Not Optimistic

Just wanted to release some negative energy into the blogosphere... Went out for a beer with my buddy Ramil a little while ago and I'm back home laying in bed right now in some pretty bad pain. My back is really aching big time and it's been a reliable indicator that the cancer is thriving unfortunately.

This is my off week for the pills so maybe that's the reason...

I'm pretty calm but hoping this ache goes away soon so I can get some sleep. I don't drink very often and it's crazy how one Coors Light can put such a fire in my mid back, ugh.

So, maybe I'm just writing this to soften the blow on Thursday when I get the results of my PET scan. In any event, I somewhat have a plan just in case my disease is no longer responding to the S&N and progressing. I think there's still a spot available in the RAD001 trial here at Karmanos with my last Dr. Ramchandran.

I guess I'll cross that bridge when I get to it...

Happy Birthday Nicole!

This is sorta late (but better than never) but just wanted to wish my sister Nicole a happy birthday!

We of course share the bond of brother and sister but we also share the bond of being fellow cancer survivors! She was diagnosed with a Glioma in 1990 and had a 20% chance of living for more than 2-3 years. Well, here we are 20 years later and she's still alive and relatively well I'm proud to say.

While she has her struggles like all of us cancer survivors do, I am very proud of her for her bravery and what she has to overcome on a daily basis.

So, here's to you Nicole, love ya Sis :)

P.S. The Tears for Fears song is an inside joke, ha ha Nicole!

Home Sweet Home!

Just rolled up to the D a couple hours ago, what a relief! It took me three days but it's really great to be back home.

The trip started off with a dubious bang as I was pulling out of my community in Delray into Target to return something and to get some drinks and snacks. I had my BMW hooked on the back of my CRV with a tow bar and as I pulled into the parking lot, I heard a cracking noise that didn't sound good. I paused, looked back and didn't see anything suspicious. I put the car into gear to move forward again and there was now a screaching noise, ugh... I decided to get out of the car to take a look and sure enough, the tow bar that I had affixed to the bumper of my Bimmer ripped right out of the soft aluminum and was hanging there by a thread. I was still on the incline of the parking lot and was scared the car was going to break off and roll back out to the road and take out some cars driving by. So, panicked, I looked back and sure enough a police car was pulling in behind me as I stood there watching in disbelief! All the while, there's my dangling car -- I'm thinking, "this thing is going to snap off and roll into the cop car, yikes!"...

Thankfully, the car didn't snap off. And, instead of writing me a ticket for having a half ass tow hookup, the cop got out of his car and helped me push my old Bimmer up the incline and into the parking lot (with the help of another good samaritan). To do this, we had to rip off the rest of the tow bar from the now torn up bumper (it's not that bad and can be hidden with a license plate ;). I then had my buddy Dan come up to Target to meet/help me as I rushed to U-haul to pick up a heavy duty Tow Dolly. I cautiously hooked it up and rolled out of Delray scared to death... I think there's a lesson to be learned here somewhere, ha!

I write this as I lay in my bed at my Mom's place realizing that I didn't tell them the story tonight! I kinda blocked it out of my mind as I was so freaked after it happened knowing that I still had to drive 1200 miles... To put it mildly, I was pretty white knuckled for the first few hours and gradually gained confidence as I rolled along. I couldn't go faster than 55 mph (per the warning stickers on the U-haul rig) and to be honest, wasn't in any hurry after the debacle. So, instead of the trip taking me 2 days, this time it took three and have to say it was pretty smooth except for hitting a nasty storm in southern Ohio that had me driving 40 on the highway with my hazard lights flashing.

So tonight I relax, stretch out my back and get some sleep. Tomorrow I'm going over to my house to drop off some stuff and then down to the Copa to catch a ballgame, yessss! It's my week off the pills then I'm off to New York next week for another PET/CT scan to see where my disease is at.

Seems like yesterday that I was on the golf course talking to my trial coordinator asking questions about my last scan... It'd be nice if I could just forget about all of this and not have the burden of wondering what's going on inside my body. Hoping this change of scenery will keep my mind occupied so I won't have to think about what I might have to do just in case the S&N is no longer holding my disease down.

