Moving Forward!

So, as I mentioned, I'm back from my two week trip. It was awesome! Southern California was great as always. Had a chance to catch up with some friends, play golf twice, see some great live music, hang out on the beach and do some exploring. Hawaii was out of this world! What a beautiful place... Stayed on the island of Oahu the entire time and it was non-stop action! Got a chance to surf three times in Waikiki and managed to get up a few times! In fact, I had the longest ride of my life of about 10 seconds which for me is huge :). The beaches there are incredible. Went snorkeling a few times and two out of the three had a chance to swim with giant sea turtles! That was probably my favorite thing, those turtles are so cool. Also had a chance to hang out with my cousin Jeff who just moved there from Michigan and teaches 8th graders at a charter school. I'm really proud of him as the job he's doing isn't easy and he's putting in some serious hours to try and make a difference in these kids. He stays at a great place with a nice patio where we played darts and listened to music. His buddies have a place on the beach and we went there one night for a party and had a blast. We also did some cool stuff up at the North Shore visiting Sharks Cove and a couple other great beaches which the names I can't remember. The best meal I had was actually from a roadside grill trailor where I had a fresh grilled mahi mahi bowl, yum! It had fresh grilled fish over brown rice with pico de gallo, sour cream and avacado. Funny, with all the fancy restaurants in Waikiki that my best meal would come from a roadside grill trailor, ha! Anyway, loved the North Shore and little town of Haleiwa (sp?). We also saw a great reggae band up there on night called Dub Conscious.

All in all it was a fantastic trip! I wish I could walk out to the beach right now and take a swim in that warm clear water! I'll settle for Florida however and will be making plans to move down there soon...

As for my other stuff (yeah, gotta talk about the stupid cancer stuff) things are looking ok. I just had a PET/CT scan and the nurse just came in and told me that they're going to mix up the SGN35 for infusion! This means that my disease is stable or better. I'll find out exactly where it's at a little later and will mention that in my next post. I'm just grateful I can continue on the trial and will keep the faith that the disease will be kept at bay.

So, that's pretty much it for now. Thought I'd post some shots from the trip. Mahalo!


Getting ready to hack away at Torrey Pines in La Jolla ;)


"Hangin Loose" with Mike at Waikiki beach. The surf was really small on this day


Beautiful sunset at North Shore "Pipeline"


Getting ready to order a delish fish bowl at the grill trailor at North Shore


Mike and I at Hanauma (sp?) Bay, awesome snorkeling with the sea turtles!


Hanauma Bay!



Hanging out at Sharks Cove with my cousin Jeff, his roomates Lindsey, Amanda, Marie and buddy Mike


Jeff and I at the top of his secret hike in Wainaie


This was the view below!!

I'm Back!

Aloha Everyone! Just got back a couple of hourse ago and I'm extremely exhausted. My plan is to do an update tomorrow while I'm at Karmanos for my PET/CT scan then (hopefully) my 5th SGN35 infusion.

I'm hoping that I can detail the vacation and also talk about the cherry on top being stable or better response.

Time to get some much needed rest...

Mahalo

Waikiki

Just landed here in Honolulu and it's really beautiful... Socal was awesome! Had a chance to golf at Torrey Pines, saw some great live music and hung out with some great people :) I've got a few pictures but an internet connection has been sketchy and will have to wait till I post them. I'm feeling ok for the most part but struggling a bit with the back pain and muscle/joint soreness. Nothing that the warm waters of the Pacific can't heal ;)

Getting ready to head out and catch a reggae band and getting up tomorrow morning at 6 to go surfing. Can't wait to get out into the water!

More later...

P.S. Happy Birthday Dad!

Mahalo :)

Waiting For The Sun

Made it to L.A. in one piece! Can't get internet service so I thought I'd try my first post from my phone. Apparently it rained here today for the first time in a while. Sposed to be sunny tomorrow though :). My buddy's got a partial ocean view from his balcony and the beach is across the street. Life is good!

It's nice to be travelling again :)

The "Other Hollywood" ha!

Taken from the remake of "Red Dawn" shot and produced in Detroit

Right around the corner from Karmanos "on location"

As you may have noticed, I'm gradually doing a Motown theme with my music player in the spirit of spending a lot of time in the D lately (from the suburbs). I think a lot of these tunes probably still ring true today for many who are struggling in the city...

