Wild Times!

It's been anything but dull around here lately! I had my bone marrow biopsy (4th one now) on Friday and it was probably the worst one yet... They don't use Fentanol at Karmanos but Morphine which really didn't do anything. I almost broke the rail on the hospital bed I was squeezing so tight! The sensation or pain is so bizarre... If you could imagine someone sticking a little powerful vacuum inside of your back and sucking so it feels like your bones are being squeezed from the pressure of the vacuum -- that's the only way I can describe it. Forget waterboarding, all they need to do is bone marrow aspiration and those terrorists will be telling the CIA whatever they want to hear (ok, pretty much the same as waterboarding) but that's a different story...

The adventure had only begun though with the BMB! My Mom and Stepdad Rich along with my sister were there to drive me home. The nurse who performed the procedure had been talking about this great BBQ place on Michigan Ave. in Detroit called Slows and I had to have some after the procedure! So, we jumped in the car and started driving over to the restaurant. We weren't exactly sure how to get there so we punched the name of the restaurant into the GPS. The freeways around Detroit right now are a mess so it's pretty easy to get diverted. Well, little did we know that one missed turn would have diverted us into a different country! That's right, we missed a turn and the next thing we knew we were being routed into traffic to go over the Ambassador bridge into Canada, crazy! They wouldn't let us turn around so we had to go through customs and immigration to explain what happened. The guys were smirking the whole time as I think we were like the 50th car it had happened to in the last few days. So, we finally gained clearance and were able to go back over the bridge into the U.S. and made it to Slows! I had a brisket sandwich with dill pickles and coleslaw and it was awesome. So much for the anti-inflammatory diet for a day as I thought I deserved to gourge for what I've been through.

The fun doesen't end there however! Yesterday I took a drive out to the country and bought a canoe from this guy as I've always wanted one. This is a special canoe where you can mount a small motor on the back in case you get tired of paddling. So today I decided to take it out to Stoney Creek lake near the house to give it a try. It went into the water with no problem and I mounted the small motor I also found on Craigslist out in the country. Chili jumped in and away we went! I didn't use the motor at this point as I just felt like paddling. We pretty much made it out to the middle of the lake and I decided to mess with the motor as it was pretty windy and thought I might need some help getting back to the boat launch. The next moments seemed to go by in slow motion... I was looking toward the back of the canoe and felt it lean and I tried to correct it. It was too late and the next thing I know Chili and I are in the water paddling for our lives! I had a brand new fishing pole, my cell phone, keys, camera in an otter box (waterproof) but for some reason didn't have the thing closed all the way. So, at the bottom of the lake are my phone, new fishing pole and keys! I was able to save my camera but it's completely waterlogged and not sure if it'll work again or not. Oh yeah, back to me and Chili floating out in the middle of the lake! I grabbed her and proceeded to swim over to the capsized canoe and managed to grab onto it as it was floating. Needless to say, Chili was pretty traumatized at this point :( Then, as if God was watching over us, two guys came motoring over in a pontoon boat and were able to get us aboard and salvage my new canoe! They happened to work for the park (lake patrol) and the guy let me use his phone to call my Mom who was able to bring me a spare set of keys. What a day! I need to regroup and get back out there again and probably leave Chili at home next time ;)

It's funny, even though this was pretty traumatic, I wasn't really phased by any of it! Life has taken on such a new meaning now that I just roll with whatever happens and move on... Can't wait to see what's going to happen next?! Maybe something good (oh yeah, it's all good right?!).

So, it looks like I'll be starting SGN-35 on the 20th.

Happy Sunday!

Back Home!

(Getting ready to drive under a rainbow into a massive rain shower!)



(Jackie and I in front of a large geyser in Yellowstone!)



("Where the Buffalo Roam", Wyoming)



(Me in front of "Ole Faithful" at Yellowstone Park, my mellon was in the way!)



(Wyoming is beautiful!)



(Badlands National Park South Dakota)

Well, it was a much more condensed version of my previous road trip (6 days instead of a month+) but it was fun! I'm still pretty tired from driving and unpacking today so I'll keep this brief. I'm still feeling pretty good overall except for my usual back issues. Looks like I'll be getting started on the SGN-35 trial around July 20th. I still need a bone marrow biopsy done (scheduled this Friday) and to have an independent third party pathologist re-analyze my biopsied lymph nodes taken from under my arm last summer. I had to bring my doc slides I had kept from last year as the sample that was sent from Univ. of Wash. didn't have any cancer cells in it! Interestingly, this isn't uncommon in Hodgkins. If you look at a slice of a cancerous lymph node under a microscope, you'll see that there are very few cancer cells (Reed Sternberg cells) in the slice. The reason the tumors grow is your body is sending so many killer cells to kill the few cancer cells the inflammation gets out of control. My goal right now is to keep this "inflammation" to a minimum or get it to go the other way. For this reason, I've really been trying to focus on an anti-inflammatory diet. Here's a good resource for the "Wellness" diet that I'm trying to follow http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet. Hopefully the SGN-35 will do the heavy lifting though...

