Wednesday, September 28, 2011

Quick Update

Hello everyone,

It's my last day in Seattle and I've been having a blast! Had a chance to catch up with all my friends out here and again see Seattle from a different perspective, a healthy perspective which has been awesome. Had a chance to go to a couple of great concerts at venues I've never been like the Paramount (Bon Iver) and Showbox (Gomez). Spent some time at my favorite park, Lincoln Park and the Olympic mountains were mostly out and the water was shimmering beautifully as the sun poked through the clouds. It really is beautiful here but know for sure now that I could never live here full time again... It's just too far from everything not to mention the cool drizzly weather isn't conducive for my love of the sun and it's healing properties not to mention the vitamin D!!

I wanted to share some decent news I received from Dr. Ram a couple of days ago, sorry took me so long to post it. He mentioned that from the scans that things are looking pretty decent. The CT scan didn't show any changes which I guess unto itself, isn't so bad. However, the PET scan showed dramatic improvement in my uptake levels in my "hot spots" leading Dr. Ram to believe that the reason the images on the CT aren't smaller is because once Hodgkins cells die, they leave behind a lot of inflammation/scar tissue. There were some lesions that previously showed 11-12 SUV levels and those same nodes are showing 1.8 or 1.9 now! We never use the word remission but I bet this is the closest I've been in a long time :D

So, with this news, I plan to ride this wave as long as it'll take me! I'm feeling stronger all the time and only occasionally have to take extra pain meds for my back (don't think the herniated discs and osseous erosion is going to get better anytime soon). That said, if it's only that and my occasional days where I'm majorly fatigued I will surely take it! I feel so blessed to be able to live a relatively normal life. I'm ready to start setting some goals I think and will be sorting through them in the next few weeks... That's about all I can say on that for now.

Thanks again for all of your support and prayers, they're working!

Hope everyone has an awesome day and look forward to the next update.



Monday, September 19, 2011

Sad News

I found out yesterday at Rich's 67th birthday party that my cousin Rodney - who'd been fighting Non-Hodgkins Lymphoma - passed away. One second we were enjoying the party then the next, those who got word, were in shock (we didn't say anything to the other side of the table as to not ruin the party). It made for a bittersweet day as we celebrated Rich (happy birthday!) and all that he's dealing with right now with his heart and having a PET positive spot on his lung. But the news of Rodney's passing made it difficult to enjoy the rest of evening...

I just talked to Rodney and his wife a couple of weeks ago regarding potential resources for information and my experience with similar treatments that we shared. He sounded hopeful and I thought they'd be able to find something either in Seattle or New York or Houston... I think the disease was pretty aggressive and didn't respond to anything for very long. I know it was causing a great deal of pain as it was in his hip. He did two nasty treatments, RCHOP and ICE. I haven't had RCHOP but know it's nasty and had ICE and I know first hand it's no picnic. He did them consecutively with no real break, pretty rough stuff for a 38-39 year old but much tougher I'm sure in your 60's. I've got a lot of respect for what he had to deal with...

My heart goes out to his wife Renee and the rest of their immediate family along with Randy and Melody.

Lymphoma is a horrible disease and know so many people struggling with it. I'm hopeful that all of the new drugs that are coming out now along with the new Gene Therapies, the research for a cure will continue to expand and continue to get funded. If you ever would like to donate to a good charity, the Lymphoma society is an excellent choice.

Rest in Peace Rodney

By the way, prayers and good thoughts for Mike Reed as he continues to fight MDS along with his Hodgkins. He has ups and downs and the latest I read today it wasn't the best news... Hoping for an upswing in blood counts and Mikes spirits. I'm going to put his Caring Bridge link up on my blog list for anyone who'd like to leave a positive message. The guy is a warrior, fighting Hodgkins for I think 8-9 years, legendary...

