Monday, August 31, 2009

Go Eric!

Just wanted to give a shout out to my step bro Eric! The brave young guy got down on one knee today at the ballgame and proposed to his long time girlfriend Hillary! It was pretty cool as he covertly snuck away and put on his uniform before he did it (West Pointe grad!). Couldn't be prouder of the guy and wish him and Hillary all the best.

I'm feeling pretty decent lately except for fatigue. Had some issues this morning with my back but it's mostly resolved. I think the SGN-35 does cause a "flair" which my doctor warned me about. I'm more optimistic these days that it's actually doing something to my disease as I no longer have the numbing sensation when I lower my chin to my chest as well as little or no pain with moderate amounts of alcohol. Hope to keep it going!


By the way, I had to throw this pic up here of me using a lawn tractor for the first time! Growing up, cutting lawn everyday is how I used to make my money as a kid :) I would alway dream of having a lawn tractor like this! It was fun using it but have to admit I gave myself whiplash a couple times releasing the brake pedal too quickly, ha! Just like anything though, I figured it out and had my system down before I knew it. The ipod helped me get into a rythm! Who knew how much fun it could be cutting the grass! My other stepbrother Kenny gets a chance at it next time ;)

So, I'm leaving for Seattle tomorrow! Looking forward to going to Bumbershoot, checking out Snoqualmie Falls, going hiking at Denny Creek, having lunch at Red Hook Brewery (not to mention all the other great restaurants in Seattle). Gonna also play some golf at this beautiful place called Gold Mountain in Bremerton! I'm so lucky... Also found out Mike locked in his Hawaii ticket today so the wheels are turning on that trip too. Gotta keep myself busy!!

Finally, I'm so happy to find out Adrienne is doing a bit better but not out of the woods yet. She'll be out of the woods when she gets to go home to her family and little dogs! Keep fighting Adrienne!!

Sunday, August 30, 2009

Prayers Please

My friend and fellow Hodge Warrior Adrienne needs your prayers right now. Please feel free to check out her blog (below where I have other people's blogs listed) and leave a supportive comment. Adrienne has always been such an inspiration to me and I had the honor of meeting her back in May down in Miami. She is a remarkable young lady.

Hoping for the best for her...

Adrienne is the gal in blue second from the right.

Thursday, August 27, 2009


As I lay here in my hospital bed at Karmanos, the mad scientists are mixing up my SGN-35 and my veins anxiously await this magic potion custom designed to kill Reed Sternberg cells (Hodgkins Cells). I just wanted to say how lucky I am to have what I have... If it were 2 years ago, I wouldn't have this opportunity to try this new drug. I'm lucky that I have relatively little disease in my body right now. I'm lucky that I'm having a response to the SGN-35 (I know for sure it's doing something as I don't have any pain after alcohol anymore). I'm lucky the side effects so far have been minimal (knock on wood). I'm lucky to be alive!!

I dropped my Mom and Rich off at the airport the other day as they're going on a Mediterranean cruise, sounds fun! I was joking with my sister (like when we were kids) hooting out "PARTY!!" when they disappeared into the terminal... Those high school days were so awesome, no worries whatsoever ;) I was lucky that the parties I used to throw -- nothing ever got broken (except my friend Craig's car that he smashed right in front of my house one night...!) Ah, how I miss those carefree days!!

I've actually kinda reverted back to my lazy summer ways (the summer of "89" when I graduated!)... I remember my parents threw me a party and I lived on the money for the whole summer (I think it was around $500 or so, life was a lot cheaper back then!). This summer has been similar with me not working, sleeping in, doing pretty much whatever I want... It's been great being able to reconnect with friends I haven't hung out with in so long. I'm really excited about my upcoming trips to Seattle, L.A. and Hawaii (they're officially booked). How many people can do what I'm doing right now?! I told my Mom, if I'm going out, I'm gonna go out in style!! Of course I don't plan on going anywhere (dying) anytime soon but I've made a deal with myself that I'm going to enjoy every moment that I feel relatively healthy. With all that said, there's still a part of me that would love to go back to a "normal life". I haven't worked since April of last year and would enjoy the opportunity again. The thing is, who is going to hire me? I think my skills are enhanced after going through what I've gone through (life experience). I think working would also bring me peace of mind regarding having insurance. I only have a year left of disability and not sure what I'm going to do after. I guess everything will fall into place like it always does...

