Sunday, January 31, 2010

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...

Saturday, January 30, 2010

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...

Thursday, January 28, 2010

Beach Bum

That's kinda what I feel like lately... Now that I've lost most of my strength throughout my body, I'm pretty much relegated to hanging out at the pool or the beach as my big activity for the day. There are so many things to do down here... I guess things could be worse but I'm really struggling mentally to accept that I'm basically useless physically. I've always been into being active, playing golf, biking, hiking, etc... Now, simple things like carrying groceries into the house, opening jars, peeling bananas and brushing my teeth are a challenge. I've also noticed that my muscles seem to be shrinking or dissolving, strange. I know for sure my wrists and forearms are smaller just by taking my hands and wrapping around my arm not to mention just looking in the mirror. I think I have to investigate getting into some type of physical therapy program to try and reverse this muscle atrophy if that's possible.

I've wanted to try and keep this blog more positive going forward but this is just so hard to deal with. I'm hoping all of this is just temporary but realistically know that as long as I continue with this SGN-35 things will only just get worse. I worry how I'm going to take care of myself living on my own. I just don't know what to do. Like I mentioned previously, I have an appointment with a neurologist on the 11th and maybe she'll have some answers for me.

Until then, I just have to be grateful for the things I can still do and one of them is swim! :) So tomorrow, I'm going to hope for calm seas and try and get out snorkeling around here. My buddy Jay has an underwater camera and I'm gonna see if I can borrow it.

Hoping I can post some cool underwater pics on my next entry :o)


Wednesday, January 27, 2010

Sun = Vitamin D!

Ahh, the sunshine is back! We've had some unseasonably cool and cloudy weather down here lately and the last couple days it's been super nice :D

Went up to Jupiter yesterday with my buddy Dan to visit buddy Larry. No, not the planet but Jupiter FL, ha (cheesy joke)! It's really beautiful up there and is a whole different vibe than Delray/Boca. They actually allow dogs on the beach (too bad I didn't have mine) :( The fishing is really good up there too but unfortunately didn't have a chance to get out. At this point anyway, I don't think there's a chance I could reel in a fish due to my hands. Maybe I could get an electric reel or something. Anyway, took a walk out to the beach and these guys were fishing off shore. It was interesting as the bait they were using were sand fleas! One guy would wait for a wave to come in with a basket type thing shaped like a dust pan and once the wave was going back out to sea, he would dig the basket into the sand and sort through what was in it. The sand fleas are the size of a nickel and look like a pre-historic creature. I guess they're great bait but we didn't see anyone catching anything...

The sand flea, cute little bugger eh?! ha ha :D

I wanted to quickly say too that I got some great news last night in that my Hodgkins friend Bekah is out of the hospital and home with her mom's. They couldn't figure out what was causing her fevers and vomiting but hoping home is good medicine for her. Go Bekah!

That's all I have for now, the fingers just aren't cooperating. It's mostly my right hand. I can't lift my ring finger or pinkie up to hit the higher keys.

My legs seem to be pretty much the same. I'm getting more used to walking around slowly. There was a moment yesterday however where I got a little freaked as we were checking out boats on a dock and I momentarily lost my balance and almost fell into the water! I learned my lesson and made sure to stay away from edges from there on out...

Alright, time to go outside and soak up some Vitamin D :0)


Monday, January 25, 2010

Finger therapy

Not a whole lot to say today but I feel like I need to post to keep my fingers limber as it's getting tougher and tougher to type. Need a break from palladia although it's pretty good as they're showing clips from the last Coachella concert in California. The lead singer of the Flaming Lips is rolling over the audience inside a giant clear beach ball, pretty funny. The clips of the drive out there brings back memories of driving to Joshua Tree N.P. when I lived in Socal...

