Sweet Emotion!

I was rocking out to this classic Aerosmith tune the other day and thought it appropriate for my return to the Great Northwest...

It took me a couple days to adjust but I'm starting to catch my groove here in serene Seattle :) It's still the same cool place that I left last year...

Haven't done anything spectacular yet like drive to the mountains or go on any waterfall hikes but have checked out some interesting new restaurants and been spending a lot of time with Jackie's new puppy Gomez!


Gomez chillin... He's a cute little bugger :) Think he's a Yorkie Poo or at least that's what they told Jackie at the Seattle humane society...


I think he thinks he's a bigger dog...


He loves his Momma :)


Couple of lounge lizards... Hope Chili doesn't see this, ha!

So, like I said, nothing dramatic to report (which is kinda nice). My back has been bothering me a bit so I've been trying not to think about it too much. Been going on some nice walks around Jackie's neighborhood which is really great. There's all these great old craftsman homes around here that are immaculately restored. You may already know this but Seattle is really big on sustainable living and they really push buying local around here. Well, this particular house takes that to a new level... There's a chicken coup in the front yard which (the chicken poop) apparently helps break down the compost that the owners use for fertilizer for their garden which encompasses their entire front yard. You would think it would be tacky but they've managed to pull it off in a way that actually adds curb appeal to the house and also manages to draw people from all over the neighborhood to come check out what they've done! There's a bench in front of the chicken coup across the sidewalk and you can observe the chickens (that's if you don't have anything else better to do, ha!).




It was really nice yesterday as I had a chance to stop by the SCCA and say hello to a couple of my friends there. I can't say enough how great of a place it is especially now that I've had a chance to visit some other cancer centers. It was really nice seeing my friend Cathy who was one of my infusion nurses. My other infusion nurse Jim actually moved to Hawaii with his wife and child and was bummed I didn't have a chance to catch up with him. These two people went above and beyond what is required as a nurse and I can honestly say they are good friends. It's never easy to have to go through chemo but Jim and Cathy were able to at least make it pleasant and for that I will always be grateful. It was weird as another person who I wanted to see was my doctor's (Shustov) P.A. Toni. She actually saw me first a day before I went to the SCCA at the dogpark! I was totally incognito with a hat and sunglasses on but somehow she recognized me in the middle of all the people and dogs, weird... Just wanted to wish her the best as she's expecting a child in two weeks!

So tomorrow should be fun as I'm going to catch up with all of my old neighbors and help my South African buddy Roger celebrate his 40th birthday!

Cheers!

Going back to Seattle!

It seems like forever since I've been back... Actually, it's been about a year. While I'm excited for the trip, it's also very surreal. It was almost 3 years ago that I had moved to Seattle from Southern California. I had previously spent a short four month stint in Bellevue WA (which is just across the water from Seattle) when I first moved out West from Michigan. It just wasn't the right place for me at the time and I decided to move down to Socal. After a fun couple of years in Orange County, I was ready to give Seattle another chance and decided to move back up. I got off to a rough start but quickly adapted and was really starting to enjoy the place. Beauty is all around you in Seattle. There's water everywhere, everything is so lush and green and there are two mountain ranges which are in view everywhere on a clear day. The city itself was so unique and forward thinking and the people seemed genuine and and open. I made some good friends pretty quickly. I was doing really well with my job after my third promotion in just over 2 years. I was on top of the world... This is when it all came crashing down...

After dealing with symptoms for a few months that I was told was asthma, I was diagnosed with stage 4B Nodular Sclerosing Hodgkins Lymphoma. My life would never be the same again...

Because of this I go back with a love hate relationship with the Emerald City. Of course there's plenty to love. I think when I first started this blog I wrote quite a bit about what a special place Seattle is. I also distinctly remember writing about some of the hardest times I think a person could ever endure. While I continue to struggle with my situation, I feel like I'm at peace with it now and don't know if I can say the same back then while living there. It seemed like I had so much more anxiety and mental anguish back then as I was trying to figure out how to live with cancer. How does a young person prepare themselves for such a thing? The diagnosis and first line treatment was tough enough, especially being out there on my own along with Jackie as my only reliable advocate. The subsequent relapse and having to go through the double stem cell transplant as my only chance at a cure almost pushed me over the edge. All this going on while trying to get to know a new city...

So, as I prepare to return, I understand there are going to be a lot of emotions both good and bad. What I feel good about is my ability to manage and somewhat control these emotions with the strength I've built over the last few years.

