twice last year in the tournament for our only two losses. They are traditionally one of the best teams because of all the local alumni. But, now we knew we could beat them because we came close twice last year. Our coached asked before the game "is anyone intimidated?" We all knew we were not. Our great hitting continued with three runs in the first inning. They scored twice that inning, though. We both added a run in the 2nd, none in the 3rd, and none in the 4th. After four, it was 4-3 with Pitt in the lead. This was too close for comfort. What is a cure for that? How about our biggest inning of the tournament? Okay, by this point in the day, chemo boy (me) was a little out of it. So, I cannot remember what exactly happened that inning. I know it included one of the following (the others were in other innings or other games)...either Ryan hit a bases-loaded double or Carrie did...or Brittany hit one to the fence...or John did. They all were hitting great, so I can't recall exactly. Blame the drugs. We ended up plating seven runs that inning. We added another two in the last inning to take a 10-run lead on the team everyone loves to root against. Remember what I said about the previous game and having a 7-run lead in the last inning? Well, a 10-run lead is a done-deal. I came to the mound and our coach said, "No smiling. We can't smile yet." But that's what I do! Ask anyone. If I'm pitching well, there is a smile on my face as I'm ready to release each pitch. I wasn't going to stop (but I knew what he meant.) They had the top of their batting order up. So, I knew they could score and I'd then get to the lesser hitters. Sure enough, they scored three with their big hitters. But then it was my time. No one else crossed the plate. A 13-6 win for Pitt. I have to mention the one play that is my absolute favorite of the weekend. There was a runner on first and the batter hit the ball right back to me. I immediately turned to 1st base where our firstbase girl, Erin was on the base (right where I know she always is). As I threw to first, it was fun to watch the runner saying to himself "oh crap" as he uselessly tried to get back to the base. The runners are never in time. Erin and I have turned that same play countless times and it never gets old to me! Where are we? Oh yeah...SURVIVE and advance. Our coach smiled and told us, "we have one more game."

You know where we are now? "You're in the jungle, baby." No, wait...that is Guns and Roses. We are in the championship game of the Capital Alumni Tournament. That's right...out of 70 teams. We are in the final game! Last year's tournament run (last year's blog) was amazing and we finished 3rd that year. We had just outdone "amazing." But you know what? We were about to play our 6th game in about six hours and 45 minutes. Let me run down where our lineup stood as the game was about to start:

Ryan -- twisted his ankle in an earlier game
Sam -- playing with a bad back
John -- awaiting an ambulance because of severe cramping and dehydration (he is fine today)
Mark -- playing with a sprained knee
Jake -- trying desperately to keep bandages on his knee to stop the bleeding and allow him to still play
Wayne -- cramping muscles
chemo boy (me) -- the only "healthy" male starter on the team.
One of the substitutes we put in to replace some of these guys had a fractured wrist! That should give you a clue as to how we were doing.

How was the James Madison team we were about to face? They had played two games earlier that day and had an hour(s) in between each game. They were ready to run. Not great odds. In the first inning, we each scored a run. Then nada for each team in the 2nd inning. We were hanging tough. (I'm not a New Kids fan.) Unfortunately, we were pretty much too tired to put together any type of offense. We didn't score for five straight innings. If only we could have held them silent, too. But they were just too good and too rested. JMU took an 8-1 lead before we (in our never-quit style) added a couple of runs in the last inning. Final score...8-3. Our streak had ended. But it was a hell of a run. We actually won more games than any team (including the champion) because of our route to the championship game. I mentioned our defense earlier. We played for 41 innings and in 25 of those the other team did not score.

A few years ago, the U of Pittsburgh beat Notre Dame in football on NBC tv. After the game, the quarterback said on live tv, "I'm so proud of this f***ing team." Well, our coach quoted that in the post-game speech. I was thinking the same thing he was. We have the best group of friends (who happen to be teammates). It's so great. You want to know what kind of teammates I have? The entire event had a food drive for charity. All 70 teams combined to donate 10,000 units of food. Pitt, alone, donated 1800 of those units. In doing so, we won a gift-certificate to a local bar/restaurant where we will hold our end-of-season party. It will be such a fun time...getting together and talking about how incredible our season was yet again.

As I was packing up my gear, two random girls from the Virginia team approached me and introduced themselves. "We heard your story...can we hug you?" OMG. I was a little shocked, but it was very sweet. For anyone who has been on chemo...you know hugs help a lot.

