Ratatat!

Me before leaving for the show, there's a little bit of hair growing underneath that lid! ;)

Went out to my second concert since SCT's last night and had a blast! The project was Ratatat and these cats put out a lot of sound for just two guys! Quite a contrast from Andrew Bird who I saw a couple of weeks ago (I've got tracks of his on my music player). It's great to be able to get back out although I still feel no where near my old self. I feel like an old man not being able to keep my eyes open when midnight hits! Unfortunately, they didn't come on stage until around 11 and I couldn't stay for the whole show. Oh well, it's all about enjoying the moment these days and have to say I enjoyed myself while I was there...

For documentation purposes, I wanted to note that I did have a couple of beers and unfortunately had some achiness that has plagued me since this hideous disease started growing in my body 3 or so years ago. It wasn't radiating pain but more of a dull ache on the right side of my back and in my chest. I've got to keep monitoring this as if it gets worse, I may be in some trouble. For the time being however, I'm going to chalk it up to my tumor sites being sensitive still and the alcohol must be causing my lymph nodes to swell a little bit when I drink and thus the discomfort. I pray to God that this is all it is. I mean, I just had a clean PET scan less than 30 days ago right!!

To be safe, I put a call in to my Onc. requesting they review my scan to see why I'm having this pain in my back (it's there when I don't have a couple of beers too, just not as achy). I had 3 tumors near my spine on discs T-9 through T-11. I want to know if those had resolved or where the same size, just not hypermetabolic when I had the PET.

Getting ready to dust off my bike either tomorrow or Wednesday knowing the weather is going to continue to get better and I need to get some cardio exercise without running as my knees are shot. I've got this great old Schwinn Varsity classic 3 speed that needs a little TLC. It's been under a tarp for the last year and a half and hope it's not too rusty!

Lastly, I think I'll be ready to take my Flamenco lessons in around 3 more weeks as I wait for my finger nails to heal. I've been trying to play but can't tell you how painful it is when I catch one of my hanging nails on the string, ouch! This is happening playing with a pic. The thing about Flamenco is you have to play with your fingers, enough said...

One of the few tricks I taught Chili (notice treats on her paws)!

Heading back up the rollercoaster...

Well, I think I have my head back together after a couple (or more) rough days. Funny how your mind plays tricks on you when your body is doing things that aren't very comfortable or normal. This is still pretty much the case but I evolve and learn how to deal with new challenges as they arise...

So I'm up late again, unable to sleep, listening to this great mellow band called Bon Iver. Hoping their soothing sounds will kick in my circadian rythms and let me drift off to sleep (or the Ambien kicks in whichever happens first)!

It was brought to my attention that I'm probably not ready to start my epic road trip as soon as I wanted to... I have to agree that I'm not sure if I'm physically or mentally ready to jump in my car and drive 7000 miles! That said, I think if I delay it for a few weeks I should be in much better position to enjoy it that much more.

One good thing that has come out of this whole ordeal is I realize now more than ever that I'm obligated to help people out who are in my similar situation (i.e. relapsing primary therapy for Hodgkins). The reason I say this is that there are so few of us out there it's so hard to find useful information and have had friends who seemingly were rushed through their treatment only to find that it may have not been the best option for them. Because Hodgkins is so rare to begin with (only 8000 cases diagnosed each year) and 90-95% of those cases will be cured with first line treatment, there isn't an overwhelming pool of information or support out there for those of us who happen to fail first line treatment and need to go with a salvage option. While those salvage options are slowly expanding, there still aren't enough out there as one size doesn't always fit all for each patient. That brings up another point. Because there are so few of us who are considered "refractory" (as of the latest PET scan, I guess I'm no longer in that category knock on wood) there are even fewer options if you fail an auto SCT. There are a couple of promising new trial drugs out there, SGN-35 (the company that makes it is right here outside of Seattle) and a couple others. It's just that drug companies aren't as motivated to come out with as many new drugs for such a small pool of patients and that to me is sad. It's going to take some high profile folks with refractory cancer (like Arlen Spector) to speak out and demand more research be done on this rare but number 1 cancer in young adults. Did you know that Mario Lemieux (the hockey star), Rowdy Roddy Pipe (WWF) Paul Allen of Microsoft have all had Hodgkins? I'm sure these guys have done a lot to bring awareness and hopefully research funds to the disease but obviously more must be done. When I figure out how I'm going to help, it'll be a satisfying day for me...

