Adjusting to life in the D

(GM HQ's Downtown Detroit aka "The Renaissance Center")


(The D.I.A., one of the finest art galleries in the country...)


(My new digs, not too shabby...)

It's Sunday afternoon and just sitting here enjoying my first cup of coffee in a while. The anxiety is finally settled down to where the caffeine doesn't freak me out too much! Plus, I've been trying to avoid anything acidic as I'm trying to keep my bodies' PH level neutral or alkaline to slow down the cancer growth (or at least that's what I've read).

Been having a good time relatively speaking! I've been pretty active running and biking plus hanging out with friends and family. Strangely enough, I've gotten into cycling from a run I did earlier in the week. On my route, I found a garage sale where this sweet late 70's/early 80's vintage Fuji road bike was leaning on the corner of the garage. I stopped my run and went up and asked the nice lady how much they were asking and she told me $10!! I told her I needed to run home and grab some cash and I'd be back to buy it. What a deal! I looked on google and found people selling these bikes for anywhere between $250-$500!! Score!! I needed to clean off some surface rust and will need to replace the tires but otherwise it runs great :) I think I'm going to start hitting some more garage sales and try and make some extra money selling stuff on ebay since I'm not working (plus it's fun).



Went to my cousin Jeff's going away party yesterday and had a blast! He's been offered a job teaching in Hawaii!! I couldn't be happier for him, Jeff's a great guy and deserves it. The party itself was fun as we played what my cousin Nick called "Polish Horseshoes"! I found out the actual name of the game is "Washers". There's basically a wooden base framed with 2x4's (3 feet square approx.) with a giant sized tin coffee can bolted down in the middle. You stand about 20 feet away and try to toss 2" washers into the wooden base for 1 point and into the can for 2. If it somehow lands on top of one of the 2x4's you get three points. First team to 21 wins. Nick and I ended up taking down the champs! Good times...


(Stock picture of Washers game, our's was much more authentic ;)

So today I relax as I'm not supposed to do much physical activity. I've got a crazy day of tests tomorrow as I've got a CT/PET scheduled along with a bone marrow biopsy. I was supposed to get my scans last Thursday but there was a mistake made by someone who sent me to an off site office for scans when my protocol calls for the scans to be done at the institution that's running the clinical trial (DMC).

Once my crazy Monday is over, I fly out to Seattle on Tuesday to begin packing my stuff for the drive back to Michigan. Should be interesting sitting on a plane for 6 hours after a bone marrow biopsy... Anyway, beyond packing my stuff, I'm looking forward to another long road trip through the northern part of the country. I'll also have a human companion this time as Jackie's going to be driving home with me :D She plans to stay in the D for a while as her sister's getting married in July.

So, overall, I have to say I'm doing ok... Just trying to remember to breathe and live in the here and now through Mindfullness. It's a process but I'm getting better at it thankfully.

Happy Sunday!

What Are You Waiting For?

"The French have a song called"Qu'est-ce qu'on Attend Pour Etre Heureux"? (What are you waiting for to be happy?). When I practice breathing in and I say, "I have arrived," that is an acheivement. Now I am fully present, one hundred percent alive. The present moment has become my true home.

When I breathe out I say, "I am home." If you do not feel you are home, you will continue to run. And you will continue to be afraid. But if you feel you are already home, then you do not need to run anymore. This is the secret of the practice. When we live in the present moment, it is possible to live in true happiness."

Thich Nhat Hanh, "no death, no fear"

Getting my head together...

It hasn't been easy and by no means am I back to normal (actually forgot what normal is) but I'm picking my spots and trying to enjoy myself the best I can. I went out the last couple of days and played some golf with friends on Thursday and my Dad on Friday. Dinners at Mom's with Rich and Nicole have been very comforting and tasty! I'm so glad I can hang with Chili again too!



Today, a good buddy of mine, Todd came to pick me up at Mom's and we went down to the ballgame at Comerica Park in Detroit. It was a great game with us winning 9-4. We also had a chance to grab a bite in Greektown and take a ride on the People Mover.



