Cue up SGN #8!

The phonecall from Dr. Ram was good and I'll be going in for my 8th cycle tomorrow :) Surreal being happy about being able to continue on such a perilous/ambiguous path but I live in the moment these days! The unofficial word on my PET/CT by the way is still stable with improvement in some areas. I'll take it...

I'm getting really excited about going Up North :D It's a bavarian atmospehere at this place called Boyne Resorts and found out they do have a killer hottub! The drive itself is fun as you slowly get out of the city then more and more trees and less and less houses... I've got some pretty sweet skiing gear that I've been accumulating the last couple of years and haven't really been able to use. I'm counting on getting a "boost" from my infusion. It's happened a couple of times after I got the drug and hoping this is one of those times. If this happens and my legs are strong enough I'll be doing some snowboarding. If I have decent energy and weak legs I'll probably just ski. If both my legs and energy are shot I'm hoping they have downhill tubing as all I have to do is sit on my keeshter (sp?!) and laugh my ass off while I slide down the hill.

Good times!

Happy New Year!!

Getting a Grip :)

So I read my rant last night and it's not as bad as I thought it was after I wrote it. It's seems strange to me that I put my thoughts out there as I never really was one to open up about things before I was diagnosed. I'm actually proud of myself as I think it takes guts to share this kind of stuff, especially in a society where it's not exactly the norm for men to share their feelings on things. Like I've said many times before, it's good therapy for anyone going through life threatening illness. Hell, I think it's helpful for anyone who's going through anything stressful. I've gone to therapists when I lived in Seattle and here and can say I never felt as good walking out of their offices as I do when done blogging.

I had my PET and CT scans a few hours ago and glad to be done with em. Here in Detroit, I have to have two separate scans as they don't have a PET/CT machine at my center. I was spoiled in Seattle as all my tests were done in one building on one machine. It usually took a little under two hours whereas here I have to go to two different buildings and it takes over 4 hours. I suppose I'll find out if the news is bad via telephone call telling me not to come in for infusion on the 30th. There would have to be clear cut evidence of at least 20% growth of existing lesions/tumors or multiple new areas of disease. I'm cautiously optimistic...

So if things work out, I'll be getting SGN-35 #8 Wednesday morning. Then, I'll be jumping in a car to drive up to Northern Michigan to go skiing for New Years, ha!! I have no idea how I'm going to ski with these weak legs but will figure it out when I get up there ;) If I can't ski, maybe I can find a hottub somewhere. I've always loved soaking in a hottub outside in the dead of winter. It's great when you step out of the tub with all the steam coming off your skin! It's going to be cool being up north, hope we get some good snow.

Tomorrow I'll be getting together for dinner with the other half of my family and will be joining my stepbrother Chris. Just wanted to wish him all the best as he prepares to leave for Afganistan on January 9th.

If I can't post till after New Years, Happy one to you! Here's to good things to come in 2010...

Chris

Maddening!

2:22 a.m.

Being deprived of sleep... I can understand why this is one of the more effective interrogation methods. Combine this with constant physical discomfort or pain and you can pretty much get people to dish... Case in point, me constantly spilling my thoughts out into the blogosphere, ha!

I feel sometimes like I'm losing my grip on this reality. I was just sitting here thinking how long it's been since I've felt like "myself" and wondering if I'll ever truly be at peace with all of this...

I also realized how irritable I've been (for me at least) for the last x number of months. There are so many things that I used to just blow off... It seems like work now to do this and it seems like I'm always compelled to speak my mind or prove a point that I would previously (before dx) just let go. It's a burden and I need to figure out a way to squash this. Books haven't helped (only temporarily) and I don't feel like adding any more medications to my already overly toxified body. Case in point, I probably shouldve taken a sleep med tnight but was afraid to do so after I've been having to take more pain meds as usual due to the fibromyalgia and neuropathy that has peaked the last couple of days. All I can think about is I don't want to end up like Heath Ledger or Michael Jackson although I'm sure I have a long way to go for this to happen.

Anyway, when I say it's a challenge to manage a situation like the one I'm in it's about as big as an understatement as
one can make! Thus, my renewed quest to keep my life as simple as possible... Is this possible? I guess time will tell. I go back and read my previous posts and it seems like when I'm sleeping ok and relatively pain free I'm more at ease which I guess is easy to figure out. I look back with amazement how simple my life was when I didn't have the burden of this disease haunting me, crazy. I had no idea how good I had it! Perhaps there will be a day where I look back on days like today and think the same thing and that scares me... Did I mention how messed up cancer is?!