So, the SGN is done and it's time to say adios to Karmanos! If nothing else, this blog is a great time waster ;)!!

Monday, August 24, 2009

Inglourious Basterds!!

Quentin Tarantino has done it again! Went to see this film last night and have to say it was excellent (if you like his movies). Thought it was well written, acted and had me at the edge of my seat for most of the movie! Usually Tarantino makes a cameo appearance in his movies but thought it best he stayed out of this one... My favorite character was Christopher Waltz who played the evil Hans Landa. He was able to outshine Brad Pitt (which is probably hard to do). Mike Myers even makes a little cameo appearance which was a suprise (he has a semi serious role). The Bowie tune is taken from the movie by the way..

Overall it was a fun weekend except for feeling a little under the weather Saturday night and most of yesterday. I was feeling light headed and weak at the anniversary party and felt like sleeping most of yesterday, not sure why... This thing in my stomach is still bothering me to the point last night I was taking my hand and pressing my belly to try and "loosen" it up. I really can't sleep on my right side anymore either so I'm hoping for some relief this Thurday when I get my next infusion of SGN-35.

Looking forward to a nice week until then...

Thursday, August 20, 2009

What the hell!!

Sitting here watching Paladia and "ABBA the Movie" is on. Pretty bizarre... People seemed like they really used to dig their music, can't believe it! They were interviewing their fans and so many commented on their "clean image"... The music seems so whimsical, such a contrast to the time is was being produced (starting 1972 with the social unrest of post Vietnam, Civil Rights movement, etc. here in the U.S.). Things were obviously more calm in Sweden then...

Was watching the news earlier; Tom Ridge, this countries' first Homeland Security Chief, was just quoted from his upcoming book that he was pressured by his own administration into raising the terror level just before the 2004 elections. Thus, confirming that our nations security threat level was politicized, nice...

By the way, if people are going to debate health care reform, please be a responsible citizen (or elected government official) and tell the truth (or check facts)! These rumors that are going around regarding "Death Panels", etc. are ridiculous (ahem Sara Palin, Charles Grassley). I don't know what the right answer is regarding health care reform... That said, for the sake of millions of sick and those who will be sick one day, we deserve an honest debate, not scare tactics.

This is crazy... The only man convicted of the Lockerbie bombing returned home Thursday to a cheering crowd after his release from a Scottish prison?! This guy killed 270 innocent people... Shame on the Libyan people who cheered him and to the Scottish government for releasing him. Plenty of lesser criminals die in jail... Apparently Libya has a lot of oil. Amazing how oil continues to reduce the moral standards of governments...

Wow, this sounds like a pretty negative post, usually not in my nature... I guess I'm a little pissed at this thing (tumor?) that's radiating (pain and numbness) at the top of my stomach/rib area for the last couple of weeks. Maybe I'm being a little greedy hoping the SGN-35 wipes out all of my disease in the short 2 weeks it's been in my body. Perhaps I need to lower my expectations or be more patient... The truth is I don't know if this stuff is working and it stresses me out sometimes. It seems like the spots I had on my spine might be gone but this thing in my stomach is really unsettling. I've been reading that trial drugs are slower acting compared to conventional chemo. So, maybe the largest node in my retrocrural space is being more stubborn compared to the other smaller nodes/lesions that showed up on my last scan.

I alluded in a post a while ago about the "trap" of tasting freedom from disease when I was enjoying my short remission. This time around, the "trap" is getting too caught up with the possibility of this drug working. Hope can be a dangerous thing sometimes if you allow yourself to get too caught up in it, just being honest... I think I need to go back to realizing this is all out of my control and in a higher power's hands. If this stuff does work, it'll be a blessing and I will be grateful. If not, it's on to the next steps whatever they are...

I'm looking forward to a weekend of canoeing, golf and a 50th anniversary party! My trip back to Seattle is less than two weeks away :) Also, getting ready to book my Socal/Hawaii trip in October so I guess life right now ain't all that bad! ;)

FYI, next SGN-35 infusion August 27th. First SGN-35 CT scan September 10th.

