Tuesday, December 29, 2009

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!!

Monday, December 28, 2009

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...


Sunday, December 27, 2009


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...

Saturday, December 26, 2009

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

Friday, December 25, 2009

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 :)


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!

Sunday, December 20, 2009

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!!

Sunday, December 13, 2009

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...


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 :)

Thursday, December 10, 2009

SGN-35 #7

So I had my 7th infusion today... I talked with Dr. Ram and he's concerned about my muscle aches and neuropathy. He told me if it gets any worse I may not be able to continue on the treatment as the neuropathy can do permanent nerve damage. He said the muscle aches would eventually go away though. Of course none of this will really matter if after my PET/CT scan my disease shows to be progressing.

If any of these scenarios happen all is not lost... The plan then would be localized radiation then on to another trial that's getting ready to start at Karmanos called RAD001. It's shown to have an objective response rate in Hodgkins of 50%. Not great but not bad. I have no idea what type of side effects or how often I'd have to have treatment but will do some research.

I'm going to do my best not to think about any of this as I'm leaving to go back to Florida tomorrow and just want to enjoy myself.

The scans are on the 28th and if all's well, my next infusion of SGN-35 will be on the 30th.

Hoping to be able to go into the 2010 with some decent news...

Tuesday, December 8, 2009

Ah, Internet Access...

So nice to switch on my computer and know I can instantly get on the internet! I didn't really like my post last night as I was half asleep and not very coherant. I think my blogging is a little rusty ;) Anyway, the thoughts I have on South Florida didn't come out as eloquently as I'd like them to. So, I will expand on this at a later date after I've lived down here a little longer. It's definately worth writing about...

Anyway, I snapped a couple shots of the outside of my place for S and G's. Once I'm done with my projects in here, I'll post some pics of the inside.

Cheers :)

Shot of the common courtyard in my Quad

My wreath looks strange with the palm trees...

The pool!

Monday, December 7, 2009


Well, it's been a while since I posted, sorry. I just today was able to get my internet going and have been super busy working on my place. It's starting to come together though and feeling more comfortable here every day.

It certainly is different here in Florida... While the scenery and weather are beautiful, it's taking me a little longer to get used to the "attitude" of the some of the Northeast transplants and the retirees with all due respect. It's weird, people are moving at such different paces, I need to find the happy medium. I also have to figure out a way to avoid the superagressive young drivers and the overly defensive older drivers. I'm getting better at yelling obsenities out the window and getting quicker and more clever with my "bird". The other day I flipped it out of my moon roof for extra added effect, ha! It's actually nice to release tension this way, funny. Maybe the New Yorkers have it all figured out. Just let it out and you'll feel better! This includes the car horn which gets used more than anywhere I can remember living. I still tend to believe avoidance is the best policy but that's just me. I mean, do you really have to sneak into that void one lane over going 75 miles an hour just to gain 5 seconds on your commute? And if the person behind that void decides to speed up, should they be subjected to every expletive in the book and 10+ second honk? I'm not so sure but I grew up in the Midwest...

I was thinking the other day, I kinda know what the retired folks are feeling as they enter into their "golden years". There is a sense of entitlement (as there should be) with these folks as they have paid their dues so to speak. I have to admit I selfishly have also felt this sense of entitlment with what I have gone through and with the possibility that my days may be numbered (relatively speaking, I know all of our days are numbered). I also find myself moving at a slower pace, making sure I'm taking all this in.

I have been working pretty hard though for a refractory cancer survivor! Case in point; I found this old oriental type rug at this resale shop I've been frequenting called Faith Farm Ministries. It was sitting out back and I asked the guy what they wanted for it and he said $10! I thought to myself I can't go wrong, it's only $10 right? So, the guy loaded the thing in my car and I took it home thinking it just needs to be cleaned and I've got myself $500 rug. Big mistake... First, I spread it out in the green area adjacent to my condo. I mixed a concoction of pine sol, amonia and baking soda thinking this would kill the germs and any odor it had. So I scrubbed it down with the solution and rolled it back up. I failed to take into account how heavy a wet 10x13 rug is when wet! It was heavy enough when it was dry... So, I managed to somehow drag it into my place and get it unrolled into my living room. That alone was enough to fry every muscle in my body. I had rented a rug doctor and proceeded to extract the moisture and then do two passes with the rug doctor solution. To make a long boring story short, the experiment didn't work! I think some dogs or cats decided to make this carpet their urinal and the thing stunk up my place something awful. I had to get it out here pronto, nasty! Live and learn I guess...

I also decided to cut a hole in my kitchen wall, ha! Still working on that one... I have found some good deals that were keepers (on furniture and such) though. I bought a couch and a loveseat for $20! I used the rug doctor to steam clean em and found some decent couch covers at Big Lot's. Old couches are always more comfortable aren't they? I also found a couple of dressers and some end tables for cheap. I broke down and bought a new rug for my living room from Target. The only thing I need now is a coffee table and possibly a tv stand and I'm good to go.

So, I fly out of here Wednesday morning and have treatment in Detroit on Thursday. I then fly back down here Saturday the 11th until Dec 23rd. It's all fun stuff from here on out as my place will be finished for the most part. Actually I don't mind working on my place but maybe at a slower or more infrequent pace. I've noticed that since I've been sick I need to have order in my surroundings maybe to compensate for the disorder that's going on inside my body (and sometimes my psyche). I already feel more at peace with everything pretty much in place here. As for my body, can't always say the same unfortunately. It's day 18 of my infusion schedule and the body aches are in full effect. I also feel like the lesions on my spine might be getting worse as my back is extra sore. Hoping this is just from me working around here though of course. I have a required CT scan on the 30th and should know more then.

Strange, when I don't write this stuff down, I don't think about it as much. Maybe there is something to be said about going balls to the wall. Oh wait, I already wrote about that before ;) Well, this next experience down here will be more outdoorsy stuff if I have my say (the weather hadn't been cooperating the 4 previous days to this one). Really quick funny story, I decided to go use the pool today to take advantage of the sunshine. So I float down to the bottom of the pool poroise style with my arms at my sides while having my eyes closed. Next thing I'm shocked to feel my chin scraping the bottom of the cement pool, ouch! So now I have a nice little raspberry on my chin, ha! Good excuse to grow a beard or goatee if I can get enough hair to grow on my face (the hair growth has been thinning out since SGN-35, in fact, my legs are skin only now, weird). Anyway, this should add to my nice collection of scars I've accumulated over the last couple of years. You can actually see one on my forhead of the below picture when I got sunburned in Death Valley. I of course have the scars from the biopsies and port placement/removals on my chest. There's a nice one on my arm from a battle with Chili and waiting to see what this turns out like on my chin. For whatever reason, I tend to scar really easily these days... Who needs tattoos right?

Anyway, time for some rest. I'll try and post some pics of my place and scars (ha!) next time.