I'll try and update again when I have some more energy! Totally zonked right now...

Cheers! Chris :)

PET Results...

Well, it was confirmed yesterday that indeed my cancer is back with the key word being "back". I have at least 3 cancerous nodes in my retrocrural space (behind my chest wall) in the middle of my torso. On top of that, turns out I have "FDG avid bony lesions in the thoracic spine" which explains that back pain that I'm dealing with. The latest news isn't unexpected but still pretty unsettling as you can imagine. What happens if the SGN-35 doesn't work and these lesions on my spine get bigger? The pain is pretty intense when they're "acting up" and couldn't imagine how it'd feel if they get out of control. I know I have the strength to deal with anything though... Just going to keep the faith that the SGN-35 will do it's job and dissolve those things...

So I'm back here in Seattle getting ready to pick up the moving truck and start packing it up (fun stuff to do with spinal lesions). I'm just going to take it easy and use the wheeled carts they have at Public Storage. I've got some help tonight too for the heavy stuff so it shouldn't be too bad.

On a positive note, it's absolutely beautiful here in Seattle right now! From the plane, I was able to see all 4 volcanoes (Ranier, St. Helens, Hood and ?) I'm definately going to miss living here but as they say, life goes on...


(Mt. Ranier from the sky!)

Should be a fun getting on the road for another road trip! Get to drive through the Northern part of the country this time starting with Northern Idaho and Northwestern Montana both of which are breathtaking. Good times!

Pics and stories to come...

Adjusting to life in the D

(GM HQ's Downtown Detroit aka "The Renaissance Center")


(The D.I.A., one of the finest art galleries in the country...)


(My new digs, not too shabby...)

It's Sunday afternoon and just sitting here enjoying my first cup of coffee in a while. The anxiety is finally settled down to where the caffeine doesn't freak me out too much! Plus, I've been trying to avoid anything acidic as I'm trying to keep my bodies' PH level neutral or alkaline to slow down the cancer growth (or at least that's what I've read).

Been having a good time relatively speaking! I've been pretty active running and biking plus hanging out with friends and family. Strangely enough, I've gotten into cycling from a run I did earlier in the week. On my route, I found a garage sale where this sweet late 70's/early 80's vintage Fuji road bike was leaning on the corner of the garage. I stopped my run and went up and asked the nice lady how much they were asking and she told me $10!! I told her I needed to run home and grab some cash and I'd be back to buy it. What a deal! I looked on google and found people selling these bikes for anywhere between $250-$500!! Score!! I needed to clean off some surface rust and will need to replace the tires but otherwise it runs great :) I think I'm going to start hitting some more garage sales and try and make some extra money selling stuff on ebay since I'm not working (plus it's fun).



Went to my cousin Jeff's going away party yesterday and had a blast! He's been offered a job teaching in Hawaii!! I couldn't be happier for him, Jeff's a great guy and deserves it. The party itself was fun as we played what my cousin Nick called "Polish Horseshoes"! I found out the actual name of the game is "Washers". There's basically a wooden base framed with 2x4's (3 feet square approx.) with a giant sized tin coffee can bolted down in the middle. You stand about 20 feet away and try to toss 2" washers into the wooden base for 1 point and into the can for 2. If it somehow lands on top of one of the 2x4's you get three points. First team to 21 wins. Nick and I ended up taking down the champs! Good times...


(Stock picture of Washers game, our's was much more authentic ;)

So today I relax as I'm not supposed to do much physical activity. I've got a crazy day of tests tomorrow as I've got a CT/PET scheduled along with a bone marrow biopsy. I was supposed to get my scans last Thursday but there was a mistake made by someone who sent me to an off site office for scans when my protocol calls for the scans to be done at the institution that's running the clinical trial (DMC).

Once my crazy Monday is over, I fly out to Seattle on Tuesday to begin packing my stuff for the drive back to Michigan. Should be interesting sitting on a plane for 6 hours after a bone marrow biopsy... Anyway, beyond packing my stuff, I'm looking forward to another long road trip through the northern part of the country. I'll also have a human companion this time as Jackie's going to be driving home with me :D She plans to stay in the D for a while as her sister's getting married in July.

So, overall, I have to say I'm doing ok... Just trying to remember to breathe and live in the here and now through Mindfullness. It's a process but I'm getting better at it thankfully.

