R.I.P. Mike :(

Just wanted to send my condolences to my friend Sharon who just lost her son Mike today to this f'ing disease. Mike was a hero of mine and I'm really sad to hear of his passing.

Here's a link to the Hodgkins Lymphoma board I'm a part of and a beautiful post by Mike's sister who also happens to be a Hodgkins survivor.

http://forums.lymphoma.com/showthread.php?t=48440

This is pretty tough news to deal with and with that said, I will appreciate life even more starting tomorrow as I head down to Florida with a heavy heart...

Chris

Migrating South

Just wanted to check in after what seemed like a long Sunday (if only by an hour). I watched my Lions once again snatch defeat from the jaws of victory, ugh...

I'm getting excited though as I'm going to attempt to leave tomorrow for Florida! It all depends if I can get all my stuff done here in time and if not will be leaving on Tuesday. I've got the Bimmer running like a champ after getting the rear wheel bearing replaced. It's like night and day as it was really vibrating before. I've had a couple of different people look it over for me and have been given the thumbs up both times thankfully. Still, I'm a little nervous driving a car with 300,000 plus miles on it from Michigan to Florida. We'll see what happens!

Life has thankfully been pretty uneventful lately. I'm still feeling relatively well and even went for my first run (actually a really slow jog) in a long time earlier this week. It was only around the park across the street (probably a mile) but it felt great and I had decent wind. I want to start doing more of that to try and keep my lungs strong. I think I'll start riding the bike and swimming once I get down to Soflo if my body allows it. I can't wait to swim in the ocean again!

I wanted to send out some good vibes to my cousin Rodney who I just found out a couple days ago was diagnosed with what else, Hodgkins Lymphoma, ugh. My family has a history of cancer but two of us now having HL is pretty strange knowing how rare the disease is. I know things will be ok for him though and wishing a drama free treatment out there in Vancouver BC.

That's pretty much all I've got for now, I'll probably update from the road or once I get down to Florida.

Sunshine, here I come!

Checking In...

Just sitting here watching some of the coverage prior to tomorrow's election and wanted to catch up...

So, it looks like the Republicans are going to take control of the House and the Democrats will probably hang on to the senate although there's an outside chance that may flip as well. It's so crazy how quickly the political tides change. I'm still in shock that our country is poised to give control back to the party that steered the country into the recession. What's going to be different this time? I've been paying attention lately and I really haven't heard any novel ideas by the GOP. In fact, Mitch McConnel, (the now minority Republican Senate leader) said the #1 goal of the GOP for the next two years is making sure Obama doesn't get re-elected. That doesn't sound like responsible governing to me.

I guess with things still pretty bad out there with housing and the job market and only slowly getting better, someone has to take the blame and in this case it's the Democrats. I think the health care legislation was the nail in the coffin. It created a perception that Obama and the Democrats weren't interested in fixing the economy but a political feather in their cap with the new Health Care Bill. This combined with the fact that the Bill isn't very well conceived (and probably needs fixing) and you have a recipe for disaster for the party in power who passed the legislation.

My hope is that instead of more gridlock, perhaps for once the two parties can work together to continue to try and fix the economy and improve the shortfalls of the new Health Care Bill. Locally, I'm hopeful the guy I'm voting for governor, Republican Rick Snyder, is going to be the inclusive leader he promises and helps to get Michigan out of the dumps. I think Independents like myself (which comprise the majority of American voters) want our government leaders to work together and find common ground in the middle. As I think about it though, it probably will never happen. With as large as this country is and with so many different viewpoints (for example the lens which rural America looks through as opposed to an inner city view) there's always going to a clash of ideals. This really struck me when I was in Holland. It's fairly homogeneous there and the population is relatively small so people can find common ground much easier (and as result have a much more harmonious society than we do here).

Anyway, I have a ton more to say on the elections tomorrow but think I'll just let the results speak for themselves. I will be very interested to see what comes next...