As for life in general, continuing my quest to get into shape with another killer day at the gym today. I'm feeling much stronger and able to increase the weight on the machines. It was pretty embarrassing the first few times doing reps on the machines with little or no weight! I think most of the women were using more weight on the machines than I was (not to sound sexist!). The worst part about it I was actually straining pretty bad! Yesterday, I cam home from the physical therapist who's helping me with my Lymphadema in my right hand and she suggested I do some squats at my house with no weights. Easy enough I thought... All I did was squat two sets of 25 again with no weight. I swear to you today I could barely walk!! I mean, I have a hard time getting off the couch! I still can't believe I was able to go snowboarding with such weak legs! Crazy...

Finally, can't wait to try some tips I got from Caesar the dog whisperer tonight! He was in a womens correctional facility where they would take "last chance" dogs to see if they can be rehabilitated. I really respect how the guy can take the most problem dogs and turn them into well behaved "pack animals". The man definately has a talent and wish I could get him over for a private lesson with my dog Chili. I guess I'll keep watching his show ;-)

By the way, shout out to my cousin Matt who with his team made their first drug seize at the Arizona border where they were able to confiscate $460,000 worth of who knows what... Also wanted to congratulate my Sister for getting on Facebook! I think she's really enjoying it and I'm happy for her. Finally, wanted to send positive vibes to a fellow Hodger Marsha who's having a hard time after her stem cell transplant failed and is now searching for an effective clinical trial that'll get her disease under control so she can feel better. It seems like everything they've tried on her thus far hasn't worked. I know there's something out there for you Marsha, keep the faith!

After a request by my Mom, I thought I'd do a quick update! My life is pretty boring lately so I don't have a lot to say...

Still struggling with my energy and some pain issues in my back and stomach plus my fingernails are falling off but other than that life is good! I've been hitting the gym at least 2-3 times a week and starting to feel stronger in my upper body. I take my dog for walks and sleep quite a bit. How's that for an exciting life! Thank God for March Madness!

I think the most difficult thing right now is figuring out how to cope with the after shock of so many months of therapy and the looming possibility that the cancer may come back. I don't know if that will ever go away so it's my constant challenge to keep the fear in the background and enjoy my life. I know it'll get easier as time goes by and once the pain I have starts to dissipate. Until then, I think I just need to keep myself as busy as possible and keep looking forward. It's normal (I think) to feel the way I feel after what I've been through. I just want to get my carefree attitude back... How long do I have to wait? Time will tell...

The pics are from a trip to Marymoor Park yesterday which is the Mecca of all offleash dog parks in Seattle!!

Snowboarding!

So this last Saturday morning, Jackie and I decided to take a little drive to the mountains. It's crazy, it was around 45-49 degrees and dry here in Seattle and after driving 45 minutes east, we were at Snoqualmie Resort in the Cascade Mountains and there was snow everywhere!

We decided that we would learn how to snowboard! Neither of us have ever tried it so we got a package deal that included lift ticket, rental and lesson. I'm really glad we did the lesson to get the basics down. I have to say, it's a lot tougher (snowboarding) than it looks. Of course having a double stem cell transplant a couple of months ago probably had a little to do with that... It's really important and helpful to have strength in your legs which I have very little of these days. The hardest part for me was toward the end of the day when I would wipe out and trying to get back up! It would take all of my strength just to get back up only to wipe out again the next minute! That said, I think a couple more times and I'll be shredding out there!

Good Times!!

I've been slacking...

On updating this blog that is! I went back to Michigan for a quick visit and surprised my Mom by showing up at her surprise 60th birthday party! It was a surreal experience as she had no idea I was coming into town. The way it went down is I showed up just after the surprise happened and masqueraded as one of the catering guys... I had the chef hat on and everything ;) I carried one of the trays downstairs where the party was, found my Mom and asked her where she wanted the tray! She was of course shocked and overcome by emotion. It was a really nice moment (although I was a bit overwhelmed myself and the 30+ people gathered around to witness it!)

