Party Pics

Just wanted to post some pics from my Superbowl party. Really glad the Saints won and happy for New Orleans :) Did I mention Who Dat! ;) Being a Lions fan my whole life, it gives me hope that one day (hopefully in my lifetime) we can get to the promised land... Nothing wrong with dreaming right?!

So I'm off to the D tomorrow and apparently there's a foot of snow waiting for me, yikes! Hoping there's no cancellations or delays with my flight...

Also wanted to document that to complicate my hand problems, my lymphedema has returned in my right hand/arm. Hoping it's not a sign that the Lymphoma is growing...



Ivan, Shannon and Seth



Dan's neighbor Brian



Brian's "newsworthy" pants



Yeah, I made it too...



Was able to enjoy a couple Yiengling's! (From PA by the way)



Danny n Celia



Jam Master Jay



Ramil n Elise



Danny's cat Chuckie exhausted after setting up the party, ha!

Super Bowl Eve ;) Who Dat!!

Just been goofing around taking some pic's and thought I'd post em here for S&G's. I've got the daunting task of trying to clean my place up for the superbowl get together tomorrow and I'm trying to put it off as long as I can. In what would normally take me an hour or so will probably take me like 3-4 as my hands are now pretty much useless. I've reverted back to pre 10th grade typing class by hunting and pecking to write this, jeez...

Anyway, thought these pics were somewhat cool:



I think this fly just hatched and was drying himself on my screen :)



One of the hazards of walking to the pool...



Falling coconuts!!



The sun felt so good today laying on the beach!



Enjoying the moment!



Yesterday I volunteered to video my buddy Jay kite surfing. The day before, someone died up in Stuart after being attacked by a school of sharks.



Shark bait... just kidding. I don't think Jay or any of these guys/girls were/are deterred. Supposedly you have a better chance to be struck by lightning. That said, I won't be out there anytime soon (even if I could)

Hope to have some pics of my party tomorrow :)

Rainy Day Thoughts...

So, it's another rainy day here in paradise, ha! My buddies say they haven't seen weather like this in South Florida in years... Maybe the second half of winter down here will be better. It still beats the alternative however (i.e. Michigan winters) so I'm not complaining.

Funny, just as I typed that last sentence, the sun decided to pop out! Maybe it's a sign...

Time to go over to the pool for a quick soak... :)

Ok,I'm back!

Anyway, I have a lot of time to think right now and thought I'd throw some of these thoughts out to the blogosphere.

First, I just wanted to say again how blessed I am to have people out there who genuinely care about me and have gone out of their way to show it. Without you, I'm not so sure where I'd be right now. To you who can't handle my reality (you know who you are) and have fallen off the radar, all I have to say is what are you thinking? Wake up! Life is so short...

Next, I just want to say how proud I am of my sister Nicole :). Almost 20 years ago, she was diagnosed with at the time was a terminal Glioma brain tumor. They gave her a less than 20% chance to live beyond 2 years. The fact that she's alive today is nothing short of extraordinary! The part I'm proud about however is how she's kept going on with her life despite all the complications that the surgeries, subsequent seizures and drugs have caused her. For years, she has had to deal with not being able to do what for most of us are simple things (cognitively speaking). Now that I'm not able to do (or have great difficulty doing) the simple things (physically speaking), I have even more respect for her.

I also have great respect for my Mom, Cindy :) She too is a two time cancer survivor which is of course amazing! The thing I respect and love her for most is how she has cared for and nurtured my sister over these 20 years and now me since I've been going through my crap. No matter how bad things have gotten over the years with Nicole and now me, we know that she is always there for us doing the best that she can always putting us first.

There are so many kids who grow up and never given the type of love and support that is required... I fear that with how bad things are now, budgets being slashed everywhere (including social services) what's going to happen to a lot of these kids growing up who can't get the support and nurturing they need? This just reminded me of a movie I saw recently called "Precious". I have to say it's probably one of the saddest movies I've ever seen but inspirational nonetheless. If anyone thinks they have it bad, go see this movie.

I really don't know where I'm going with this post... I'm trying to find some "hook" or anecdote but really can't come up anything. I guess I'm kinda stuck in a state of flux right now not knowing what is going to happen and if my best days are behind me.

I do still have goals however... :) One goal of course is to get feeling back in my extremities. This can't happen soon enough and hoping it'll be reality by summer. I want to continue to travel. I obviously need my strength back for this to happen so these two go hand in hand. I want to mentor kids in some capacity. Need to figure out how and where... I'd like to rediscover my spirituality that's been sort of lost in a sea of cynicism.

Maybe I can tie all of these plans into one package?

God knows I have plenty of time on my hands to think about it... :)

Accupuncture!

