Chris Alt Delete

SGN-35 #7

2009-12-10T18:40:00.000-08:00

So I had my 7th infusion today... I talked with Dr. Ram and he's concerned about my muscle aches and neuropathy. He told me if it gets any worse I may not be able to continue on the treatment as the neuropathy can do permanent nerve damage. He said the muscle aches would eventually go away though. Of course none of this will really matter if after my PET/CT scan my disease shows to be progressing.

If any of these scenarios happen all is not lost... The plan then would be localized radiation then on to another trial that's getting ready to start at Karmanos called RAD001. It's shown to have an objective response rate in Hodgkins of 50%. Not great but not bad. I have no idea what type of side effects or how often I'd have to have treatment but will do some research.

I'm going to do my best not to think about any of this as I'm leaving to go back to Florida tomorrow and just want to enjoy myself.

The scans are on the 28th and if all's well, my next infusion of SGN-35 will be on the 30th.

Hoping to be able to go into the 2010 with some decent news...

Ah, Internet Access...

2009-12-08T18:06:00.000-08:00

So nice to switch on my computer and know I can instantly get on the internet! I didn't really like my post last night as I was half asleep and not very coherant. I think my blogging is a little rusty ;) Anyway, the thoughts I have on South Florida didn't come out as eloquently as I'd like them to. So, I will expand on this at a later date after I've lived down here a little longer. It's definately worth writing about...

Anyway, I snapped a couple shots of the outside of my place for S and G's. Once I'm done with my projects in here, I'll post some pics of the inside.

Cheers :)

Shot of the common courtyard in my Quad

My wreath looks strange with the palm trees...

The pool!

Howdy

2009-12-07T21:39:00.000-08:00

Well, it's been a while since I posted, sorry. I just today was able to get my internet going and have been super busy working on my place. It's starting to come together though and feeling more comfortable here every day.

It certainly is different here in Florida... While the scenery and weather are beautiful, it's taking me a little longer to get used to the "attitude" of the some of the Northeast transplants and the retirees with all due respect. It's weird, people are moving at such different paces, I need to find the happy medium. I also have to figure out a way to avoid the superagressive young drivers and the overly defensive older drivers. I'm getting better at yelling obsenities out the window and getting quicker and more clever with my "bird". The other day I flipped it out of my moon roof for extra added effect, ha! It's actually nice to release tension this way, funny. Maybe the New Yorkers have it all figured out. Just let it out and you'll feel better! This includes the car horn which gets used more than anywhere I can remember living. I still tend to believe avoidance is the best policy but that's just me. I mean, do you really have to sneak into that void one lane over going 75 miles an hour just to gain 5 seconds on your commute? And if the person behind that void decides to speed up, should they be subjected to every expletive in the book and 10+ second honk? I'm not so sure but I grew up in the Midwest...

I was thinking the other day, I kinda know what the retired folks are feeling as they enter into their "golden years". There is a sense of entitlement (as there should be) with these folks as they have paid their dues so to speak. I have to admit I selfishly have also felt this sense of entitlment with what I have gone through and with the possibility that my days may be numbered (relatively speaking, I know all of our days are numbered). I also find myself moving at a slower pace, making sure I'm taking all this in.

I have been working pretty hard though for a refractory cancer survivor! Case in point; I found this old oriental type rug at this resale shop I've been frequenting called Faith Farm Ministries. It was sitting out back and I asked the guy what they wanted for it and he said $10! I thought to myself I can't go wrong, it's only $10 right? So, the guy loaded the thing in my car and I took it home thinking it just needs to be cleaned and I've got myself $500 rug. Big mistake... First, I spread it out in the green area adjacent to my condo. I mixed a concoction of pine sol, amonia and baking soda thinking this would kill the germs and any odor it had. So I scrubbed it down with the solution and rolled it back up. I failed to take into account how heavy a wet 10x13 rug is when wet! It was heavy enough when it was dry... So, I managed to somehow drag it into my place and get it unrolled into my living room. That alone was enough to fry every muscle in my body. I had rented a rug doctor and proceeded to extract the moisture and then do two passes with the rug doctor solution. To make a long boring story short, the experiment didn't work! I think some dogs or cats decided to make this carpet their urinal and the thing stunk up my place something awful. I had to get it out here pronto, nasty! Live and learn I guess...

