Thursday, August 5, 2010

Update from New York...

So, I'm in my room now relaxing after a nice carryout meal from this place up the street. I went in today to see Dr. O'Connors assitant Shannon and I'll be continuing on for another cycle of S@N. We never really talked about the potential new activity in my neck as we pretty much beat a dead horse on the subject over the phone earlier in the week. The plan is to do this cycle and I'm scheduled to be scanned again when I come back in three weeks. If the suspicious nodes are larger or there are more areas with uptake, it's a no brainer, I'm off the trial and on to something else. If the areas are still the same size or the SUV levels are lower plus the other areas in my back are stable or better, I'll stay on the trial.

I also got the results back from the MRI in Detroit and it doesn't sound good. There is still "Lymphomatous osseous infiltration" in my T-9 through T-11 vertebrae. There's also soft tissue that's next to my spine that's cancerous and probably the source of my pain on the right side of my back. The MRI also showed that I have "multilevel degenerative changes thoracic spondylosis with central disc protrusion seen at multiple levels". I haven't researched what this means but it doesn't sound good. Shannon mentioned that I need to speak to an Orthopedic doctor to see what can be done to help or correct the problem. She mentioned that surgery is an option although probably not a very good option as I'd be laid up for a while. She also mentioned that I might be able to get local steroid injections to reduce the inflammation. I need to make an appt. in Detroit with a specialist to follow up on this.

This stuff is all pretty scary and surreal. Like I've said before, the cancer is enough to worry about but you throw in stuff like this and it kinda makes you numb. It's tough to keep a positive attitude but I manage pretty well I think. It's weird though as I often feel disconnected from the rest of the world although I think I've gotten used to it. Cancer and it's effects can make you feel pretty lonely at times. It's so strange to walk around, look at everyone and try and remember what it felt like to be carefree regarding my health. It's a burden that is with you 24/7and sometimes you feel like you're losing it (which is probably normal I think) but typically doesn't last too long. I really cherish the rare times that I can "forget". There was an instance of this last week when I had a chance to play one of my favorite golf courses in Metro Detroit called Greystone. I usually like to play with friends or join other groups as a single player. This time however I had the whole course to myself! There was an outing that just finished up and they let me go out on my own with no one in front of me. I've never had a more peaceful round with it being so quiet and not having to wait for anything except driving up to my next shot. I played 18 holes in 3 hourse which is unbelievable. I shot an 87 which isn't too bad for me and I felt great!


16th Hole at Greystone. Stuck it 12' from the pin but missed the put :(

Went out with a couple buddies here last night, Dennis and Ray. Ray bartends at this really good Vietnemese restaurant in Chelsea called Omai and hooked us up on the food and drinks. They took me to a couple of places after with outside patios, one in the Meat Packing district I think. It was a beautiful night and the Hudson River was in full view from the patio. It didn't feel like a Tuesday night but it's Manhattan and every day is like a weekend here!

I leave tomorrow afternoon back to the D. I'm looking forward to continuing to work on the Bimmer. I ordered a new back window for the convertible top and it arrived right before I left. I guess I've got to sew it in and glue it. Should be fun ;). I've already replaced the windshield which was tedious and my hands were locking up like crazy. I've replaced the seats and got a new muffler put on last week. It's looking and sounding a lot better :) Just need to get the tunes going and maybe some new tires and it's good to go.


Bimmer minus the seats ;)


Took Chili for a drive up Woodward to Long Lake Rd. ending up at Orchard Lake for the sunset. What a blast to tool around in this thing!

Well, its time to crash. I'm shot...

5 comments:

B. said...

Thinking of you kiddo, all the time.

xoxo
B

Gail said...

Hey Chris -
Thanks for posting the update....
still rooting for you in the D. You are my hero for positive attitudes... glad to read of so many great times with friends and family. I understand the disconnected feelings, but know that you have lots of supporters and people who care, but who can not fully understand your journey..
hoping you can get the back pain under wraps...
warm thoughts and prayers
Gail

Gail said...

Hey Chris -
Thanks for posting the update....
still rooting for you in the D. You are my hero for positive attitudes... glad to read of so many great times with friends and family. I understand the disconnected feelings, but know that you have lots of supporters and people who care, but who can not fully understand your journey..
hoping you can get the back pain under wraps...
warm thoughts and prayers
Gail

Anonymous said...

I just want you to know that there are people out there praying for you. I am pretty much a lurker on the Hodgkin's forum board. I was diagnosed in 12/06, went through ABVD & rads & seemed to have beat it. I have read your posts and am always in awe of how you are living life to its fullest & keeping an incredibly positive attitude. I only hope for you to keep on truckin' until they find a cure for this thing.

Susie (Susie9552 on the board)

Veronica said...

Ugh......just when you think life's thrown all it can at you...I guess it's best that they've found something so that it can get treated, but I equally know that whenever W gets more news about yet another health hurdle it knocks him back for a while.
No doubt you're already well down the road of regrouping your strength and are getting ready to do whatever needs done to get this latest under control.....sending the best vibes possible....Vx