I cannot thank my team enough. You have no idea how much it helps to be laying in a chemo bed and having the past season to reflect on and the next season to look forward to. It's just helps so much. It's such motivation to get strong again. Although, next season...healthy or not, I'm told I have to keep my mohawk for good luck.

As I'm typing this, I have tears in my eyes. And I'm sure my mom does right now, too, as she is telling her friends about how great the weekend was for both her and me.

If you would like to see more photos from the day, a local free magazine covered it: "On Tap Magazine"

People read? Who knew?

Apparently, people read cancer blogs from young people. Check it out! (Although, don't become fans of those blogs and forget about me. You have to dance with the guy who brung ya!)

http://www.newsweek.com/id/209319/page/1

Tournament continued....

Sunday was going to be a hot one...97 degrees. At 9am, I headed to G-town for my shot to boost my white blood counts. This shot (Neulasta) gives me flu-like symptoms for a couple of days. I asked the nurse how soon this would take effect because I had a softball game in 2 hours. She said the softball should actually delay the reaction because I'd be running around diluting the effects. (That's some sweet answer!)

I got to the fields about an hour before our first game. I chugged a bottle of water about every half hour. I knew I had to stay hydrated to feel anything close to good. I'm not going to hold back...if you are reading this blog, you are interested in knowing what I go through and deal with. The diarrhea after my treatments is beyond severe. It's pure liquid. So, I had that obstacle to deal with. I knew I couldn't have an episode on the mound, so I made sure to go before and in-between the games. Now, try being in a port-o-potty when it's baking in the 100 degree sun. I don't know the physics, but I think that made it 450 degrees (451 would have ignited the toilet paper). So, I spent 15 minutes at a time in there sweating and needing more water. I almost had to keep the door open for the line to watch.

Back to the games... The first game was against Tufts and in the first inning, they got a couple of good hits and would have had a rally, but we had a great defensive play to gun down a guy trying to get a triple. They scored one on the play, but that was all they were meant to score the entire game. We weren't doing much better at the plate, though. I think it was the 5th inning and we were losing 1-0. I was at bat with a runner on 2nd base. Lately, I have lost strength (due to neck surgery and now chemo), so I was not hitting too well. A song from "3 Doors Down" was going through my mind as I stepped into the batter's box:

Please, for the one time
Let me be myself
So I can shine
in my own light
Let me be myself.

Sure enough, I did what I do and hit the ball blooping down the right field line for a single. We tied the game. A pinch-runner came in for me (which was a relief, I was so tired). As I got back to the bench, a player from another team (who I really admire) said to me, "you are by far my favorite player to watch out here." (That's out of about 1400 players in the tournament.) That meant a lot. The runner for me came around to score on a hit and after the inning, we led 3-1. That's how the game ended. I'm not sure if anyone pitched a shutout in this tournament, but I felt great pitching a 1-run game against a good team. We had "SURVIVEd and advanced" to the next round. (See photo at bottom)

The next game was against Virginia. They are always a good team because they have so many alums in the area. Our team started out continuing our hitting and scoring 3 runs in the 1st. I was excited. ...well, until I saw UVA start hitting the ball. They had tied the score at 3 before I could get anyone out. After two innings, we were down 8-3. Ugh. And after three innings they had 10 runs. I had a hunch what the problem was. I had talked to the pitchers who had played UVA prior to us. They told me how I "should" pitch to them. I scrapped that and went back to my way of pitching. UVA didn't score again the rest of the game. Dammit. I should have just gone with "Shawn ball" and not listened to anyone. I won't make that mistake again. Pitt didn't give up and we closed the gap to 10-8 before getting our last out. I was standing on 3rd when it happened. So, close.

I walked off the field completely drained. I don't think I could have played another inning (but I would have somehow). I rested a little and then rode home. About 6:30pm, the flu took effect. I was puking it all up. But, I made it through the games and that was all that mattered to me.

This Saturday continues the double elimination tournament with us in the loser's bracket. We need to win 5 games in a row to win the whole thing. Difficult? Yes. Impossible? I had an 11% chance of living. What do you think is my answer?

Softball Tournament -- 2009 style

As you may remember from last year, I love playing in the DC alumni tournament. Last season, five weeks after liver surgery, I helped my team finish in 3rd place out of 70 teams. Well, today was the first day of that tournament this year.

