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...

Colondar -- Day 3 (first half)

Oh crap! I forgot to mention on day 2 that after dinner a cake was presented. It was Candace's birthday. (See photo at the bottom).

The next morning, I woke up late because of the heavy cake. (It was either that, or the couple of Oxycontin I took for my neck pain.) I grabbed some lunch and just kinda went from person to person chatting. As a few of us were on the lawn over-looking the lake, our services were requested in the garage. David was in the midst of his photo shoot, but was having trouble relaxing and smiling. Silly me was trying to think of something funny to say to him. But, before I could, four people had their shirts off to entertain him. So, there stood three girls in bras and Andrew (he goes bra-less). I do have photos of this, but they told us before we got there, "what happens at Lake George, stays at Lake George." (I just saw the movie, "The Hangover" and they have a takeoff of this: "What happens in Vegas, stays in Vegas. Except for herpes. That sh## will follow you everywhere.")

After the shirts came back on, I played a cancer-related song on the internet for Andrew. He liked it and said he could learn it and play it later that night. Cool! (I wish I was musical.) So, I let him do whatever it was he does to learn music.

Dinner that night was going to be all the usual suspects plus a bunch of neighbors who were helping out by offering guest rooms, kayaks, etc. for our stay. Before dinner started, we were treated to a story by Kathy. Kathy is a resident of Lake George and was diagnosed with colon cancer at age 26. (Oh yeah, I should mention...she'll be 86 next month!) http://www.youtube.com/watch?v=tTDvYqxZSSY Wow. What a lady! (I love her line at the time 6:40 in that video!)

After some picture-taking, we all gathered for dinner on the porch. It was a fantastic sunset that evening over the lake. Dinner was excellent (as usual, Tammy and Todd). While everyone was still seated, Hannah got up to talk. She was carrying some pages from Colondars past. Hannah talked a little about why they do the Colondar and then proceeded to talk about past models who have left us. She got through it, although I don't know how. I could not have and I never even knew these people. Our attention was then drawn to Troy's 15 year-old daughter standing down the hill on the dock. With bagpipes in hand, she began playing. She ended with "Amazing Grace" in honor of the Colondar models we lost. Then I lost it. (I warned you that I wasn't done crying.) David was next to me and I shared the longest man-hug of my life with him. You don't want to think this way, but the thought crossed my mind, "would I be on that list sometime?"

That's all for now. The keyboard is getting wet. I'll regroup and post part 2 of day 3 some other time.

Wow, just wow...

For the past three days I was taking a leadership class about Lewis and Clark in Harper's Ferry, WV. On my way home, I got a text from my cousin: "Dude, you are getting lots of packages. What? Are you running an internet business?" I had only ordered a t-shirt recently, so I had no idea what he was talking about. I called him and he gave me the addresses they came from...NJ, AR, NY, IL and MA. Oh, yeah...colon cancer survivors. What are they up to? I had about two hours to ponder this while driving home. The only thing I could come up with was that I was having my CAT scan tomorrow.

Sure enough, they were all "good wishes" cards, things dealing with cats, or dealing with the procedure. (Although, the one piece of literature that I'm sure Lori had a hand in is more appropriate if I was donating at a fertility clinic.)

Hannah, Sarah, and Lori were out on the town in Little Rock. (Isn't that called "Bangin' in Little Rock?") They carried a sign reading, "Go Shawn" and sent me photos of everyone out that night holding the sign...even a little league team. Why were 12 yr olds at a bar? Are there no Dairy Queens in Arkansas?

Here is a photo of some of the things. I'll leave it high resolution, so you can click on it and zoom in.

Thanks guys! (I think they will look at me funny in the waiting room with my new magazine!)

One other thing...just for you Colondar peeps...