Went to a nice BBQ last night that my buddy Dan put on. He made his own BBQ sauce and did up some wings, pork tenderloin, Brazilian sausage (his wife is Brazilian ;), along with beans, potato salad and rice. It was delicious! Had a chance to meet some of his neighbors too which was cool. One of them, Judy, is a ghost writer! Never met a ghost writer before and she had some pretty interesting stories. She couldn't tell me names of her clients however which I guess makes sense... Apparently she also does some ghost writing for another ghost writer which is wild. So, when you read a book, I guess you never really know who the actual writer is. According to Judy, you don't have to disclose this information.

Also had a chance to meet this cool cat named Ivan who is quite the artist. He's a singer/songwriter and I had him play my guitar since I can't play it all that much anymore. He performed in Dan's living room and was belting out his own stuff, some Rush tunes and Gypsy Kings which I've never really heard before. Ivan is also dealing with health issues, i.e. diabetes and heart problems. The guy is full of life though and really smart. He's getting ready to start a disc golf company and shared his business plan with all of us. For anyone not familiar with disc golf, it's pretty much the same thing as regular golf but you throw special frisbees (or discs) instead of balls and clubs. It's a growing sport as there's been 150 new courses that have been built in the last 5 years. We're going to check one out around here that's part of a nature preserve. He was telling me there's iguana's and exotic birds all over the place. Hope I can still throw the old disc...

Ivan belting it out at Danny's place. Danny's artwork in the background. Pictures of his stuff don't do it justice...

Dan n Celia, the hosts with the most...

So when I was back in Michigan, I finally had a chance to replace my dog Chili's collar so she won't have to walk around naked anymore! I took it off of her when we were travelling north to Michigan from Florida this fall. We were at a Motel 6 in West Virginia and because she sometimes would wake me up with the noise it makes when she "shakes it out", I would take it off. Well, this one time I forgot to "dress her" in the morning and left it behind. It was weird when I called a day later that no one bothered to turn the thing in. I mean, who would want an old dog collar with the name Chili on it?! Oh well, I think she likes her new one and it's actually not as noisy as the old one...

She's a good sport letting me take a picture of her new duds, ha!

Chili "fully extended" :o)

Well, it looks like the two best teams will be playing each other in the Super Bowl! I think I'm going to have a party at my place for it so that should be fun.

All right, that's all I've got, my finger therapy is complete. When I first started typing this, it was a stuggle. As I go through it though, it seems like my fingers loosen up and it gets a little easier. I'm not sure how much longer I'm going to be able to type though, bummer. Another obstacle that I will overcome, no worries...

Happy Monday everyone!

Thursday, January 21, 2010

SGN #9

Just met with Dr. Ram and we're good to go for another infusion. Turns out his wife is a neurologist here at Karmanos and she specializes in chemo related neuropathy! I think I'm in good hands with the Ramchandran's :)

I finally discussed my last PET/CT with Dr. Ram and he confirmed the basically stable report. He said he is starting to learn more about my disease. There are some people who are on the trial that get an immediate response, go into remission, then within a few infusions find their disease progressing. I have to admit that after my first couple of scans, I was disappointed that I couldn't achieve remission. After talking with Dr. Ram however, it seems like my disease trait is that of a slow growing type that likely won't go away but also won't get real agressive (hopefully). He mentioned that I may be able to stay on this drug for a while. This of course is good and bad news. It's good news if we can figure out how to control the neuropathy. However, if this neuropathy gets worse and I can no longer use my hands or walk of course it's bad news. Hoping Mrs./Dr. Ramchandran can work some magic for me in 3 weeks.

We also discussed the issue of my eroding vertebrae. He mentioned it was pretty small and it appears that my body is "filling in" the area that has been infiltrated. Its confusing to me though as the cancer is still active in there. He told me that they'll be keeping a close eye on it. I may need surgery down the road which of course is always risky... He also brought up radiation again although did mention that radiating the area would further weaken the bone. I guess I'd have to choose the lesser of the two evils if and when we get to that point.

Anyway, that's about it for now. I'm here with my Mom and Sister today and conned them in to taking a picture, ha! My Mom is making me a little bear that's supposed to be from my younger cousin (her idea, very sweet) who can't do it herself because of her eyesight. So, thanks Kristina and Mom!