I'm looking forward to a great time and look forward to sharing it with you :)

P.S. I had a better version of this entry that somehow (and inexplicably) got erased and I'm too tired to put a whole lot of effort into re-writing this one. I think this condensed version hits what I was trying to say "ok" so with that I'm out...

Stable!

Shot at Montauk Downs Golf course at the tip of Long Island yesterday.


So, just got back from the NYU with some decent news! Well, I guess you can call stable disease decent as it's not good but not bad. I'll take it :) Also, my platelets went up a couple of points to 50K so I barely made the threshold to continue on S&N.

One bit of interesting news which could just be spindoctoring by Dr. O is that my SUV levels have all gone up (which to me is a scary thing) but my disease has stayed essentially the same size. Dr. O mentioned that in many instances an increase in SUV levels (or uptake) while disease size remains stable is a good indicator that a response is right around the corner. Who knows what to believe but it looks like I'm going to continue on this therapy for the time being and see if his theory is true. I have the other trial in Detroit cued up just in case so I feel comfortable regarding my options...

The weather here in New York has been great! It's a little cooler than Florida (if you can say 80 is cooler ;) and I'm not sweating as much! Had a fun day yesterday renting a car with my friends and driving up through the Hamptons and eventually ending up in Montauk which is the very tip of Long Island. I played golf at this nice State Park course called Montauk Downs and was playing pretty well until I received a phone call. It was Sean my trial coordinator letting me know that I needed to come in to the clinic at 1:15 to see Dr. O'Conner. I did the dumb thing and asked him if he had my scan results yet and he declined to provide me any details saying that "it's complicated" (he was just doing his job). So, of course I proceeded to freak out and from that point on couldn't concentrate on hitting a golf ball. Amazing how much of a mental game golf is... It really doesn't matter now however as I'm just glad to find out my disease hasn't progressed and I can continue on this therapy as I've made a pretty substantial investment in time and money getting this thing up and running.

I was able to regroup after the golf game though and we stopped at a roadside seafood joint on the way back and I ordered a fresh 1 1/2 pound lobster! I wanted to treat myself after all of the anxiety I had just endured and it didn't dissapoint. Couldn't take any pictures though as I forgot my camera and the batteries on my phone had died, mwah mwah mwah...

So, from here I'm due back in nyc in three weeks. The Tigers are in town at that time playing the Mets so I think I'll try and get to a game.

I wasn't quite ready to say goodbye to New York so this is pretty cool!

Anyway, thanks for the words of encouragement! I'm off to Seattle next week so the adventure continues :)

Good times!

Platelets aren't cooperating... Ugh

So, I got up at the crack of ass this morning, took the tri-rail to the airport, flew here, took a bus to midtown, walked to the cancer center, gave em my blood, did the PET/CT scan only to find out after that we have to hold my next cycle until they re-check my blood Thursday to see if my platelets go above 50,000. I was wondering why I have these weird bruises on my legs and arms, hmmmm. This is of course pending my scan not showing any disease progression.

So, tomorrow I try and keep all this out of my mind as my friends and I are renting a car and driving up to Montauk Downs tomorrow morning to hopefully play 18 holes of golf.

Hope to have good news on Thursday.

Touching Base

Hey, just wanted to pop in here and say hello :) I've been taking some time off from cancer over the last week or so, ha! Actually, I've been keeping myself pretty busy and doing a lot of resting in between. I'm having a blast enjoying my new found strength and functionality of my limbs/extremities ;)

It's my off week this week too from the pills which is great. Even though I don't have as many stomach issues, they do make me tired so this week is a blessing.

Hoping something fun comes up for the holiday weekend... Last Sunday I went out with some friends on my buddy Jay's boat at Peanut Island in West Palm Beach and it was a blast!


It's like a giant swimming pool here!


The water is a perfect temperature, you don't want to get out!


They even have a boat out here that delivers NY style pizza!

So, hoping we can get Jay to put the boat back in the water this Sunday ;)

This has been a pretty exciting day for me as I took a drive to Miramar earlier and picked up a very seasoned 89 BMW 325i convertible! I've been looking for one of these projects for a while and was able to land a 5 speed which is really tough to find. It only cost me $1200 bucks and will definitely need some TLC. I've always wanted a convertible and it just so happens 89 was the year I graduated high school, ha! How cool would it have been to have it back then, wow... Well, it's still pretty cool now plus it's going to be a good hobby for me to figure out how to work on it. It's all about the hobbies...