I also decided to cut a hole in my kitchen wall, ha! Still working on that one... I have found some good deals that were keepers (on furniture and such) though. I bought a couch and a loveseat for $20! I used the rug doctor to steam clean em and found some decent couch covers at Big Lot's. Old couches are always more comfortable aren't they? I also found a couple of dressers and some end tables for cheap. I broke down and bought a new rug for my living room from Target. The only thing I need now is a coffee table and possibly a tv stand and I'm good to go.

So, I fly out of here Wednesday morning and have treatment in Detroit on Thursday. I then fly back down here Saturday the 11th until Dec 23rd. It's all fun stuff from here on out as my place will be finished for the most part. Actually I don't mind working on my place but maybe at a slower or more infrequent pace. I've noticed that since I've been sick I need to have order in my surroundings maybe to compensate for the disorder that's going on inside my body (and sometimes my psyche). I already feel more at peace with everything pretty much in place here. As for my body, can't always say the same unfortunately. It's day 18 of my infusion schedule and the body aches are in full effect. I also feel like the lesions on my spine might be getting worse as my back is extra sore. Hoping this is just from me working around here though of course. I have a required CT scan on the 30th and should know more then.

Strange, when I don't write this stuff down, I don't think about it as much. Maybe there is something to be said about going balls to the wall. Oh wait, I already wrote about that before ;) Well, this next experience down here will be more outdoorsy stuff if I have my say (the weather hadn't been cooperating the 4 previous days to this one). Really quick funny story, I decided to go use the pool today to take advantage of the sunshine. So I float down to the bottom of the pool poroise style with my arms at my sides while having my eyes closed. Next thing I'm shocked to feel my chin scraping the bottom of the cement pool, ouch! So now I have a nice little raspberry on my chin, ha! Good excuse to grow a beard or goatee if I can get enough hair to grow on my face (the hair growth has been thinning out since SGN-35, in fact, my legs are skin only now, weird). Anyway, this should add to my nice collection of scars I've accumulated over the last couple of years. You can actually see one on my forhead of the below picture when I got sunburned in Death Valley. I of course have the scars from the biopsies and port placement/removals on my chest. There's a nice one on my arm from a battle with Chili and waiting to see what this turns out like on my chin. For whatever reason, I tend to scar really easily these days... Who needs tattoos right?

Anyway, time for some rest. I'll try and post some pics of my place and scars (ha!) next time.

Later-

Happy Thanksgiving!

2009-11-24T09:04:00.000-08:00

Just wanted to have an excuse to post with Adam Sandler's Thanksgiving song in the background ;)

To all my friends and family,

Thanks!!

2009-11-20T11:01:00.000-08:00

Me n Chili driving...

Well I’m back in the D after some serious driving the last couple of days. I decided to follow my GPS route instead of taking the standard I75 all the way up and it’s a much nicer drive plus a lot faster. I think I did the whole trip back in less than 20 hours which is cookin! I also had my first incident driving which is pretty good considering I've driven around the country a couple of times since June. I was in Ohio and they were working on the freeway and got caught in the left lane next to a line of semi trucks. I couldn't merge in when the lane ended and smashed into all of the orange barrels knocking my side mirror off and almost giving myself a heart attack. Luckily I was ok and unfortunately didn't have a chance to get the licence plate of the truck that cut me off. I have to say the incident did wake me up though as I was starting to feel kinda tired prior to that happening. I think I'll be flying down to Florida from here on out...

Chili "getting low"...