Downtown Detroit seems in better shape than what I remember before I left 5 or so years ago. We also got a chance to go down to the site of the old Tiger Stadium where they're in the process of tearing it down. It's surreal seing the old ballpark (or whatever's left of it) in shambles... I have so many fond memories of going down there with my Dad when I was a kid then as a teenager with friends. Todd and I actually managed to talk the security guards into giving us a couple of bashed up seatbacks for memorabilia. I'll miss that old place...





As far as the stupid cancer thing goes, I have a PET scan scheduled for June 25th and a follow up appt. with my new Onc. on July 8th. If everything goes according to plan, it looks like I'll be staying in Detroit to do the every 21 day trial of SGN-35. My doctor called and told me the data from the weekly trial is almost exactly the same as the data from the every 3 week trial so it's a no brainer. While the complete remission % are somewhat low, the overall response rate (or those that showed reductions in tumors in in the 80% range so I think that's pretty good. I'm not going to pay attention to the stats however as I know how far that's got me so far... I'm just going to hope and pray that this drug will keep my disease under control for as long as possible and that those who are doing the Phase 1 trial for second application of the drug show good second responses. This will mean that SGN-35 might be a viable Hodgkins maintenance drug in the future. We're talking 2011 probably at the earliest so it's still a ways off and there are so many more steps and data that needs to be accrued. With that said, I sure hope there are other emerging targeted anitbody therapies being developed as this seems like the future of cancer treatment. It's a chemo that only kills cancer cells and not your good cells (like I've had so many destroyed already). I'll post information as I receive it. By the way, for anyone interested in this stuff, here's the trial data up to this point: http://www.seagen.com/clinical/35trialsf.htm

So tomorrow my Sis and I plan to go out to breakfast with Dad and come back and hang out with Dad#2 Rich. Should be a nice day!

Figuring Things Out...

(And not what kind of tree this is... Seattle has some weird looking trees!)

So I met with the trial coordinator at Karmanos today and everything went ok. I have a PET scan scheduled for June 25th to confirm what the docs think at the SCCA (recurrence). The only loose end right now is if I should pursue the trial here which doses every 21 days. There's another trial of SGN-35 where they're dosing on a weekly basis which is supposedly showing better results but the closest center that has it is in St. Louis (to Michigan). So, I'll probably end up staying here and see what happens.

This is still so very surreal... Naturally, I'm having a difficult time accepting all of this and I think my mood the last week reflects it. It's just hard to be enthusiastic about anything right now. I know this will pass because I've always been a positive person but this is really tough...

I'm reading a book by Thich Nhat Hanh right now called "no death, no fear" and it's helping. I think times like this (as well as life in general) a Buddhist perspective is really helpful. The trick is to live in the moment and realize every day that we're alive or "manifested" (Hanh's description of life) is a blessing. I think I get most bummed out when I think of the future and the major obstacles that I will be facing (once again). Hanh really stresses the "impermanence" of everything and how nothing really dies but just "re-manifests" itself. This is a pretty weak summary but you can get the gist of it ;)

No matter what, I'm just going to continue to try and live my life to the fullest and try not to feel sorry for myself. I know this won't do me any good... I feel that I've been able to achieve so much in my life and everything else from here on out is "gravy"! I just need to do my best to remember that "gravy" comes in so many different flavors... :)


(Jackie doesn't like me posting pic's of her on here but thought this was a nice one in front of her place on my last visit and thought she wouldn't mind ;)

Karmanos

So, I found out Karmanos Cancer Center here in the D is participating in the SGN-35 trial! From here, I need to get registered, get my records sent over from SCCA, and go through the tests (i.e. PET scan and bone marrow biopsy). Hoping everything goes smoothly and no headaches...

I'm still holding out an ever so small hope that the PET scan will come up clean and this is all just a cruel joke! Realistically, I know this isn't going to happen but it doesn't hurt to dream right!

It's comforting to be home here with my family during this... Even though I'm down, it's nice not to be isolated like we've been out in Seattle during this whole mess. Looks like I'll be flying out there one more time on June 30th to get my stuff out of storage and drive it back to Michigan where I'll be starting over (literally).