During my leadership class, they talked about how Lewis and Clark's team bonded so well because they had to go through hardships together. I raised my hand and pointed out that you don't have to go through hardships TOGETHER to be able to bond. Going through hardships and then finding each other works just as well. I think this proves it. :'-)

Colondar -- Day 2 (2nd half)

Before I could remove my makeup, I had some more business to take care of. Sarah was our video person for the shoot and she was taping interviews with each model. It was kind of like "the confessional booth" in a reality show or on "The Office." She sat us down in the corner of her bedroom, so we could have privacy. (Too many jokes) The questions we were given weren't a surprise, as we had answered some of them in our Colondar application. It was simply a way for us to tell our story and have it online for others to view us as something other than still photographs. We are actual people who each have an amazing story. You know, it's weird. My interview was about 10 minutes long and almost a complete blur to me. I have no idea what I even talked about. I say "almost a complete blur" because when I came to the question, "how did this affect your friends and family?" I started to break down. (As I mentioned on the Day 1 blog, I wasn't done crying for the weekend.) I could not get the lump out of my throat for the rest of the interview. It really helped that every time I looked over at Sarah, she was nodding and giving a look of understanding. Sarah's job was a difficult one, but one that had to be pretty cool, too. Afterwards, I talked about my tearing up on camera and she said that almost everyone was crying in their video (If you are one of those people who made out to "Schindler's List" at the movie theater, then this probably won't affect you. Otherwise you'll be moved.) It turns out that only one person didn't get emotional during her taping. (But Jill said she was drunk.)

I dried my eyes, went to change clothes, and then headed back to the main house for lunch. It turned out that several of the models were going to take kayaks and canoes to an island in Lake George and eat some packed lunches. Because of my neck problem, I opted for the canoe. The canoe crew consisted of Lori in the front (who admitted she wasn't too strong of a paddler), Evelyn in the middle (trying not to think about her aquaphobia), and me in the back (with one side of my body having no strength.) So, we aimed for the island (and instead would have gone in circles had the kayaks not come over from time to time to guide us.)

Once on Saint Agnes Island (Agnes was my grandma's name), the seven of us shared our stories. Some people have been through some unbelievable things. I didn't do a survey, but I'm willing to bet that most of us there this week thought that most of the others had a more difficult path than he/she did. That's mathematically impossible, but you manage to get through whatever you have to. If there were things you didn't have to go through, you would have thought you weren't capable of doing them. (I hope that makes sense.) All the sagas started off sad, but most peaked with a nice moment. A couple examples: Andrew said that when he was little, his dad would take him hiking. During treatments he could not even hike up a flight of stairs. But eventually, he climbed a mountainside with his dad. His dad congratulated him with, "You're back." David has a 6 year old son and they used to wrestle. During treatments, David didn't have the strength. But eventually, they wrestled again. His son congratulated him in a way only a 6 year old could, "Daddy, I'm glad you're useful again."

We packed up the cooler, collected our trash, and went back to the "boats." As we were trying to get the canoe off the rocks, we all turned suddenly after hearing a splash to find Joe dripping from head to toe. He was standing over his kayak looking down as if to be saying "what the f*** just happened?" (Either that, or he chose a bizarre time to be baptised and bow his head in prayer.) I felt a little bad, but it was also funny. This time David paddled the canoe and I could rest. Evelyn went back to pretending we were on land. The kayak people all made it back to the house in no time. We arrived about 17 hours later (with only one person rowing). As we were pulling up to the dock, time slowed down. I witnessed Joe and Andrew jumping in slow motion from the dock on either side of our canoe. I knew the splash (or tsunami) was coming, but I could not turn my neck to look away. Jeans, shoes, camera, and neck brace were all soaked. Evelyn took the brunt of it, too. She's going to get even, though. I think she is going to air some choice photos of Joe and Andrew on her TV show in Boston http://www.bostonlatinotv.com/aboutus.html.

Back at the house, while I was toweling off, I ran into Mark who was grabbing a beer. Remember how I said his hair was neatly combed? Well, apparently, it only stays combed for a short while. He gets like a mad scientist as she shoots...hair everywhere!