My Mom and Sister Nicole cheesin in the room with me.

My nurse Melanie, she's very nice :)

Need to come up with a name for this bear... Is it me, or does he look like he's on something...?!

Wednesday, January 20, 2010

Rants from the ATL

So here I am waiting in Atlanta for 3 hours for my connecting flight to Detroit. I just walked out of the men’s bathroom completely disgusted as usual. This is gross so I apologize in advance… Why is it that some guys going to the bathroom feel so compelled to grunt and groan while they’re going?! I mean it’s like they’re giving birth or something. I can’t think of too many things in life that are more disgusting than this and I’m sorry I had to write about it but it’s that disturbing. If I weren't at the airort writing this, it never would've made it to the blog but I guess everything happens for a reason right?

So, now that I’ve got that off my chest, I’ve got to find a way to pass the next few hours… What better way than to compose a blog entry? It’s amazing how fast time flies by when I write these things. Lately, because of slight ADD (I think due to my prognosis) I can’t seem to get into any books. So I blog… It’s what I do, good or bad, who knows…

My infusion schedule has been changed a bit but shouldn’t be a big deal. I’m due for #9 tomorrow. I need to have a serious conversation with my oncologist regarding my ever increasing neuropathy. It’s getting more and more difficult to type and getting around is getting tougher. My dilemma is I don’t want to become wheelchair bound but I want to continue to control this disease. I guess you would call this a conundrum...

Interesting watching the news at the airport with the Haiti disaster, the election in Massachusetts and Obama’s one year in the books. What else can you say about Haiti, my heart goes out to those people, what an epic tragedy… As for the election of a Republican senator in traditionally Democratic Massachusetts (who ran on a platform against the healthcare bill), it seems the people have spoken. I think the Democrats have lost the trust of the American people (for the moment) for various reasons. I also think they underestimated the grip the powerful Insurance lobby has on the Republican Party and how effective scare tactics are (regardless of the truth, see weapons of mass destruction). C’mon, the Republicans controlled all branches of government for six years and could’ve easily passed reforms that are obviously needed in the current financially unsustainable system -- a system that discriminates against and excludes millions of Americans. I happen to be one of them who is stuck with a pre-existing condition and will have no chance of acquiring affordable insurance if I’m ever able to re-enter the workforce (if things don’t change). The Republicans claim the price tag is too high. That said, never once did I hear a peep from the G.O.P. regarding the 1 trillion dollars that was being allocated to fight the war in Iraq while they passed the first tax cut in our history (while at war).

It just pisses me off that because of a colossal mistake/s made by the previous administration would lead this country down a spiraling path that we can’t fix major problems here at home like healthcare because of the debt.

This brings me to Obama’s first year in the books. While I think he’s made some mistakes (i.e. the way he went about trying to force healthcare reform rather than building consensus among the American people) I think he’s done ok with the hand he was dealt. Think back one year ago today… All you saw on television was how we were getting ready to head into the second great depression, the stock market was ready to crash. The banking system as we know it was ready to fail. Deregulation of the mortgage/financial industry brought on by the Bush administration led to the worst housing crisis in decades. People were losing their life savings. 700,000 jobs per month were being lost. We were fighting and spending billions (actually a trillion) on a war in Iraq that was making our country less safe and fighting another in Afghanistan that lacked a coherent strategy. Let’s just say the situation was grim.

That’s a lot of problems to clean up in one year from a disastrous 8 years by the Bush administration. Again, could Obama have done some things differently or better?, hindsight says probably so. I wonder what ole GW would’ve done if Clinton handed him such a mess, hmm….

Anyway, I know political talk turns a lot of people off and probably has caused a lot of people reading this to click away…

However, I feel it’s important to talk about. In an ideal situation, I’m hoping that people can put aside political differences and come together to put this country back on track. I think it’s going to take cooperation by both political parties and putting self interests aside for the betterment of the country. Ha! Like that will ever happen… Cynicism aside, if Obama wants to get elected to another term, he better learn how to mitigate those who want nothing but to see him fail. He also needs to figure out in the next three years how to build consensus and get the majority of Americans behind him again.

