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!

Back Home...

New York was a blast!! My platelets we're above the threshold so no need to do any stair climbing this time (actually I did, but it was proactively before they took my blood the first time). Dr. O'Connor addressed the nasty back pain on my off week from the the pills by prescribing me a fentanol patch to apply a day before my last dose. Hopefully it works and better yet, whatever it is that's causing the pain decides to go bye bye...

As far a activities in New York this time around, there were some interesting stories. One, involved taking a bike around Central Park. I was trying to rent a two wheeler and there were plenty of offers... However, most required a two block walk to go pick it up and most were over $15 an hour. To my surprise, I came across a woman who offered to rent one to me for $15 for two hours, plus, she had "her" bikes waiting right at the entrance to the park -- score right?! So, I followed her over and she waves to an Islander looking guy and he proceeds to walk the bike over to me. It was a pretty decent Specialized Hybrid and I was happy. I then fully expected to give her my license, a credit card, my car keys, anything for collateral along with signing some type of contract or something. To my surprise again, she required none of these things -- collected my $15 and walked away. The whole thing seemed kinda sketchy if you know what I mean... So, for the first 10-15 minutes, I was envisioning some pissed off bike owner seeing me riding his bike, coming over and beating me over the head with a baseball bat, yikes... There was no way that this was her or anybody in her posse's bike. So, after the threat of that faded, I had a nice relaxing stroll around Central Park and probably could have taken it to my next destination but my morals and the need to preserve my Karma wouldn't let me! I figured out how to get back to where the transaction went down and fully expected nobody to be there but sure enough, there was the woman with a look of surprise on her face. As I was getting off the bike to hand to her, she shocked me by saying "are you sure you don't want to keep the bike"?!! I just nodded my head and got the heck out of there, crazy...


Me at Central Park with the mysterious bike!



Ah, drink it in!!!

So, from there, it was off to the MOMA which was really great. It's four levels and while some of the stuff is a little too far out there for me, I really enjoyed the third (photography) and fourth (classic paintings) floors. In fact, I think I must have taken a hundred pictures of all the original Van Gogh's, Picasso's, Diego Rivera's, Monet's, etc... All in all, it was a great day!



You have it all at the Museum of Modern Art, from a huge Monet painting...


To the famous Andy Warhol soup can piece...

Also had a chance to check out a couple of great bars with my friends one of which is in the top three oldest pubs in the city. It's called the EAR bar and was built in 1817. The reason it's called the EAR is because the lights on the curvy part of the B burned out several years ago and they never replaced them! Had a chance too to check out the lower east side which is more of a younger crowd but still a lot of fun.



The "Ear" Inn, est. 1817

So, this week is all about resting up for what I hope is a trip to Amsterdam this Friday. My buddy from Seattle Sean is facilitating the whole thing but there's no guarantees we can go as it all depends on available seats on the flights going out there. Kinda crazy being on standby for Europe but that's how I roll these days I guess!

As soon as I know for sure, I'll make sure to update.

Cheers!

Back in NYC!

Just got up to my room at the Hope Lodge and felt compelled to do a quick post...

They have journal books in some of the rooms and as I was setting down my room key, wallet etc. on the desk, decided to open it and this is the passage I opened to, pretty neat :)


If you left click on the picture, it'll blow up so you can read it. I guess that's why they call this the "Hope Lodge"!


So, tonight I relax, watch some baseball (Roy Halladay just pitched a no hitter for the Phillies, wow). Seeing Dr. O tomorrow at 12:45. Hoping my platelets cooperate this time and the SAHA gets to work so I can get some relief from this back pain..


This is my corner! Feels different here now that it's getting dark earlier... I <3 New York :o)

Thanks again for reading!

Sunday Update

Not a whole lot to say tonight, just thought I'd write a little since it's been a week...

I took my last handful of pills on Wednesday and while I have more energy, my back has been aching something fierce. I've noticed a pattern has developed of increased pain on my off weeks from the pills which tells me that the drug must be doing something. The pain is pretty bad though, bad enough that I can't sleep unless I increase my pain meds, ugh. It is nice though not having to force 16 horse pills down before I go to bed... The pain is in the normal spot, the right mid area of my back. Naproxen also helps but I can't take too much of it because of my platelets being so low. I took two the other night and the next day couldn't stop my nose from bleeding, pretty freaky.

I met with my Neurologist earlier in the week to follow up and see if she could do anything about the cramping in my hands and calves. Just recently, it got pretty bad a couple of mornings. The pain is so intense that I liken it to being shot (although I've never been shot). She wanted to try mild "interventions" first as she called it in having me increase my vitamin D and E intake plus Calcium. She also told me to drink a lot of gatorade type drinks plus tonic water and so far it seems to be helping. Unfortunately, she's determined that I have permanent nerve damage in my feet though as I still can't feel my toes or really bend them for that matter. It's weird, even though they're numb, they're still super sensitive if that makes any sense. She literally could take a pin and poke it into my big toe and I can't feel it but if I step on something or somebody or something (like my dog) steps on them, I feel like I'm going to go to the moon, very weird...

Had a chance to check out "The Social Network" this weekend. What a fascinating movie! If anyone who reads this is on Facebook, you definitely need to see this movie.

I've also had a chance over the week to catch up on my HBO shows on demand, Entourage and Hung and they didn't disappoint. Hung especially stood out as they really stepped up a notch the second season and it's all shot here in the D! Speaking of another show shot in the D, Detroit 1-8-7, I've watched the first two episodes and I'm still trying to get into it. I'm wondering if it's because there have been so many shows of it's kind over the years... I'm waiting for something to suck me in besides the fact that it's also shot entirely in Detroit. We'll see...

I think Gomez is finally over being hit by a car, ha! Him and Chili have really bonded and they've been playing like crazy. It's so funny watching Gomez push Chili's buttons by trying to jump up and bite her ears. Chili just swings around and hip checks him then whacks him a couple of times with her paws. She has amazing paw dexterity! I've gotta say though that little Gomez does not quit! Sometimes he manages to sneak right underneath her and bites her hind paws. I love watching those two go at it! It's harmless and it totally wears the both of them out. I'm going to miss the G man when Jackie comes to town to get him in a couple of weeks :(


Chili and G having their first shower together!


Since they were nice and clean, I had em up on the bed :o)

Anyway, that's pretty much it for now. I leave for New York on Wednesday and will be staying through Sunday. I want to get to some museums this time and thinking of maybe getting into see Letterman. We'll see how things shake out.

Finally, there's a good chance I might be going to the Netherlands on the 13th! My old buddy/roommate Sean from Seattle is back at Delta airlines and out of the blue messaged me and asked me if I'd be interested in going to Europe on one of his buddy passes. So, if everything works out (we're basically on standby) I get to fly (possibly first class) to Europe for $150!! The plan is to land in Amsterdam, explore there and maybe jump on a train to check out Belgium, Germany, Prague, whatever... I don't want to get too stoked yet because it might not happen if the flights are sold out. Plus, I checked my passport and it was expired and not sure if I'm going to get my renewal back in time anyway. Keeping my fingers crossed!

Alright, I'm out for now... Probably won't update till I get back from New York.

Happy Monday!!