In a somewhat related note, today is my official first day without having private health insurance as I've taken the forced lunge into Medicare. I have to go apply for Medicaid tomorrow so I can hopefully supplement the 20% of my medical costs that aren't covered my Medicare. I feel fortunate that I'm feeling relatively well as I couldn't imagine having to deal with this crap if I was feeling like shit.

There is light at the end of the tunnel however as I'm getting ready to drive down to SoFlo next week! I'm really nervous but I'm going to be attempting to drive my convertible (and the 300+K miles it has on it) down there. I'm taking it in tomorrow morning to have the rear wheel bearing replaced and hoping everything else is going to be solid enough to get me there. I've already had the timing belt replaced and have been told that the engine in the car I have (BMW E30 325i) can run for 1,000,000 miles!! I have a feeling there's going to be some interesting blog material made on that trip but of course hoping for a boring uneventful journey. I'm really looking forward to some warm sunshine again...

To unfortunately close on a sad note, it looks like my fellow Hodgkins Warrior Mike from St. Clair Shores is going to ride off into the sunset, hopefully peacefully. His mother Sharon sadly reported today on our forum that the family has decided to call in Hospice rather than deal with the inevitable ventilator. I guess his body has been through one too many treatments and the cancer is no longer responding to any of them. My heart and prayers go out to the family.

I also wanted to send some good vibes to my friend Kirsten out in Vancouver. She's really been struggling lately after finishing up 6 cycles of Bendamustine and doing a single treatment of Vinblastine which really threw her for a loop. I hope you're back on your feet soon Kirsten and rooting for you here in the D!

That's all I've got for now; thanks again to Marie, Jim and my Godmother Aunt Shelly and Uncle Butch for your generous gifts :) I am a very blessed...

Good night everyone and good luck :)

From New York with Love

Well, just sitting here in bed at the Hope Lodge feeling like a zombie... I haven't been able to sleep the last couple of nights and thought I'd goof around with my blog. I can't wait to get my pills so I can take some Aleve (Naproxen) and get a good nights sleep. I can't take the Naproxen for 5-6 days prior to my New York trip as it causes my already low platelet count to go down even more threatening my ability to stay on the clinical trial. Only a couple hours left until I take my walk up 34th ave. passing the Empire State Building to NYU Langone, yippee!

So, as you probably noticed, I did some sprucing of my blog. It's pretty cool how Google provides tools to customize this thing. I am far from a computer guy and have to say the tools that are provided makes it seem like I know what I'm doing, ha!

I've added a counter at the bottom of the page which shows total number of page views. I was a little shocked to find out this blog has been viewed almost 10,000 times, wow!

Also, this is a little embarrassing but I've finally broken down and put a link up for donations to my clinical trial travel fund. It's tough having to travel to New York every three weeks living on disability. I'm looking into things that will supplement my income but have to be careful not to jeopardize my eligibility for Medicare (and hopefully Medicaid). My situation (or anyone who will have to fight cancer for the rest of their lives after losing their job) is difficult in that I would like to go back to work if I could find a job but who is going to hire someone who has chronic cancer (especially in this economy)? Not to mention, what insurance company is going to carry me? The laws against discriminating against pre-existing conditions don't kick in until 2014. So, for me to go back to work, I'd be taking a huge gamble that quite frankly I can't afford to take.

That said, I am managing ok for now and know that I will continue to manage. I have also been blessed to have such a generous family (thanks Mom and Rich and Karen for the recent gifts :).

Well, I think I'm going to try and shut my eyes for an hour before I have to leave.

I hope everyone who reads this has a fun Halloween (if you celebrate)!