After a nap (the narcotics were hitting me), dinner was soon upon us. Todd and Tammy go all out preparing every meal. (Todd never took off his Flamenco dancer apron that he name Francesca.) Pasta and lasagna, garlic bread, salads, fruits, all kinds of cakes and pies. It was all laid out on the dining room table and everyone could take as much as they wanted (provided they saved room for drinking later in the evening.) Outside on the porch, while we ate, some decided to tell some funny stories. Krista is married to a colorectal surgeon, so she has stories, let me tell you. I won't get into all of them, but can I just say...that place where the sun doesn't shine? Well, some guy apparently didn't like darkness and thought to use a lava lamp to brighten up the place! Simon told a different type of story...I'll just leave it at that. Then Todd had an announcement. Each page of the Colondar has a sponsor ($6000 to sponsor a month). Well, he had the idea to get the past models to purchase a page since the economy is making it difficult to find sponsors. He announced that $3500 was pledged so far by past models. Within 10 minutes (probably more like five minutes), we told Molly and Todd that it was now at $4700 as all of us were in for $100 each. We just all knew that other people deserve to have this same experience.

At Lake George the cell phone reception and internet access was spotty and even non-existent for some. (We were living like the Amish for a few days. I bet they had a barn-raising while I was napping.) So, while Todd churned some butter for the next day's meals, a few people were desperately trying to connect to the internet. Finally, Troy yelled from the garage, "I got it!" Everyone hustled to the garage to watch Dom. Dom's middle daughter was about to drive with the rest of his family to her high school graduation in California. So, we all improvised a graduation song (to the tune of happy birthday) for her. It was funny when we came to the part where we sang "dear so-n-so" because none of us knew her name! I knew Dom had to be torn about where to be that day, so I asked him afterwards. When he heard the date for the Colondar shoot, he told his family he was cancelling. His daughter said, "the hell you are." (Actually, I lie...I'm sure she doesn't swear.) But, she told him that this was his thing and he HAD to do it. It was her idea to get him involved in it. During the video conference, you could just see how proud they were of each other. It was really special to see.

A short while later, I found myself on the wrap-around porch with some of the others -- as well as mosquitoes the size of dinosaurs! Andrew is the lead singer in a rock band named "Big Nixon" and he brought is guitar with him to the lake. He played a few songs and Sam (you may remember her from the chest-shaving adventures) joined in for a duet to an Indigo Girls song. I love acoustic guitar songs, so this was right up my alley.

I looked around and not enough people were accounted for on the porch. I walked into the kitchen and Todd was at the sink (where we keep him at night) and a couple were at the table chatting. But, half of the crew/models were still missing. I noticed the garage door was closed, so I opened it. For a second I thought the place was on fire...there was smoke everywhere. But it didn't smell like smoke and people weren't running around frantically (but with all the alcohol, they might not have been frantic during an actual fire.) I turned to the left and found Jill in her bra and Lori lounging on the floor swigging a bottle of champagne. (Hello! Why wasn't I notified of these goings-ons?) No, they weren't trying to pick up guys because it was closing time. Simon was on the floor giving them direction from behind his camera. I knew right away it was for his photography portfolio called "Windows." http://www.simonbiswas.com/ I could try to describe his work, but it's easier if you just go to his website. It's incredible. Well, the champagne bottle was running dry, so you know what that meant. (If you said, "get another bottle," you'd be wrong.) It was time for Lori not to be outdone. She was fully clothed and that simply wouldn't do with a buzz and a camera pointed at her. The jeans had to come off. (I'm going to take a camera on dates from now on. It might help me get the girls' clothes off.) Andrew immediately popped up and said, "I'll work the mist spray!" (conveniently located closest to the girls in their underwear.)

After the clothes came back on and the dance music that was playing throughout the shoot ended, it was time for me to grab a little dessert and head to bed. My shoulders were sore and I had to take a couple of narcotics.

Back to treatments...

I took a six-week vacation from my IV of Avastin and my Xeloda pills so I could have my surgery on my neck. Today was my first day back with Avastin. I'm pooped...errr...wrong word. I'm exhausted. I think the past week has all caught up to me. Tomorrow I start my one week on / one week off of Xeloda.

Platelet count is 104, so it's holding pretty steady.