The most important thing right now is to try and keep everything in perspective and try not to look too far ahead. I feel relatively healthy (physically) and want to take advantage of it!

Time to make some big plans!

CT Results

So I met with Dr. Shustov today and unfortunately things didn't go as I would have liked them to...

It looks like my cancer may be back as I have two enlarged nodes (although small) in my retrocrural space on my right side. In other words, right around the middle of my back on the right side where I suspected there was an issue.

Needless to say, I'm devastated. To confirm what he thinks is refractory cancer, Dr. Shustov has ordered a PET scan tomorrow. I asked him the odds of this being an infection or some other type of inflammation and he said 1 in a million, obviously not good...

After shedding a bucket load of tears, I'm ready to dig my heals in again and go to the next step. I have a lot of things to figure out. There is a current clinical trial that is recruiting at the moment for a new drug called SGN-35. I don't think I'm going to stay out here in Seattle as I want to be close to my family during this. My two options at this point are Ohio State and Loyola of Chicago. I would have to drive to one of these locations once a week for 3 weeks and then have a week off.

I'll post more after my PET tomorrow (most likely Saturday evening).

Thanks for the support :)

Scan Complete, Need Distractions...

Well, I thought I might refrain from posting until I get the results of my scan back but I've decided I need an outlet (or 20) to mitigate my anxiety. Yeah, I have medication for that but right now it doesn't seem to be enough...

Like I mentioned, I had my CT scan today and it was pretty normal except my doc had ordered an extra scan of my brain. I understand why he wanted this as the last CT showed some abnormal asymmetric uptake on one side of my brain as well as uptake in my occipital (sp?) nerve. I'm not really concerned the cancer is in my brain as multiple people have told me that if it was in my melon I'd definitely "know it". My biggest concern right now is the pain I have after a beer or drink. It's not quite like the radiating shooting pain I used to get after a few sips where I'd literally be doubled over... Now, the pain is more like a muscle ache that contorts as I flex my back. The scary part is that it's in the same spot where I've always had the pain, on the right side of the middle of my back. It's also different now in that the pain lasts much longer than it used to, like a couple of hours. Not to mention, the pain doesn't come on after only a couple of sips like it used to... I had a Margarita at dinner tonight and the pain didn't come on until I was done with my drink.

Another weird thing is that when I put my head down (i.e. taking my chin and lowering it to my chest) I get a numbing sensation that goes down my back into my legs. This just started happening the last couple of weeks. There's some craziness going on inside this body!

This stuff will drive you crazy... I thought I had the strength to deal with any scenario (results of my scan) but the truth is I don't know if I do right now. No matter how much you try and prepare yourself for the worst, I know that I'd be totally devastated with a dirty scan, just being honest. If the cancer is back, my only option is to pursue clinical trials to try and prolong my life hopefully until a cure may be available. I don't want to go through an Allo transplant where the mortality rate doubles the cure rate...

I guess the trip I took had some unintended consequences... I had a wonderful opportunity to feel "alive" again! That small taste I think has made me greedy... I want more!! That's not to say I still can't live a great life on clinical trials, it's just hard to imagine again dealing with all of the side effects of the drugs (and disease) as well as knowing there's something growing inside my body that one day will kill me if the drugs stop working.

I don't mean to be a downer with this post... I just want to be honest about what's going on inside my head right now as it's cathartic to "let it out". On a positive note, the itch/rash that I've had the last few weeks seems to have gone away for the most part. It used to be under my forearms, under and on the sides of my knees as well as my calves. I bought and used some Lamisil on these spots and it's now moved to the inside of my thighs which leads me to believe it's some sort of fungus. Not to mention, besides still feeling fatigued by the middle of the day, I feel pretty good overall! I have most of my strength back and haven't lost any more weight (actually put a couple of pounds on).