So I mentioned they're shooting the new Red Dawn movie downtown and sure enough there it was right around the corner from the hospital after I left my last infusion! They had Woodward ave. blocked off and there were quite a few spectators and police. I can't figure out how the city is making revenue from this though and probably need to do some research. In any event, it's pretty exciting for an industrial town like Detroit to have stuff like this going on and if nothing else infuses some energy and vitality downtown and the surrounding areas... I was surprised to find out how many movies have been shot here the last couple of years (in Michigan) when I did a Google search... Here's the list since 2007;

2007
•The Dread – Safe Harbor Productions
•Life Goes On – Orlando Entertainment
•Transformers – Dreamworks
2008
•Gran Torino – Warner Brothers
•Jumper – 20th Century Fox
•Prince of Motor City – ABC Television/Disney
•Semi Pro – New Line Cinema
2009
•All’s Faire in Love – Patriot Pictures
•America – Sony Pictures Studios
•Amsteroid – Odd Angle Entertainment
•Butterfly Effect: Revelation – After Dark Films
•Cherry
•Deadheads – FroBro Films
•Demoted – Parallel Media
•Gifted Hands – Turner Network Television
•Horse Crazy 2
•Hung – HBO
•Intent – New Castle Entertainment
•The Job – Kiki Goshay Productions
•Miss January – Gilbert Films
•Prayers for Bobby – Lifetime
•Red and Blue Marbles – Don’t Tread on Red
•The Steam Experiment – Cinepro Pictures
•Street Boss – Bierlein Entertainment
•Tug – TicTock Studios
•Virgin on Bourbon Street – Infra-Red Pictures
•Whip It – Babe Ruthless Productions
•Youth In Revolt – Dimension Films
2010
•High School – Parallel Media
•Offspring – Moderncine

It was funny (at the time) yesterday as my buddies and I were walking back to the car from the Lions game (Ford Field) and they were shooting a small isolated scene from the movie in the street. My friend Mike had been a little "overserved" at the game and proceeded to jokingly yell over to the scene "I need more emotion from you!!". He totally ruined the shot and you could see the director was really pissed and all the actors had a disgusted look on their face. We of course were cracking up and as I was walking by I condescendingly said "welcome to the D" (not sure why, that was pretty crappy...). I think we were taking out our frustrations on these innocent bystanders after another depressing Lions loss. I feel bad (more like a jackass) as we probably just contributed to the bad rep Detroit has, ugh...

So I mentioned the leaves are turning here and except for the rain and colder temperatures, it's really pretty (can I use that word and still sound masculine?! ha). Anyway, here's some shots I just took after a bike ride at Stoney Creek:





I took Chili to the park too and she was enjoying the scenery! Thought it was cool how I showed up in the reflection in the window and sitting here laughing at the expression on her face! ;)



So tonight I'm going to start packing for my trip :) Hoping that I feel good while away so I can take full advantage of this adventure! Looking forward to writing about the L.A.Hawaii experience...

Cheers!

SGN-35 #4

Downtown again at Karmanos for round 4... The computers are down today so I've been sitting here bored for a while and thought I'd throw some b.s. out into the blogosphere!

Dr. Ram just came in and informed me of a new Hodgkins trial they're considering signing up for, RAD001. Apparently, it's a renal cancer drug that's shown some activity in Hodgkins. He said the phase one data showed a response rate of 50% for trial participants. Not great but it's an option just in case the SGN-35 stops working.

I got excited here for a second, one of the nurses said a vendor brought in pizza and pasta! I was looking forward to that for lunch instead of the smushed turkey sandwich they brought me. Turns out the pizza was for the folks in the finance department. Kinda sums up the state of affairs in the health care system these days...

Even though I may complain about this place (Karmanos) a bit, I have to say that everyone here is very nice :) All of the nurses go out of their way to make sure I'm comfortable and even the janitor lady checks in on me and offers me a newspaper, something to drink, etc. Have I ever mentioned that Detroit people are the best?! One thing about us Detroiters, we are genuine people, there is no facade... Usually, what you see is what you get. I've lived elsewhere in the country and that's not always the case. I think the term "keeping it real" originated in Detroit, ha! Another observation I've made since moving back here is that us Detroiters or Michiganders in general definately have an accent! I never noticed it growing up here but now can tell... I won't go as far as saying it's a Fargo accent (you betcha!), but it's definately there. Kinda like a hybrid of a Canadian accent mixed with a Chicago accent if that makes any sense. Of course here in the city, it's totally different as most people speak in ebonics. So, depending on where you live, you're going to hear different "dialects" if you will. To further complicate this discussion, I forgot to mention we have the city of Dearborn (just outside Detroit) which has the highest concentration of Lebanese people outside of Lebanon (and some great food!) as well as Hamtramck which is a big Polish community (my peep's!). I can't forget Mexicantown near the bridge to Windsor and of course Greektown! Detroit is quite the melting pot and there's so much soul here...

I was thinking of taking a drive up Woodward on my way home. BTW, Woodward ave. is the first ever paved road in the U.S.! Kinda makes sense with the automobile industry being born here and all ;) Anyway, they're shooting a movie a couple blocks away from the hospital on Woodward. It's crazy how many shows and movies have been shot here in the last few years. Three that I know are 8 Mile, Gran Torino and the HBO series "Hung" among others. I can't remember the name of the movie they're shooting now but will try and take some pictures and post in my next blog.