A bit of good news about me, I'm feeling better, more energized! I've just been sleeping like a bear lately and I think my body just needed the rest. Today was the best day yet as I did the backs splash in the kitchen in glass mosaic tile. I had energy to burn after running errands and making dinner. In other words, I felt normal today again, so nice :) I think I just have to make sure I take breaks between big events. I'm sure having a couple beers at each event contributes to my body shutting down... I just can't process alcohol anymore except for a drink here or there. The good news on that though is when I do have a drink, there's little to no pain in my back which gives me hope that everything is cool in there if you know what I'm saying ;) I'll know either way on Wednesday after an all day affair down at Karmanos starting at 9:30. Yup, part of being a guinea pig on these clinical trials means that they can shoot you up with radioactive sugar whenever they want. Seems like I have a PET scan every other month these days. Wonder if that's going to catch up with me one day...

Anyway, I got a little carried away, I wanted this post to be about Rodney only but sure he wouldn't mind.

Good night all, Chris

Thursday, September 15, 2011

Recovery Mode

I have to say, it's been a whirlwind since the last time I posted... Seems like right after I wrote that last one I had something going on everyday and I think it caught up with me as I'm still trying to recover.

It started with going to the ballgame two weekends ago where the Tigers were down 8-1 and there were black skies on the horizon and my buddy and I decided to leave and head home only to watch the Tigers miraculously come back and win on TV of course, ugh! Anyway, we decided to head to the free festival after in Royal Oak, "Arts Beats and Eats" where one second the guy from Foreigner was attempting to perform (it was actually pretty bad) and all of the sudden the storms that were looming down at the ballpark made there way North to Royal Oak. The next thing I know I'm scrambling to find shelter as the storm came gusting through with ferocity. It was kind of unnerving to be stuck under a tent with dozens of other people in the dark. I decided to go back out into the rain to find a better situation and found another tent that wasn't so packed but still pretty dark. That was pretty much it for the evening and jumped in the car to drive home only to find out that my street had no power, crap. I thought it would only last a couple of days - unfortunately a couple days turned into six and it got kinda creepy. So, with no power here, I decided to head down to Cleveland to catch the Tigers take on the Indians. Tickets down there were super cheap and my buddy had Hilton points so we got to stay downtown at the Hampton with parking included, perfect. Couldn't have asked for better games as we got to see Justin Verlander pitch the night game on Monday and witnessed an awesome comeback for the next day game. I even got a ball thrown to me by our best player, Miguel Cabrera. The Indian fans were so sparse we were able to sneak down right behind the Tiger dugout. Embarrassingly, when he threw me the ball, I actually dropped it, doh! The guy was nice enough to roll it back up the dugout where my buddy grabbed it and handed it to me, pretty cool!

The ball!

Me n Todd, a couple of geek baseball fans!

So, it was back to Detroit and unfortunately, my power still hadn't been turned on. In fact, turns out a Tornado came through and wiped on tons of power lines and uprooted some grand old trees. It was almost like Florida after a hurricane, tree branches and crap everywhere... Unfortunately, my ugly tree at my new place didn't get blown over but the tree I planted 13 years ago at my first place, a beautiful Bradford Pear, was blown over and all over the front yard, pretty sad.

Huge tree down in the park behind my house.

The remains of my little Bradford Pear Tree :(

As I was saying, I was now back home but it was just a shell of a home, crazy how much I depend on power! I was able to get my hands on a generator and at least had some light and could charge up my phone but that was it. The stuff in my fridge had already passed the point of no return so had to toss it all. Everything just seemed to get turned upside down, all you could hear was the loud noise of generators running all over the neighborhood, needless to say, it was tough to sleep.

I finally got my power back I think on last Friday morning thankfully. The sports madness didn't stop in Cleveland, I ended up going to the ballgame again on Friday night where they of course came back and won (ended up winning 12 straight before tonight) and the next evening, had a chance to be part of history attending the first night game at the Big House at the University of Michigan. That unto itself would've been great... What put the night over the top was the fact that one of the greatest games ever was played that evening in front of 115,000 fans. The scene was surreal, never been part of something like that. I still get a dropped stomach when I think about the energy at that game with all those people, it was something I'll never forget.

Me and Mike along with 115,000 other fans! Btw, Mike could've got big money for these tickets had he sold them but instead, invited me to go with him. Thankful to have good friends.

The mayhem after the game when Michigan scored a touchdown going 80 yards in 30 seconds, unreal!

