Tuesday, July 28, 2009

TV what a concept!

I just went through the longest stretch of my life (I think) without having a tv to veg out to at night, 2 months. Honestly, I didn't miss it that much being so busy travelling and such. I have to say though, now that I've got my big tv hooked up in my bedroom and full access to all channels and On Demand I'm pretty stoked! There's a station on Comcast called palladia and they play only live music shows in HD! Just got done watching an amazing guitarist (Jeff Beck) jamming with some amazing musicians in his band and guests popping in like Eric Clapton and others. They play videos in between shows and I'm watching Ben Harper's "Diamonds on the Inside" which is really cool. It's a beautiful song and it has all these great surfing clips. Last night it was On Demand catching up on a couple of great shows on HBO, Entourage and Hung. I've been watching Entourage for a couple years now and love it but this new show Hung is really interesting and funny! It's a pretty risque theme but tastefully and well done. Plus, it's all shot in my backyard here in the D!! Not to mention, I get to watch the ball games now without having to try and get them to play on my laptop. That was always sketchy...

I think I've been back home for over a month now and just wanted to thank my Mom, Rich and Nicole for inviting me in and making me feel so welcome :) The support has been great and I appreciate all the things you guys do...

Still no news from Dr. Ram... That said, I feel pretty good and thinking maybe I don't need any more treatment, ha! Oh well, it's fun to fantasize sometimes... ;)

Also, praying for our friend Jean who's taken a tough turn with her pancreatic cancer. She's been and continues to be an inspiration to me and I'm sure anyone who knows her...

Monday, July 27, 2009

"Just Being With Our Experience"

In practicing meditation, we're not trying to live up to some kind of ideal - quite the opposite. We're just being with our experience, whatever it is. If our experience is that sometimes we have some kind of perspective, and sometimes we have none, then that's our experience. If sometimes we can approach what scares us, and sometimes we absolutely can't, then that's our experience. "This very moment is the perfect teacher, and it's always with us" is really a most profound instruction. Just seeing what's going on - that's the teaching right there. We can be with what's happening and not dissasociate. Awakeness is found in our pleasure and our pain, our confusion and our wisdom, available in each moment of our weird, unfathomable, ordinary everday lives.

Pema Chodron

Sunday, July 26, 2009

And the Saga Continues...

Sorry for no updates lately... I've been playing the waiting game and while doing so, been keeping myself really busy so I don't have time to think about it! More on that to come... As for the SGN-35 drama the latest is; the pathologists at the SCCA went ahead and tested what was left of my tumor in Seattle. It seems like my people in Seattle are now collaborating with my people in Detroit which is great. The reason why they wanted to test it for CD30+ in Seattle before sending it to the independent pathology company (Covants?) is because they wanted to make sure that they only send Covants CD30+ slides as not to confuse them... Well, turns out apparently they (SCCA) were able to find more CD30+ in my leftover tumor! I just don't know how much they found and if it's going to be enough to satisfy Covants. So, the wait continues but at least the wheels are turning and I have a chance. Hoping to find out early next week what direction I'm going to be taking as far as continuing my treatment. Once I find out, I'll of course post the info.

As for my extracurricular activities... This summer has been great (besides the obvious!). I've been playing golf, going to ballgames, fishing, bike riding, hanging out with friends and doing a lot of sleeping! The sleeping is probably because my energy level is nowhere like it used to be which is why I don't think I could go back to work right now. Plus, I still have to take painkillers for my back and they just exasperate my low energy. That said, I still manage to whoop it up the best I can and grateful for every day that I'm able to get out and enjoy myself! The thing I'm really working on is trying to sustain a light hearted attitude... It's so difficult, I can be out enjoying myself for a while (actually forgetting that I have refractory cancer) and then all of the sudden, I get a dropped stomach feeling and I remember my reality. It's such a heavy weight to have to carry around with me all of the time... I wish I knew how to just leave it in a hidden vault but have realized that's not possible and just do the best that I can. Maybe as time goes by, I'll get better at controlling it (actually, I think I have gotten better) but I'm not going to worry about it as I think what I'm feeling is pretty normal...

