Stage Four Forever More

December-time for my last appointment with my oncologist before she moved! She relocated to Colorado pretty much after this visit. I went in and did the usual and was about to leave after a nice long hug when I remembered to ask "Did you take a CEA?". I hadn't had a CEA since after my colon resection because this onc (and many others) believe them to give off false results during treatment that  just create undue anxiety and stress. She remarked that she was sure they had taken one and so I was on my way. I was almost out the door when I was called back by the nurse. "We didn't get your CEA! Come on back and we'll do it now."
Next morning, sound asleep, dreaming of how I'll spend my cancer free years, my cell phone rings and my oncologist's name glows on it's screen. I thought maybe I forgot something there or maybe she had a different referral, but no. She said "Your CEA is up. I want to do a CT." I was shocked. I asked 'How up?" and she said "22.4". My CEA was just 2.4 with a 3 cm tumor in my colon. This couldn't be good.
I immediately scheduled a CT which suggested a 3 cm lesion in my liver and then sometime later I had a PET which confirmed it. Christmas came and went and surgery was scheduled for shortly after bringing in the new year.
It was devastating, but there was a glimmer of hope. Many folks had had a single liver met and had passed the magical 5 year mark scot free. And I was lucky that I was able to have surgery in the first place.

The liver resection recovery was very difficult and there are all sorts of memories I could share that took place during my 7 week recovery, but I won't. I found my own new oncologist, scanned and did blood work every three months. We bought an Audi, put in a pool and decided to live every minute to its absolute fullest!  I lived a life of NED for the next 11 months until November rolled around (what is it with these holiday months?) and my CEA started to creep up. First to 5.6, then  December's was 7.8 and finally January's scan and 13.8 CEA confirmed the cancer was back. I knew it was back from the first 5.6 reading. I had pain around my liver and was convinced I had a met there even though the scans kept coming back NED. It turns out we were both wrong, those earlier scans and I, not only did I have 2 new mets in my liver measuring 1.1 and 0.7 cm, but also an increase in size of an iliac chain lymph node last measuring 0.6 cm now measuring 1 cm, some perirectal soft tissue nodules were new or increased in size, representative measuring approximately 1.9 cm and last but not least, nodularity along the dorsal surface of the uterus had progressively increased in size. Sounds deadly doesn't it? I thought so too rereading it on the floor of some hotel lobby that was next to the coffee shop I just ordered from. But over the next few days I started thinking about the lymph node, the soft tissue nodules and the uterine nodularity - and  just wasn't convinced. Nothing seemed very specific on the CT and none of these things had ever been mentioned before. I demanded a PET which confirmed the findings of the CT, but never listed SUV numbers which left me still unconvinced. But the decision was made to start chemo straight away because if indeed those other things were mets, we didn't want to wait to recover from surgery and give them the chance to grow.My new onc says I have what they call "a low tumor burden". This is good news and means I might get a few years out of this mess. My new nurse practitioner envisions me on a maintenance regimen for years demanding breaks here and there so that I can feel good when I travel. I hope they're right.
I had to have  a new port put in because mine was removed during my double mastectomy, but demanded they knock me out this time. And they did. I demand a lot these days. You have to.

So this brings us up to date. I'm currently working off my third treatment of FOLFIRI (aka FOLFURY by those in the know) and my second with Avastin. I am hoping beyond hope that this will shrink something and other options will come along. It is rough going and when I'm in the middle of it I wonder if its worth it. I got a second opinion from an aggressive surgeon at UCSD who agrees with the plan for now-get 4 treatments in, scan and see where we are. As far as this blog goes-from here on out we should be talking in real time. I'm losing hair again , but that's ok. I'm alive and feel well most of the month. My middle child has been accepted to college and my youngest is driving. Life is good. And I'll rise up.