Wouldn't you know it, today and tomorrow are pretty much my worst days on my chemo two-week cycle. Normally, this weekend, I'm asleep the entire weekend. Last night, I practiced 200 pitches, came home, took a nerve pill for the jitters and slept 11 hours. I woke up this morning and went to the fields (after puking once to make me feel better).

My Pitt team was seeded #16 out of 70 teams. In the first game, we played the #48 seed, so my coach benched me. No sense wearing me out when they might need me later. My team went on to win 17-2 over U of Dayton. Next up was U of Arizona (the #17 seed). I got the starting pitching nod. I was a little worried that some weird chemo side effect would hit me in the middle of the game. I chugged as much water/Gatorade the whole day as possible. I heard that dilutes the side-effects of everything. It must have worked. I felt like I had unbelievable control the whole game. Even the couple of times I let the other guys gets hits, my teammates made some unbelievable fielding plays (Mark over the shoulder and Erin stretching to be about 8-feet tall come to mind). We won 16-3 and that put us in the Sweet Sixteen of the winners bracket starting up again tomorrow.

The last two innings of the game, I was holding in the pee like crazy (see chugging water/Gatorade comment earlier). I ran to the port-o-potty. When I cam out, our team had finished taking our team photo. :-( I missed it. But the team mom was having none of that. When she heard, she gathered everyone again and put me front and center for the photo. (I don't have it yet, or I would post it here.)

I came home a little bit after my game ended. The rest of the teams stayed at the fields enjoying the other softball games, drinking and eating, and playing games like bocci ball and corn-hole toss. But, for me, it's a night of trying to eat anything (due to mouth sores) and trying not to vomit.

Tomorrow at 9am, I will start my day with a shot at the hospital to boost my white blood counts. This shot gives me flu-like symptoms for a couple of days. My only hope is that the "flu" stays away from me until after I can pitch in my games on Sunday. All I want to do is help my team win, but it seems that it's never as easy as just that. I just hate it so much. So, I hope you'll be rooting for me tomorrow because being sick AND losing would be the worst. Being sick and winning...now that, I can tolerate.

(Sorry for any errors in spelling and grammar. I'm not feeling like re-reading this tonight.)

Am I Samson?

Okay, probably not. I mean, no one poked out my eyes after I cut my hair today. But I did have a servant, also known as a barber, shave my locks. (Although, I'm sure she wasn't Delilha's servant. Does anyone know if Delilha's servant was Korean?) Anyhoo...I HAD to have my hair cut today because it was falling out like crazy (see the photo below of my sink this morning.)

Afterwards, I pitched in my work league. In the first two innings I gave up 11 runs. What the WTF? I was worried my pitching ability was left on the cutting room floor (nice choice of words by the part-time actor). But, I settled down and shutout the other team for the next several innings. We came back and took a 13-11 lead to the bottom of the last. They scored three. Ugh. :-( But, at least I know I can still pitch...just need some hairless practice to get my balance back.

Check out the new "high and tight."

Wake up!

Yesterday, I attended a type of event that I had never been to in the past...a wake. As you may know, I am part of a running group for cancer survivors called "Cancer to 5K." Helen was a member of the team the season before I joined. By the time I joined, her Leukemia had come back, so I never got to meet her. I came close one time as I drove to Johns Hopkins to visit her. But, when I got to the hospital, I was told she was released the day before. That was the way it was for her for her until eventually she spent her last several months there.

Last month, after all the clinical trials were exhausted, she decided to go on Hospice. That was a Thursday. She passed Friday. Helen was 21.

I didn't know what to expect at a wake. It was held at an Irish Pub in Arlington where she used to hostess. The pub closed the entire place to the public just for Helen's party and there were a lot of people there. One I met flew in from London. I sat at a table with other "Cancer to 5K" team members. While we chatted, Helen's mom sat down and greeted us. She asked, "who are you?" :-) After we told her, she said that Helen loved running with the team. She would work as a hostess until 2am Friday nights and be at the runs at 8am Saturday mornings.

In the back of the pub, there were lots of photos of Helen growing up. One, in particular, stood out to me, so I asked about it. It was her giving "the bird" to the camera. I thought it odd to put that in the display. Her mom proceeded to tell us a story...

