Hello everyone,
It's my last day in Seattle and I've been having a blast! Had a chance to catch up with all my friends out here and again see Seattle from a different perspective, a healthy perspective which has been awesome. Had a chance to go to a couple of great concerts at venues I've never been like the Paramount (Bon Iver) and Showbox (Gomez). Spent some time at my favorite park, Lincoln Park and the Olympic mountains were mostly out and the water was shimmering beautifully as the sun poked through the clouds. It really is beautiful here but know for sure now that I could never live here full time again... It's just too far from everything not to mention the cool drizzly weather isn't conducive for my love of the sun and it's healing properties not to mention the vitamin D!!
I wanted to share some decent news I received from Dr. Ram a couple of days ago, sorry took me so long to post it. He mentioned that from the scans that things are looking pretty decent. The CT scan didn't show any changes which I guess unto itself, isn't so bad. However, the PET scan showed dramatic improvement in my uptake levels in my "hot spots" leading Dr. Ram to believe that the reason the images on the CT aren't smaller is because once Hodgkins cells die, they leave behind a lot of inflammation/scar tissue. There were some lesions that previously showed 11-12 SUV levels and those same nodes are showing 1.8 or 1.9 now! We never use the word remission but I bet this is the closest I've been in a long time :D
So, with this news, I plan to ride this wave as long as it'll take me! I'm feeling stronger all the time and only occasionally have to take extra pain meds for my back (don't think the herniated discs and osseous erosion is going to get better anytime soon). That said, if it's only that and my occasional days where I'm majorly fatigued I will surely take it! I feel so blessed to be able to live a relatively normal life. I'm ready to start setting some goals I think and will be sorting through them in the next few weeks... That's about all I can say on that for now.
Thanks again for all of your support and prayers, they're working!
Hope everyone has an awesome day and look forward to the next update.
Cheers!
Chris
8 comments:
That is great news Chris :) Enjoy!!!!!! Loraine
Horray! Love your great news, Chris! Still really enjoy your taste in music too. Hope your back stops being a pain soon! Enjoy your...I'll say it...remission!
Chris,
I'm so happy to hear your latest news. I am in such awe of you and your battle and attitude. i'm sure you hear that all the time. But, knowing you and living through you at times, i just wanted to say how proud I am for you. Enjoy every moment.
love you 'cuz,
ken
Happy to hear things are going well!! Glad your scans are looking decent. Keep enjoying life and stay strong!!
Donna
GREAT news!! As I think I mentioned before, I follow your blog, and I was getting worried that you had not yet updated the results from your recent scans. I am so happy to hear that things are looking so good! You remain in my prayers!
Hugs,
Jen Rebresh
So happy to hear that!!!! I hope everything else is going great for you!!
Great news. I just stumbled upon your blog looking for research on failed auto, failed sgn. Wondering if you ever did an allo and if not, why not? My husband was up for one, but latest PET showed mild activity, so the process has come to a halt.
Hello Jen,
Thanks for the comments. I chose not to pursue an allo because of the risk to reward ratio isn't so good. Can't remember exactly but they were giving me a 10% chance at a cure with a 40% mortality rate or something like that. I've heard GVHD is horrible and an even worse way to die than HL.
Don't mean to scare you, just being honest. I think you guys should look at possibly traveling to new york to see Dr. O'connor or down to Houston MD Anderson to see Dr. Younes, both experts in refractory HL. Good luck, chris
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