Xavier Rudd

Went to see this guy in concert last night and it was awesome! The other two guys he plays with were incredibly talented (percussionist and bassist). He plays a diggery doo and I think I want one now! Kinda makes me want to visit Australia.

Good Times :D

The Report Is In!

And... It's confirmed!! Nothing new and the existing lesions are reduced. The hottest area is my paraspinal tissue next to my T-11 vertebrae and probably the source of the pain in my back.

So, I'm going to be wolfing down my pills every night with vigor hoping that this continues.

Let's keep on rolling :D

Reduction!?

Well, according to my team, pleasantly suprising, I have total disease reduction! The question mark in the title means I still have not seen the actual report and until I do, Im going to refrain from getting too excited. I'm not trying to play Debbie Downer here, it's just that I want to make sure I have all the information. The last couple of times I've been scanned, they never told me about the new activity in my neck. The trial coordinator Sean verbally mentioned to me that the nodes that were lighting up previously had gotten slightly smaller and are showing uptake in the 3's instead of 7.

So, the unofficial word is I have a total disease reduction (the total mass of my tumors) of 32% since I started the trial in April! If the actual report comes back and there aren't any other hot spots that weren't mentioned in the discussion this is pretty encouraging news! Dr. O'Connor mentioned that I'm a hair (actually a couple of milimeters) away from partial remission, wow... I have't heard the word remission in a long time... So you know, a partial remission means my total disease (I have 4 spots that are considered large enough to be considered disease) would have reduced by 50%. So, perhaps by the next scan I can get there...

Anyway, again, don't want to get overly excited but it's nice to hear some decent news for a change.

Accordingly, I went out and tore it up with some friends last night in the West Village. Went to this awesome authentic Italian restaurant called Gaetana's where I ate probably the best shrimp scampi I've ever had... After that, went to this really cool place called Casa La Femme. It was crazy, they actually bring in fresh sod every week to put down on the floor. So, even though you're inside, you feel like your outside ;)

So, time to wrap this up. Need to get ready for a long day of traveling as I need to go catch the airport bus and have to deal with a connecting flight in Myrtle Beach. I'll be getting home late tonight.

It'll be much nicer though now that I can exhale (hopefully) a little bit.

Cheers!

Chris

Waiting...

Just had my scan and went for a Carl's cheesesteak after to feast after fasting. I'm back at NYU now waiting for the results. I thought I saw a glowing spot on my neck when I peered through the window of the radiology room. My expectations are low. I guess I'll find out here within the hour.

Maybe its coincidence or and omen but the room they put me in at the Hope Lodge yesterday is the same exact room they gave me the first time I was here. Will this be the end of my New York adventure?

Stay tuned....

Time is flying

I just realized (from a nice message from a friend) that it's been over a week since I posted. I guess you could say I've been busy...

Don't have anything interesting to report except life is good and I'm feeling relatively well. My scan is this week and the scanxiety hasn't quite kicked in yet thank God.

I leave Wednesday for New York and have my PET/CT scan this Thursday morning with a consult with Dr. O'Connor after. I don't expect good news but remaining optimistic. The whole neck thing and my armpit situation just doesn't seem right. I am, however, feeling pretty good these days physically so maybe there's something to be said about that. This probably has to do with this being my off week from the pills but who knows...

I think I need to bust my camera out again and take some pictures! I realized how much fun I have with that by going through some of my older entries earlier this afternoon. Hard to believe I've been doing this blog for as long as I have. It's interesting to go back and read and remember what my mindset was like for that period of time. I'm so glad I started this blog and have to say I'm really proud of it. Can't tell you how many nice messages and e-mails I've gotten from people all over the world. It really keeps me going knowing people are actually following my story and really rooting for me! I feel really blessed :)

So, unless anything interesting happens between now and New York, I'll update. If not, I'll share the results of my scan Thursday or Friday and subsequent plans.

Good Night,

Chris

Cricket Symphony

Just sitting out here on my deck with Chili enjoying a beautiful Michigan summer night. The crickets are insane out here! They really don't have them like this out West or even Florida it seems... There's also plenty of firefly's out here too and was laughing earlier as Chili chased after a couple.

I'll be enjoying my deck a little more now that I was able to snag a nice old gas grill from my neighbor who lives a few houses down... She was having a garage sale and sold it to me for 10 bucks, what a steal! The thing works great and even has the original tank which still has gas in it! Can't wait to do some grilling...

Last night was fun as I had a chance to go see Kid Rock at DTE (Pine Knob). I'm not really a huge fan but have to say he puts on a great show. People here in Michigan love the guy and I have a lot of respect for him for the love he gives his home town. The people watching was great! Kid Rock appeals to such a wide audience...

Looking forward to having a better week this week as prior to last night, it was a struggle pretty much all week. I think I'm in a better place now after getting myself back together from the threat of disease progression and some personal setbacks. Life can be such a roller coaster, jeez...

Thanks again for the support in reading this and to those of you who are kind enough to leave nice comments. I really appreciate it :)

Don't panic...

Real quick, went to see Dr Ram yesterday. He inspected the lump under my arm and isn't so sure it's a lymph node. He sad because it's so close to thE surface of the skin, it could be a cyst, clogged sweat gland, or subcutaneous something or other. H didn't rule out progression of Hodgkins here as the disease does occasionally travel outside the lymph nodes (as with my para spinal disease) but did think this was unlikely.

So, the plan is to continue on this cycle of S@N and get scanned in a couple of weeks. New York is still on although it may be the last one if this stuff in my neck has gotten worse or the armpit lump is hot.

So, time to exhale and play a round of golf at a beautiful golf course here in Michigan called Pine Knob.

Thanks for the words if support :)

New Lump

I'm having a rough week... Was in the shower last night and found a pea size hard lump under my right armpit, not good. I've emailed Dr. Ram and hoping to get in to see him asap. Kinda hoping they want to remove it and biopsy it so I don't have to feel it and I have fresh tissue to send to other trial sites around the country as they usually require this. This is assuming it's progression of my disease. I can't imagine what else it would be being directly in my axillary area of lymph nodes under my arm. I had 3 removed here before on my last biopsy and it caused lymphodema so that would be my only concern (besides Hodgkins of course).

I'm trying to stay calm but it's really tough. No matter how many times you discover something isn't working and the disease is progressing it always freaks you out. Just hoping I can get into the RAD001 trial here as it had a 53% response rate in Phase 1. Yeah, flipping the coin at this point is about as good as I can get. So, it looks like New York may be done, I think I've done pretty much everything I wanted to do there except see a show and do the museums. That's touristy stuff anyway right?! I had a chance to experience the real New York with people who actually live there and don't think you can beat that.

So, I take a deep breath, a Clonazepam and hope for the best.

By the way, my prayers and good thoughts go out to my Auntie Linda who's mother passed (from what else, cancer). She was a very sweet Lady and know her family will miss her. See you guys at the funeral tomorrow.

Chris

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...