Helen would ALWAYS do that to the camera. Their refrigerator was covered in photos like that. The Friday she passed, the Hospice nurse said, "the only thing keeping her alive is the ventilator. If we turn that off, it will take about an hour for the oxygen to leave her body." (That sentence hit me hard and I was amazed at how easily her mother was telling this story.) So, they turned off the ventilator. It was over two hours later and she was still breathing. The nurse said it was due to her youth. "No," her mom replied. "It's because she never did anything she was told to do." Helen's brother started laughing, but it wasn't at the joke. He told his mom to look at Helen's hand. Helen was giving the finger. She died a couple minutes later at 1:51pm. Her mom pointed out this time because 151 was Helen's favorite shot of alcohol.

So, at the family and friends gathering at the house, they purchased a couple bottles of 151. But then realized, they didn't have any shot glasses. No worries...what they did have was PLENTY of pill cups from all the meds she had to take. So, they all did a shot to Helen out of a pill cup. :-)

Up yours, Helen!

I was looking at the calendar...

I mentioned my grandma in a recent post (the one about the turkey smell filling the house). Nine years ago on 31 July, "Nana" passed away. She was 89. I miss her a lot. We had a lot in common...both short...auburn hair...tough when we have to be...and neither learned to ride a bicycle. Go figure.

She constantly asked me when I was little (errr...young...I've always been little), "do you want something to eat? Can I make you something?" I don't know what she would do now that I don't have an appetite!

Like I said, I miss her. But, she was smart and understanding, so I think she's okay with me not wanting to see her again anytime soon...

Innn-teresting Haircut...

Well, I've been watching the sink religiously each morning and there was never more than one hair. Today there were a few. Does that mean it has begun? Ugh.

I'm such an interesting guy...I should have an interesting haircut, right?

http://www.youtube.com/watch?v=dLdKU4JCYqg

I had a dream...

Nope, it wasn't as big as Martin Luther King's dream. It just involved me.

I've been sleeping a lot the past two days and when I woke up from one nap last night, the dream was very vivid. I was at my grandma's house when I was about 10 years old. It was Thanksgiving, and the whole house smelled like turkey cooking in the oven. Why is this even relevant? Because I want that time back. All I had to do then was eat the turkey. Last night when I woke up, I had to take some anti-nausea pills as well as some steroids. Instead of wanting to eat Thanksgiving dinner, I just didn't want to throw up. I managed not to, but it's a struggle sometimes.

Sometimes, I don't stop myself from sleeping when the drugs make me really tired. That could be because it gives me an escape for a hour or so at a time.

Let's face it...

Okay, so I don't startle anyone when you see me in person. Here is the beginning of my rash. It will probably get worse...

Re-cap of round one of chemo...

Well, tomorrow is round two of chemo, so let's see what's happened during the two weeks:

The first day in the hospital was LONG. That was Wednesday and I was there from 7:30am until 5:30pm. Ugh. That first evening I had a special visitor...one of the Colondar models (Joe) was in town from Illinois. That was pretty cool to have someone over to the house to talk with who has been in my shoes. He said that I looked "great" for the first day of chemo. The next day, I had a friend stay with me all day to make sure I didn't have any super-fun (i.e. strange) reactions to the drugs. I was fine, but I mostly slept while she watched tv. It was just nice to have people there. That night, I went to watch my softball game and keep score. I even went out for food afterwards.

On Friday, I reported to the hospital to have my IV disconnected at 3:30pm. By 6:30pm, I was at the softball field ready to play. I only played about half the game. Afterwards, I was extremely jittery. So much so, that I had to go home and take some nerve pills. Of course, sitting still at the hospital that afternoon, my pulse was over 100. So, I don't know what it got up to playing softball.

On Saturday, I did my "flu shot." It's actually a shot to boost my white blood counts. But it actually GIVES me flu-like symptoms for a couple of days, so I call it my "flu shot." Isn't that just more fun than a sack of monkeys? (Shut up...you've never seen a barrel of monkeys, either, and it's my blog, so I'm saying sack.)

On Sunday, I had another visit with another special visitor. I went to lunch with a girl who was in the Colondar this current year (Trish). It was great to meet another local person who's been in my situation. The bad part about lunch was that mouth sores had begun, so it was hard to eat anything. Also, I was SO tired. I couldn't keep my eyes open. I got home and my cousin was watching golf. Perfect! I was asleep within seconds!