Again, sorry for the political rant and the disgusting bathroom reference! I guess I don't have a lot of good things to say today. Tomorrow I get to focus on much lighter stuff like whether or not I should stay on a drug that is slowly paralyzing my body, ha! I think Friday will be a good day...

As they say here in the D, it’s all good in the mother f’n hood…


Monday, January 18, 2010


Happy Birthday to Dr. King. What a great inspirational man...

I've had a fun weekend :) Went to see Avatar on Friday and really loved it... The visuals were absolutely stunning as I expected them to be. I was pleasantly suprised however with the story and underlying message. It was cool how the species that lived on Pandora were so in tune with their environment, literally. Actually, they were one with their planet. I truly believe that we as humans are as well but we just don't fully realize or understand it yet. Hopefully there will be a day when we can respect and nurture our "Mother" (as they referred to Pandora in Avatar) instead of exploiting and destroying it.

Had a chance to hang out last night with Ramil's son and my little buddy Rulan or "Ru". What a cute kid!

Mmmmm, Pizza from the Mellow Mushroom :D

Me n Ru chillin on Atlantic Ave!

Also had a chance to check out this incredible old hotel in Palm beach called The Breakers. It's right on the ocean... It was originally built in 1896 and re-built in 1926-27. The place is a sight to behold both inside and out. It just so happened, in one of the wings of the hotel, they had a fashion show going on for wedding gowns and tuxedo's. I was goofing around and pretended like I was part of the photography core and was snapping shots with my camera phone! I can't believe they didn't say anything to me, funny!

I'm sure the professional photographers from the wedding magazines were wondering what this guy with shorts and a t-shirt was doing taking pictures with his camera phone... ha!

The grass out here was like the nicest greens you'll see at a golf course. Nice on the feet ;)

Nothing really new to report on the cancer front... I did however get a scary message from my friend Marsha who just quit the trial. She sent me a PDF chart on peripheral neuropathy and based on my symptoms, I figure I'm between a grade 2-3. The scary part is that stage 4 is paralysis, yikes. If this keeps getting worse, I have to quit the trial. It's a no brainer. In the interim, apparently there's a drug out called IVIG that is really expensive but supposedly effective in combatting what I'm dealing with right now. The friend who told me about it has a husband who became wheelchair bound for a while from the trial (he stopped the trial of course). The company who makes SGN-35 paid for his treatments and he's doing much better with his muscle strength and is walking again and is getting stronger. Of course he still has to deal with his cancer and now is doing a conventional chemo called gemcitabine which I've already had in a previous cocktail called GVD (G=gemcitabine or gemzar). Anyway, I don't intend to get to this point but have to be very careful in watching this.

I of course will keep you posted...


Thursday, January 14, 2010


Well, happy to say I'm still keeping myself busy. I finally finished the hole in the wall kitchen project and last night built myself a tv/stereo cabinet out of pine boards from the home depot. Ever since I've been a kid I've loved to build things out of wood or just build things in general. I remember my parents would bring home a plastic model car and I'd have the thing put together in a blink of an eye. I always struggled however with finishing the fine details like painting and decals etc. and think I'm still the same today. I have to say though that both projects came out ok and yeah, there's still some small details I could work on but not overly concerned... Some things don't change...

I'm just waiting for the thing to collapse, ha ha...

Nice to be able to watch the tube or talk to guests while in the kitchen :)

I had to go up to West Palm Beach today for a meeting and decided to drive around downtown (which is nice). I decided to take the long way home down A1A and took some random shots with my phone to capture the memory. What a scenic drive!

Pulled off the road and took this with my phone, not bad...

Another with my phone, the stairs are inviting!

Great little park on the ocean. Another beautiful sky!

