Story of my life

My PET scan is all clear. Here's the before and after treatment scans to show you the difference.

You'd think I would be jumping up and down about being cancer free but I'm indifferent at best. I was told that's more normal that I'd think because we tend to prepare ourselves for the worse, so when the best case scenario comes around the news isn't AS great to hear you would think. Don't get me wrong I'm happy to be cancer free, but something about the whole situation just seems...off. Maybe that will all change on Friday when I meet with my oncologist and she gives me the plan for the next year or so.

So that's the good news, I can now say I've been cancer free for over 3 months. I use the day after my last radiation treatment has my first cancer free day. It's absolutely a relief knowing I won't have to be injected with 4 poison liquids, one of which I can literally feel going into me. And I won't have to get the terrible radiation that dried my mouth so badly it lead to an infection.

There are a few people who were happy enough for both of us to hear this news. Where my day all changes is when I had to go shooting my mouth off and ruin the moment. I'm not going to sit here and cry about it so you feel bad for me but like the title says, this is what I do. One day I'll learn to just shut up and accept the fact that once in a while I deserve something good in my life. It's just tough to do that when there is such a history of negatives and thinking I don't deserve anything different. One day.

Waiting is the hardest part

I had a PET scan Monday afternoon and I'll find out the results Wednesday morning, about 12 hours after I've written this. This is the most anxious I've been during the last 10 months because the results will tell me if I still have cancer or not. Words can't describe what it's like to wonder if you'll have to go through the same agony of treatments again. Having to wait for this news so far has been in the back of my mind for the better part of a month. Hopefully tomorrow there is much, much less to worry about

I know I suck

So I realized it's been about a month since I was here talking to you and for that I apologize. However, I also haven't had much to report since radiation ended. Seems like my taste buds are back for the most part. I ate some chocolate pudding tonight and it didn't taste like cardboard which is cool. Seemed like sweets and more specifically chocolate were the last tastes to come back. Spicy foods still hit me harder than they used to as the lining in my mouth continues to heal. My hair is another story, I haven't shaved my face in about 6 weeks and the hair on the bottom back of my head refuses to grow back. In the meantime I just get lots of haircuts and wait for my PET scan to come around in October. Cheers to things appearing to get a lil' bit better.

Today's special

I had a double cheeseburger with katsup, mustard and onion, cucumber tomato salad and a PBR for dinner. I could taste all of it. I'd call today a success.

I tried

The next time I talked to you here it was supposed to be a much happier entry about how my mouth has healed and everything is getting better. It was supposed to be that way. While my mouth is healing nicely everything is far from ok. I'm not happy and I haven't been since radiation started. Nothing is going my way, some of it cancer related and some of it isn't.

My most recent appointment I found out the next scan will be in October so I can stay the hell away from the hospital until then. I'll get check-ups every 3 months for a year, then 6 months for a year and finally 12 months until 5 years from now. Of course that's something to be excited about and I am. God knows I'm tired of being in that hospital and the routine of the standard procedure. I hate that the techs don't have to tell me to get on the scale then sit down for my blood pressure, I already know. Then I guess which room number I'll get and proceed to wait for the nurse to come see me. She'll leave and a few minutes later the doctor comes in and we talk it out. Then I check out and schedule everything for the future. You'd think the day is over by the time you get done with this but I still have 8 hours of work ahead of me.

There's the next challenge. I don't know where I fit in at my full-time job anymore. The team I thought I was a major part of has gotten along fine without me, save a few hours of overtime on their part. When I am there I'm tired, exhausted and don't have the patience to deal with anything or anyone. Then there comes the feeling that everyone around me are tired of my situation and don't want to deal with me. That leads me to feel...well...I don't even know what and all I can do is feel angry that I'm no longer part of a team I helped build over the last 3 years. Not that I was pushed out but it was able to adapt and overcome without me. I guess I should be glad that what I helped build can endure but it still sucks to be left in the dust like that.

