After vowing that I would do better keeping this place updated (and answering some emails that reminded me of same promise) all hell sort of broke loose. There's been a lot going on but not much to actually tell, as we were in the Hurry Up and Wait portion of my treatment.
Back in June, Dr. Big Dog noticed a new pelvic tumor. He watched it for a cycle and it grew by a centimeter (apparently that's too much) and it did so over 6-8 weeks. So he sent the orignial tumor off for testing, to see if it was a wild tumor or if the tumor had mutated. In this case, WILD is better than MUTATION, a fact which I point out often.
After a seemingly endlss period of time, my test results for this KRAS tumor came back negative for mutation. WHICH IS REALLY GOOD. What that means now is that we have another set of tricks to try to get rid of this shit and push me over into some sort of remission (not likely) or long-term chronic illness situation. Had the KRAS shown a mutation, my options would pretty much be limited to what we've been doing, with a few tweaks here and there. And since "what we've been doing" got me not one but TWO new tumors (more on that downstream), I'm thinking that ain't working out too swell.
So I start my new chemo regimen next week with the dreaded irinotecan, combined with a new-to-me drug called panitumumab which is showing great promise in this kind of treatment. Irinotecan, as you might remember, is the drug that caused me horrid diarrhea and also made me lose quite a bit of my hair. So I guess I'll start over in that regard, and if that's the worst that can happen, I'm in good shape.
Dr. Big Dog seems to think that without the Flouracil/Leucovorin/Avastin that I've been taking all along that I will have an easier time with side effects, and I hope he's right. But I do realize how lucky I've been in that regard so far.
Meanwhile, on a nice chemo break and waiting for test results I started having godawful pain in my lower back, which moved down one leg. About a week into the pain thing, I became incontinent. That was fun.
It wasn't just an infection, so after a week of Cipro, off I went 2.5 weeks ago to the ER here in town so that I could be admitted for pain management and to see if we could find out what was going on with my back. My first MRI ever showed that those machines are louder than a room full of nine year olds. They also showed a tumor at L3, which is the 3rd vertebrae up from the bottom of your lumbar (lower) spine. The metastis may or may not have anything to do with the incontinence and it's still too soon to tell but Magic 8 Ball says that signs are pointing that way. So I was admitted, we tweaked drugs, I had an x-ray to make sure my leg wasn't broken or anything stupid like that, and I underwent two radiation treatments.
Over the course of the last two weeks I had 10 more for a total of 12. Everyone was great and I met a mama from Liam's school whose son is also a 4th grader (she's the woman who gave me my radiation). I will go back after this week to follow up, but there's no doubt that it worked at least in part, since I'm having no compression pain. The incontinence is still there but Dr. P (darling, tall, dark, Greek, YOUNG and married damn it) seems to think another week or so and that will be gone.
So I'm back in a new version of the old routine. I will go Friday to Zimmer Cancer here so that I can have a pelvic CT, then next Thursday see Dr. Papagikos for my radiation follow-up. Then Thursday 8/21 I start back on chemo, every two weeks for the foreseeable future.
This week is being spent trying to clear the cobwebs and find the pieces of my mind that I have been dropping like breadcrumbs. I am still very much under the influence, way too much to drive. Thankfully my brother is here and he is willing to chauffeur me around my pitiful little errands. And even if I can drive, I am so exhausted that I'm a menace often and unnoticed by myself!
So that's the short of it. When my head clears more I can talk about what a roller coaster this has felt like and ask for your collective widsom in navgating the shores.
Thanks for all your prayers and thoughts and emails; they mean the world to me.