I’m here at Karmanos for my 6th infusion, waiting for the required pre-infusion blood draw. It’s amazing how every time I come for these (and most of my past appointments) I’m the only person my age in the place. I mean, 90+ percent of the time it’s mostly older people waiting in these chairs. I was having a conversation with a woman who has incurable breast cancer and she was talking about how “God meets you where you are”, interesting… She was also preaching how we’re the one’s controlling what’s going on with our survival, basically our attitudes. I agreed with her it’s important to keep a positive attitude but challenged her by asking how someone in a third world country could “control” their survival with a positive attitude. I guess I get tired of cancer cliché’s sometimes…

Took this at Delray Beach G.C. Amazing how something seemingly dead (palm tree) sustains and supports new life (young banyan? tree)...

The infusion was a success (although very long) and I’m here back at the house the next day completely exhausted! Feels like I haven’t slept in weeks. I don’t remember feeling this tired but probably because I was that tired before (thus not remembering!) if that makes any sense.

So, I think I’m going to spend the day in bed today, just seems like the thing to do. I know the energy will come back and I’ll be able to enjoy the weekend. Hard to believe I’m going to be home for the Holidays this year! The last two have been spent out in Seattle completely sick and not able to travel due to treatment. Should be nice to see the family :)

That’s all I have energy for right now! Took me two days to write this, jeez…

If I don’t post before Thanksgiving, happy one to you!

Re-Connected :)

2009-11-15T20:16:00.000-08:00

Shot of my walk down to beautiful Delray Beach FL

Wow, what a nice surprise. Just got back to my place after watching some football with friends and decided to give my computer another try after not being able to connect for 4-5 days. Success! I'd been using the "beachbum" signal which is the only unprotected signal in this complex and for some reason it wasn't available lately. I obviously haven't had a chance to get Comcast over to hook up my internet :)

Anyway, now that I have a chance, just wanted to say that things are going well and I'm really enjoying SoFlo! The weather has been so nice the last few days and I've been getting out everyday doing something fun. I've been able to take a bikeride to the beach, do some surfing (body and longboard), play golf, hit an art show, try some great bars/restaurants in between working on my place and resting, ha! It's really nice here...

The sand is really soft

The water is nicely blue and warm

There's some really sweet looking birds here too!

I've still been really achy all over and numb in my extremities but it makes it so much easier to deal with being active. I think the worst of it is over too... I've noticed that the "discomfort" peaks 6-7 days away from infusion and gets a little better as I get closer to Tx day. I have to drive back to Michigan on Tuesday so hopefully I'll be good by the time I have to drive.

My place is coming along... I've pretty much got it all re-painted but I've still got a ways to go before it's comfortable here. I think I have a line on some couches through my buddy which he'll let me use and a futon leftover from an estate. The other stuff I can fill in next time I'm down in December and it should feel pretty homey here by then :D

So like I said, I'll be leaving Tuesday and will be staying in Michigan through Thanksgiving and up until my next infusion on December 4th. I'll be doing one more drive down here probably on the 6th of Dec. and stay down here till just before Christmas. After that, I'll be commuting through the air as the drives are a little tough on the ole back. Not to mention, my car has 130,000 miles on it now and don't need it breaking down mid route.

I would like to send out prayers for Jeremy from Brooklyn and the Hodgkins board who just found out his stem cell transplant failed and also has refractory Hodgkins. He's going to be doing Bendamustine (trial) and hoping he gets relief from his symptoms quickly. I know how awful a time this is for him and his wife Maggie right now. Here's the link if anyone feels like leaving a positive comment.
http://forums.lymphoma.com/showthread.php?t=44792

Hope all's well with everyone!

Take care, Chris

Yikes!

2009-11-12T01:57:00.000-08:00

Wow, just posted a few hours ago how the muscle/joint pain hasn't been that bad and here it is 4:57 in the morning and I've been awaken by burning 6-7 pain in my arms and back... I think the fishing trip is taking full effect. This is pretty harsh. Just took two pain meds and praying this goes away and I can go back to sleep.

What the hell!

I should've remembered, the last week of my infusion schedule is always the hardest and sure enough, my next infusion is 7 days away...

