Last Day in New York

"Live Your Life" taken in Times Square

Here in the waiting area on the 7th floor at NYU. Today's a good day as I will no longer have to come here once a week for blood draws and doctor visits! From here, I'll only need to come every 3 weeks to refill my pills and do the required blood draw and doc visit. This should be a lot easier on the wallet as I've been hemmoraging money on plane tickets not to mention how expensive everything is in New York. I just ordered a corned beef sandwich and a Mr. Pibbs for lunch at this deli down the street and it was $16.22!!

It's going to be nice to relax in one location for a couple of weeks and not have to worry about travelling...

That said, it's been a fun week! Had dinner with friends in the West Village last week, Saturday night checked out Harlem for a bite and then to this great little spot for an open reggae jam. I'm also getting better with the subway system after taking it down to Wall St. to watch the Hockey game and get a little New York history lesson from my buddy. He showed me the spot where George Washington was first inaugerated, the site where Alexander Hamilton is buried and also checked out the site where the twin towers used to stand. It's amazing how large of an area that is... I wish I had my camera :( Apparently politics have really slowed down the process of building something else as you'd think they would have built something there by now...

I've been doing a lot of walking on this trip and have to say it's been my favorite activity! I just put my headphones in and take in all the energy and the great people watching. I walked down to Times Square from the Hope Lodge and it was such a surreal experience! Little did I know that right after I did that walk there was a mysterious cooler (or something) that had to be opened by one of those robots as it was suspected as a bomb. It's so wild here that people have to be on their toes at all times. I was blown away to find out why they didn't have water on the golf course when I played earlier in the week. Apparently, they don't want to take the chance of someone poisining the coolers, crazy. Why is it only like this in New York? I've played courses in Florida, Michigan, California and Washington and never heard of anything like this. Why do people want to harm New Yorkers so much? I don't get it...


Times Square is crazy...

It's been so much easier with this being my off week taking the pills. My schedule is 14 days taking the pills and one week off. So, I start again tomorrow... Toward the end of the last 14 days I was given a tip of taking the Niacinamide pills with yogurt. This seemed to work much better than grinding them up as I didn't have to taste them! The yogurt coats the pills and they go down with no problem. I was worried that they might sit in my pipes and want to come back up but fortunately haven't had that problem. I still felt woozy for a couple hours after taking them but that was it.

So it looks like I'll be moving back to Michigan almost full time starting in July. My tenants in my place in Ferndale are having a baby and want to buy their own house. Can't say I blame them. So, I'll be moving back for a few months and plan to enjoy the beautiful Michigan summer. I'll still be coming down to Florida to keep up my place there as I hope to still have it for when the weather starts changing in October. At least that's the plan for now and of course in contingent upon my health holding up God willing.

Speaking of my health, I have to say I'm still feeling fairly decent relatively speaking. Like I said, this is my off week for the pills so of course that plays a big part. That said, my energy has been decent, my back pain is tolerable and my muscle function improves every day. I wish I could say the same for a couple of friends of mine. My friend Bekah has been struggling with an assortment of issues for a while now and just found out her disease has grown through the first couple cycles of SGN-35. She was on the smaller dose and there's hope that by increasing the dose it'll have a better effect. Rooting for you Bek! Also found out that my friend Marsha who was doing an experimental RIT trial had her disease progress through the first dose, ugh... I know the both of them will find the right combination though... However, it really hits home knowing that at any minute my disease can decide to get ugly on me and start progressing. Hell, it could be doing that right now for all I know. I've talked about this before but the trick is to try and keep this thought out of my mind and just enjoy feeling ok right now because you never know...

Anyway, my thoughts and prayers go out to my friends and anyone else who is dealing with this stupid disease.

Alright, I need to find out what the holdup is here as I've been waiting for over two hours now to see the doctor.

Next update to come from Florida :)

Fight2Win.org

I've been asked a few different times lately how someone would go about donating to Hodgkins research and decided to add a link to my "Cancer Resources" area down to the right. Please click on the "Donate to Hodgkins" link and it will take you to the Fight2Win.org website where you can donate.

The late Alese Coco and her family started the charity a few years back as there really aren't many resources being allocated for Hodgkins research due to the rarity of the disease compared to other malignancies. Even though it's the #1 cancer for young adults like myself, only 2000 people per year get diagnosed. 95% of the donation will go directly to research so you know your money is not being wasted.

Thanks in advance for the consideration and please spread the word :)

Chris

Back in New York

Manhattan skyline (Central Park) shot from the airplane

Finally getting around to posting an update...

Been really busy the last few days. My buddy Mike came in for a visit over the weekend and had a chance to show him around my digs in Delray and West Palm Beach. Good times!