Always nice to drive through a tunnel o trees ;)

I have to tell a sad story to finish this unfortunately. I was at Publix getting some groceries and the guy that bagged my groceries insisted on helping me bring them out to my car. I never really accept the help when they offer but for some reason I let this guy roll my cart out to my car. When we found the car, I looked at the gentleman and he had a sort of blank look on his face. I recognize the look as I see it all the time in the cancer centers over the last couple of years. It was silent for a moment then all of the sudden in broken english the guy told me that he lost several family members down in Haiti and several more are still lost. He also mentioned that his wife's arm was broken or possibly severed as he was making a chopping motion toward his arm while he said "my wife". My heart went out to the guy... There's no way he can contact anyone down there nor is there any chance of him getting there. For a rare moment, my problems felt pretty small. I couldn't imagine having to try and work while you had all of that on your mind. I wish I had more money to tip the guy...

Why is it that the poorest countries always seem have the worst disasters? How many thousands of people were killed from the tsunami in Indonesia? Those earthquakes in China claimed thousands of lives... They're saying that maybe 100,000 people may end up dead in Haiti when all is said and done. How sad...

I feel so lucky to live in a developed country...

Tuesday, January 12, 2010

"The Cost of Living"

For me right now, it's getting pretty expensive. I'm not talking about the price of groceries here... I'm talking about what I'm giving up just so I can "live".

I don't want this to come across as a whiny rant but thought it might be interesting to someone looking in from the outside what it's like to be on clinical trials with refractory cancer.

First of all, and I mentioned this previously, my legs aren't cooperating! I figured out where the problem is and it's my calves. I never realized how important those muscles are to walking. I tried to do some toe raises earlier and I can't even do one! I can do half raises and plan to work to strengthen here if it's possible. For now though, I'm kind of walking around like a duck, walking on my heels. I feel pretty silly but oh well ;)

Secondly, I've lost most of the strength in my hands. I went and bought some wood and built a tv stand tonight and I could barely squeeze glue out of the tube, crazy. Even holding the cordless drill was challenging.

By the way, my surfing career is over... Tried to go out yesterday and it wasn't pretty. Put an ad on craigslist today for my board and hoping I can get what I paid for it.

I have a newfound respect for people who have physical disabilities. I'm learning to compensate for these shortcomings but it's difficult and frustrating.

I'm not sure how much worse this can get though and that's the scary thing.

This brings me back to my opening comment, how much am I willing to pay to live? Am I really living if I lose my ability to walk completely and lose the ability to use my hands? The hardest thing is knowing that if I walk away from this trial (no pun intended), there's a pretty good chance that another trial may not work to contain my disease. Then what am I left with? It's a pretty crappy decision to have to make to say the least.

I'm definately not alone struggling with this SGN-35, there are several people in my Hodgkins community who are struggling, even more than me. In fact, not everyone is doing SGN. I have a friend who's on a trial called SAHA (that I'm not eligible for because I've already had it) and she lost almost 20% of her body mass in three or so cycles due to not being able to keep anything down, even the chemo pills. I don't know what is worse and when it gets to be this bad it really doesn't matter...

With that said, there still are a couple of cards I can play if I choose and one I'm aware of (Lenalidomide) supposedly has a really low toxicity profile so that's good. Not sure of the objective response though. The problem is it's only offered in St. Louis so I'd have to commute. The other is RAD001 and I know nothing about it except the objective response rate is 50%, flip the coin...

There's still a chance the Lyrica will have some effect but I've been taking it for almost two weeks now and think it should be offering some more relief. I think it's helped a little but something tells me that this probably won't be the answer. It might be time to look into alternative therapies like accupuncture (tip from a comment, thanks!) or massage. At this point, I'm willing to try anything...

With that said, I'm still enjoying life to the fullest, ha!! I had a great day today hanging out by the pool, soaking up sun and reading. I went and picked up a blender and going to start making healthy smoothies to nourish and help me keep my weight up. My buddy Lee remarked on how he's been doing wheat grass with benefits so I'm gonna give that a try... I've always loved smoothies! I'm also getting back into cooking and have been making some killer dinners the last couple of nights. Being at home and having Mom's cooking available every night spoiled me! It's a good amount of work if you want to eat well and have a lot of respect for housewives (like my Mom) who prepare nice meals everyday and also to those Mom's (or Dad's) who somehow manage to work and yet still prepare good home cooked food for their family.