Uggghhhh

Settling In

2009-11-11T20:16:00.000-08:00

So I've been down here a few days now and it's nice to be in South Florida! There's been some winds and spotty showers as result of Ida but the weather is still nice :) I went out fishing yesterday on a commercial boat and there were 6-8' waves! I managed to avoid getting seasick but only caught one fish for my efforts (red grouper, under legal size). My buddy Danny got a couple of Mutton Snappers though and gave me one to bake tonight (whole fish, skin and everything) and it was delicious :p

Since it was a little rainy today, I decided to paint my place and glad I did. The tenants I had living here must've been Pittsburgh Steeler fans because the place was painted yellow and brown, nasty... I picked a nice soothing color called Pueblo which I've used before in Michigan. I'm starting to feel at home :) I've also managed to find some deals at the resale shop and pretty much have my room furnished now. I'll keep adding stuff as I find it for the living room and 2nd bedroom. It's nice to be able to finally live in my place down here!

I feel a little bad for Chili as I think she misses her grandparents up in Michigan (she was pretty spoiled ;). I need to find out where the dog parks are around here so she can meet some friends, ha!

Speaking of friends, it's good to be around a couple of my oldest buddies, Dan and Ramil. We pretty much grew up together in Michigan and they've been down here for over 10 years now. I would come and visit but it was tough to just hang out due to busy schedules etc... These guys are like brothers and I can walk over to Dan's and ride my bike over to Ramil's or drive 5 minutes. He actually lives with Dan's brother who happens to be a great guy too.

So the plan from here is to continue to get my place setup the rest of this week and then enjoy the weekend. I kind of feel like I'm working again, not a bad feeling ;) I've got to start driving back up to Michigan by Tuesday so I can make it to Karmanos next Thursday afternoon for my 6th infusion. My muscles and joints don't seem to be as sore but my back is pretty sore and I've got constant neuropathy now in my fingers and feet. In fact, it's hard to feel the keys as I type this. Even though this neuropathy is pretty uncomfortable, I'd rather have it than the muscle/joint aches. I've pretty much accepted that I'll have to deal with these kinds of issues for the rest of my life. It's all about how you manage it however and like managing the mental aspect, the key is staying busy ;)

So the plan for tomorrow is to ride my bike to the beach in the morning and take a swim in the ocean :D I'll come home in the afternoon, finish painting then take a nice nap. I'm fitting in with all the retirees down here, ha!

Hope to post some pics next time of my place and some stuff around town.

Shaka :)

Just Another Day in Paradise!

2009-11-10T01:02:00.000-08:00

I remember going on a fishing charter here in South Florida a few years ago and this was the answer I received when I asked a mate on the fishing charter "Sea Mist" after asking him how he was doing! You could tell he didn't have a whole lot but got to go out on the ocean everyday and do what he loved... I think he also said it a little tongue in cheeck as things arent exactly perfect here but could be a lot worse let me tell you.

So the ride down to Delray was really fun! Had a chance to stop in Nashville which was pretty cool. I had no idea how big of a city it is! Forgot they're home to two professional sports teams the Predators and Titans. It's really clean there and you could tell the music scene looms large based on driving down the streets and hearing live music pour out of the venues.

An Elvis sighting in Nashville!

Nashville also feels and looks like a big city which it is...

I then made a stop in Chattanooga as Nashville really wasn't accessible to park and hang out due to having all my stuff (including my bike) strapped to the outside of my car. Because of this I decided against crashing in Nashville and "Nooga" seemed perfect. I'm really glad I did because I had the best BBQ meal of my life at a place called "Sticky Fingers"!! I was convinced by one of the patrons to order the combo platter which consisted of a half slab of ribs and 5-7 of the meatiest chicken wings I've ever had. You get to pick your favorite sauce and I was advised to get the dry rub and then try the different sauces for dipping. It was out of this world!
After this huge meal, I had to crash and found a hotel and did just that.

The best Damn BBQ I ever had!!