That was last Saturday, today is Thursday and I haven't been right since. It actually started on the way home from Cleveland and hasn't resolved yet. I just don't have any energy! It's hard for me to get out of bed before noon these days. My whole body aches, especially my back. I just can't seem to get going... I had a little burst tonight and used it to clean up my place which got disgusting during the power outtage. Hoping to start feeling better tomorrow for the DIY street fair right here in my home town of Ferndale :)

I've got a scan next week on the 21st so we'll see if it's the medicine not doing it's job anymore and I have progression. I'm of course hoping for something better like maybe I'm just worn down from all the craziness but something has me a bit concerned. Let's just say I'm not as confident going into this scan as I was the last one...

Time will tell I suppose. I'll probably wait until then to update. I have the scan on Wednesday then I'm off to Seattle courtesy of my buddy Sean and the Delta buddy pass program! Chances are I'll be updating from the great northwest, should be fun :)

Until then...

Thursday, September 1, 2011

Winding down the summer

Me last week, feeling blessed :)

Sorry, I haven't felt like posting for some reason. Maybe because my normal time on the computer, at night before I crash has been spent catching up on Breaking Bad! I'm totally hooked on that show and I'm finally caught up after watching half of season two, all of three and the first seven of season 4. I can't decide if I like BB or Dexter better...

Anyway, just thought I'd check in and let everyone know I've so far avoided getting sick and thus a trip to the emergency room. I have a feeling my neutrophils have gone up. Usually when they're really low (like my last blood test), I can feel it in my throat, almost like the feeling of just before getting sick. It's weird how it always starts in your throat when your getting sick... Like I said though, that feeling is gone and I'm feeling pretty well and still enjoying the summer. Seems like it's lasted forever for some reason. The weather started off in June pretty crappy but got nice toward the end of the month and it's lasted the entire season. I think I'm ready for a change though and looking forward to the colors starting to turn...

My place is still coming along (the kitchen is almost done), have had a chance to get away up to Northern Michigan and starting to plan a trip out to Seattle to see my friends out there plus soak in some of the beautiful Northwest at a perfect time of the year to go :)

This weekend should be fun in neighboring Royal Oak as the Arts Beats and Eats festival is happening. Tons of free concerts and of course lots of cool artwork and great food. I had a blast last year and I think it's even bigger this year, Ford had a good year!

That's pretty much it for now, sorry if these posts are kinda boring. I've had a ton of things going through my mind that I've thought about sharing but have felt compelled to keep it simple. Sometimes it can bite you in the ass when you express your feelings on a public blog like this. People sometimes may get the wrong idea or sometimes I'm sure this stuff can scare people. It's hard to toe the line of being a Refractory Cancer survivor and a normal person. I so much want to just be a normal person but this little cancer thing somehow always seems to stop that from happening. It's something that will always be with me and wish so much sometimes I could just pack it up and get rid of it. How does one erase the stigma of having this disease?! It affects so many different aspects of my life in a negative way, what the hell!!!

Well, I guess I've gone from not sharing to sharing, weird how that happens. Funny thing is, I feel better already. Mission accomplished. Same reality, but negative thoughts released into the universe, pretty cool.

I haven't heard anything about my cousin Rodney so hoping things are getting better with that. I know my friend Mike Reed is still scrapping and hoping his blood counts can continue to rise and hold. Last I read about Zach is that the treatment he was on did nothing and they're hoping to get another chance at SGN-35 as it's one thing that worked in the past. The only problem is now that it's FDA approved (I must congratulate and thank Seattle Genetics for their work even though I had a horrible reaction to it) the cost of the drug is $13,500 per infusion. Yes, cancer drugs are expensive, especially ones that are just released for clinical use. Because of this, seems as if they're may be trouble getting insurance to pay for it without scratching and clawing. Crazy that someone like Zach who participated in the clinical trial to get the drug approved like myself, essentially making himself a Guinea Pig like the rest of us who partake in clinical trials, might not have the chance to use the drug to extend his life and buy him time for a cure. Something seems terribly wrong there...

Sorry about the rant, I guess I do have a lot on my mind...

Anyway, it's getting pretty late and the Benadryl is kicking in (just like allergies have been kicking my ass).

Hope all is well to the awesome people who keep up with me and this blog. I really appreciate it.

I'm out...