Sunday, February 28, 2010

Change of Plans

I have to keep this short as I don't have the patience to hunt and peck right now... Instead of going to New York like I planned, I'll be flying up to the D Tuesday for IVIG treatments. I've been officially diagnosed with Guillain-Barre Syndrome ( and because I was diagnosed in Detroit, it's too diificult to get the treatments here due to the f'd up state of affairs regarding health insurance. No need to go there now though...

So, I'll be getting the IVIG over 5 days at 5 hours per infusion due to the viscous nature of the stuff. Not exactly sure if I'll be getting infused in the home, as an outpatient or have to be admitted to the hospital. Depends on what Aetna says...

Once I get this taken care of, I'll decide what I'm going to do next to manage my disease.

Can't wait to get my hands back!!

Me before IVIG (Croc pic taken earlier this week in the Everglades)

Hopefully me after IVIG (Roseatte Spoonbill pic from the Everglades)

Wednesday, February 24, 2010


Sorry no posts lately, I've been travelling down to the keys with friends and it's pretty laid back down here!

Nothing's much changed which is good and bad...

Hope to update when I get back.

Thursday, February 18, 2010

Back "Home"

Yeah, I guess this is now home (SoFlo, at least for the moment). Just sitiing here at the pool doing my sun therapy and it feels great! I woke up this morning with a sense of calmness that was really nice (have no idea where it came from...). Just tried some takeout from this Turkish restaurant and it was pretty tasty. In case you haven't noticed, I like to indulge in as many different cuisines as I can. I have to say Meditteranean food is hard to beat when it comes to being tasty and healthy.

The ball is rolling with regard to getting treated for this neuropathy. My doctor has corresponded with my friends' doctor at the University of Miami and hopefully will soon have enough evidence to get the drug company SeaGen to agree to pay for my IVIG treatments ($5-$10K per infusion). This can't happen soon enough; seems like this is still getting worse even though I've now been off SGN-35 for over 3 weeks. I now have trouble just standing without having to lean on something or somebody. Not to mention, my hands are now almost completely useless.

The thing that gives me hope is the knowledge that this is only temporary (according to my friend Kurt) and I just have to be patient...

I have guests coming in tomorrow and they'll be able to help me out which is good. All I have to do is be a tour guide which I should be able to handle ;)

Alright, time to get back to my sun therapy, ahhhh...!

Tuesday, February 16, 2010

Fat Tuesday :o)

Well I got the results back from my CT scan and it looks like my disease has progressed a bit more, yikes. It's not wildfire but enough to give me an extra sense of urgency to figure out my next treatment plan. Unfortunately there's nothing else here in Detroit so I'll be going to yet another cancer center for my subsequent disease management program.

I also had an EMG test today which was pretty wild. Now I know why electrical shocking is used in torture/interrogation techniques! It has been determined clinically that I have patchy loss of nerve insulation and grade 3 neuropathy in my extremities. It's been decided that IVIG will be the treatment and the question now is how quickly I can get it and who's going to pay for it.

Despite all this, I had a really nice visit here in the D seeing and reaquainting with some old friends. There was a surprise birthday party on Friday and a trip to the "Dirty Show" on Saturday. For anyone interested in what that might be, feel free to google Dirty Show Detroit ;) Lets just say there was some good watching (people and otherwise)!

Also had a chance to eat a paczki (sounds like punckee) today for Fat Tuesday! I can get away with eating one of those a year and they're soooo good (except for an anti inflammatory diet)!! Also just had an amazing Lebanese meal tonight with my family, delicious :) Can't forget to mention the amazing Pastrami/Corned Beef sandwich I had for lunch at this great deli downtown at the Detroit Medical Center. I guess you could say I made the best of Fat Tuesday!

So I blast out of here tomorrow and hope to be on the beach tomorrow. It's pretty scary knowing that my disease is now being allowed to do whatever it wants to do unchecked. As long as my symptoms and back pain don't get too bad and my neuropathy starts to go away I think I can get by until I decide on my next treatment course.

Now if I can only find someone to come over and button up my shirts for me, ha!

Life is good :o)

Thursday, February 11, 2010

Off SGN-35

Well, it's official, I'm off the trial. Time for a Xanax and then re-group tommorrow. I've a CT scan Saturday and follow up neurology/EMG as well as Onc. appt. Tuesday.

My skin has just grown a few layers thicker...


Tuesday, February 9, 2010

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!

Saturday, February 6, 2010

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 :)

Friday, February 5, 2010

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... :)

Thursday, February 4, 2010


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...

Tuesday, February 2, 2010

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...