Wednesday, September 3, 2008

2nd GVD Infusion


Well, here I am in the chair for my second GVD infusion. I’m excited to get the medicine flowing through me to help me in my continued quest of “remission”. I think the first infusion has done some damage to the tumors as I no longer feel the back pain in the evening like I did in the weeks after ICE. I can also feel the small tumors (under my arms, on my spine, in my abdomen and in my right pectoral area that showed up on my PET) dying or being squeezed. Yeah, I guess the best description is a squeezing feeling rather than pain. I’ve read on my Hodgkins forum that this is a common sensation from chemo that my fellow posters report as “tumor shrinkage pain”. I know this is what is happening to me too…
The large tumor in my chest seems to be shrinking as well. I can take deeper breaths these days and can hold my breath for 1-1:30 without too much trouble. There is scar tissue in my chest from the Bleomycin (from my first ABVD regimen) so I think the pain I feel in my chest when inhaling is from the scar tissue (mostly) rather than the tumor. I think this infusion plus another cycle will be enough to shrink and kill this tumor for good!
There is an area that is more of a mystery and I’ll be trying to monitor it more closely… The area I’m referring to is the tip of my 5th rib posterior which contains a lytic lesion that’s been there at least since February of this year according to CT scans. There is a soft tissue component in the rib that contains cancer and has been eating away at the bone. The SUV level on my last scan was 7.0. I’ve had pain in this area since I’ve had disease. In fact, I can remember one night when I was living in Socal where I woke up feeling like someone stuck a knife in my back. This is an area that I felt intense pain after a few sips of alcohol as well. Once I finished the ICE chemo, the alcohol pain went away thankfully. Like I mentioned, I have experienced pain in this area recently (dull pain) especially yesterday starting in the afternoon. This area along with the tumor in my chest will be putting up the most resistance to the GVD chemo I think.
I can imagine however the GVD chemo working with my immune system in this area especially hard for this infusion and my next cycle since a lot of work has been done on the smaller tumors. Gabe, my Oncologist’s P.A. mentioned to me that there are tons of blood vessels that go through the rib area so it’s only a matter of time before the cancer in this area puts up the white flag and submits to my hired (GVD) and own bounty hunters. I will have a hollow area in that portion of the bone but through research have found out this can and will heal in a couple of years. There may be some discomfort during this time but nothing I can’t handle.
Finally, I want to say something about my immune system. I know that it is capable of protecting me from this and any other cancers once we get this thing into remission. The last few years I have taxed my body with stress and bad sleeping patterns not to mention putting things in my body that don’t help keep my defense systems strong. I now know the importance of rest, good nutrition, relaxation and prayer and how it can help my immune system fight off foreign invaders. This is why I know the GVD chemo will work for me as it’s gentler on my immune system which is needed to help the chemo rid my body of the Reed Sternberg cells and ultimately prepare me for my stem cell transplant.

Monday, September 1, 2008

Bumbershoot!




What a fun weekend! Who says you can't live life with cancer! :-) Went to all three days of the Bumbershoot Music Festival (been coming to Seattle since 1971) and had a great time. Had a chance to see Beck, Stone Temple Pilots, Death Cab for Cutie, Xavier Rudd, Orgone and some others. The whole experience was awesome, Seattle Rocks! I felt pretty good as I've been able to tolerate the GVD chemo reasonably well. The only side effect so far has been fatigue and minor nausea, things I can live with...

I'm continuing my visualization of the cancer dying in my body and writing about it helps me continue to do so! Who knows, maybe you don't need to have major side effects and feel like total crap for chemo to work (i.e. ICE chemo). I've got another infusion this Wednesday so I'll do my best to enjoy these next couple of days. Plus, my Mom and Sister are leaving Thursday so I want to enjoy my last couple of days with them. It's been really nice having them out and will definately miss them when they leave. I've come to realize more than ever how important family is...

By the way, I've finally figured out how to install a music player on my blog. I've been trying to pick tunes that reflect the state of mind of a cancer survivor. You try and stay optimistic and positive but the reality is you don't always feel that way. Emotions like anger, fear, anxiety and sadness creep in and I think it's reflected in the music (although I've tried to focus on the inspirational!). It's a work in progress like this blog and any recommendations are welcome. You can make comments by clicking on the comments portion of the blog (duh!).