So I think I've accomplished what I was looking to accomplish when I started this post, I feel better! It's amazing what a relief it is to get your feelings out... Now I understand why women live longer than men! :-D I actually just got done watching "Frost Nixon" and may have subconsciously been moved to post tonight after seeing how Frost persuaded Nixon to confess his mistakes (re: Watergate). He persuaded Nixon to confess so he wouldn't have to carry the burden any longer. Pretty decent movie but I digress... ;)

Like I've said before, I've gotten by through expecting the worst and hoping for the best (that obviously hasn't changed ;) Thanks for reading this and thanks in advance for the good vibes/prayers.

Florida!

(The best dog traveller on the planet, Chili Carr!!)


(My Bro's! Ramil left, Dan right)

Here in Michigan rubbing my eyes after an exhausting 16+ hour drive yesterday! I wanted to see my family here in the D before I fly back to Seattle for my scan...

Had a great time in Florida! It's definately tropical there right now with the afternoon downpours and the thick humidity. So great to see all my old friends and meeting some new ones too :)

I had the honor of meeting 4 other members of the Exclusive Hodgkins Community! First, I took a drive down to South Beach Miami and met up with Alison/Adrienne from Vegas and Bekah all the way down from Boston. Adrienne and Bekah are battling refractory cancer and are currently on trials. Both women are very successful pursuing degrees that will allow them to make a positive impact on young peoples' lives. I am inspired, comforted and empowered by the both of them for their courage and spirit. Not to mention Adrienne's Mom Alison who has been very active in the Hodgkins Community and a generous wealth of knowledge to other HL survivors.


(From left, Alison, Adrienne and Bekah at this great seafood restaurant on Ocean Blvd. in South Beach Miami)

Also had a chance to meet Anastasia from North Florida who is 3/4 of the way through front line therapy and doing well! She's a very talented musician and just released her first CD "Of the Resurrection"! Here's the link if you would like to purchase some beautiful music and help out a fellow Hodge Survivor! You WILL feel good after spending the $15.00 and Anastasia pays for the shipping!

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=JiWnjaR3shzAaI1bx3SWfVLSmjexwtsq8XQ4jpu-gaP9sufe1NwwTqMX_4a&dispatch=5885d80a13c0db1f998ca054efbdf2c29878a435fe324eec2511727fbf3e9efc



So besides meeting these lovely ladies I was able to take in some good ole Florida sun and indulge in some great Florida seafood! In fact, quite a bit of the fish I was able to catch myself :-D Some generous friends invited my buddy Dan and I out when I first arrived and we went out and caught some Snapper and Dorado (Mahi-Mahi) which were absolutely delicious! Also went out with Dan's brother Mike right before I left and we landed 4 keeper Mutton Snapper, a nice little Kingfish, Rainbow Runner and a couple of "Boneheads" (Bonita) that we ended up using for bait! We got back that day and had the King for lunch, delicious :-p After a swim in Mike's pool we rested up and ended up going to some friends' house for a big fish cook-off! I guess every year this guy has a party where everyone brings over their fresh fish and they do an Iron Chef style cook off... It was incredible! It started off with fresh Yellow Fin Tuna Sashimi with just a squeeze of lime, melted in my mouth! Next was a full table of cooked fish from beer battered Mahi, grilled Cobia, baked whole Snapper (I caught that one, still had the hook in his mouth! ;), and seared Tuna with ginger sauce. Mike, the host, even went out and bought a bunch of Alaskan King Crab Legs :) We ate for 3 straight hours, no joke! Had to work off the food with some epic ping pong matches... Great time to say the least!


(Me and Dan with dinner, Mutton Snapper!)

It was really nice just hanging out on the beach too... The water was so blue and warm! In fact, the water seemed to be the same temperature as the air, somewhere in the 80's. I just floated on my back with my ears under the water so it was quiet and stared up at the fluffy clouds in the sky. It was a very spiritual moment...

No matter what happens with my upcoming scan, I feel at peace with everything and feel lucky to have experienced all of the incredible things on this trip. I have so many great memories and will cherish every one of them.



So, I leave tomorrow from Michigan to fly back to Seattle. I have a scan on the 8th and will find out the results on the 11th. I wish I could just get in over with tomorrow as the waiting is the hardest part. I may post again before the scan but likely will wait until I get the results.

Hope to have some good news