When my 8 hours are done the only thing left to do is go home, alone, the worst part of it all. When you're left like that, all you can do is think about how much everything else sucks. Add to that you're in a room by yourself with nobody to help fix it and you're caught in a cycle that never ends. Well, Xanax helps a little bit. It puts me in a situation where I look for help in something or someone that masks the trouble in the meantime, but makes things even worse in the long run. No Mom I'm not on drugs. For example a friend can come visit  but as soon as they leave, I'm left feeling hopeless and alone again. The problem is sometimes I wish people would want to help but they wouldn't know there's a problem unless I tell them. I'm not gonna do that because I don't want to burden anyone with a problem that's eventually going to fix itself. No this isn't a backward ass way of me asking for help. If anything It's my typing out my thoughts so I can re-read it 10 times and try to make sense of my own head. If you're able to make sense of it as well, more power to your and lemme know how you're able to break it down. I was in therapy for 6 months and in that time we were able to get to one minor conclusion so I'll accept any hypothesis at this point

I don't know if I can wrap this all up nicely with a bow by saying "cancer sucks" cause it does but I think there's a deeper issue somewhere in there I need to uncover. When I'm at a race track with a beer in my hand and that's not enough to keep me away from the prescription mood altering drugs, well then I know there's a problem for sure. Cancer just adds more fuel to the fire and makes it all the more difficult to figure out. I need to grow up and get over these stupid issues but even months and months of therapy didn't really get me anywhere so I'm trying to figure out what's next. If you have any ideas let me know. Coozy...out!

...and another one and another one...

My week slowly went downhill. The side effects from radiation caused my mouth break out in open sores leaving me unable to eat much. Think of how much a canker sore sucks and how bad it would be if one went from corner to corner in your mouth across your bottom lip, it sucks. One thing you should be able to do as an adult is feed yourself so when it takes a half hour to eat a bowl of soup I'm left feeling helpless. My jaw hurts less in the last couple days so I can eat more solid foods now but it's still slow.

Two things saved my shitty mood, one was hanging out with Cassie Saturday afternoon and Sunday Mom, Mike and Bridget made the drive from Syracuse for the Corn Hill Art Festival. It rained most of the time they were hear but I was still so happy to see them. It always means a lot when family and friends drive out to see me. I make the trip so often because that's where the family and friends all live but to have them make the effort means the world.

I'm taking a couple days off from work this week. I'm physically able to do my job but I feel like the infection in my mouth would do well with me not straining my body at all. Hopefully by Thursday it will heal up enough that I can go to Quaker Steak and Lube for all you can eat boneless wings night. I planned it with the guys at work and I'm really looking forward to it.

I want to say thank you to whomever reads this and has visited me, called, sent a card, email or even a text to check up on me. I love knowing people are thinking about me and they care enough to ask.

+1/-1

Bad news first, my hair is falling out in clumps so I'm going to get is shaved again. The good news is I ate some salad today. Why is this a big deal? It's the most solid food I've eaten in the past week if you don't count overcooked pasta. Maybe tomorrow I'll try a chunky soup if I'm feelin' squirrely.

Warped Tour yesterday was AWESOME! So glad I went because I was able to finally see Crown The Empire (who were amazing) and I got to meet Beebs from Beebs and Her Money Makers. I found out about her band from watching a show that documents the life of the Warped Tour set-up crew and a few bands on tour. Cassie and I watched the show together and we fell in love with Beebs because she's just so cute an awesome. Without looking for sympathy or anything like that I told her I'd finished radiation the day before and she sounded genuinely happy to hear that, immediately throwing her arms around me for a big hug. There are some good people in the world, I'm starting to see that more and more these days.

Oh what a relief it is

Today was the last of my 10 radiation treatments, that's the good news. The bad...my mouth and throat have been DESTROYED! Radiation to the neck really does a number on everything else, including my energy level. I put myself on a liquid/soft diet and for 5 days I've been eating soup, mashed potatoes, over cooked pasta and I've been hungry ever since. It's going to take some time to heal but at least I have about a month before there are any more tests or scans. It gives me a chance to feel normal again. They'll give it about 4 weeks before I go for another PET scan and that will show what kind of affect the treatments had on the tumors. Tomorrow I'm headed to Warped Tour for the first time in 7 years, hopefully I have enough energy to keep up with all the kids. The next 4 weekends look promising as well with different events planned with friends and family. It's going to be nice to live what seems like a regular cancer free life for a while. Cheers!