This is actually my first post using my new computer and have to say it's going to take me a while to get used to this keyboard. I didn't realize how nice the keyboard was on my last laptop or at least for me. The new keyboards are called "chicklet" keyboards and I kind of feel like I'm typing on chicklets... I'm a heavy typer and I guess I need to lighten up a bit which shouldn't be too hard since I can't feel my fingertips! I'm starting to like the computer though and sure it'll grow on me as I get more and more used to it.

Anyway, that's all I've got for now. My heart goes out to all the people in Haiti... That earthquake has been really devastating. The presidential palace in Port Au Prince is pretty much collapsed. It'd be like the White House collapsing here. As if life wasn't hard enough in Haiti, my God... It's the poorest country in the Western Hemisphere. There's a pretty big Haitian population here in Delray and I'm sure they're extra thankful that they're here and really sad if they have relatives still on the island.

Things can always be worse...

Sunday, January 10, 2010

Winter Storm Advisory!

I guess this wouldn't be a big deal if I were anywhere but Florida! I was watching the game when the messages came across the tv and I just sat here and laughed. Apparently it's supposed to get down to the 20's and maybe teens this evening with the wind. My Mom mentioned to me that the Iguanas are induced into hibernation while up in the trees and have been falling out (they're ok). Also, the orange farmers of course are taking a big hit. All this said, it's supposed to be 80 by Friday so I'm not really complaining ;)

One thing I can complain about (as if it'll do me any good) is the fact that slowly but surely I'm losing my ability to walk. I have to take really small steps... Hoping that when the Lyrica gets into my system this will maybe get better.

Mentally I'm holding it together although I do have my moments... One of the challenges I have is trying to remember that not everyone understands what I'm going through (nor should I expect them to). I mean how could anyone really know what it's like to deal with all this crap unless you're going through it yourself? That said, there are a lot of people who have really helped me through this and for that I'm truly blessed.

Each day it's all about playing the hand you've been dealt the best that you can. Sometimes you win and sometimes you don't but in the end it's all about the experience. I'm very thankful for this experience and will continue to make the best out of it...

Pura Vida!

Wednesday, January 6, 2010


Well I decided to take my new board out today for a spin on the waves and it was a rude awakening! It was super windy and I forgot how cumbersome it is to manage a 9.6" board in windy and obviously wavy conditions! This was all exascerbated due to me being at 1/2 strength these days from the side effects of SGN and me just starting Lyrica which really zaps you...

That said, I did manage to get to the outside for one attempt at getting up on a wave and I almost caught it! I'm determined to keep trying and will be out there the next chance I get. I'll make sure to take my Lyrica after I get out of the water next time so maybe that'll help.

By the way, if anyone's bored/interested in checking out some of my fellow Hodgkins friends' experiences with this drug, here's a link to an SGN-35 thread from the forum I belong to. There are some interesting posts and will shed some light on the challenges we face with this drug/disease. Anyway, here it is:

Thanks again for reading...

Monday, January 4, 2010

Official PET/CT report

I received the official dictation of my latest scan and it looks like I have stable to slight progression of disease, ugh. Obviously it wasn't enough to be kicked off the trial but some cause for concern...

I don't have any new areas of disease but the areas that are near my spine have increased in size. The most troubling thing is that the cancer is eroding my T9 vertebrae. I have to have a conversation with my oncologist next time to see how long he thinks I can go on like this before this starts causing me some serious problems. I already have daily back pain and can't imagine this getting worse.

I picked up my prescription for Lyrica today and hoping it starts working to rid me of this neuropathy and muscle aches. More realistically, I'd be happy with a slight improvement as it's getting more and more difficult to use my hands. It's pretty weird typing this and not being able to feel the keys! At least I still have some dexterity though...