Sunday, August 16, 2009

Sunday = Sleep Day

(Taken at Ellwood Grill kiddie corner to Ford Field)

Yeah, I've done quite a bit of sleeping today... I think my body needed it after being out all day yesterday. My buddy Todd and I went downtown to both the Lion's preseason opener during the day (yawn) and the Tiger game at night which was great! Actually, the Lions game wasn't all that bad getting to watch the Lions' new prodigy (Matthew Stafford at QB) in action. There was a buzz downtown and it was really cool to be out soaking it in. Speaking of soaking it in, the sun was blazing all day and maybe that's the reason I'm so shot today... Well, I'm sure there's other reasons but the sun probably put me over the top ;)

The pain in my back peaked a couple of nights ago when I woke up around 4 in pain no matter what position I layed in bed. It kinda freaked me out... I took 4 Naproxen and was able to fall back asleep. My back feels a bit better now so I'm hoping the SGN-35 was just causing a "flair" which my Doctor warned me about. The fluttering sensation I've had in my side is starting to diminish it seems which is also good. Also, had a couple of beers yesterday and didn't notice the normal sharp pain that appears after a few sips, just minor soreness. I took Naproxen before I left so I'm not sure if it's the Naproxen working or the SGN-35 (of course want to think it's the SGN-35!). I guess the only thing I'm having trouble controlling right now is a nasty travelling rash that moves around my body as soon as I itch it. It's like playing whack a mole... As soon as I itch one spot, say my knees, it moves to my ankles or hands or underarms. Enough to drive you slightly crazy. The thing about it is that it feels so good to scratch it -- so it's like an addiction if that makes any sense. Maybe I'm slightly losing it!! Wait, I think that's already happened months ago... ha!

So I'm thinking of getting out and doing some camping this week... Thought I'd bring the canoe to some nice little lake, set up my tent and drink in some nature to help relax me. I felt really grounded when I was camping on my previous trips and feel the need to re-capture some of the those feelings albeit on a smaller scale. Beyond that, I've got a couple of trips on the horizon... Leaving September 1st to go to Seattle and visit Jackie! We're thinking of checking out the Olympic Mountains and the Hoh Rainforest as well as the Bumbershoot festival over Memorial Weekend. Last year I went while I was doing GVD chemo and remember not feeling all that great. Even still, I managed to go all three days! Planning on probably going one day this year as I'm better at energy management these days ;) Also on the horizon (potentially) is a trip to Hawaii!! My good friend and ex-roomate in Socal Mike and I have been discussing flying out there 3rd week of October. He's got a buddy who lives there and my cousin Jeff just moved out there as well. Hope we can put this together...

By the way, I finally figured out how to post some other folks' blogs on my blog thanks to fellow Hodge Warrior and Blogger Anastasia. Please feel free to check in on their blogs and leave comments as we bloggers love to get comments! I'll be adding more blogs as well as more cancer resourse links you can find more towards the bottom of the page.

Thanks for reading!

Thursday, August 13, 2009

Just some thoughts...

It's 2:18 a.m. and of course I'm struggling to fall asleep... While this is nothing unusual, I wish I could get to sleep earlier so I could get up earlier but oh well. It's especially difficult tonight as I've developed this unbelievably itchy rash (to take my mind off my other ailments, ha!) everywhere, my hands, legs, arms and some other areas I won't mention... I just took a couple of benadryl and lathered myself in Sarna lotion so we'll see what happens.

Had a great time playing golf with some buddies in a pseudo league today! Things got a little out of hand when the guys started doing shots after pounding beers in the hot sun (I had 2 beers and it felt like I drank six having no tolerance!). It was so hot that our buddy Derek decided to go topless (not a pretty sight, sorry Derek!). So, because we didn't want Derek to be the only one exposed, we all decided to take our shirts off which is pretty taboo on a golf course! To kick it up a notch, my buddy Mike then decided to drop his shorts while he was putting, yikes! I've got pictures but decided against posting them out of respect for Mike's family, ha ha!!