Monday, I got up at 6:15am and was at work by 7:30am. My co-workers commented that my eyes were half-way shut. I have no idea how I drove to work. I probably used the Force. By noon, I was "awake" and strong as a wookie. (Okay, maybe just an Ewok)

The rest of the time between treatments involved going to work six out of ten days in the pay-period and having mouth sores for about a week. I think I lost a few lbs because I couldn't eat. So, when my mouth is good, I have stuff in the food to gain it back before the sores return. I played in five more softball games (winning 3, losing 1, and 1 no-decision). And the rash...well, it's getting pretty bad. That is now the worst part of chemo for me. I only threw up once and the diarrhea was non-existent. But the rash is ugly and painful (and itchy). "Ever have a white-head on your eyeball?!?!?" (Know that movie?) No hair-loss yet...that comes with this next treatment. Happy-happy Joy-joy!!! Stay tuned...

For good measure...

Why does my hospital measure my height in inches and my weight in kilograms? I have chemo brain, so it's hard enough trying to remember if I live in the United States or Europe!

Pink socks...

After my last blog, I thought I'd follow-up with a light-hearted one. At my softball game tonight, the other pitcher was wearing pink socks. Our catcher asked him why. He said that one of their teammates was on chemo and it was in support. Our catcher thought, "What a coincidence. One of our teammates is on chemo, too." And, by the way, he's the one who just beat your team.

I can joke because I talked to him after the game and his teammate had breast cancer, but she is off chemo and has no evidence of disease. :-)

Have you seen the movie...

..."White Men Can't Jump?" Billy said to Sydney, "You would rather look good and lose than look bad and win."

I have always kept this quote in mind when I was diving for balls and coming off the field bloody and sweaty. Now, it's time for me to translate this mentality to off the playing field.

You see, my new drug (Erbitux) comes with a lovely little side-effect in 87% of the patients. That side-effect is a rash on the face/neck/scalp/torso/back. It looks exactly like acne, but it's not. Acne treatments make it worse. And a bonus is that it's painful! My back is now covered in sore, pus-filled bumps and yesterday it started to appear on my face. It's not too bad there...yet.

Have you ever had one of those pimples right on the edge of your lip where the skin starts? Those hurt like a mother... Well, I have about a half-dozen, now. My nose feels like it does when I have a cold and have been blowing it a lot and the skin is rubbed raw and cracking. My forehead is starting to feel like my nose.

I looked up some photos of cases online. Do yourself a favor and do not do that. In the articles, people were talking about how they worked night-shift so no one would see them. Trust me, some cases are worse than any acne you can imagine.

But, here is where my quote comes in... Studies have shown that the more your skin reacts to the chemo, the more it works against the cancer. So, I'd rather "look bad and win." (I just have to keep telling myself that.)

Another fun quote...this time from Seinfeld... Kramer had taken up smoking and experienced a lifetime of smoking in 72 hours:

"Look away. I'm hideous!"

Talked to my oncologist liver surgeon...

My doc from Hopkins gave me a call today to talk about my recent CT scan and my plan for treatments. He agrees with the course of action, so I'm pleased with that. He said that the new drug, Erbitux, has shown good results. (Although, there is a damn pimply-rash on my face that comes with it.) Since none of this is an exact science (they are, afterall, only "practicing" medicine), we'll continue this chemo and then do a CT scan after 4 or 6 cycles to see what has happened.

Later in the conversation, I mentioned that he was well thought of among the people at the Colondar shoot. The first thing he said about the Colondar group is that "they are a remarkable group of people." I mentioned how the people I met there have helped inspire me to continue to play softball through my treatments. He continued, "Oh, and you are another remarkable one. We can't slow you down." It's nice to be associated with that group, now. :'-) He also said he has a spot for the calendar in his office.

Btw, speaking of softball...I have not lost a game since returning from neck surgery. I'm 7-0 with one no-decision. Think I can keep that going all year???

It's a new world for me...

Two months ago, I met a girl online and did my usual confession of being on chemo. I was a little startled with her reply that she was also on chemo. She doesn't have one of the mainstream cancers (breast, colon, lung, etc.), so I cannot remember what it's called. Since she lives about an hour away, we have only met up a few times. She goes to Johns' Hopkins for her chemo embolizations to her liver.