I guess I'll cross that bridge when I get to it ;)

Good night from the D

Heartbreaking...

This doesn't have anything to do with cancer but makes me sick nonetheless... I just can't believe this (The BP Leak) is happening. Powerful companies are taking over our country and slowly destroying it (literally). I know I should be worrying about other things but I can't just sit around and ignore this.

If there ever was a time to pay attention to the energy policies of this country, it is now. Now is the time to investigate how these oil companies are allowed to operate like this seemingly without any oversight. It's time to ask the question "why isn't there more being done to pursue alternative energy sources"? Hell, while you're at it, time to take a look at how the banking industry was allowed to operate unregulated for as long as it was in leading up to the financial meltdown. Our current and past elected officials are letting these industries destroy our country right before our eyes...

Unfortunately, we can't vote big companies like BP and AIG out of business...

It's time to put the power back in the people's hands and limit the power of these mega companies. This has gone way too far...

So that's my rant for now, I wish I could say I feel better but I don't. I'm just really pissed and saddened by this whole mess if you can't tell ;) BTW Obama, you have the executive power to pull out all the stops in containing more oil at sea and preventing it from coming ashore. Time to get busy sir, it's only been 70+ days. The people of the Gulf are waiting...

If you can, copy and paste this link into your browser. It's a banned YouTube video covering the catastrophe.

http://www.youtube.com/watch?v=NcvzkrPL9C4

(hopefully BP hasn't shut it down yet...)

Preparations...

Excited to say next Monday I'll be making my way up north back to Michigan for a few months! I've already started packing up my stuff to prepare for the 1200 mile drive. While it's been a fun last couple of months down here in SoFlo (since I've regained my strength) I'm definately ready to get out of this heat... Not to mention, I don't want to be anywhere near here when hurricane season starts. Hoping that none of my friends have to deal with any major storms.

It's going to be so nice to be back in Michigan for the summer! Can't wait to see my family, friends and Chili! My Mom said she looks like a ragamuffin right now and needs a haircut in the worst way. I hope she isn't sad leaving grandma and grandpa to come live with me in Ferndale. I've got a pretty nice yard there and a great park across the street so we should be able to become good buddies again (I hope ;)

I think this change of scenery is going to do me some good as I kinda feel like I've been in a little rut lately... When I'm on the go, I don't have a whole lot of time to sit and ponder what might happen if my disease decides to get aggressive on me. I haven't felt all that great the last couple of days and sure enough my mind starts to wander... I felt a little bump in my neck yesterday which is a little tender and automatically assumed my disease is progressing. This could be a number of things so I have to remind myself to stay in the here and now. I've had some night sweats recently as well and have to remind myself that it's 150 degrees here in Florida (or it seems with the humidity) and maybe I just need to turn the air up a little. It's these little mind games that really test your strength and by now you'd think that I'd be so battle tested that none of these things would get to me but they still do (unfortunately)...

So, I'll continue to keep myself as busy as I can. To facilitate that, this week will be spent on tying up loose ends and packing up whatever I can fit into my car to bring north. I'll be towing my new ride on a tow dolly so that should be interesting! Once I get up to Michigan, I have plenty of projects that'll take up a lot of my time. I haven't lived in my place in Ferndale for around 10 years now so there should be a lot of projects to work on. The first thing that pops into my head is doing ceramic tile in my kitchen. When I first remodeled the house, I ran out of money and laid a cheap vinyl floor down. I think it's about time for an upgrade... Also, I'll have my car to work on which should be a blast. I just hope nothing happens to it as I tow it...

Anyway, other than the obvious, all is well I must say. It really doesn't feel like summer yet being down here in Florida except that the weather is getting hotter like I mentioned.

So, here's to the beginning of my summer starting July 5th!! Hope to at least get some fireworks in down here before I head north :)

Fun in NYC!

Well I'm sitting here in my room watching the Mets Tigers game and enjoying the commentary of Jerry Seinfield! I guess he's a pretty big Mets fan and seems to know his stuff about baseball.