Quick update:

Just got back and my platelets were just over the threshold (51,000) and I can continue on the trial. Dr. O wants to scan next visit and if things are continuing to shrink, he mentioned that I can petition to stretch my visits from every 3 weeks to 6 weeks which would be great. I'm also going for the record of 13 cycles! So far, this will be my 11th. Dr. O said this trial has totally exceeded his expectations and even got cocky by saying this is going to make him "even more famous" and it's going to be even tougher to see him... I guess every doctor has a narcissistic side and as long as things keep going the way they're going, I could honestly care less!

Prayers for Mike

I just wanted to solicit prayers for a fellow Hodge Warrior who happens to live not too far from me in St. Clair Shores. His name is Mike and while I have never met him, I've had the pleasure of corresponding with his Mom after meeting her on our Hodgkins Lymphoma board.

Mike isn't doing very well right now... He's been fighting Hodgkins since 2002 and has had tried more treatments than anyone I know. He's had to travel to Chicago and Minnesota for clinical trials and suffers from chronic pain in his back as he has spinal disease like me. Unfortunately, because of all the treatments Mike has endured, his blood counts are also chronically low requiring constant infusions of blood products. Because of these low counts and suspicion of disease spreading he's been taken off his latest trial, RAD001, the one I was looking into next if/once the S@N stops working. Mike is currently in ICU and his Mom reports he is almost incoherent and being made to wear mittens so he doesn't pull out his IV's. She didn't mention if they have a plan yet to try and beat back the disease which is a culprit in his downturn. I sure hope they do as Mike has been one of my heroes ever since I joined the forum and especially after finding out I was refractory.

It's so hard to sit here and know this is happening to a comrade and could very well happen to me at some point. I know I speak for all my fellow Hodge Warriors when I say this. We are all happy and inspired to hear that someone is doing well but at the same time feel sadness when hearing about one suffering.

Please join me in praying/hoping for Mike and anyone else who is dealing with this messed up disease.

Thanks, Chris

Dank je wel Amsterdam!

Me and my buddy Sean (aka Tubbs) sitting in first class to Amsterdam! Sean works for Delta and hooked up tickets for almost nothing...

Day 1

This is unbelievable! I’m sitting on this big ass jet heading to Amsterdam in first class! I’ve never flown first class before and I feel like royalty. These seats are amazing! I have my own entertainment system, with movies on demand and watching this great flick called Cyrus. I just finished a gourmet meal of beef tenderloin, shrimp scampi, snow peas and this sweet creamy risotto which was one of the tastiest things I’ve ever eaten. Prior to this, they gave us these seasoned artichoke hearts, smoked salmon, something else that was like a potato with delicious seasoning along with squash soup. And right before the main course, brought out a nice field green salad with yellow peppers, blue cheese, walnuts and balsamic vinaigrette. For desert, it was cheesecake with chocolate and strawberry topping. They served all of this with a delicious Malbec red wine. I’ve always wondered what it was like to sit up in first class and to think I’m doing this for $150 (Sean said this ticket may be upwards of $6000 if we had to pay!) He can do this whenever he wants to wherever he wants on the drop of a hat, not a bad perk. Hoping he can hook up another trip, talking about Argentina or Thailand, we’ll see….

So, since I don’t have internet connection for the rest of the trip, I’m going to try and chronicle the trip sequentially on Microsoft Word then cut and paste...
It’s 10:30 and by the time we get there, it’s going to be the next morning so time to take my pills and try to get some sleep. I don’t think it’s going to be that tough as this seat reclines completely flat, I have a pillow and blanket not to mention a lumbar massage feature on the chair that just rolls up and down my back right where my disease and herniated discs are located, ahhhhh. I can’t imagine life being any better right now! This is going to be a great trip :D

Last day:

Ok, back here on my last day! Been going pretty much nonstop except for naps and it’s an early night tonight so I figured I’d bust out the recap ;)
Overall, it’s been a total blast  Amsterdam is a visually beautiful, thoughtful wonderful city. The food is really good everywhere, there’s a ton of things to do and the people here really have a great time. Unfortunately, the locals’ view of Americans isn’t exactly positive. Sean and I investigated to try and find out why this was and the predominant response was the whole war thing (mainly Iraq). I think there has always been some disdain of American politics here but with that said, American culture is everywhere you look, crazy. There’s tons of McDonalds, Burger Kings, KFC’s etc. and of course the American pop culture like music is pretty strong. Still, the people just seem to be stand offish (word?) and we tried to make friends with other tourists which proved to be a good strategy thankfully. Me and Sean actually met some friends at the Anne Frank museum (which was interesting) and hung out with them on Sunday night.