I hadn't heard from her in over a week (which is not unusual.) Last night, I got a text from her. It turns out that during her 2nd embolization, she went into cardiac arrest (age 43). Now she is in Little Rock getting vaccinations and radiation.

Earlier in the day, I received an email about an upcoming wake for a girl (age ~22) who was in my survivor running group. She decided on Hospice and a day later passed.

It used to be that I would just "wake" up in the morning and maybe later do some "cardio" at the gym. I was ignorant to everything going on around me. Now that I have ties to it, I'm front and center to all of it. I don't want to be, but there is no choice any more.

"Puke. There's a funny word...

Can I use that?" Well, I made it from Wednesday all the way until Sunday before letting the nausea get to me. I feel a little bit better now that I released it all. Ugh. The hardest part, for me, is brushing my teeth. Sometimes the toothbrush hits a certain part of my tongue and everything is triggered. There is no stopping it once it starts. Well, all for now. I'm off to re-film a segment of a short film I did months ago. Can't rest on my vomit, right?

Almost through one round...

I'm about an hour away from having my chemo bag unhooked. So far, so good. I have not vomited at all and no diarrhea. The only things to happen so far are: weird muscle spasms, hiccups (only for minutes, not days this time), and some bad tastes in my mouth that require immediate candy or gum.

I have been napping a lot, but that also could be from having a stupid chemo bag attached to me. It doesn't make you want to get out and do stuff. But, speaking of getting out and doing stuff...I'm about to head to the hospital to disconnect this and then I'm off to PLAY in my softball game!

I don't have a theme tonight...

Most of my blogs have a theme. Maybe I'm not thinking straight. I've done a great job the past two weeks blocking out what is about to happen. I really haven't spent much time at all thinking about it. Sure, I did the preliminary stuff...getting my prescriptions, grocery shopping for "bomb shelter food" (canned/boxed goods), and lining up my network of friends to spend time with. But, for the most part, I did what made me happy.

Between the time I returned from neck surgery and the start of chemo, I pitched five games of softball and won all five. (It wasn't the best competition, but on the other hand, the opponents haven't gone through what I have the past two years.)

I'm anxious to get this thing underway and become closer to being done. I just hope the side effects are tolerable. Ugh. I plan to lift weights, continue to play softball, work (I have to or I might not get paid...but that will be another blog.) and also do things with people (which I didn't do too much of last time.

There will be three treatments between now and 7 August. The goal is to stay healthy and active during that time. After that, I have a tournament to win...

Chemo Theme Song...

Say what you want about the artist, but the lyrics are pretty good for me right now:

http://www.mtv.com/videos/miley-cyrus/348983/the-climb.jhtml

I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Colondar -- Day 4

I awoke on the last day of the Colondar shoot, but instead of showering and packing right away, I headed over to spend some time with the first wave of people due to depart for the airport. I discovered that Dom and David never slept. They stayed up all night and went for a kayak ride early in the morning. That was a pretty cool idea. The dinning room table that was constantly covered with food, still had food on it, but it wasn't the same. What once was freshly made lasagna, fajitas, or BBQ was now lonely packets of Frito-Lay snacks that most had ignored the previous days.

The morning was really calm. There was a sadness mixed with a happiness. I guess the combination of those two produce a calm. Everyone was scheduled to depart Lake George in waves to the airport. I took a stroll around the house. I walked into the living room where we all gathered the first night to get acquainted and play games. It was also the same room we gathered to hear Kathy's story, see our slide presentation, and tell our favorite moments. There was no laughter, talking, or video in the room, now...just memories.

The quiet ended quickly as Molly started a round-up in a frenzy! "Okay, everyone who is leaving first, sit down and sign this pile of thank you notes. Do NOT get out of order, so help me!" (I'm paraphrasing.) Cards were passed around for everyone who helped throughout the weekend. They were for the people who gave us the run of their homes, photographers, editors, chefs, little helpers, elves, fairies, etc...

The clock moved quickly and it was time for the first carpool to drive to the airport. Everyone gathered outside of the garage that was used for the photo shoot. Now, there was no more photography equipment or computers. It was only a home for the recycling bins.

Krista was driving the first car filled with Trish, Jill, Joe, David, and Dom. It was sad to watch everyone step into the van. We knew we wouldn't be seeing them for a while and it was so much fun to have them around! Simon jumped on the hood of the car, face down and spread eagle. He did it in jest, but we all wanted to do it for real and make the goodbyes not have to happen. The car went up the driveway, leaving behind a bunch of waving people. That was hard and that was only the first set of goodbyes. Being in the last group to depart, I'd have to do this a couple more times.

