Thursday, July 30, 2009

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?

Sunday, July 26, 2009

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.

Wednesday, July 22, 2009

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...

Tuesday, July 21, 2009

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 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'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...

Sunday, July 19, 2009

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!

Thursday, July 16, 2009

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!"

Wednesday, July 15, 2009

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.

Sunday, July 12, 2009

"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?

Friday, July 10, 2009

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!

Tuesday, July 7, 2009

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...

Monday, July 6, 2009

Chemo Theme Song...

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

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!

Sunday, July 5, 2009

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 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)!