I guess you can consider this the "before" pic. Immediately, I need to replace the windshield and the rear window on the convertible top. The engine runs strong and growls like a tiger! Ideally, I wanted to find an old Mercedes convertible diesel and turn it into a bio diesel but they're so hard to find... When I lived in California, I met this guy who bought an old mountain bike from me who had one. He had it retrofitted to run on used vegetable oil from Chinese restaurants. The exhaust smelled like fried rice, ha! Oh well, this will have to do even though I hate continuing to contribute to companies that jeopardize our country like BP. Even though I'll never buy gas again from BP, I know all the other oil companies are just as bad and fossil fuels are so bad in so many different ways but I guess that's the way it is for now, mwah mwah mwah....

So, it'll be back to reality this upcoming Tuesday as I have my big PET/CT scan to see if the S&N is doing anything to my disease. Like I said before, I can still feel it in my back sometimes but it seems so much better... As usual though, to borrow from a friend, I will expect the worst and hope for the best :)

Shaka!

Steady as She Goes...

Enjoying a delicious piece of Pizza Rustica at my new favorite pull in lunch spot!

Well, I can't sleep tonight so I thought I'd blog myself to dreamland, ha! Actually, I really don't have a whole lot to write about except I'm still feeling better everyday and my quality of life is the best it's been in quite some time, yeehawww.

I'm riding my bike now to the beach for my ocean swims so that's a new element in my quest to get back in shape. I'm also playing golf here at the local course and my game is slightly improving. I've also picked up the guitar again and working on getting my calluses back (along with trying to remember some of the songs I could play, ha!)

Mentally, it's always easier to deal with my situation while I'm feeling healthy... That said, my spirits have been up and feel much more lighthearted these days :) I also had a long overdue chance to straighten out my place which had been neglected since the Guillain Barre Days... It was a two day project but I went through and did a white tornado on my crib and it's really nice to have everything back in place again! There's a lot of piece of mind to be gained from having an organized house if you know what I mean...

Clinically, I still have some pain in my retrocrural space in my back after a couple sips of beer but it's minor. It's a reminder that the cancer is still there but I think in small numbers hopefully. June 1st will clue me in as to how much disease is lingering as I have my next scan in New York. I'll be there from June 1 to the 4th, come back to Delray for the weekend then fly off to Seattle for 10 days! Looking forward to seeing Jackie and all my other friends out there. Should be fun!

So, until then, steady as she goes as Jack White says... I can't say how appreciative and blessed I am to be feeling almost back to normal and savor every second of it. Even right now as I effortlessly type these words on the screen simply by moving my fingers and feeling the keys, something I couldn't do a little over a month ago....

Thank you God, whoever you are!

Hello from SoFlo!

"Toes in the Sand :)"

Just wanted to take a minute and say hello :) I've been back down in Florida for a few days now and life is good! The weather has been incredible and a lot of the snowbirds have flown north for the summer, yesssss!

I've really been enjoying going to the ocean everyday and swimming, it's my new thing. I start on the beach listening to my headphones (Pandora) then head out and swim against the waves or just float on my back letting the waves crash over me. I then go back closer to the beach and exercise by walking through the water fighting the currents... It's great exercise for me and so relaxing. The ocean has unbelievable healing properties :)

I have to say that I think my hands are all the way back now! Someone actually asked me to open a jar for them recently and I did it no problem, wow. My legs are doing a lot better too. I can now cover my eyes with the towel as I dry my hair after the shower without the risk of falling over. I was lacking the muscle cognition before and had absolutely no balance whatsoever. I can't run yet but hope that will come next. Speaking of hair, that's starting to grow back too :) Even though hair loss isn't listed as a side effect of SGN-35, I lost all of the hair on my legs and armpits (strange I know) as well as really thinned out a lot on the top of my head. Well, the new hair on top of my head isn't quite as noticeable but think it's getting a little thicker.

Most importantly, I'm really starting to feel like myself again and getting my confidence back. Can't tell you how embarrassing it was to try and get on a bus with my luggage and be falling all over the place. Not to mention, being in line at the drug/grocery store and not being able to pull my wallet out of my pants to pay for my items.

I don't know how long this will last but I'm trying to enjoy every second of it! I have a scan coming up May 31st and the doctor may tell me that I can no longer do this SAHA and have to switch to somethig toxic again. So, I try not to look to far into the future and just continue to live here in the moment.

I think I'm going to wind this up now as I was going to start talking about some things that are bothering me (i.e. the oil spill situation and some politics) but think it's best if deal with that perhaps next time.

Cheers!

Chris