I only have 4 senses

After the first week of radiation I was left with a limited sense of taste. That's normal seeing as we're pumping all kindsa weird stuff at my neck. As a result I tend to use more hot sauce than I used to in an effort to try and add more flavor. In reality all I end up doing is burning my mouth out to the point that my eyes well up. No bueno. As of this publication I only have 3 more courses of radiation left, hazzah!

Sorry 4 tha wait

I think I started using this as a way to vent my frustrations with all the crap I was dealing with. The biggest issue I had a hard time with, was not knowing what was going on with my lung. That led to chemo being pushed back and never really knowing when I might be done. I think the fact that i don't write here as much means I might be having an easier time with this deal.

A lot has happened in the past 2 weeks or so. I had a birthday, started working at the baseballs games again, went to a wedding and got scheduled for radiation. One thing didn't write about when it happened was my trip to Montage Music Hall to see Hit The Lights. I was front an center for their set singing my lungs out. After the show I talked to Nick, the lead singer. He either recognized me from past shows or the giant in the front of the crowd singing along really stands out that much. Without looking for sympathy or pity I told him I rescheduled chemo to be there tonight. He asked me to keep him updated as I finish all my treatments and we occasionally email back and forth. I'm still a little kid in that I hold musicians I respect up on a pedestal, so the fact that he asked me to keep in touch blows my mind.

My birthday was a (Borat voice) GREAT SUCCESS! Although I wasn't feeling top notch I still went out to bet on the ponies. My boy Kevin surprised me with a trip up here to see me. It was great to hang out with him an Paige together. I also had my triumphant return to the TV crew for the Red Wings and it feels good to control a camera again. My friend and co-worker Nate got married this weekend and he hired me to shoot the wedding. It was my first wedding with Top Shelf Productions and I'm so grateful for the opportunity to show off my skills. Oh yeah, and I have 12 appointments for radiation! I'm finally starting to see the finish line...maybe so life isn't all that bad. I made it through 35 hours at my full time job with a 9.5 hour day, this week I'm shooting for my first 40 hour week in 2 month. Like I said, you need goals even if they are small.

I'm going to try and share my of my happy news and good things in life as they happen cause nobody wants to read 3 paragraphs of self loathing. Thanks for playing along so far.

One more positive

So before I get all emo and complain about how crappy I feel after chemo I thought I'd let you know how awesome of a time I had recently. For about a week and a half I didn't feel sick and it was awesome. Last week  worked 30+ hours, the most I've done in over a month and a half. It was almost like I was getting back to a normal life.

A couple weeks ago I was was sitting on the couch Saturday afternoon thinking about how bored I was and said screw it, I'm going to Syracuse next weekend. I planned it out just right that I got to see a lot of my favorite people, watch hockey, eat Brooklyn Pickle and go to the races for the first time this season.

As I sit here writing this with an IV in my arm getting what should be my final chemo, I'm trying to stay positive and remind myself that it will get easier from here. There will be a small setback as my body processes the chemo out over the next few days but the goal is to be healthy enough for a trip to Fingerlakes Racetrack on Saturday for my birthday. It's always fun to throw some money around and yell at the horses to run faster, hopefully I can make it.

3 out of 5

I said the other day my goal was to work 40 hours this week and it was lookin pretty good until I didn't sleep much Wednesday night. When 8am came around the first thing I said to boss was 'I will be working but not the whole day so let's figure out what's best". We decided on a 2-6 shift for optimum productivity. Now that I struggled through those 4 hours it will be interesting to see what I can do Friday. The other side of Friday...a weekend in Syracuse with most of my favorite 315ers. I'll get back to you next week with a full report on how it went.

Back in the old iron lung...

I went to work at 9am today and worked a full 8 hours. That's the most I've worked in one shot being only 6 days out from chemo and the goal is to work a whole 40 hour week. I looked back at my time sheets and I haven't done that since the week of March 23rd so here's things hopefully getting back to normal. While I do feel a little tired and enjoyed a solid nap as soon as I got home, I think I can actually pull this off. I'm also looking forward to a my first trip to a racetrack this season, even if I do have to wear a mask all night.