Well,that's all for now, hope everyone had a great holiday weekend. Sorry for anyone who lives in the New Orleans area and had to evacuate. Prayers are with you...

Wednesday, August 27, 2008

Going back to War


Just wanted to post a picture of the enemy that I'll be hunting and killing starting tomorrow with the help of my new weapon GVD. This is the son of bitch (named Reed Sternberg) that has been making my life hell the last 11 months.

Wednesday August 27th is the last day Mr. Sternberg and his buddies will be roaming around and freely dividing in my body. So, let's all say goodbye and good riddance!!

Monday, August 25, 2008

New Plan

Well, just got back from the Doc and he outlined our new "strategy". He's going to put me on a new chemo starting this Wednesday called GVD. This chemo has shown some success with relapsed or refractory Hodgkins so we're hopeful. The best chance I have with a transplant is to get my disease into complete remission before SCT.

The only caveat (and it's a big caveat) is that if this chemo doesn't work and the disease progresses while I'm in treatment, I might not be able to get a transplant. Not that all of my eggs are in this one basket but close to it...

Needless to say, these are stressful times. Thanks to all of you who've sent cards, messages and prayers. I hope to have some good news after my first CT scan on Sep. 11th as they're gonna check the progress after one cycle of chemo to see if it's working.

Keeping the Faith...

Thursday, August 21, 2008

Back to the Drawing Board...

Well, after consulting with my "team" yesterday at the Seattle Cancer Care Alliance I'm sorry to say that the 2 cycles of ICE chemo didn't do what it was supposed to do and I have to start over. In other words, the chemo only held my disease stable when it was supposed to put it into remission. The doctor described it as putting a lid on boiling water. The water is boiling but none of the water has spilled out. It could be worse I guess as my disease could have progressed... That said, I need to go back to my oncologist and try a new chemo combination.

I think what they're thinking is a Gemzar based regimen to be technical. I'm hopeful that whatever I try next will get me into remission so that I can proceed to transplant. The problem is they won't let me get a transplant unless I'm in remission so I'm hoping and praying this next chemo works.

As for my state of mind, I'd be lying if I said I wasn't dissapointed. Not only did I waste two months getting toxic chemicals pumped into me, the odds of me getting into remission are lower as ICE has been shown to be the most effective salvage chemo regimen according to studies.

On a positive note, Jackie and I decided to use the tickets I bought months ago for Radiohead as they played live at the White River Ampitheater in Auburn WA. We originally had lawn tickets but decided to sneak down (he he) into pavilion and ended up fairly close up center stage! Good thing too as it was raining cats and dogs for most of the show. We did get a little wet on the walk to the car but it was totally worth it as it was an awesome show. We've always wanted to see those guys and it was a concert I'll never forget.

Finally, I just wanted to mention a dear person who I haven't met in person but know from my hodgkins lymphoma forum http://forums.lymphoma.com. Her name is Bekah and she just found out her stem cell transplant failed and her cancer has come back extremely agressive and things aren't looking good. My prayers go out to her and her family and hope that they can find comfort during this rough time.

I'll probably update when I meet with Dr. Shustov (my oncologist at SCCA).

See ya

Tuesday, August 19, 2008

Jack's Back!



It's been a long 10 days but my baby's back! Welcome home honey... Wish I could have went with you to the D but I've got to deal with this little situation here in Seattle. Looking forward to hopefully going home for the holidays (a major stretch but who knows) but realistically looking at going home next summer or spring.

Anxiously awaiting my consult with my team on Wednesday after a long PET/CT scan today. I just want to get my schedule together so I can make plans (visitors etc.). Found out my good buddy Mike (Dog) is coming out Sep. 11-14th and really looking forward to it. Hope I feel ok...

Update Wednesday night...

Sunday, August 17, 2008

Trip to Mt. Ranier



Took Mom and Sis to Mt. Ranier yesterday and had an awesome time. Great way to get my mind off of things and put things in perspective. Each time I go there I'm still in awe of the beauty and serenity of the place.

The timing was perfect as I have my first post ICE PET scan tomorrow morning. I'm expecting the worst and hoping to be pleasantly surprised. If the PET is "dirty" I'll have to do another round of ICE or get localized radiation. IF it's "clean" I then move on to SCT.

I have a consultation with my doc on Wednesday and will update my next steps once I find out what's happening.