I'm finally going to be getting a new computer! I've pooled some Christmas and birthday money and picked out the one I wanted today. It's amazing how the new laptops can run for 12-14 hours on a single charge and weigh around 5 pounds. I'll also be able to use an HDMI cable to plug in and watch HD stuff on my tv. It's going to be nice not having to worry about this thing stalling/locking and breaking my back when I carry it around while traveling... Technology is pretty cool ;)

So tonight was mini celebration #2 for my bday and had a nice dinner at my Mom's place. Tomorrow should be fun in Florida as my buddies had an epic day fishing yesterday catching Mahi Mahi, African Pompano and Mutton Snapper. We're going to have a feast! I've never tried African Pompano and heard it's incredible.

Ok, time to pack up and get some sleep. I have to get to the airport early in anticipation of some serious security delays with the recent terrorist stuff.

As Borat would say, Happy Times!

Sunday, January 3, 2010


Well the dust has finally settled from the holidays! It was fun celebrating the new year up at Boyne with all the festivities they had going on up there. I was able to ski which is remarkable based on how weak my legs are these days. I mainly stayed on the less challenging runs and only wiped out twice. It was really great skiing at night, especially on New Years Eve as it was gently snowing huge flakes which looked beautiful in the lights as I was cruising down the hill :) Had a chance to catch a hot tub too and met some nice people, one of which was a student who happens to be getting ready for medical school. He is currently doing reasearch on cancer and one of his papers was just published in

There was a scary moment however that I'll never forget. I was waiting in line at the chair lift and looked up when it came to a halt. About 4 chair lifts ahead there was a little boy maybe 5 years old who was hanging on for dear life as he must've slipped off his seat on the lift. It was like time stood still as he struggled to hang on and progressively lost his grip. Somehow he kicked off his skis, then went his poles down to the ground. He was probably 30-40 feet in the air. The kid working the lift had no idea what to do as he was frozen like the rest of us who were in line. One older guy that was next to me kicked off his skis and started heading toward the chair as if he might try and catch him or something. The kid working the lift then got himself together and grabbed a tarp and started to head over to the slipping child. In shock, I was fully preparing for the little guy to drop when all of the sudden, his mother somehow was able to grab him and pull him back up up to his seat. This whole thing probably went on for 45-60 seconds but seemed like an eternity. I don't want to think what would have happened if that kid dropped... Amazingly, after we got off the lift at the top of the hill, there was the little kid completely unfazed and puttting his skis back on for another run down the hill! I think everyone else was way more traumatized than he was, crazy. That was pretty much it for the day run for me and my group as we were all pretty shook up.

At around 10:00 the night of the countdown they did a light parade down one of the hills where everyone held red lights as they ski'd down the hill. It was something to see from a distance. I was so bummed I forgot my camera as it was really beautiful. Once the parade was done, they lit fireworks at the top of the hill, it was really neat.

The evening itself was actually pretty quiet as we enjoyed a nice dinner in the lodge where they had a really nice fireplace. I think I was in bed however at 12:30 after watching Dick Clark do his thing for yet another year! It was a full day of non stop action and I'm still paying for it with unbelievable soreness in my legs and back. Not to mention, it's been super cold here in Michigan the last few days which I'm sure doesn't help. I'm looking forward to going back down to Soflo to warm up! I'm excited to get out and try to surf as I bought a used longboard down there the day before I left. Hoping we have some decent waves the next couple of weeks...

I started to celebrate my birthday last night with a couple of buddies. It's actually on the 5th but figured I'd try and stretch it out over a week ;) I never really used to make a big deal out of my birthday as it happens during the worst time of the year, right after the holidays where everyone is burned out and broke! Last night was a good start however hanging out playing pool at this nice new place in the town where I have a home (currently rented out), Fashionable Ferndale! It was so painful though walking from the car to the bar with the temperature below zero with the wind chill. The wind actually felt like someone was taking sandpaper and rubbing my face with it, a cold burning sensation if that makes sense. Ahh, Michigan winters. So tomorrow my Mom is going to grill some filets and like I mentioned, I fly back to Delray tuesday so hoping to do something fun down there too.

It's been a good trip back home for the holidays :)