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Tuesday, August 4, 2015

Three Beautiful Words...

No Evidence of Disease (ok, actually 4 words, but NED is the acronym so "of" doesn't really count).

I am still in disbelief that I am using those words in reference to myself. Yes folks, that amazing day is finally here...August 4, 2015 is the day I found out that after 6 years of cancer, I. AM. IN. COMPLETE. REMISSION. I mean....it's unbelievable! I hoped and prayed this day would come, but it almost didn't seem like a possibility. I felt like something was wrong with me, even out of the cancer patients I know, I was one of the only ones who was never able to attain remission. The closest I've gotten is partial remission, so to hear I have a "CR", well, I'm speechless.
Current Mood: Ecstatic

Ok, let me back up. After my depressing April post, I started the ACY regimen, which had the distinction of being the only drug I NEVER responded to in my 6-year cancer career! The cancer actually grew on that drug. I wasn't really surprised, as my "B" symptoms of itching and night sweats never really went away, but it was still heartbreaking to rack up another failed drug within my portfolio of chemos. However, in May I started Keytruda aka Pembrolizumab. It's been FDA approved for various cancers and has shown to work wonders in lymphoma. A few other patients at my doctor's office started it before me and almost everyone was showing massive improvements--without huge toxicity. So I was cautiously optimistic...especially after my bloodwork was normal after just 1 infusion! The "B" symptoms stopped and I didn't have any other side effects. Plus, the infusion was pretty manageable, just a 30 minute treatment once every 3 weeks.

But when the word "scan" started coming up, I started getting the shakes. I tried to tell my doctor there was no need to scan, I felt good, I was gaining weight back (a little too much for my liking but still a good sign), and had no symptoms. Let's just call it a day, right? But no, unfortunately that's not how it works and my medical team needed a scan to see how I was doing. So for the 100th time (I've never actually counted how many scans I've gotten since 2009, but I figure the number is up there), I drank a chalky substance, laid down on a PET scan machine and prayed for the best. I was planning on going back to my doctor's office tomorrow afternoon to get the results, already dreading the scanexity that would come from waiting in an exam room, when I ran into my doctor as I was leaving. He said he could look at my scans right then! My emotions were all over the place as I waited for him to review the images, hoping I would only have to wait a few minutes.

Unfortunately the time started to click by, 10 minutes became 20, then 30 and 40. As it got later and later, I managed to work myself into a panic attack because I was convinced that the scan was bad, like really bad. But before I could jump out the window to avoid hearing the results, my favorite nurse came over to me and said she wanted to tell me the good news...it was all gone. I immediately started crying. I felt like it wasn't real, couldn't be real. I was actually in remission! I called my parents and Ross and cried each time I said the words. The three beautiful words we've all been waiting so long to hear. I'm so thankful, so grateful to be here in this moment, to have made it through to the other end.

Now because this drug is so new and my health history is so complicated, I'm not out of the woods yet. The plan is to continue taking Keytruda once a month indefinitely and continue to scan. Of course I'm nervous that this remission won't "stick" but I'm gong to try and be as positive as possible that THIS wonder drug will be my silver bullet and one day I won't need treatment at all. If it sticks, we're no longer talking about allos, we're no longer talking about invasive treatments and long hospital stays. We're talking about having my life back. Just the very thought puts a smile on my face. The hope is that this is the new future for cancer patients--less toxic treatments that are targeted and innovative--and for better or worse, I've been a part of that journey.

I think it's time to open that bottle of champagne :)