There was a little bit of time between trips, so I grabbed a shower and packed. This next round was Andrew driving Eve, Candace and Lori. Greaaaat... another set of goodbyes. One of the goodbyes that stands out to me was one I shared with Lori. She had told us the story of the extremely hard time she had being diagnosed at age 16 and being treated like an outcast by her friends. So, when I hugged her, I said, "I wish I could have given you this hug when you were 16." I think I almost made her cry. I didn't mean to...honest!

Now all that remained were my carload and the organizers who were sticking around for another day. This wasn't planned, but all the stage IV survivors were still there. Below you'll find a photo of Todd, Erika, Heidi and me each showing how many years in remission we were. I say "were" because now I have to start over. I'll never catch them, but I'm going to compete because I don't like to lose!

Finally, it was "that" time. I had to get in my car and secure my neck brace (remember that thing?) Todd and Tammy drove Eric, Heidi and me. There was constant chatter the whole ride. I dosed off for part of it. When I woke up, we were back in cell phone range and I checked my messages. I had a text from a friend who had just done a colonoscopy and it was clean as a whistle. I thought it appropriate to share that news with the car.

Once at the airport, we said goodbye to Todd and Tammy. Heidi's flight was first, so I sat at her gate with her and chatted. The boarding call came and I waited around until I could no longer see her going down the tunnel to the airplane. I walked over to Eric's gate and he wasn't there. Was his flight earlier than I had thought? I was bummed...I didn't get to say so long to him. I went to the airport sports bar and as luck would have it, Eric was there watching baseball. I hadn't missed him! He told me that he had already given away a 2009 Colondar that Molly stocked us all with before she let us leave Lake George. (Me? I was a little hesitant to hand out anything in an airport because I once had a flight delayed because someone handed out fliers. You know...the whole, "did you accept anything from someone unknown to you?")

I had a little food with Eric and then walked him to his gate. His plane boarded and there I was...at the airport alone. The last one to leave. I had a pit in my stomach. Guess what came next? If you don't know, you haven't been following my blogs. The four-day Colondar shoot was over. We all had new friends, but we would never have that same type of experience again. It was once in a lifetime. And I want other survivors to have this experience, too. So, when I advertise the Colondar in September, please help by buying one (or 30)!

Colondar -- Day 3 (second half)

Sorry for the delay in telling the story of the Colondar shoot weekend, but I had some other stuff on my mind lately. ("Jeepers, Wally," I wonder what that was.)

After dinner and the activities on the porch, we settled in the living room for a video presentation by Troy. Since everyone was gathered in one place, it was the perfect chance for Andrew to play the song I suggested and he learned earlier that day. I introduced it. "There is a song by the band, Wideawake, for the Livestrong Foundation that I thought it was appropriate for us. This is Andrew's version..." I know at least one person was crying during the song. Strangely, I was not. Go figure.

The original song can be found here:

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2662157/k.BC61/Maybe_Tonight_Maybe_Tomorrow.htm

The encore to the song was Troy's presentation on the computer. He had taken photos from each of our shoots and set them to music. Each person had a head shot and a shot that might be the one used in the Colondar. After that round of pics, we got a good laugh from other photos that showed each of us in a funny manner (complete with a humorous saying.) The music in the show could not have been more appropriate. It was a song by Nickel Creek ("When you Come Back Down") and the lyrics start with:

You gotta leave me now.
You gotta go alone.
You gotta chase a dream...
One that's all your own.

The song can be found here: http://video.aol.com/video-detail/nickel-creek-when-you-come-back-down/3840782686

The presentation played in a continuous loop. Most of us watched it over and over...either because we we in awe of how good the photos turned out of us "non-models suddenly become models" or we wanted the shoot to start all over because we didn't want it to end. I am sad just thinking about that time and knowing we had to leave each other the next day.