I just wanted to devote this post to my cousin Susanna who hooked me up with my first session at this great accupuncturist in Deerfield Beach. Susanna, you are more than generous and I will be forever grateful. Thanks!

The session was so relaxing, I actually fell asleep! I didn't pick up any of the nomenclature but I think it was a basic session for my first time. He did mention the difference between Chinese and Japanese methods however. The Chinese method is a little deeper (the needles) whereas the Japanese method is very soft. You actually feel a little pain with the Chinese method as the needles actually go down into the muscle tissue. Tony's method was a combination of the two. Since I have such neuropathy all over, especially my legs, I told him to go as far as he wanted and I did feel it! It's not really painful, almost like pressure. It was pretty wild as he took a needle and put it right between my eyes! Once all the needles are in, he put some headphones on me with some subliminal soothing messages and I was out like a light!

Tomorrow I go back. Eventually, he's going to hook up wires to the needles and run small electrical currents through them in hopes to stimulate my muscles. He also mentioned he was going to work on my spinal area.

I'm hoping to obviously get some relief for the neuropathy from this. Even if it doesn't work, there's got to be some kind of benefit for me as the Chinese have been practicing these methods for 3000 years!

Looking forward to talking about future visits...

Dr. O March 4th

I'll keep this short as my hands are extra brittle right now but I'm heading to NYU Medical Center in NYC March 4th!

Included in this vacation package is a free stay at the lovely Hope Lodge. I'm going to stay for a couple extra days as I've never been to NYC and would like to roam around a little (in keeping with my adventurous spirit ;) My buddy Danny volunteered to be my wingman which is cool. Should be a good time!

More on the trip to come...

Time to change course, I think...

This is really tough but I've pretty much made the decision to stop SGN-35. It's not what I want to do, however I can't justify not having a life just to live if that makes any sense... I could deal with the pain from the muscle aches and the light peripheral neuropathy that was present pretty much since I started this drug. However, for whatever reason, the neuropathy has gotten exponentially worse in the last month or so and seems to worsen every day. If I keep going down this road, there is no doubt I'll end up in a wheelchair and have to rely on someone to feed and groom me. I guess you could say this is pretty much a no brainer...

By the way, just wanted to throw my support to fellow Hodger's Marsha and Kirsten who have also recently stopped the trial.

So, where do I go from here? To be honest, my options are rather limited. My first order of business is to try and reverse or stop this neuropathy. I had a nice conversation with a fellow Hodgkins friend earlier who actually ended up in a wheelchair for a while from SGN. It just so happens he is being treated down here in South Florida and was prescribed an antibody therapy called IVIG which he mentioned helped him right away. I'm going to contact his doctor and see if I can get in to see him as I'm sure there is no one else in the country who can reference a case like this since there are only a hundred or so people who have done SGN and maybe a handful of people who have had such severe side effects from the drug. I figure and hope that once I stop the SGN, some of the neuropathy will go away on it's own but Kurt mentioned this could take months and quite frankly, I don't want to wait that long. I know my time is probably limited (relatively speaking) and I want to get back to living as full a life as I possibly can while I'm lucky and blessed enough to be here. I know this sounds a little grim (sorry Mom) but I'm just trying to be realistic.

With that said, I'm not giving up hope... If anything, I am more determined than ever to get "back in the saddle" so to speak. My plan is two-fold. First, get the neuropathy under control (have a plan) and secondly and most importantly, find another option to control the cancer. Understandably, I'm a little leary of starting a new trial right now. That said, in the spirit of chasing a good quality of life, I also don't want to do anything really toxic as my body recovers from this SGN.

Cue up the famed Lymphoma specialist Dr. O'conner in New York. I've been meaning to see him eventually but didn't think it'd have to be so soon. So, my plan is to try and contact his team tomorrow and hopefully book a trip to New York later this week. My hope is that I can get in and see him within the next few weeks and with his input, Dr. Ram's input in Detroit and the team in Miami I can make an intelligent decision.

This is going to be a lot of work and quite frankly pretty daunting as I sit here and type this while feeling like crap. By the way, I have to say, I'm thankful right now that I am able to type!

Anyway, that's my update. I hope this doesn't come across as too convoluted because I have to say my state of mind is a little scattered right now... There is so much to process and assess it's almost overwhelming. I know that I will figure this out however and hopefully choose the best option for me going forward.

And the saga continues...

Night Swimming

I haven't been able to get out snorkeling like I wanted to as the seas have been a little angry... However, the pool is just a little shuffle across the parking lot (and it's heated!). Once I get in, I can just float, swim and even walk with no problems, ahhhhh :)

Think I'll be spending a lot of time in the ole pool in the days/weeks to come...