So I'm going to post this now (without proofing) and sure I'll regret it tomorrow.

Maybe with this off my chest I can get some rest...

Bye Bye Hair...

Well I was notified over Christmas that the hair I waited so long to grow back has decided to say Adios again. I knew it was happening after noticing it in my sink everyday down in Florida. However, it's not very ofter that I look at the top of my head so I guess I really didn't know the extent till now. Good thing I live in a warm climate ;)

Maybe I'll ask for a rug for my birthday, ha! Or, I'll just whip out Chili's dog clippers and shave it off again. Good times...

C'est la vie

Merry Christmas!

Merry Christmas to my few loyal readers! It's nice to be home after two years straight of being in treatment and not able to travel. This time last year it was just my Mom, my cousin Kenny and me out in Seattle. While we had a great time, it felt like I was in jail or something not being able to do what I wanted...

Yesterday I hung out at my Mom's and the family all came over for dinner and to exchange gifts. It was nice to see everyone and just relax (although I was super tired from not being able to sleep the previous night from muscle aches). Today was nice too hanging out at my Dad's although I had to cut it short due to radiating shooting pain in my arm and hand. We were watching the latest Star Trek movie and I felt like there was acid flowing through my veins in my right arm. Yes, Santa brought the SGN-35 pain back just in time for Christmas ;) He also brought me a painkiller which I just took and will hopefully take a nice nap.

It was interesting last night watching this special on CNN called the history of Jesus. I had no idea that Christians didn't start celebrating Christmas until 400-500 years A.D. It was also interesting learning about the brutal Titus and the Nostic scriptures that were found centuries later. If anyone has a chance to watch that program On Demand or something, I recommend it.

So it's time to go down for a nap and let this pill hopefully work it's magic. Counting down until Monday where I go in for my all important PET/CT scan. I'll be finding out if my disease is stable or better so that I can continue on the trial. I've been thinking about my options lately if the scan is favorable... This pain is getting unbearable and seriously starting to hinder my quality of life (after the first week of infusion). I read a post by a fellow Hodgkins survivor/friend who said that she was going to ask her doctor if she could take a break from the trial and go back on at a later date for compassionate use as she too is suffering from debilitating side effects. Like I previously stated, there's a new drug getting ready to start here at Karmanos called RAD001. I was thinking that I could possibly stop the SGN-35 trial and get on this other one. I'll only do this though if I have the option of getting back on SGN as the overall response rate for RAD is 50% and obviously the most important thing right now is managing the disease (even if it means permanent nerve damage). I know this sounds crazy but such is life with refractory cancer, you just don't have many good options.

Anyway, seems like this has turned into sort of a bummer post but I have to get this stuff out or it eats away at me... Other than the obvious, life is good however and I'm just glad to be alive and feel relatively well (I stress relatively).

I hope that whoever reads this has had an enjoyable holiday and thanks to everyone who has been so caring and supportive to me, you know who you are :)

Peace



Santa brought Chili the biggest rawhide I've ever seen! Thanks Uncle Tom / Aunt Linda!



Blurry but funny :D



My new stepniece Maddy and Elmo!

Tis the Holiday Season!

My Delray family, from left Elise, Ramil, Dan, Celia :)

I'm starting to feel it! Even though I'm living down in the tropics, I'm starting to get into the holiday spirit. People here in Florida seem like they go over the top when it comes to celebrating maybe because it's not so "Christmasy" here without the cold weather and snow. I was out at this local pub last night and people were coming in dressed in holiday outfits, santa get ups, crazy Christmas hats etc... It was funny and festive and everyone seemed to be in a good mood :)

I've really been enjoying the outdoors too having been fishing, snorkeling and today surfing! They were all fun with interesting little things happening during each activity. First, there was the noseeum attack at John Pennekamp State Park in Key Largo FL. I had just finished an awesome snorkeling session where I had a chance to swim with a huge school of parotfish right off the bat... The rest of the session was all gravy including the boat ride back which was awesome as the sun was setting. It got weird from here... I was in the parking lot getting my stuff together when all of the sudden I started feeling little pricks on my left arm. I looked down and there were a couple of these tiny bugs with wings. I started to swat the things off and before I knew it, I was covered... I couldn't get them all off of me and had to start the car and drive so the wind would blow em away. Unfortunately, the damage had been done... I counted last night and I have over 80 super itchy bites all over my arms, legs, chest, neck, scalp (somehow) and face. In fact, the other night I was awaken a couple times because I was so itchy, man... It's 4 or so days later and I'm still itching but think the worst is over.