Funny, I'm almost positive this band is from Detroit!!


Some friends we met from Australia, taken at the Little Buddha which is a really cool place


Having lunch at one of the many outdoor cafe's



Of course there are some elements of Amsterdam that are pretty striking and quite different from what we have in our major cities. This brings me to the Red Light District. I had heard about it several times and pictured a seedy, dirty place but was surprised when it turned out to be neither of those things. Yes, there are certain areas where there are prostitutes in windows and the smell of marijuana wafts down the streets constantly but never did I ever feel unsafe or sketchy. I did feel weird walking down the thing streets and seeing these young beautiful girls standing in the windows advertising themselves and wondering why in the world they were subjecting themselves to this… But then thought about the Craigslist scandal here in the states where girls are being forced into the sex trade by thugs literally not being able to leave their hotel rooms and being abused etc. I don’t know, I don’t advocate prostitution and sincerely felt sad for these girls but at least they’re not being abused and the trade is tightly regulated. Plus, back in 2006, the city bought back one third of the buildings that were being used for prostitution and required the new business to be something besides prostitution, i.e. a restaurant, bar or my next topic, a coffee shop… Yup, not only can you go in and order a delicious café, you can order marijuana from a menu! This trade, like the prostitution trade is pretty tightly regulated and definitely a part of the culture here which I think is one of the main reasons a lot of tourists visit. In fact, the locals were really skeptical when they asked me what I was doing here and my answer didn’t include prostitution or spending all day in the coffee houses. It is really fun experiencing a different culture and saying Amsterdam is different than home is an understatement…


This is the red light district! If you look closely, there are people of all ages walking around and it's not much different than other parts of the city... You see the red lights when you pass some of the alleys that run parallel to the street. The coffee shops are everywhere, even outside the RLD.


All kinds of people walking around the RLD


Inside BABA coffee shop, don't breathe in, haha

One of the coolest things to me is the fact that the main form of transportation here is the bicycle! I actually rented one today to buzz around the city one last time and it was so much fun! Someone said that there are over 100 million bicycles in Holland and I can believe it. It’s pretty crazy though as the locals ride their bikes so fast and you really have to be careful not to get run over while walking around! In fact, I was more worried about getting hit by a bike than a car or tram. When I rented my bike, I really had to get used to it and was constantly getting passed on the paths by the locals ringing their bells at my slow ass! I was thinking to myself as I was riding today how cool it is that they ride bikes everywhere as the air is so much cleaner, they’re not dependent on oil from terrorist countries and there’s a certain aesthetic beauty about people riding around on bikes in such a scenic city with all the beautiful buildings, churches, cobblestone streets and the canals which are everywhere. The canals are a great source of transportation as well and seem like a really nice thing to do with your significant other on a romantic occasion.


Bikes everywhere!!


Taken right across the street from the hotel, notice the almost full moon above the monument


One of the many glass top canal boats in the city...

Anyway, I’ve been able to enjoy this while feeling relatively well except for a couple of bouts of nausea/vomiting (probably from getting my pill schedule a little mixed up because of the major time change) and of course the chronic back pain.

I could really get used to continuing to travel outside the country like this and hoping for another trip to somehow come together soon! Sean mentioned I can use his buddy pass whenever I want so I might plan something soon, say after the holidays.

Thanks for reading this long post and hope everyone is having a nice week :)

Cheers!