Citi Park (formerly Shea Stadium)

I went to the game at Citi Park last night and while it was a blast, the game was painful to watch. It was one of the worst perfomances I can remember by the Tigers and to add insult to injury, it rained cats and dogs at the game! It was fun taking the Subway through Queens and checking out all the graffiti. There's one area in an old warehouse district where they actually showcase the graffiti and it's growing... Wish I could've snapped some shots but the train was so packed and we blew by it pretty quick. The ballpark itself is pretty nice after they renovated it prior to last year. I've now been to 8 different ballparks and have to say Citi Park is right up there with some of the better new parks.

Today was fun as I took the train downtown and walked across the Brooklyn Bridge! My friend Paulette joined me and we ended up getting a pizza at the famous Grimaldi's which I had seen on the Food Network. It's heralded as the best pizza in New York and certainly didn't dissapoint. They use a different type of cheeze than mozzarella and every pie has fresh sweet basil baked in which is awesome. The place does an incredible business as I've tried to eat there 2 other times but the line was always too long. We still had to wait in line today but it wasn't as bad plus I wasn't as hungry as the last couple of times.


The Brooklyn Bridge!


Grimaldi's Pizza in Brooklyn. Looks like a hole in the wall but there's always a line to get in and the pizza is incredible!

Speaking of being hungry, I'm still having trouble with my appetite because of the SAHA Niacinamide. The Marinol has been helping but it has its drawbacks ;) Namely, the impaired state it induces... It'd be fine if I was at a concert or something but having to figure out how to get to Midtown from Brooklyn via subway (not being familiar with the train system) can be a problem... I got a little nervous when I got on the F train earlier thinking it was going to take me to Midtown only to find out that the train I was taking was going into the heart of Queens, yikes. Funny how the scenery changes once you start heading into the sketchy areas of New York. Once I realized I was going the wrong way, I jumped off the train to head back and not only was the scenery different in the station (i.e. dirtier, dingier), the station itself smelled like a toilet, nasty. I guess you could say my heart rate was a little elevated at this point, ha! So, to make a long story short, I was able to figure it out and took the F train to the A train to the E train and ended up at my destination which was the World Trade Center site (to take some pictures). The last time there, I didn't have my camera and wanted to capture what it looks like barron before they construct the next tower.


Hard to believe the twin towers used to stand here....

So, I have a blood draw and Dr. O'Connor appt. tomorrow at 9:00. From there, I'll probably jump in a cab and head straight to the airport for my 12:50 flight. Should be a pretty exciting morning...

Ok, back to the game... Go Tigers!!

Back in the Sauna

Well that was a fast 10 days... Seattle is awesome! I'll miss it...

I just got back to SoFlo a few hours ago, what a long day... I don't think you can fly much farther in the lower 48. I flew Continental and amazed how bad the customer service has gotten for that airline. I used to fly them often when I lived out West and don't remember them being that bad, ugh... I had a $250 voucher in my hand after volunteering to give up my seat (as they were oversold) only to have it taken away from me after they made a "mistake". I was then forced to check my carry on bag, give up my original seat and was given a middle seat in the back of a packed plane, ugh. Previous to this, I was amazed to witness several instances where agents were talking back to customers in ways you shouldn't be talking to customers, totally unprofessional... I usually stay pretty cool in airport situations because experience tells me getting upset only makes a bad situation worse and I happen to be frying bigger fish anyway ;). For my troubles, they gave me a free drink voucher, jeez...

So I’m back in steamy Delray Beach for a couple of days before I fly up to New York to do the required blood draw and visit with Dr. O’Connor. Like I mentioned, I’m excited to go to Shea Stadium (it’s called something else now but I still call it Shea) next Tuesday night to see my Tigers take on the Mets! We’ve been hot lately winning 6 in a row so hopefully they’ll keep it going…

By the way, I read some good news recently regarding fellow Hodge Warriors (Matt from Colorado and Neil from Toronto ) who went through a stem cell transplants and had a poor prognosis (primary refractory like me) and are actually clean after 9 and 12 month scans respectively! Congrats fellas.

Time to get some much needed Zzzzz's. Not sure why I posted except maybe to let everyone know where I am at the moment. Seems like I'm all over the place these days ;) The plan is to enjoy my week off from the pills wherever I am!

Probably update next from New York...