As the neighbors dwindled out of the house, we were left with the models and crew all sitting around. Everyone took turns telling their favorite part of their time at Lake George, NY. I went second. "I'm not sure if this is my favorite part, but it sticks out in my mind. The first day, you were all so happy that we have some stage IV survivors here that are approaching 10 years of survival. It made me think that it's not as common as I had thought. So, during the first day, I doubt anyone noticed, but I was a little depressed. The next day, I was talking with David and he said that his stage IV friend who passed away had a look that he wasn't going to make it and that I didn't have that look. I never want to have that look." As I said that, David was standing beside me and as he went to hug me, I knocked his beer out of his hand and all over Jill and the floor. Smooth. Some of the favorite moments that everyone else shared have been covered throughout my coverage of the photo shoot, so I won't repeat.

The mood was about to be lightened as we were all told to wait in the living and not leave the house. Molly, Hannah, Sara, and Krista locked themselves in a room while scheming something. I think we waited four weeks for them to come out that night, but it was worth it. The lights dimmed and we were all treated to a skit show. They reviewed the exciting parts of the weekend by making fun of everyone. In my scene, Molly had gauze taped to her neck because of my recent neck surgery. The scene that stands out to me was one re-enacting Molly carrying around her baby in the "front bib holder" (I'm not sure what it's called, but that's what us single guys with no kids call it.) Instead of carrying a baby with a bottle, she literally put Simon in it and carried him drinking a beer. Wow. Great show!

As the last of the chocolate fondu was being licked off of Lori's and Jill's faces, people started heading back to their rooms to pack and get some sleep. The adventure would end the next day.

Colondar Models...

One of the models has a blog of her own. She posted headshots of all of us. So, if you want to see better shots of "these people" I've been talking about...

http://eveonmymind.blogspot.com/2009/06/colondar-weekend.html

On the page:

Eve (MA) and Trish (MI)
Me (VA) and Lori (AR)
Joe (IL) and Jill (NJ) -- almost like Jack and Jill, but slightly different
Heidi (FL) and Eric (MN)
Dom (CA) and David (IA)
Candace (IL) and Andrew (NY)

It's ba-aack... :-(

Did you miss it? I sure did not. But some cancer has surfaced again.

I was at the Nationals/Red Sox game last night and my oncologist called. "Did I catch you at a bad time?" "I'm at the game." He paused. "The CT showed something, didn't it?" I asked. "Yes. Come in and see me tomorrow morning."

So, I was home all night not knowing what to think. Surprising, without drugs, I had the best night's sleep in weeks! I'm weird.

At the appt. today, I was with my cousin and my neighbor. The doctor walked in and said, "well, it doesn't look good. Let me show you on the computer." The computer didn't work so he had to leave the room to get a portable one. We were all just sitting there on the edge of our seats. He came back with a computer.

The CT scan showed 4 small nodules of cancer in the liver, right around where my previous liver resection was. He is going to call my oncologist liver surgeon at Johns Hopkins, who is the best there is. So, I'm happy with that.

Also, there were 3 small nodules on my lungs (2 on one lung and 1 on the other.) They are too small to do radiation treatments. I guess that is a good thing.

What's the course of action? I'm going back on chemo starting in two weeks. I will have the 5FU (48 hour pump bag I carry around), Irinotecan (makes me lose my hair) and a new drug that is an antibody. I'll get this treatment every two weeks with no definite end date. If I respond well, some of the nodules could shrink or be gone by the next scan (2 months or so). I'll keep at it until they are all gone again.

My oncologist said, "It's not good, but I said that about you twice before and you proved me wrong both times." I asked him "If you had two patients...one who had the diagnosis I had 1.5 yrs ago and one with the diagnosis, now...which is better?" "Definitely the diagnosis, now." So, that's good.

It sucks that I have to do the chemo again. I'll be fatigued, lose my hair (I HATE that), and have the usual vomiting/diarrhea bouts here and there.)

This time around, I'm not scared like last time. I know what to expect. It sucks, but I can do it. Just keep in your thoughts, "respond to the drugs quickly!"

Also...my plan is to stay more active than the last time. I want to be out with people to pass the time more easily. Plus, I have a crap-load of brand new friends from the Colondar who have been through this and I can call anytime.

Work people -- I'll be back to being at work only a few days every pay-period
Pitt people -- Dammit! I wanted to pitch in the tournament. But, I'll be there making sure you give it your all on every play.
Colondar people -- keep your phones turned on

I left the baseball game in the 5th inning last night after I heard the news. I was about one foot from the exit gate and I looked down. There was a heads up Penny. :-) Plus, check out the shirt I was wearing when I heard the news...