These are almost as itchy as when I had the "Hodge Itch"



The boat ride out to Pennekamp State Park snorkeling



The "pigeons" at Pennekamp State Park, ha!



Pennekamp State Park lagoon

Went out fishing the other day and it was really fun too. The seas were 2' or less and I was on a 50 something foot party boat. It was a little crowded with 18 people but still managed to catch 10-12 fish and a couple of keeper Mutton Snapper. I didn't think I was going to make it out as my buddy and me were sitting up top and all of the sudden the aluminum supports holding up the canopy snapped and one of the rods fell squarely on my arm, yikes! That was pretty painful and they had to pull out the first aid kit and bandage me up. Playing hard! There was an old guy next to me and I thought he was dead as he laid on the deck motionless... I think he was looking for a big payday after finding out the thing didn't even touch him, funny. So needless to say, I really worked for my dinner on this fine day :) Good times!



Mmmmm, Mutton Snapper!



The fish look small but they're legal, 16". I caught larger Red Grouper but they have to be much bigger to keep. That little white spot on the collar of my t-shirt is from a bird who was having target practice out on the water, lol.

Which brings me to todays surfing session. The air temperature was actually colder than the water. I had to bust out my wetsuit and glad I did because it was still a little chilly with it on. It was really beautiful out on the water, wow. Even though I didn't catch any waves, it was great just getting exercise paddling and as you'll see by the pics, the sky was unbelievable :) I borrowed my buddy's board and thinking of getting my own now after such a great experience out there.



Some guy catching a ride on the inside at Delray Beach



The "natural area" between A1A and the ocean at Delray Beach



The sky was beautiful this evening, imagine looking up at this from the water!



You really forget about all of your worries when you're out on the water, at least I do... So glad I feel good enough to be able to do all this stuff and hope I can for at least the rest of this winter.

As far as how I'm feeling, it's been pretty good so far after my infusion which was 10 days ago. I haven't had the the muscle aches except for here and there in my arms and hands. My back's been feeling ok (actually no pain after a drink). In fact, without sounding cocky because I'm sure I'm wrong, but I think my disease is minimal right now. Hoping I'm right and it stays this way until my PET scan on the 28th. One thing that seems to be getting worse though is the neuropathy as my hands are getting pretty numb. In fact, I had a hard time putting the hook through the sardine when I was fishing. I'm still able to type and play my guitar so that'll be my baseline. If I can no longer type or play, I'll have to get off the trial. I plan to ask for a new medicine next time I go in called Lyrica as some of my Hodge collegues have reported success with it.

That's it for now, hope to post around Christmas.

Happy Holidays Everyone!!

More Relaxing...

So I've been back down for a couple of days and thankfully I'm much more relaxed. Also, the pain is pretty much gone which is great. I know that the drug really works as I can feel a major difference in my back pain and my side where my disease mostly is. It's weird too that the muscle aches go way down during the first week as if they're brought on by the drug leaving my system or something. I think the cancer gets active again during the last 7-10 days of my infusion schedule as the drug starts to leave my system and this contributes to my back pain etc... Who knows, just trying to enjoy a couple days of feeling better. The neuropathy is still there though so I have to keep my eye on that.

By the way, wanted to put a Chanukah song up for the large Jewish population down here! I like this one almost as much as Adam Sandlers Turkey song, ha! Went down to Ft. Lauderdale last night for the annual boat parade on the Interoastal. It was pretty cool. There were some pretty heavy rains so it was funny wathcing all the people out partying on their yachts then having to duck under cover when the sheets of rain came down!



This was the house across the canal from where I was. The owner apparently did it all himself while running a dental practice. The electrical bill is $100 a day!



One of the bigger decorated yachts...



Another



The Simpsons/FOX channel yacht

My place is done for the most part. Just need to finish off the hole in the kitchen wall project and maybe get a tv stand and other knick knacks. I even have my screen porch habitable which is an accomplishment. The only thing missing though is Chili who I decided to keep up in Michigan with my Mom and Rich. Miss that little stinker :(



Shot of my living room. All second hand furniture except couch covers and rug. Had to get into the Christmas spirit too with the icicle lights around the ceiling :)

Looking forward to warm sunny weather this whole week! Crazy, I just left Michigan a couple of days ago and it was in the teens, ouch! Sorry to all my friends and family up there who have to put up with it. I've got an extra room down here if anyone wants to come visit!

See ya :)