Happy Sunday!

What Are You Waiting For?

"The French have a song called"Qu'est-ce qu'on Attend Pour Etre Heureux"? (What are you waiting for to be happy?). When I practice breathing in and I say, "I have arrived," that is an acheivement. Now I am fully present, one hundred percent alive. The present moment has become my true home.

When I breathe out I say, "I am home." If you do not feel you are home, you will continue to run. And you will continue to be afraid. But if you feel you are already home, then you do not need to run anymore. This is the secret of the practice. When we live in the present moment, it is possible to live in true happiness."

Thich Nhat Hanh, "no death, no fear"

Getting my head together...

It hasn't been easy and by no means am I back to normal (actually forgot what normal is) but I'm picking my spots and trying to enjoy myself the best I can. I went out the last couple of days and played some golf with friends on Thursday and my Dad on Friday. Dinners at Mom's with Rich and Nicole have been very comforting and tasty! I'm so glad I can hang with Chili again too!



Today, a good buddy of mine, Todd came to pick me up at Mom's and we went down to the ballgame at Comerica Park in Detroit. It was a great game with us winning 9-4. We also had a chance to grab a bite in Greektown and take a ride on the People Mover.



Downtown Detroit seems in better shape than what I remember before I left 5 or so years ago. We also got a chance to go down to the site of the old Tiger Stadium where they're in the process of tearing it down. It's surreal seing the old ballpark (or whatever's left of it) in shambles... I have so many fond memories of going down there with my Dad when I was a kid then as a teenager with friends. Todd and I actually managed to talk the security guards into giving us a couple of bashed up seatbacks for memorabilia. I'll miss that old place...





As far as the stupid cancer thing goes, I have a PET scan scheduled for June 25th and a follow up appt. with my new Onc. on July 8th. If everything goes according to plan, it looks like I'll be staying in Detroit to do the every 21 day trial of SGN-35. My doctor called and told me the data from the weekly trial is almost exactly the same as the data from the every 3 week trial so it's a no brainer. While the complete remission % are somewhat low, the overall response rate (or those that showed reductions in tumors in in the 80% range so I think that's pretty good. I'm not going to pay attention to the stats however as I know how far that's got me so far... I'm just going to hope and pray that this drug will keep my disease under control for as long as possible and that those who are doing the Phase 1 trial for second application of the drug show good second responses. This will mean that SGN-35 might be a viable Hodgkins maintenance drug in the future. We're talking 2011 probably at the earliest so it's still a ways off and there are so many more steps and data that needs to be accrued. With that said, I sure hope there are other emerging targeted anitbody therapies being developed as this seems like the future of cancer treatment. It's a chemo that only kills cancer cells and not your good cells (like I've had so many destroyed already). I'll post information as I receive it. By the way, for anyone interested in this stuff, here's the trial data up to this point: http://www.seagen.com/clinical/35trialsf.htm

So tomorrow my Sis and I plan to go out to breakfast with Dad and come back and hang out with Dad#2 Rich. Should be a nice day!

Figuring Things Out...

(And not what kind of tree this is... Seattle has some weird looking trees!)

So I met with the trial coordinator at Karmanos today and everything went ok. I have a PET scan scheduled for June 25th to confirm what the docs think at the SCCA (recurrence). The only loose end right now is if I should pursue the trial here which doses every 21 days. There's another trial of SGN-35 where they're dosing on a weekly basis which is supposedly showing better results but the closest center that has it is in St. Louis (to Michigan). So, I'll probably end up staying here and see what happens.

This is still so very surreal... Naturally, I'm having a difficult time accepting all of this and I think my mood the last week reflects it. It's just hard to be enthusiastic about anything right now. I know this will pass because I've always been a positive person but this is really tough...

I'm reading a book by Thich Nhat Hanh right now called "no death, no fear" and it's helping. I think times like this (as well as life in general) a Buddhist perspective is really helpful. The trick is to live in the moment and realize every day that we're alive or "manifested" (Hanh's description of life) is a blessing. I think I get most bummed out when I think of the future and the major obstacles that I will be facing (once again). Hanh really stresses the "impermanence" of everything and how nothing really dies but just "re-manifests" itself. This is a pretty weak summary but you can get the gist of it ;)

No matter what, I'm just going to continue to try and live my life to the fullest and try not to feel sorry for myself. I know this won't do me any good... I feel that I've been able to achieve so much in my life and everything else from here on out is "gravy"! I just need to do my best to remember that "gravy" comes in so many different flavors... :)


(Jackie doesn't like me posting pic's of her on here but thought this was a nice one in front of her place on my last visit and thought she wouldn't mind ;)