Anyway, my nurse just came in and needs to draw some blood from a different vein and take my vitals, gotta go!

Hope all's well :)

Talking myself down...

So, the Tigers blew it... What a letdown. Not only do I feel bad for myself as a fan but for all the people in Detroit who were looking for something to rally around as the city and state continue with the highest unemployment in the country. I put a lot of time and effort into rooting these guys on this year and to say I'm deflated is an understatement. I probably went to 10-15 games and caught most of the others on tv, that's a lot of time! To have a division title in your grasp only to let it slip out of your fingers the last game is heartbreaking! I know this may sound crazy to those of you who aren't sports fans but with all the stuff that I'm going through, this season was a great escape from my troubles and have to say I'm having a hard time getting over this, (lol)! If you didn't know by now, I'm a bit of a sports fan ;)

Now that I think about it though, I realize how silly it is getting too caught up into the fortunes of a professional sports franchise. First and foremost, these athletes are doing this for a living. Don't get me wrong, there are some athletes who are in it for their passion for the game and genuinely are concerned with doing everything they can to help their team win. However, there are far too many that are only in it for the paycheck and don't really care if their teams win or lose or what the fans think. Case in point, our best and highest paid player Miguel Cabrera ($20 mil a year) chose to go out last Friday with players from the other team and proceeded to get so drunk he blew a .26 at 6:00 a.m. the following morning (after his wife called the cops on him for being beligerant)! .26 is over 3x the legal limit to drive and at .35 one would need to be admitted to the hospital for detox! This is the night before the biggest game of the year... It is hard enough to hit a 95 mile an hour fastball when you have a clear head. It's no wonder he went 0-4 with the doozy of a hangover he must've had. So, that performance was bad enough in such an important game... To make matters worse and in my mind causing irrepairable damage, the team must've been so distracted and let down tonight knowing their best player was out partying like a rockstar with the other team before such a big game. Who knows, maybe the other guys will forgive him and move on... He is only 26 years old and God knows I did some stupid stuff when I was his age. That said, he's going to have to work pretty hard to earn back my (and I'm sure plenty of other Detroiters) trust who he let down with his bad decision.

So now that I got that off my chest I feel better! I can understand why blogging is so popular, it's such a great way to blow off steam! There is a lot to be said about getting your feelings out (not just about baseball but everything!). I wonder if psychologists recommend blogging as therapy! I mean you're not hurting anybody and it's a great way to brush up on your typing skills, ha! Even if nobody is reading this, I still feel like I'm releasing stress and if nothing else, entertaining myself ;)

Ahhh, blogging....

Go Get Em Tigers!!

Just sitting here watching the game... If we win tonight, It's off to New York to take on the Evil Empire (Yankees).

If we don't, it's going to be a long winter.

GO TIGERS!!!

Karmanos (sounds like car+man+noce) today

So I went in to see the keystone cops at Karmanos today. I was hoping to be enlightened as to why my muscles and joints are constantly aching (yeah, the glucosamine was a fluke). Unfortunately, I walked out of there probably a little less intelligent than before I walked in. I was told I might have Grade 2 Myalgia but they (Dr. KGB and Dr. Ram) weren't for sure. No new pain meds, no new treatment recommendations (i.e. accupuncture, accupressure/massage) just more of what I'm taking now... Are these guys really getting paid for this? I'm not angry just a little dumbfounded. I hate to say this but I learn more about my disease and remedies through my Lymphoma forum and the internet, crazy...

Anyway, life goes on of course. I'll be getting an infusion (round 4) this Thursday. I just have to hope this pain doesn't get any worse and the SGN-35 continues to hold my disease stable or better yet, starts wiping it out. I just have to get used to this new pain and power through it. I've been through much much worse when I had a mouth full of lesions and skin melting off my body (the rash) in places you don't want to have skin melting off. I couldn't walk, talk or eat for two weeks so this ain't nothing, sheeeiit! Just a little discomfort that can be overcome (as you can see, I'm trying to psyche myself up!).

By the way, I love the line in the Soundgarden tune on my player rt. now, "I'm looking California... and feeling Minnesota! Oh yeah...