The next day I decided to make a stop in Savannah GA. What a great place! I guess the best way to describe it is with a word I don't use very oftern, charming ;) There's tons of history here and the people are really friendly. The trees are great too! I guess they shot one of my favorite movies in parts of Savannah, Forest Gump. Remember when Forrest was telling his story to those folks on that bench in the park... That was Savannah :)

Ah Savannah, where Forrest said the famous line, "Life is like a box of chocolates..." How appropriate ;)

Me and my date Chili at the famous Vinni Van Coco's pizza in Savannah!

Mighty kind of a Savannah artist to display one of his "Chili originals" outside his shop, ha!

From Savannah, I decided to check out another great old American city St. Augustine! In fact, "St. Auggie" is the oldest city in the U.S. Hell, they even have an old fort there! Also had a chance to say hello to fellow Hogdkins survivor and friend Anastasia. She is just finishing up treatment and looking forward to good news on her post treatment CAT scan of NED! Go Anastasia!

The beach in St. Auggie

They have an old Fort here the Spanish used to use when they controlled Florida in the 1600's

Great old Church in St. Augustine FL

So this brings me down to my new digs here in Delray Beach Florida! I've been busy getting my place together and it's starting to come along. I'm sure I'll find some time for fun this upcoming weekend when the weather starts to cooperate a little better. It's supposed to be sunny and 80 by Thursday so I've been using the windy sometimes rainy weather to hit all the resale shops looking for furniture to outfit my condo. I'm thinking I may go all out and actually put a pool table in my living room to go along with my bachelor pad theme, ha! We'll see... I'm here until early next week some time where I'll have to drive back up to Michigan for infusion 6 of SGN-35. There starting to accumulate (the cycles) pretty quick.

With that said, I'm still doing ok except for the same ol same ol. In fact, I woke up at 3:30 this morning and couldn't go to sleep so I thought doing a post might put me to sleep. Weird when you feel the creative juices flowing...

More on Florida and it's goings on's down the road...

Sorry it took me so long to post :)

Preparations

2009-11-02T07:58:00.001-08:00

So I mentioned I was going to post the results of my last PET/CT scan and decided that I really don't care what the report says. I mean, it's all about how I'm feeling and lately I've been feeling pretty damn ok (good would be the next step)! It's a lot to say that I feel "ok" with what I've been through in the past and how I've felt the past two years. I still deal with the same aches and pains but think I've learned how to manage them now and haven't let my life be affected by it.

As a matter of fact, I think I'm ready for another adventure! So, off I go tomorrow down to Florida :D I have an empty place waiting for me and the weather here isn't getting any warmer. The leaves are off the trees and it's time for me to go, ha! I of course will have to come back every three weeks for the SGN-35 (God willing) but that's no biggie. I think I'll do the first couple driving then when the airfares go down after the holidays, I'll start flying back and forth.

Even though I've lived in Socal for a couple of years, I've always wanted to live in Florida in the winter (since I was a kid!). It's much warmer there in the winter (both air and water) and the surfing and fishing should be off the chain! Plus, two of my really good buddies live down there so I'll have a good support system already in place.

So I think my body has finally gotten used to Eastern time again, whew! I felt like a zombie for a while during the day when my body was telling me I should still be sleeping. People complain about jetlag when coming in from the Western time zone which is 3 hours, but Hawaii is a whopping 6 hours! Thank God for Ambien...

Just wanted to say how grateful I am to be able to do all of this stuff... I played my cards right when I was working to have benefits that would allow me to maintain a decent lifestyle if I ever got sick. Granted, this only lasts till next October and I'll deal with that scenario when it comes but this has been great! Of course, not to mention the fact that I'm still physically able to get out and do all this stuff, what a blessing.

I've decided that I have to keep myself as busy as possible to keep my sanity! The busier I am, the less time I have to sit around and think of potential gloomy outcomes down the road. I still have my moments from time to time where I get freaked out having refractory cancer and thinking about friends like me who have passed but for the most part I keep this in a sealed container in the back of my mind. One thing I can't control however are the crazy dreams I've been having! I don't know if it's from the treatment or what but I have been in some horror flicks lately in my dreams, yikes! A couple of times I had to look around when I woke up just to make sure I was still here in my room and not some dark far away place. Maybe the sealed container gets opened when I'm sleeping and the demons come out to wreak havoc! All I can say is that sometimes it's nice to wake up ;)

Anyway, time to jump on the list of errands I've got written down... Just want to say time to make like the birds and fly south!!