All in all, it was a great trip getting a chance to stay with both my Mom and Dad. I wish I had more time to see friends and family but looking forward to May when I return and can spend more time relaxing and catching up with everyone.

As for life back here in Seattle, I'm slowly getting my strength back and pretty much my life back. I went to the gym for the first time today and know I'll be feeling the pain tomorrow. Also glad to report that my appetite is almost all the way back and hoping that I can put on a few pounds. Finally, my hair is growing back in everywhere (some places more rapidly than others). It's been so long that I've had hair... When looking at my head in the mirror, it seems like the hair on the sides of my head is growing in much thicker than the top. Has the chemo and radiation accelerated my male pattern balding?! I've read that the hair will grow back at different textures/thickness/color. I really could care a less, at least I have hair coming in and my eyebrows are back! I'm thinking of growing a beard, or at least letting my face match the progress of my head. My rationalle is balance, or distraction! Whatever it is, it's easy maintenance like I've become accustomed to these last 15 months. I forgot what a pain in the ass is it to shave every day! One nice thing about being chemo bald was not having to worry about shaving ;) Not that I'm complaining though as I'd much rather have to shave than look sick like I have for so long...

So from here I'm going to start planning my road trip. I'm thinking of getting it started around the first of April. It's really exciting and daunting at the same time. I calculated the whole thing to be around 7000 miles, yikes! The nice thing is I can take all the time I want. I've got peep's scattered on my route so it'll be nice to take breaks and visit with some of them. I'll also have my trusty travel companion Chili with me to help keep me company. Not to mention, I'll have people meeting me at destinations (i.e. L.A., Austin) to join me for legs of the trip.

That's it for now... To all my fellow Hodge Warriors out there (and cancer survivors in general), I'm always rooting for you!!

So I met with my P.A. in person today and she told me to embrace the good news! The other stuff regarding the assymetrical uptake in my brain we're going to wait on which is fine by me. She says it could be a number of different things and we'll check it again in 3 months when I have a follow up CT scan.

What now?! This is all so surreal that I'm embarrassed to say I don't know how to act. You get so used to contstantly having the anxiety of present disease, the doctor visits, etc... I mean I've been sick for 15 straight months! How will I cope!? I'm pretty sure I've got some post traumatic stress disorder issues going on...

On a positive note, I'm so unbelievably relieved! It's going to take a little while to sink in I think. It's weird to have the monkey off my back... There's a part of me that can't get too happy because I'm one dirty scan from going back to where I was, in treatment. It's a scary proposition to say the least. For now though, I'm going to do my best to focus on this new cancer free life and do everything I can do to make it last!

Suck It Cancer!

Good News (I think)

Well, I got the results back from my P.A. regarding my PET scan and it looks like I had an "Excellent Response"!!! All of the previously infected nodes have resolved and there is no evidence of viable disease (no uptake)! Great news!!!!!!

There is one caveat however, and it's a scary caveat... There was a portion of the report that stated I have "assymetrical uptake in my cerebral cortex and left opcipticlal (sp?) muscle. This could mean nothing... Or, it could mean that the Lymphoma went up into my brain/eye muscle to hide out while the war was raging down in my body. There's such a thing as the blood brain barrier (bbb) that prevents any chemo from entering the brain. It's standard operating procedure to check the brain for any evidence of disease via spinal tap prior to therapy. However, my transplant onc. checked the results of my required bone marrow biopsy and thought I was an extremely low risk for the cancer to be in my brain based on having clean bone marrow. I kinda wish I would have had that test now but what can you do?

So, the next steps are to go to my consult with my primary Oncologist on Monday and peg him with questions. My buddy fighting a Glioblastoma e-mailed my information to his Onc./Neuroligist and he recommended I get an MRI and spinal tap (although he's not intimately familiar with my particular case). I'm just going to wait and see what happens and like always hope for the best!

Until then, I'm just going to try and enjoy the great news and focus on the "Excellent Response" I had from the two stem cell transplants.

Why can't things ever be easy?