Preparations...

Excited to say next Monday I'll be making my way up north back to Michigan for a few months! I've already started packing up my stuff to prepare for the 1200 mile drive. While it's been a fun last couple of months down here in SoFlo (since I've regained my strength) I'm definately ready to get out of this heat... Not to mention, I don't want to be anywhere near here when hurricane season starts. Hoping that none of my friends have to deal with any major storms.

It's going to be so nice to be back in Michigan for the summer! Can't wait to see my family, friends and Chili! My Mom said she looks like a ragamuffin right now and needs a haircut in the worst way. I hope she isn't sad leaving grandma and grandpa to come live with me in Ferndale. I've got a pretty nice yard there and a great park across the street so we should be able to become good buddies again (I hope ;)

I think this change of scenery is going to do me some good as I kinda feel like I've been in a little rut lately... When I'm on the go, I don't have a whole lot of time to sit and ponder what might happen if my disease decides to get aggressive on me. I haven't felt all that great the last couple of days and sure enough my mind starts to wander... I felt a little bump in my neck yesterday which is a little tender and automatically assumed my disease is progressing. This could be a number of things so I have to remind myself to stay in the here and now. I've had some night sweats recently as well and have to remind myself that it's 150 degrees here in Florida (or it seems with the humidity) and maybe I just need to turn the air up a little. It's these little mind games that really test your strength and by now you'd think that I'd be so battle tested that none of these things would get to me but they still do (unfortunately)...

So, I'll continue to keep myself as busy as I can. To facilitate that, this week will be spent on tying up loose ends and packing up whatever I can fit into my car to bring north. I'll be towing my new ride on a tow dolly so that should be interesting! Once I get up to Michigan, I have plenty of projects that'll take up a lot of my time. I haven't lived in my place in Ferndale for around 10 years now so there should be a lot of projects to work on. The first thing that pops into my head is doing ceramic tile in my kitchen. When I first remodeled the house, I ran out of money and laid a cheap vinyl floor down. I think it's about time for an upgrade... Also, I'll have my car to work on which should be a blast. I just hope nothing happens to it as I tow it...

Anyway, other than the obvious, all is well I must say. It really doesn't feel like summer yet being down here in Florida except that the weather is getting hotter like I mentioned.

So, here's to the beginning of my summer starting July 5th!! Hope to at least get some fireworks in down here before I head north :)

Fun in NYC!

Well I'm sitting here in my room watching the Mets Tigers game and enjoying the commentary of Jerry Seinfield! I guess he's a pretty big Mets fan and seems to know his stuff about baseball.


Citi Park (formerly Shea Stadium)

I went to the game at Citi Park last night and while it was a blast, the game was painful to watch. It was one of the worst perfomances I can remember by the Tigers and to add insult to injury, it rained cats and dogs at the game! It was fun taking the Subway through Queens and checking out all the graffiti. There's one area in an old warehouse district where they actually showcase the graffiti and it's growing... Wish I could've snapped some shots but the train was so packed and we blew by it pretty quick. The ballpark itself is pretty nice after they renovated it prior to last year. I've now been to 8 different ballparks and have to say Citi Park is right up there with some of the better new parks.

Today was fun as I took the train downtown and walked across the Brooklyn Bridge! My friend Paulette joined me and we ended up getting a pizza at the famous Grimaldi's which I had seen on the Food Network. It's heralded as the best pizza in New York and certainly didn't dissapoint. They use a different type of cheeze than mozzarella and every pie has fresh sweet basil baked in which is awesome. The place does an incredible business as I've tried to eat there 2 other times but the line was always too long. We still had to wait in line today but it wasn't as bad plus I wasn't as hungry as the last couple of times.


The Brooklyn Bridge!


Grimaldi's Pizza in Brooklyn. Looks like a hole in the wall but there's always a line to get in and the pizza is incredible!

Speaking of being hungry, I'm still having trouble with my appetite because of the SAHA Niacinamide. The Marinol has been helping but it has its drawbacks ;) Namely, the impaired state it induces... It'd be fine if I was at a concert or something but having to figure out how to get to Midtown from Brooklyn via subway (not being familiar with the train system) can be a problem... I got a little nervous when I got on the F train earlier thinking it was going to take me to Midtown only to find out that the train I was taking was going into the heart of Queens, yikes. Funny how the scenery changes once you start heading into the sketchy areas of New York. Once I realized I was going the wrong way, I jumped off the train to head back and not only was the scenery different in the station (i.e. dirtier, dingier), the station itself smelled like a toilet, nasty. I guess you could say my heart rate was a little elevated at this point, ha! So, to make a long story short, I was able to figure it out and took the F train to the A train to the E train and ended up at my destination which was the World Trade Center site (to take some pictures). The last time there, I didn't have my camera and wanted to capture what it looks like barron before they construct the next tower.


Hard to believe the twin towers used to stand here....

So, I have a blood draw and Dr. O'Connor appt. tomorrow at 9:00. From there, I'll probably jump in a cab and head straight to the airport for my 12:50 flight. Should be a pretty exciting morning...

Ok, back to the game... Go Tigers!!

Back in the Sauna

Well that was a fast 10 days... Seattle is awesome! I'll miss it...

I just got back to SoFlo a few hours ago, what a long day... I don't think you can fly much farther in the lower 48. I flew Continental and amazed how bad the customer service has gotten for that airline. I used to fly them often when I lived out West and don't remember them being that bad, ugh... I had a $250 voucher in my hand after volunteering to give up my seat (as they were oversold) only to have it taken away from me after they made a "mistake". I was then forced to check my carry on bag, give up my original seat and was given a middle seat in the back of a packed plane, ugh. Previous to this, I was amazed to witness several instances where agents were talking back to customers in ways you shouldn't be talking to customers, totally unprofessional... I usually stay pretty cool in airport situations because experience tells me getting upset only makes a bad situation worse and I happen to be frying bigger fish anyway ;). For my troubles, they gave me a free drink voucher, jeez...

So I’m back in steamy Delray Beach for a couple of days before I fly up to New York to do the required blood draw and visit with Dr. O’Connor. Like I mentioned, I’m excited to go to Shea Stadium (it’s called something else now but I still call it Shea) next Tuesday night to see my Tigers take on the Mets! We’ve been hot lately winning 6 in a row so hopefully they’ll keep it going…

By the way, I read some good news recently regarding fellow Hodge Warriors (Matt from Colorado and Neil from Toronto ) who went through a stem cell transplants and had a poor prognosis (primary refractory like me) and are actually clean after 9 and 12 month scans respectively! Congrats fellas.

Time to get some much needed Zzzzz's. Not sure why I posted except maybe to let everyone know where I am at the moment. Seems like I'm all over the place these days ;) The plan is to enjoy my week off from the pills wherever I am!

Probably update next from New York...

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.