Moving Forward!

2009-10-29T10:03:00.001-07:00

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!

2009-10-28T20:39:00.000-07:00

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

2009-10-20T22:55:00.000-07:00

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

2009-10-14T23:47:00.000-07:00

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!

2009-10-12T14:51:00.000-07:00

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

2009-10-08T09:17:00.000-07:00

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...

2009-10-06T23:33:00.000-07:00

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!!

2009-10-06T15:15:00.000-07:00

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

2009-10-05T14:03:00.000-07:00

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"

2009-10-03T13:51:00.000-07:00

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...

2009-10-02T22:37:00.000-07:00

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...

2009-10-01T17:48:00.000-07:00

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 :)

Wait a minute...

2009-09-29T22:58:00.000-07:00

Alright, enough looking back! I just re-read my last post and my stomach dropped again... I know this is only natural but realize that doing this will only weaken my resolve and just need to concentrate on continuing to live in the moment and to look forward to positive future experiences. Cue up my L.A.Hawaii trip! I just noticed it's only two weeks away :D

I already know what awaits in Socal having lived there for a couple of years. It's all good stuff ;)

Pic taken at El Morro Canyon trail in Newport Beach where I used to live. What a reward after a great ride!

However, it's just now starting to sink in that I'm gonna get a chance to explore the island of Oahu! I've been online checking out the things to do and there's tons. On my list is scuba diving, swimming with sharks or dolphins, of course surfing, hiking the volcanoes, exploring, a little nightlife and taking in the local culture. Needless to say, I'm getting pretty excited.

Stock Oahu shot 1

Stock Oahu shot 2

Stock Oahu shot 3

I'm also realizing that my time (or full time) here in Michigan is winding down. I'll probably start gearing up to move down to my place in Florida once I return from L.A.Hawaii late October. I plan on commuting between FL and MI based on my treatment schedule which is once every three weeks. It's a little scary as I have a nice little safe haven here at my Mom and Rich's place and there are days where I definately need the moral support from family (and Mom's cooking!). Even though I feel fairly decent most of the time, there are times where I feel pretty lousy (for a number of reasons). That said, I think I will be fine on my own again... Knowing myself, I tend to thrive when challenged so I'm looking forward to once again testing myself (as if I need more challenges!).

I probably wouldn't even be thinking about leaving Michigan if the weather didn't get so damn cold here in the winter! I've been gone now for the last 4 winters and can't imagine dealing with sub zero temperatures again, especially with all this muscle/joint soreness I have from the SGN-35. I think my bones would crack...! Not to mention, the sun does wonders for ones mood and helps facilitate the active lifestyle I need :) If I was to stay here in Michigan full time, I would probably do like I always used to do and that is hibernating and bitching and moaning about the cold!

By the way, have I mentioned that us Michiganders are bad asses?! (lol:) Anyway, in all seriousness, with my plan, I'll only have to deal with the cold a few days a month if everything goes like I want it to ;)

God willing, this drug continues to work and I'll feel good enough to stick to my plan.

Mind Games...

2009-09-28T22:02:00.000-07:00

I haven't done this in a while but I've been looking over my shoulder tonight... I read a post by an 18 year old newly diagnosed stage 4 Hodgkins survivor on my Lymphoma Forum and thought back to when I was first diagnosed.

I remember it all being so surreal and overwhelming. I had originally been told I had asthma and was given inhalers to "get rid" of it. After doing this for 3 months and contiuing to have symptoms I went back to my primary physician and demanded an x-ray. I'll never forget the look on my doctors face when she told me that I had some "abnormalities" in my lungs. Everything after that was a blur and of course the rest is history.

