Thursday, May 27, 2010

Touching Base

Hey, just wanted to pop in here and say hello :) I've been taking some time off from cancer over the last week or so, ha! Actually, I've been keeping myself pretty busy and doing a lot of resting in between. I'm having a blast enjoying my new found strength and functionality of my limbs/extremities ;)

It's my off week this week too from the pills which is great. Even though I don't have as many stomach issues, they do make me tired so this week is a blessing.

Hoping something fun comes up for the holiday weekend... Last Sunday I went out with some friends on my buddy Jay's boat at Peanut Island in West Palm Beach and it was a blast!

It's like a giant swimming pool here!

The water is a perfect temperature, you don't want to get out!

They even have a boat out here that delivers NY style pizza!

So, hoping we can get Jay to put the boat back in the water this Sunday ;)

This has been a pretty exciting day for me as I took a drive to Miramar earlier and picked up a very seasoned 89 BMW 325i convertible! I've been looking for one of these projects for a while and was able to land a 5 speed which is really tough to find. It only cost me $1200 bucks and will definitely need some TLC. I've always wanted a convertible and it just so happens 89 was the year I graduated high school, ha! How cool would it have been to have it back then, wow... Well, it's still pretty cool now plus it's going to be a good hobby for me to figure out how to work on it. It's all about the hobbies...

I guess you can consider this the "before" pic. Immediately, I need to replace the windshield and the rear window on the convertible top. The engine runs strong and growls like a tiger! Ideally, I wanted to find an old Mercedes convertible diesel and turn it into a bio diesel but they're so hard to find... When I lived in California, I met this guy who bought an old mountain bike from me who had one. He had it retrofitted to run on used vegetable oil from Chinese restaurants. The exhaust smelled like fried rice, ha! Oh well, this will have to do even though I hate continuing to contribute to companies that jeopardize our country like BP. Even though I'll never buy gas again from BP, I know all the other oil companies are just as bad and fossil fuels are so bad in so many different ways but I guess that's the way it is for now, mwah mwah mwah....

So, it'll be back to reality this upcoming Tuesday as I have my big PET/CT scan to see if the S&N is doing anything to my disease. Like I said before, I can still feel it in my back sometimes but it seems so much better... As usual though, to borrow from a friend, I will expect the worst and hope for the best :)


Friday, May 21, 2010

Steady as She Goes...

Enjoying a delicious piece of Pizza Rustica at my new favorite pull in lunch spot!

Well, I can't sleep tonight so I thought I'd blog myself to dreamland, ha! Actually, I really don't have a whole lot to write about except I'm still feeling better everyday and my quality of life is the best it's been in quite some time, yeehawww.

I'm riding my bike now to the beach for my ocean swims so that's a new element in my quest to get back in shape. I'm also playing golf here at the local course and my game is slightly improving. I've also picked up the guitar again and working on getting my calluses back (along with trying to remember some of the songs I could play, ha!)

Mentally, it's always easier to deal with my situation while I'm feeling healthy... That said, my spirits have been up and feel much more lighthearted these days :) I also had a long overdue chance to straighten out my place which had been neglected since the Guillain Barre Days... It was a two day project but I went through and did a white tornado on my crib and it's really nice to have everything back in place again! There's a lot of piece of mind to be gained from having an organized house if you know what I mean...

Clinically, I still have some pain in my retrocrural space in my back after a couple sips of beer but it's minor. It's a reminder that the cancer is still there but I think in small numbers hopefully. June 1st will clue me in as to how much disease is lingering as I have my next scan in New York. I'll be there from June 1 to the 4th, come back to Delray for the weekend then fly off to Seattle for 10 days! Looking forward to seeing Jackie and all my other friends out there. Should be fun!

So, until then, steady as she goes as Jack White says... I can't say how appreciative and blessed I am to be feeling almost back to normal and savor every second of it. Even right now as I effortlessly type these words on the screen simply by moving my fingers and feeling the keys, something I couldn't do a little over a month ago....

Thank you God, whoever you are!

Friday, May 14, 2010

Hello from SoFlo!

"Toes in the Sand :)"

Just wanted to take a minute and say hello :) I've been back down in Florida for a few days now and life is good! The weather has been incredible and a lot of the snowbirds have flown north for the summer, yesssss!

I've really been enjoying going to the ocean everyday and swimming, it's my new thing. I start on the beach listening to my headphones (Pandora) then head out and swim against the waves or just float on my back letting the waves crash over me. I then go back closer to the beach and exercise by walking through the water fighting the currents... It's great exercise for me and so relaxing. The ocean has unbelievable healing properties :)

I have to say that I think my hands are all the way back now! Someone actually asked me to open a jar for them recently and I did it no problem, wow. My legs are doing a lot better too. I can now cover my eyes with the towel as I dry my hair after the shower without the risk of falling over. I was lacking the muscle cognition before and had absolutely no balance whatsoever. I can't run yet but hope that will come next. Speaking of hair, that's starting to grow back too :) Even though hair loss isn't listed as a side effect of SGN-35, I lost all of the hair on my legs and armpits (strange I know) as well as really thinned out a lot on the top of my head. Well, the new hair on top of my head isn't quite as noticeable but think it's getting a little thicker.

Most importantly, I'm really starting to feel like myself again and getting my confidence back. Can't tell you how embarrassing it was to try and get on a bus with my luggage and be falling all over the place. Not to mention, being in line at the drug/grocery store and not being able to pull my wallet out of my pants to pay for my items.

I don't know how long this will last but I'm trying to enjoy every second of it! I have a scan coming up May 31st and the doctor may tell me that I can no longer do this SAHA and have to switch to somethig toxic again. So, I try not to look to far into the future and just continue to live here in the moment.

I think I'm going to wind this up now as I was going to start talking about some things that are bothering me (i.e. the oil spill situation and some politics) but think it's best if deal with that perhaps next time.



Monday, May 10, 2010

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 :)

Thursday, May 6, 2010

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 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 :)


Wednesday, May 5, 2010

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