Ups and Downs

Felt like I was on a roller coaster again for the past week. I was finally able to get over a cold that sent me to the emergency room the week before, some of my best friends came to visit for the day, I had chemo again, I ALMOST threw up at work, met with the radiologist and I saw a comedian I've been wanted to see for a few years now.

Paige and Danielle's visit last weekend was the best thing that could have happened to me. They got in middle afternoon, we went to the Lilac Festival and bombed around there for a couple hours then went out to dinner. During dinner we decided we wanted to go to the Rochester Knighthawks lacrosse game. If you've never been to an indoor lax game I would HIGHLY recommend it. It's a very fast paced action packed violent game and I loved every second of it. Throughout the day Danielle kept saying how much she liked Rochester which made me feel awesome cause I'm kinda fond of this city myself.

A couple days ago I got to see Josh Blue at The Comedy Club, he's a stand-up comic with Cerebral Palsy who I caught on Comedy Central a few years ago. Josh uses his disability a lot in his act and I think it's hilarious. His set was top notch and well worth $12, plus I got to take a picture with him afterwards.

My appointment with the radiologist went well, though he is a strange little man. I'll be starting radiation a few weeks after my last chemo which is June 4. Side effects should be minimal because Hodgkins Lymphoma patients normally get a lower dose than other cancers AND mine is not very aggressive so I get the low end for HL. Can't wait for this to just be done and behind me because the headaches and nausea from chemo are starting to get old really fast. I don't know how other people can put up with it 8 or 10 times, I've only had 3 and I'm totes over it. Nobody said cancer would be fun but come on this is getting ridiculous.

I still have a TON of team coozy merch if you're in the market for that kinda thing. I also set up accounts on ebay, etsy and fiverr to try and offload some of the koozies. Next week my goal is to work 25+ hours, something I haven't done in well over a month. If I lay low this weekend and save my energy I think I might be able to pull it off, Like I've said before it's always good to have goals and things to look forward to.

Random update

I know it's been a while but I've felt just plain crappy for the last week and nobody wants to sit around and read about me complaining all day. I came down with a cold last week and the damn thing won't seem to go away. On top of that I can't find the right mix of drugs to make my stomach feel better. Hopefully I can straighten it all out before chemo next week...hopefully. I did get to enjoy some quality time with Cassie this week since she had about 5 days off in a row so that was nice. I have a bunch of #teamcoozy merch left over so if you're in the market for can koozies, stickers, buttons or ribbons let me know. Cheers to a weekend that's going to be a lot cooler (literally the temp will be a lot lower) than this past week has been.

Benefit and Chemo

3 days ago was the benefit my dad organized. It was so great to see all those people, about 250 total. Gotta give a a huge shout out to everyone who helped out. It was nice to see so many people care and wanted to be a part of it. Everyone's generosity was overwhelming and after this I don't think I'll have to worry about too many medical bills.

Yesterday was my second round of chemo. It went smoothly and today I'm feeling minimal side effects, hopefully that continues. Later this afternoon I'm going to Best Buy so I can FINALLY get a new audio deck installed and my sub woofers hooked up again. You're going to hear me coming from a mile away. Hope you're having as good of a day as me!

Go time

I had a hard time falling asleep last night. Ya know how you can't sleep when you know you're leaving for vacation the next day? That was me staring at the ceiling. I don't know if I've ever been so excited to go back to Syracuse. In the afternoon there's a group of us going out to watch the Bruins game. Tonight there's another group getting together for poker that reminds me of 10+ years ago, let the cards and bullshit fly. And of course tomorrow is the benefit. All I've heard from other people the last few days is "I'm going and I'm excited". Then I hear about friends of friends of friends that wanna go, Sunday is going to be amazing! I'm still in bed thinking of what I have to do before I go and I think I have a game plan locked down. Next update is coming Sunday or Monday and I'll tell you all about how much fun I had this weekend.

♫ It's just another day ♫

I'll give you 3 points and a free hug if you can name the song and artist above.