Hanging out with Mike at Bradleys in WPB to watch Kentucky Derby. The horse I picked in the bar pool (Supersaver) won! So, I received a $25 bar tab credit, nice :)

I'm in New York now outside at Greeley Square Park as I write this. Yesterday was epic for me as I played 18 holes at Beth Page! Couldn't get on the Black course but played the Red which is really nice. It was a struggle but I was encouraged by a couple of nice shots which will definately get me back out ;) The only bummer is my back is shot and my feet are killing me. I think I got overly excited re my disease shrinking as it's (my back) been pretty sore the last few days. I'll keep powering through though because it's tolerable and Im having too much fun to stop!


18th hole on Beth Page Black


My New York friends Dennis n Paullette. Taken in Little Italy. We hung out in Soho after then took the dogs to Seaport. Saw some huge rats there...

I'm starting to warm up to New York. It's such a dramatic change of pace from South Florida living but just like everything else, I'm adjusting. There are so many people here! That said, the energy is incredible... Even though I'm tired, just walking around this place makes you feel really alive. I had my first experience at Penn Station yesterday as I met my buddy Dennis there so we could take a train to Beth Page. It's like an underground city... I almost didn't make the trip as I couldn't find him down there and the cell phone kept cutting out. It was pretty crazy seeing all of the military folk standing around with big ass machine guns. I could see why they were down there after the failed Times Square bombing attempt. God forbid if one of these psychos are ever able to set off a bomb in a place like Penn Station with such a mass amount if people gathered underground. Scary stuff...

I've got to cut this short but wanted to close out by paying tribute to the passing of a Detroit icon Earnie Harwell. I grew up listening to Earnie broadcasting Tiger games on the radio. He was 92 and one of a kind.

So long Earnie :(


Earnie Harwell at Tiger Stadium

A Nice Couple Days in the Life!

I'm exhausted... It's nice though because I finally have my life back! Yesterday, I went on a long walk on the beach then swam in the warm Atlantic Ocean after :) I then jumped in the car and went to the golf range and hit a bucket for the first time in a while. I'm still nowhere near 100% but it feels great to be able to do things I love again.

Today was awesome too as I got up at 5:15 this morning and went out fishing with Dan, Mike, Todd and Mr. Nalezyty. We had a great day! Got an African Pompano, and a bunch of nice keeper Snapper. I landed/reeled in a nice Mutton and Vermillion Snappper, big fun! We ate our catch tonight over Mike's with the family and it was great.


Nice African Pompano!


The Nalezyty's just after Dan reeled in the African Pompano


Me posing with the fish even though I didn't catch it, ha!


I did catch a couple of the Snappers in this cooler though ;)

My other buddy Mike is coming in tomorrow from Cali for a couple of days so that should be cool.

Time to crash and rest my weary body...

Going Home!

Hopefully this will be the last update from my phone as they never did fix the Internet at the Hope Lodge... Sitting here at LaGuardia airport and just forced a breakfast sandwich down. I'm having some real difficulty with my appetite and have been prescribed Megase (sp?) to help stimulate it. If this doesn't work, they're going to prescribe me Marinol next time I go back. They say it works better than Megase but because of insurance issues they have to try the cheaper one first.

I'm cautiously optimistic but think the S@N might be doing something! I know it's only been a week but I can now watch tv while laying on my back! There's still a little discomfort there but not like before. I hope I don't jinx myself but just wanted to put some positive news out and hope it continues :)

I've figured out the best beverage to mix the Niacinamide pills and through trial and error orange juice is the winner! It seems the bitterness of the oj mixes with the nastiness of the N and makes it tolerable. This is of course after I grind down the 12 N pills into a powder with my coffee grinder! I had to make sure and clean the thing out well as the last thing I need is airport security questioning me why I have a mysterious white powder coating a coffee grinder!

So like I said, I'm excited to head back to SoFlo. It feels like I'm going on vacation or something, ha! Going out on my buddies' boat on Thursday as the fishing has been slamming lately. Dan and Mike's Dad was down last week and they got a Wahoo which is one of the most prized fish in the ocean both for prestige and eating. The things are huge and swim over 50mph! Needless to say, if we hook one, it'll take a team effort to get it in.

Anyway, getting close to boarding so I'll wind this up. I come back for another 8 days May 3rd then I have a couple weeks off!

The Journey Continues...

Hangin in there...

This will be short due to the wireless being down for the last few days and having to update from my phone! Everything is going relatively smooth after the rough start. I've got some pretty annoying and uncomfortable GI issues and some fatigue but that's about it. Had a chance to get out and walk around the city and took the subway back to my room. For whatever reason, I really feel accomplished being able to figure out the NYC subway system. I've still a ways to go but it's kinda fun and a good way to learn the city.