Anyway, today is another beautiful day and I plan on celebrating by going out fishing downriver in Wyandotte MI with my buddy Eddie. Hoping for some Walleye, Pike or maybe even a Muskie! Even if we get skunked, it's just great being out on the water. Maybe I'll have a fish tale to tell next time ;)


My Mom told me she saw on TMZ that the "socialites" are putting sunglasses on their dogs' behinds in L.A. (apparently a trend) for some reason! So, we tried it with Chili and looking at the pick can you see a resemblence to Snuffaluffagus (sp?) from Sesame Street?!

Monday, July 20, 2009


So, I spoke with Dr. Ram today and he advised me the rest of the tumor block is on its way to Covants to be tested for CD30+. He's not overly confident that they're going to find enough in there to sign off but I'm holding out hope. As a contigency, we discussed a couple of less than desirable scenarios which I'll explan:
First, if they don't get what they need from the sample, I can get a CT guided biopsy where they'd stick a core needle through my chest and attempt to cut a portion of my lymph node and extract it. This small portion would them be tested. The downside of this is its a very small sample and with my disease expressing only a small amount of malignant cells, the odds are low we'd find anything with this method. I'd then have a nice hole in my chest that'd need to heal...

Scenario two is a different route altogether. Since I have a relatively small amount of disease somewhat closely located, radiation is an option. Dr. Ram mentioned it would be extremely effective with the bone lesions. Of course, radiation would only provide temporary relief as the disease would surely come back or progress to a different location. This may buy me enough time however until another trial comes along that I could get into.

So, my hope is still get into the SGN trial of course. Nice to know that I do have another option to keep the disease at bay for a while though! I know there are some good things waiting to happen to me down the road. I just need to be ready to accept them!

By the way, went to a picnic yesterday at my favorite park Stoney Creek. Felt good to throw the frisbee around, the football around, play a little soccer and cook out on a charcoal bbq! We were right in front of the lake and it was really festive out there. Also caught up with some friends which was nice. I was a little drained from the sun but still managed to have a great time :)

Since I wasn't drinking, Chili picked up my slack (cleaning out empty bottles :-D

Saturday, July 18, 2009

It's Never Easy...

What in the world is going on?!! I spoke with my new Oncologist yesterday and found out that at this point, I can't get into the SGN-35 trial. Apparently, the independent pathology outfit in charge of approving applicants for the trial don't have enough "slides" from my relapse biopsy from last year. The first sample (as I wrote about before) didn't have any Hodgkins cells in it. I then brought previously tested slides to my Oncologist, Dr. Ramchandran who then sent them to the independent pathology outfit and they came back yesterday saying that there were only two slides showing the necessary CD30+ antibody. Inexplicably, they said they need to have six slides!! Dr. Ramchandran proceeded to instruct the University of Washington to send whatever sample of my biopsied lymph node that was left to the company in hope that they can find enough CD30+ cells to qualify me for the study. I'm not overly confident as I don't think there's a whole lot left of that biopsied node that has been frozen at U of W. To further complicate things, there's no way I can have a new biopsy done as my disease is located in a spot where they would have to bust through my chest and perform and overly invasive surgery which would put me down for a long time... So, at this point it looks like the only chance I have to get into the trial is if they find enough cells in what's left of my previously biopsied cancerous node or I can find a strong enough (or team of) advocate/s to argue on my behalf. I'm pretty much numb to all of this right now...

On a positive note, I had a great time at Jackie's sister's wedding festivities the last couple of days! The rehearsal dinner was nice with a BBQ in the families' backyard and the wedding at the Grosse Ile Country Club. Everyone had a fun time and I was even out there cutting a rug for a while! I was able to have a few drinks without all that much pain so I think that helped! I wish the best for Jeff and Melissa who are in route to the East Coast for their honeymoon.

Beautiful little church on the Detroit River in Grosse Ile

View of the river as you exit the church

The Groom and Groomsmen!

The Bride and Bridesmaids!

"Stepping Out of Da Bug" to the reception

Sunday, July 12, 2009

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!

Wednesday, July 8, 2009

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 :)

Wednesday, July 1, 2009

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...