I had a laid back day working from home for a few hours filling greeting card orders for CatPrint. It's awesome that Becca let's me bring supplies home so I can work comfortably from my couch and I don't feel rushed to get it all done in one sitting. I took a break in the afternoon to have lunch with my old man and his fiance at my favorite diner, Mark's Texas Hots after they flew in from Florida. They were happy cause it's good an cheap, $25 for 3 people to eat lunch. We caught up on life, our illnesses and the benefit on Sunday. Oh yeah, have you heard there's something going on Sunday?

The more we talked about it the more excited I was getting. When he first told me about it months ago I was all like "yeah ok". Now that it's days away and I realized how much fun it's going to be I'm starting to get pumped. It's going to be a GREAT opportunity for me to see so many people I like and forget for a day that I'm sick. That's all assuming I don't over do it AND people don't treat me like I'm sick. As long as we stick to that plan everything should be OK.

When I checked my mail this afternoon there was a card from an old friend's girlfriend and someone I've recently started to consider one of my best friends lately. Danielle is a 6th grade teacher and her whole class signed a card for me. Earlier this week I missed a call from another friend's girlfriend, see a trend here? She said their 3 1/2 year old son wanted to say hi cause he missed me. When I asked if they've explained to him that Uncle Pat is sick this is the exact response: "Yes and no. He knows that you have to go to the hospital and the Dr but he doesn't understand much more than that. When I showed him a pic of you getting chemo he said he needed to kiss your boo boo and give you a band-aid and you would be all better". Why do people insist on making me cry?

Now it's time for a quick nap and then cheer on the Bruins as they start their second round series tonight. I've said it before, when you have cancer there are good days and there are bad. Today was a good cancer day :)

Schwag

The order for 300 F-Cancer koozies is in, $4 each. These things are BOSS! I also attached a pic of everything I currently have to sell.

A week later

A week after my first treatment all I can tell you is chemo SUCKS! Starting with the needle put in my forearm to the 4th drug burning as it went into my veins and ending with the ridiculous dizziness that comes around every time I drive or walk more than 10 feet. I know, they pumped me full of poison so I'm supposed to feel crappy but I wasn't ready for this at all.

Lemme take a sec and take you to school about chemo. It's designed to kill rapidly dividing cells which include cancer, platelets (they allow your blood to clot) and white blood cells which fight infection. Hair is also a rapidly dividng, that's why a lot of people lose their hair during chemo. So with all these cells dying off at such a rate, your body is left with close to nothing to live one. That's not to say I'm barely alive the day after chemo but it's the reason why I feel so useless and can't do much but lay on the couch.

I had an appointment Monday to talk about side effects and any changes we need to make before round 2. The nausea meds have been adjusted and one of them also helps me sleep since I've had a hard time doing that in the last week. I also learned my Dr. is leaving the hospital for a new job in July which is right around the time I'll be ending radiation. Kinda sucks because I really like him and I've trusted him from the beginning. Plus, the dude wears cowboy boots to work everyday how can you not love that? After my appointment I went to work which is what responsible people do when they have a job. It was harder than I thought because the dizziness is still hanging around. It's tough when you have to keep walking in circles and turn your head a lot. I talked to my boss and she agreed to send me home with some supplies so I could fill greeting card orders from my couch. Hopefully this works well and will allow me to get paid but also work on my own time. I feel like I can be more productive if I can work for a half hour or so and take a break, something I wouldn't feel comfortable doing if I was there.

In other news, the benefit in Syracuse is less a week away and I'm sooooo stoked to see all my family and friends in one spot. I've said before you need things in life to look forward to and what's better than seeing so many people I care about and I know care about me. AND the night before that, a bunch of us are going to Fulton Speedway. I haven't been to a weekend dirt track with my old man and brother in years. PS Mike's girlfriend Bridget was super awesome when we talked about this upcoming weekend. When it came up in a text conversation she "requests my presence for a least a night sleepover (at their apartment) because the last time was way too much fun". People who treat you like that you're gonna wanna keep them around for a while, they obviously care about you. I just hope Mike's OK with his girlfriend inviting me to a slumber party :-P.

So this week I'm just going to try and grind it out and my goal is to work 20 hours without killing myself. Wish me luck and hopefully I'll see ya Sunday. Oh yeah and we have buttons now, $1 each.