What does the word remission mean to you? I'll tell you what it means to me: jackshit. Remission is a fucking lie. Nothing but a big fat lie. LIE LIE LIE LIE BIG FUCKING LIE. Sorry, I've made it point not to curse on this blog because I know family members and such read it, but at times it is appropriate and now is absolutely one of those times.
Remission is just a word the medical community uses when they can no longer see the cancer in the PET scan images. The problem with that is the fact that there is LOT those scans cannot detect. 1 billion cells (1,000,000,000) is the smallest tumor that is detectable by feel. 100 million cells (100,000,000) is the smallest tumor that is detectable in the PET scans. Below that number, they have no freaking clue what goes on, totally blind. You could have 99 million cancer cells and it wouldn't show in the scan and they'd call that complete remission, treatment stopped. Remission is a lie.
By now, I'm sure you can tell where this is going. Transplant didn't work, some cancer lived through it, I have another sizable tumor in my chest...yadda yadda yadda. We were so close to going back to Alaska. One last scan and then we're outta....whoops. Slow down their cowboy, you're not going anywhere. Not unless you want to take your little friend(s) there with you. Still Hodgkins, still Stage I or II (of 4) so I'm not in imminent danger of dying (yay) but it does not want to be killed and it does come back FAST. Not a great combo.
What comes next: We don't know yet. We're still trying to get back to Alaska but the treatment we select will drive that. Lots of choices, pretty much none of them guaranteed to cure it. Looks like I'll be "managing" this for some time until they do come up with something. The main thing is I'm trying to avoid another transplant, this time with a donor. That's the only full cure available but I think the success rate is too low to justify the risks/awesome side effects at this point. Plus the first one worked so well!!!
So that's my story, have a great weekend! Clinical trials, here we come!
...and please, easy with the questions. Like I said, at this point we don't have the answer and every doctor we talk to has a different answer.