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!!

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...

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

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...

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.

X-ray

Went in today to the clinic for an x-ray and I don't think I like what I saw... After the tech took the x-ray, I asked her if I could go back and take a look and when I did, I saw what looked like a nodule on my right side. I'm no doctor so it could be scar tissue etc... That said, I'm preparing myself for the worst when I go get my PET/CT scan on Monday. I have a follow up consultation with my doctor next Wednesday to discuss the next steps with me. If the scan is clear, I move to stem cell transplant. If there's still disease in me, I'll have to get another round of ICE chemo and it'll delay the stem cell transplant process another month.

Whatever happens, I need to keep my spirits up and let God and the doctors do their thing.

Tomorrow I go to my physical therapist to get training for self lymph massage and how to appyly my bandages for my lymphadema (to reduce the swelling).

On another note, it's been entertaining watching the olympics live at night! Michael Phelps is unbelievable. Heard today that one of the swimmers found out that he had testicular cancer right before he found out that he'd be part of the swim team. He made the decision to go to the olympics then get treated when he gets back. I can completely understand his decision...

Signing out, Chris

Lymphedema!

Forgot to mention my Lymphadema! I had a lymph node biopsy taken from under my right arm when it was thought the my cancer was still around after my first chemo regimen. I actually had three nodes removed. Unfortunately, I developed a condition that mostly affects women who have breast cancer called Lymphodema. My right arm and hand have swollen on average three centimeters larger around than my left arm. If you look at my hand, it looks like someone smashed it with a sledge hammer! The medical reason for this is because I don't have lymph nodes present any longer, there's nothing to filter or redistribute the lymph fluid and it drains down into my arm and hand. I'm going to physical therapy where they'll wrap it to try and reduce the swelling while teaching me how to massage my other lymph nodes so they'll hopefully take over a little for the missing lymph nodes. Unfortunately my doc says this is something that I'll have to deal with for the rest of my life. I can deal with it as long as I can get rid of this cancer for good!

Dad's visit and Stem Cell Collection

Well it's been a while since I wrote... My Dad was in town all of last month and I didn't make any time to update. My Mom and Sister are now in town but figured I needed to make time so I don't get too far behind...

My Dad's visit was good. I really appreciated him coming out as it was the longest time he's spent away from his wife and he had to put his job on hold etc... I had just finished up with my first infusion of ICE when he came so at first I was kinda wiped out. After a couple of days I was feeling better and we managed to get a couple of rounds of golf in (actually three total). We played my local course, West Seattle Muni, then a beauty called Gold Mountain where we took the ferry to Bremerton. The last course was Druids Glen in Kent which I'd like to go back as it was cloudy and on clear days I think most holes would have a great view of Mt. Ranier.

I had my second infusion while he was here and I have to say it went much smoother than the first. No puke sessions thank God! I didn't have any issues with my kidneys as they over hydrated me this time. I even made it through without having to get any blood/platelet transfusions

I had a chance to meet my stem cell transplant team, (the Rose Team. There was a tense moment when they gave me the wrong shot to mobilize for stem cell collection (Apheresis) Neulasta instead of Neupogen. Interesting to know that both of these drugs are derived from Ecoli bacteria I think. Of course I freaked out and thought I wouldn't be able to produce stem cells as Neulasta is unpredictable in raising counts. When your life is on the line, you want everything to be done perfectly and thankfully everything worked out ok. I ended up producing almost 9 million stem cells in 3 days! The whole process was actually pretty boring, just laying in a bed where a machine filtered out my blood the necessary stem cells which will later save my life after they completely wipe out my immune system with high dose chemo. The whole idea around collecting my stem cells is called "rescue" as they do just that. In other words, by collecting my stem cells, it allows the doctors to give me normally fatal amounts of chemo (when I say fatal, I mean enough chemo that your immune system could never recouperate on it's own without getting back your own untreated stem cells). These stem cells are the building blocks of white and red blood cells and once they're given back to me, they go to work dividing and producing these necessary cells needed for my immune system to regenerate.

So, now that that is done (check it off the SCT list) I now wait for my re-staging PET/CT scan to see if the ICE chemo is doing the job putting my cancer into remission. If everything looks ok (meaning no active cancer) I then get ready for my first stem cell transplant. The first one will be a "mild" one relatively speaking compared to the second. I will receive one chemotherapy called Melphalan at a reduced dosage. This dosage still will be enough to wipe out my immune system (thus the need for the transplant) but will allow me to recover resonably quick, say 4-6 weeks. Once I recover from this, I will be ready for the mack daddy transplant or the second one. This will consist of some of the nastiest chemo VP-16 + Cytoxan (hmmm, sounds like toxin, must be nasty) and Etoposide. If that wasn't enough, I then will get nuked with total body irradiation. Once I'm barely alive, they'll then give me back the second half (larger number) of stem cells. Who knows how long it'll take me to recover from this.

All that said, I will try and enjoy these next couple of "normal" weeks with my Mom and Sister. We're gonna make some plans to go somewhere cool like Olympic National Park, Vancouver BC, Ranier, whatever... We already went to the Experience Music Project and Pike Market and had a good time.

I miss my girl Jackie! She's at home in Michigan for 10 days recharging her batteries with her family. I'm really glad she has a chance to do that as these last couple of months have been emotionally trying to say the least.

Well, till my next adventure in modern medicine, I'm signing out.