Counting down the days till my trip! The pieces are starting to come together. My bud Mike and I will be tooling around Oahu in a topless Jeef Wranger :) Still working on the lodging though... Also, Mike just scored a new apartment in Sunset Beach L.A. that's right across the street from the beach. I'll have a chance to get back out in the water to brush up on my weak surfing skills, ha! Probably best to take my lumps in Sunset as I think it's a whole different ballgame surfing in Hawaii. Waikiki beach is supposed to have some gentle surf so I'll start there and if feeling confident may try and find some mellow areas on the North Shore. Mike's got a buddy (Ben) that lives in Oahu and he's prettty dialed in to the surf scene so that should help. Ben also plays some nice acoustic guitar and know's all of Jack Johnson's (JJ's from Hawaii) stuff so that should be pretty nice to listen to after surfing - around a fire on the beach.

Looking forward to doing nothing tonight except watching a classic NFL matchup on M.N.F. - Green Bay at Minnesota. It'd be better if it was outdoors at Lambeau Field but whatever. Rooting for my Tigers to beat the Twins Tuesday night to win the division. Go Tigers!

Anyway, I've just realized I'm rambling and need to wrap this up, thanks for reading!

Later-

My "Office"

Since I spend so much time in here, thought I'd share some pics of my room! It just so happens that I've been chillin in here for most of the day as I'm still pretty sore and it was pretty ugly out earlier (the sun is actually popping out now though).

You may ask, "why is he posting pics of his room"? I asked myself the same thing and my answer is I want all aspects of my life (well, maybe not all) to be documented when the story is written, ha! If I did decide to write a book (pipedream), I'd definately have to devote some pages to the amount of time I spend in my "nest" if you will. For some it's the couch, for me, it's the bed and chair (cancer survivors can probably relate). I kinda look at this room as my battery charger so to speak. I go out and do things that expend my energy and come back here to recharge! I have everything I need... The 42", surround sound, ipod dock, 2 guitars, all my family heirlooms, a bathroom (very important), and of course my books and laptop.


This pic was taken after I was all happy my Wolverines came back against MSU only to be disappointed when we lost in overtime :(


One of my paintings and Grandma and Grandpa's old "keepsakes". The fisherman and fish are my favorite! They had them on the fireplace mantle when they were alive and I remember always staring at the fisherman and wondering what he would do if he caught that giant fish, ha!


The view from my window, the little tree is starting to change :)


Thank goodness for high definition!


I need to bribe Chili in here with treats. She likes to be around the action downstairs!


Chili in her "office" or cave as I like to call it :)

So, with all that taken care of, I think it's time for a nap! Good times ;)

Moving On...

Not to be a bummer, but had a rough day today... The news of Adrienne is of course still fresh on my mind and probably won't go away any time soon. To make matters worse, the muscle/joint pain has come back and it's been pretty intense. It seems like the same thing happened last cycle, the aches came on around day 13-14, exactly the same timeframe. I also have some major pain in my side/back right now after going out and having a beer. What does all this mean? As far as I can figure, the muscle aches may come on as the drug starts exiting my system (supposed to have a 3 week half life). I'm also thinking that as the drug is leaving my system, because I'm not in remission, the cancer is becoming active again and thus I get the pain from alcohol. This latest episode was pretty bad... It was in my back and my abdomen. I sure hope the Hodgkins isn't spreading. I have an appt. with my Onc. this Monday to discuss the muscle/joint pain as well as my fear of possible disease progression. Progression would mean getting kicked off the trial and not sure what my next options would be.


Hanging out before the Tiger game yesterday where they could have clinched but instead layed an egg. To drown our sorrows, we drank all those beers on the table, ha! (just kidding) Seriously, I had one and felt ok because I took Ibuprofen. Tonight, I didn't take anything before I went out and the pain was intense.


Goofing around...


Me and "Big Boy"!


Chili sad that she couldn't go to the game :(


With all this said, I'm pretty calm! I'm mostly writing this to document my experiences with the drug as it's easy for me to come back to this blog and see exactly what was going on at a particular time. My next infusion is scheduled next Thursday and then I have a PET scan scheduled once I return from my trip on the 29th. Not exactly sure what to expect but wouldn't be surprised if we need to go in a different direction.

The Pacific Ocean is calling my name right now...

Sad Day...

Edited:

Just lit a candle in memory of my friend Adrienne who passed away this morning peacefully with her family at her side. She was 21 years young...

It seems like yesterday that I had a chance to meet her and Mom Alison down in Southbeach Miami. She was such a positive, strong willed, confident young woman despite all the struggles she'd been through fighting Hodgkins for her entire adult life.

She taught me that you can plan cancer around your life not your life around cancer. She taught me that just because you have refractory cancer, you don't have to be stigmatized by it...

We as cancer survivors are no different than anyone else... We just have to struggle a little more than most and by doing so, the rewards are so much sweeter...

In honor of her, I plan to continue to live my life with zest and as normally as I can -- and in her Mom Alison's honor, I plan to continue to help fellow survivors the best that I can.

Here's a link to copy and paste of some photo's posted by her father. http://adrienne.eazyclick.com/

Rest in Peace Adrienne :)