Back to the newly diagnosed 18 year old... He posted tonight with questions on what he should do, smart move. I was referred to a supposedly brilliant Hematologist/Oncologist who assured me that everything was going to be ok. He started me on the then goldstandard primary chemotherapy regimen for Hodgkins called ABVD (at least here in the U.S.). This is the same advice this young guy is being given by his Oncologist. Turns out, this is not the best way to go. There's another primary therapy regimen that was first used in Germany called BEACOPP which had been shown to dramatically increase the cure rates for late stage Hodgkins. I was rushed into my first line treatment without being given this option and it turns out it was the biggest mistake of my life (or so it seems). It was so hard to know this at the time though. I went for a second opinion (after my first infusion of ABVD) and was given the BEACOPP option by my second Oncologist at the SCCA and it scared the crap out of me. He told me about the 7% chance of developing a secondary cancer, Leukemia and the more severe side effects. I didn't want any part of it! If I only would have known... Perhaps I would have been more compelled to go down this path if I had originally been given the statistics. I felt I had a safety net though after being told that if after 2 cycles of ABVD my disease wasn't responding I could switch to BEACOPP. So, after 2 cycles of ABVD I had a PET scan and there was no evidence of disease! What I relief I remember thinking. Of course I continued on with the ABVD and because my disease is so crazy, it grew throughout the following 8 treatments and here I am today still fighting the disease. This is after subsequent double high dose chemo/radiation then stem cell transplant, go figure. Should I have started with the BEACOPP in the beginning? Would it have really mattered? Statistics say yes but statistics also say that after a clean PET scan after two cycles of ABVD cure rates are 90+ percent so go figure. I'm of course skeptical of statistics but can't help to think what may have been...

I guess you can't go back and change things right? I know looking back won't do me any good moving forward but it's tough sometimes. I made sure to tell this young guy that he should carefully weigh his options and get as many opinions before he starts his treatment. It's obviously the most important decision in his life. Sometimes (like tonight) I wish I had someone telling me the same thing when it was all going down but know there's nothing I can do about it now.

I guess everything happens for a reason though right? I guess one of these days I'll figure it out...

Lions, oh my!

2009-09-27T18:01:00.000-07:00

Ford Field Detroit Michigan

The monkey is finally off our back... When I say "our", I mean anyone who like myself is a tortured Detroit Lions football fan ;) Going back to last year, the Lions had lost 19 straight games... Today however was a glorious day and I had a chance to witness it! My buddies Mike and Pat hooked me up with a free ticket and I like to think I made the difference (with all my good luck and all ;) in the win, ha! It was pretty cool that the players decided to come back out to the field to shake hands with the fans and thank them for continuing to come to the games (even though the crowd was somewhat sparse). Afterward, had a chance to get some of the best pizza in the world, Buddy's pizza, yum! Overall, a very satisfying Sunday :)

This is my new buddy Alex (Mike's son). He loves Buddy's pizza!

Detroit Lions coach Jim Schwartz. I originally posted another pic with the guy from Reno 911 and how they look similar but decided to take it down out of respect...

Prior to today, things have been pretty mellow. The summer's winding down and I guess I'm just trying to adjust. I've still been getting out on my bike at Stoney Creek and I've realized how therapeutic it is for me. The leaves are slowly starting to change and within a few weeks will be falling off the trees. It's a bittersweet thing as it's so beautiful to see but so sad to know winter is on it's way...

A "stoney creek" at Stoney Creek Park

I've been feeling pretty decent lately and think I'm finally getting used to this SGN-35. The glucosamine is still working to ward off the aches (for the most part) and like I said before, the exercise seems to be helping with my fatigue issues. So, everything is manageable physically right now which is good. I think because of this, my spirits have been better too. I've written about this in the past but the two seem to go hand in hand... As long as I'm feeling ok physically, I seem to feel ok mentally. I think this is probably true for most people, not just cancer survivors.

Anyway, that's all I've got for now, adios amigos!

BTW, Chili was asking me why I haven't mentioned her in the blog lately...

Chili has become like a lizard sunning herself in the afternoon!

"Dad, why are you interrupting my nap!"