Met up with my friends Dennis and Paullette last night in Hells Kitchen and we watched the Wings game. There were a couple of Detroit fans there besides us so that was cool. Also had a chance to hang out for a bit with fellow Hodge warrior Bekah as she was here for the SGN-35 trial at NYU as well.

Mostly though, I just hang out in my room and rest. I've got to get used to these stomach issues and know I will. I have no idea if the drugs are working yet as I can still feel the soreness in my back/spine.

I'm actually looking forward to going back "home" to Florida. I think I finally might be ready to get back out to the golf course and out fishing (and actually reeling in some big fish). Also looking forward to getting back into the pool and ocean. The city is great but think I prefer the sound of exotic birds over honking horns...

Anyway, that's it for now, hope alls well to whoever is reading this :o)

It's On...

Well, it wasn't easy but I've finally started the SAHA/Niacinamide trial...

I didn't think it was going to happen.

I got to the airport on time in Detroit, the flight was smooth and even managed to find a $10 bus from LaGuardia to Manhattan so everything started so smoothly. The only problem I had was a nagging headache that day that I was able to control with Advil. Unfortunately, the headache turned into chills and the chills turned into sweats and before I knew it, I had a 102.3 fever in my room the night before I was supposed to start the trial, ugh...

So, here I was, in my room thinking that there was no way they're going to let me start this trial with this fever. So, I took some more Advil, went to bed and hoped for the best. Turns out, I woke up, took my temperature and the fever was gone! I think I must have had a delayed reaction to my last infusion of IVIG. So, re-energized by my good fortune, I decided to walk to NYU from my room which is about 1.4 miles. This is a pretty big accomoplishment for me as I haven't walked that far in several months. It was a nice day so I put my headphones in and went for it. It wasn't that bad and actually invigorating! I was pretty sweaty by the time I got there so that was kinda weird... No biggie though, I went up to the counter, got the paperwork, filled it out and waited for the next steps. 45 or so minutes later, they called my name and I went back for blood draw. The guy who was to draw my blood barely spoke English and I was trying to ask him if he could use an IV that could be used for blood draw and PET/CT scan (20 guage needle) so I didn't have to get poked twice.

This is when the wheels fell off the wagon..

I was told to go back out to the lobby and wait again, ok. An admin assistent came out to get me a couple of minutes later and we walked down to the radiology floor where she was going to request them put the IV in and also draw my labs. They didn't want to have any part of it, ugh... So, we then went back up to the seventh floor where Dr.O's P.A. hurridly took the initiative of placing the IV, doing the blood draw and then telling me I needed to rush down to the 2nd floor to get my scan, which I did. Unfortunately, by this time, the radioactive sugar that they were supposed to inject me with had expired and the PET/CT scan was off and any hope of starting my new trial on the planned start day seemed lost. I needed to regroup because at this point, I was pretty pissed. So, back I was sent out to the lobby to wait while the people who are resonsible for my well being devised a plan. Out comes Sean, the trial coordinator who happpens to be a great guy. Sean carefully apologized and explained what happened. I won't even go into the reasons because they don't make sense to me. He was able to order another PET/CT from Park Ave. Imaging and had a car come pick me up to take me over there. I ended up getting scanned and finally got back to my room at around 7:30 after starting my day at 11:30. Long day to say the least.

Of course I wasn't able to start the SAHA on Monday as planned because they needed the results of the scan.

So, I regrouped that night, pretty much passing out as soon as I got to my room. I walked back to NYU the next morning and was given the results of the test which weren't as bad as I thought they were going to be. Yes, my disease has gotten bigger in my "paraspinal" area where I've been having the pain and discomfort. The largest node (among 3-4) is 1.3 x 2 x 2.8 cm. It didn't seem like there were any new areas of disease which I was grateful for, only some "suspicious" areas that we will keep an eye on.

Now with all of that out of the way, I was given my pills and took my first dose yesterday. There are 12 Niacinamide pills and 5 SAHA pills (not the 20 I originally thought). That said, I felt a little woozy yesterday and slightly woozy today after taking my second dose but nothing I can't handle. I took a zofran and attivan and think I'm going to go down for a nap.

It's definately been an eventful start to my NYC trip! Looking forward to getting out to see more of the city in the next few days!

Here's what I've got so far...


Had coffee with my cousin Jeff's girlfriends sister at my favorite little park. Turns out Sara is also a Hodgkins survivor who was diagnosed around the same time as me. Thankfully, she's clean now and pursuing a degree in fashion design here in NYC.


This guy was enjoying some of the sunshine on 34th ave! Just when I think I have it bad, don't need to look very far...


The Empire State building is on my walk to NYU from the Hope Lodge!


I kept envisioning King Kong climbing up and fighting off the airplanes while he had the girl in his hand...

I'll update when I can...