So nice to have the relative health to be able to do things like this and forget about the big C word for a short while... Speaking of the C word, I want to figure out how to post some of my fellow Hodge Warriors' Blogs on my blog (so they're permanently posted, not manually added) but not sure how to do it. If anyone can message me how to do this, I'd greatly appreciate it. I have some friends who are having a hard time right now and it bums me out. (Alison/Adrienne). This gal is having a difficult time with chemo and also presents a compelling case for healthcare reform (Hillary) . I also lost a fellow Hodge Warrior this past week and wanted to send out prayers and sympathies to his family, (Eric from Canada) . There are others who have just received good news (Bekah, private) and wanted to say congrats! There are others who are recovering from a stem cell transplant and wanted to send encouragement (Neil) Hope to have their stories (and many others) permanently linked to this so you can help me cheer them on.

Going to try and get out on the canoe tororrow! We have a nice little heat wave going on right now and it's so nice being out on the water...

Have a great weekend everyone :)

Monday, August 10, 2009

The Good, the Bad and the Ugly...

("The Fist" located near the waterfront downtown Detroit is actually a sculpture of the legendary Joe Louis' lethal right hand. Perfect for Detroit's rough image...)

I've been getting treated at Karmanos Cancer Center which is located in downtown Detroit and have been taking advantage of being down in the city by driving around and snapping photos's (with my new camera ;). It's been an interesting experience to say the least... I wrote a little bit about the city when I compared it to New Orleans during my road trip. There's some revitalization going on downtown with new businesses, the stadiums, waterfront, etc... At the same time, the neighborhoods have really gone down hill and it's really sad. I took a drive through where I grew up and was astonished at how run down it is. Here's some shots I took with some descriptions:

(Detroit's tallest building, GM headquarters a.k.a. the "Renaissance Center")

(Notice GM building in the background, this used to be a beautiful neighborhood back in the day. Now, there are very few homes left... Most that are still standing have been abandoned)

(Abandoned old Victorian home in same area as previous shot. There is an effort however to rebuild some of these houses...)

(This apartment building that's on the same block as the previous home has been restored)

(This is the block I grew up on! My old house is the third from the corner across the street from the abandoned home)

(This is three blocks away from my old place!)

(This brand new school was built at an old park just down the street from the previous abandoned houses! There's also a skate park and pool, very strange...)

(I used to ride my bike up here as a kid and play video games and get ice cream. I also had my bike stolen from here! Doesn't look very inviting these days...)

(This sculpture is called "The Spirit of Detroit". I really hope the city can one day make a comeback. Rooting for you Detroit!!)

As for a quick update on how things are going for me... Haven't noticed too many side effects except for increased soreness/pain in my back. Also have developed a tingling/numbing sensation in my side which actually started before my first infusion of SGN-35. Looking forward to both of these nuissances going away and continuing on with my epic summer!!



Thursday, August 6, 2009

Seek And Destroy!

Received my first dose of SGN-35 and thought I'd play a little Metallica in the spirit of "Seek and Destroy"!! It's amazing how a drug can get pumped into your body, travel through the bloodstream, enter your lymphatic system, seek out CD30+ cancer cells and release a deadly toxin into the cell with the intent to kill... That's what I've just received in SGN-35, a trained killer (in theory). Dr. Ram said that out of his 5 patients that have received the drug all 5 have shown some type of response after their first scan :) The part I don't know is what type of response they had (CR = complete response, PR = partial response or stable disease which would be considered a response as well). The reason the trial is being conducted is to find out the response rate and how long the "response" lasts which will play out over the upcoming months. Hoping I don't let our SGN team down at Karmanos and I make it 6-6!

So far, I don't feel all that bad. Didn't really notice any nauseau during or after the infusion. Actually, the only thing I feel right now is exhaustion and pretty much been in bed ever since I've been home. Hoping this is the worst of it and I have some energy tomorrow.

Monday, August 3, 2009

I'm In!!

Just got off the phone with Dr. Ram and he said that I'm in the trial! Apparently Covants got what they needed and signed off... The only bummer is I have to do all my tests over again (except the bone marrow biopsy thank God). So I'll be leaving here shortly to go down and get a glucose test. Tomorrow I'm scheduled for a PET and CT scan at 4:00 so it should be a long day. Wednesday I start treatment so here we go again...

Hoping for good results with minimal side effects. Is that too much to ask?!