If you can't walk the walk....

I've been on maintenance chemo now for 3 months. My last scan made it look like I may have new lung developments, but my oncologist is not convinced. My pelvic issues have remained stable from their initial decrease from the FOLFIRI. It was that decrease that had me ask to go on maintenance. I do not want to use up all my chemo options just yet. I was hoping the break from Irinotican would make it so that I could use it again if need be. I won't know more until my next scan in December. In the meantime I'm in the process of getting a second opinion from Cleveland Clinic. Although I trust my team implicitly, I just need peace of mind that other specialists would agree we're on the right track.

My summer started out with a bang with a birthday party thrown for me complete with dancing, drinking and drag queens. We spent a weekend in my happy place. We saw concerts and art show openings. We did a river cruise and ate brunch on the top of the Hancock. We went to Georgia to watch our youngest compete in a national barrel racing championship. We went to hot dog festivals and market days. We went to the theater and had pool parties.
And finally I went to Italy.
For 2 1/2 weeks I roamed the streets of Rome, Florence, Lucca, Tuscany, Sorrento and Venice. It was a dream vacation and a another bucket list item checked.  While in Italy 3 members of my CRC support group passed. And once I returned home it became clear several others were nearing their time. This is one of the heartaches you experience being a member of a group like this, but I need this group and so I deal.

I returned home from Italy depressed. I don't know if checking items off my list makes me feel closer to death or just hearing about others passing is what brings it so close to home. I'm sure it's a combination of the two, but it's almost mid-October and I'm only now hoping that I'm seeing a bit of light from the dark, dark tunnel I've been in.

A couple weekends ago we did a colon cancer benefit walk. Last year, a couple months after my liver resection we did the same, but these 2 events were completely different on a personal note. That first event brought about tons of family and friends, this one not so much. I couldn't help but think perhaps I've overstayed my welcome, perhaps my disease has become boring. Was I not expected to make another year? Are folks wondering "Oh geez, how many more of these will we have to do?!'.

I don't think I've touched on here about my BFF that disappeared. I knew this woman for well over 20 years. She was at the births of 2 of my 3 children and as soon as I got diagnosed, she became less and less a part of my life. I eventually gave her the chance to turn things around. Cancer is scary, I get it. I'll help her through my diagnosis I thought, I'll help her be a better friend. She did not take me up on that offer and for months I cringed as I saw all her happy-go-lucky Facebook and Instagram posts. I wanted to delete her from life entirely as time wore on, but didn't have the courage. It's strange, I'm assuming she didn't remove me from her social media, because who could do that? But I also strongly believe there is a curiosity to peoples' illnesses. Like that car wreck you just can't help but look at. I have  acquaintances from my past try to friend me on social media just because they found out I was ill. I've had old friends of friends try to friend them so they could glean information about my illness. Is it a feeling of keeping it near will keep you safe? Like there's my 1 in 20, now I won't get cancer! I'm not entirely sure, but I don't like it.

(So this next bit may come across a little crazy, or too worked up. I promise you I am neither of the two. I request that you read it with humor in your heart because it is funny. Know that I am fine and not angry. And remember, it's funny because it's true.)

After this last walk, when I realized many of my family and friends could not be bothered with joining us for, or even at the very least donating a little something to, this cause, I quit. I quit caring that, from this specific group of people, I never got a call, a card, or even a mother fucking Facebook message or phone text.

I lost a dear friend from cancer. Although I'm 100% sure I did not do all I could have for her, I am also 100% sure I tried. When I have people I've never even met in person paying more attention than people I've known for at least half my life, well, that's a real eye opener.

The walk was the last straw. I've had this disease since 2015, if you haven't stepped up yet, you're probably not going to. Or if you're just waiting for the shit to hit the fan, then fuck you. You suck. I finally decided I could cut them free and I would be so less annoyed and so less hurt. So I did.

I deleted them. No wait, actually I BLOCKED them because damn if I'm going to let them "share" in my experience. Damn if I'm going to let them think this thing is transferable. Damn if I'm going to let them think they are a part of this. And there's absolutely no fucking way am I going to satisfy their curiosity.

And since that day I've been feeling better. Less depressed. And let me tell you, the actual act of BLOCKING was more than cathartic, it was empowering. I went through my friends lists several times to make sure I got rid of all of them. And the more times I went through, the more people I found to block.
Hey lady from the horse barn, how come whenever you ask anyone a question you appear as if you don't really have the time to listen to the answer? And why on earth would you wish someone (not even me) a happy birthday on Facebook without any capital letters or punctuation marks?! Are you seriously just saying "happy birthday"? What is that?! BLOCK.
And hey, ex-neighbor, the one I gave all my kids' mini-boden clothes to when they outgrew them, the one I got a job for, who did nothing ever that I can remember that wasn't mostly shitty to me and mine, I'm sick of you. Plain and simple. You bore me and I don't want to look at your face anymore. BLOCK.
Hey wife of that super nice guy that's in my friend's husband's band. Shut up. Just please shut up. You say stupid shit and make people uncomfortable. BLOCK (but not your husband).

I'll bet I sound like a petty bitch right now, but boy-oh-boy, do I sound like I care? I didn't think so.

And hey, all you BLOCKED people, this is not just a social media block. You are banned. You are done. You are outta here! I will be planning my Celebration  of Life party (and I plan a real good party, by the way) and my dear, sweet and obliging husband has been specifically instructed to kick your asses to the curb if you even think about coming  and to happily say with a smile, while kicking your asses, "I'm really, really sorry. Lari's making me do this."

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.