Still here, still kicking!

So that period being a hot mess? Turns out that was mets to the cervix. Biopsied a new "crust" and those stubborn little shitty cells are indeed colon cancer mets to my cervix.

I started FOLFIRI +Avastin. It is kicking my ass. Irinotecan is no joke. I don't talk to my family much about the side effects when I'm in the chair, but they're all familiar with the side effects once home. Irinotecan is nicknamed "I Run To The Can" and it is NOT wrong.

I'm hoping to finish up this set of chemo by the end of September and be released onto chemo maintenance. My old oncologist gave me full on chemo holidays, but this oncologist prefers I stay on a form of chemo to keep the nasties at bay. I'm in full agreement. So I'm hoping to move to Xeloda +Avastin, the Avastin being every three weeks or so at DFCI. (Dana Farber Cancer Institute). Xeloda will be pills twice a day for 14 days straight and then one week off.

Life goes on.

I'm not letting cancer keep me from anything as long as I can help it. And in fact, it is going to be a whirlwind fall for me. My boyfriend just visited me for the wknd (we're long distance; he lives in Quebec and I live in Massachusetts). This week is chemo, next week a friend is visiting, then chemo week, then I go up to Quebec, then chemo week, then to Maine with a friend, then chemo week, then back up to Maine with my boyfriend, then hopefully NOT chemo week (as in no more FOLFIRI), then back up to Quebec and Montreal to meet his family. And then it'll be Thanksgiving time! Geesh!

I joined this online forum known as Colontown (it is transitioning to a new name of Paltown, I believe). It is a tight, wonderful community that is a wealth of information. None of which currently applies to me, but it's good to have such information at my fingertips, even if sometimes I cannot make heads or tails of it.

The clinical trials listed do not apply to my tumor type, etc., but one day they will. And for now, I can read and learn about them and argue and self-advocate. It's truly the best possible thing I have discovered in social media regarding my cancer.

As the founder would say, TO LIFE!

Update - March 2017

I don't type here nearly enough. I meant to chronicle the whole thing, but then thought...why? Who reads this shit other than me? And why would I want people to read it? I'm living it. I don't need to chronicle the every day. And believe me there is a lot that happens, even during chemo holiday that I could be chronicling.  lol And yet here I am, writing an entry.

So at the end of my last round of chemo in October, they did a MRI and found a "mass the size of a golfball on your liver." I was a little upset to say the least at this is at the END of  chemo. I requested a second opinion and am going to Dana Farber Cancer Institute in Boston, MA now.

That mass is non-cancerous, mild fatty liver deposit. So yay! I just had another CT and that was fine, chest through pelvis. I do have 2 metastases on my liver, but they are unchanged from January of last year and not showing up on the CT anyway. They only showed up on the MRI.

My period is a hot mess. Every two weeks with spotting inbetween. This is cause for concern has I have a family history of uterine cancer, endometriosis, etc. I went into my appointment asking for a full scale hysterectomy. Take it all, I said, uterus, tubes, ovaries, cervix. ALL OF IT.

First things first - genetics, gynecology, another intravaginal ultrasound, etc. So I have a lot of testing and appointments over the next couple of weeks to see what is going on. My oncologist proposed that since my liver metastases was to the outside of my liver (perio something latin), it's possible that I had more deposit in my fallopian tubes where they're happily thriving in a rich blood environment and this could be my problem with my rising CEA (oh yeah, that went up again. It's going up in little bits consistently...I'm now over a 5.0 /sigh).

Again, I say, take it all.

1. Family history 
2. I don't want children anyway 
3. If I were to be pregnant, it'd be considered geriatric pregnancy considering my age 
4. Prevent more cancers. 

And so now we wait. For more testing and diagnostics and to see what is what.  

#stageIVschmageIV #Iwillwin #fuckcancer

Chemo Holiday again!

Finished up chemo on September 20. My CEA went up a little but I also have a finger infection. My diabetes is completely uncontrolled so I must do better in what I eat, etc. Not easy to do, but for my health's sake, I have to make the effort.

Some menopausal side effects. Chemo CAN throw you into early menopause. We'll see if it keeps up or if my period comes back normal.

Feeling pretty good. I took a medical leave of absence from work for the month of September to finish out chemo. I didn't realize how fatigued I was or how much I needed the rest. I go back to work in 8 days and can't wait. Seriously, I'm enjoying my sleep but I could use some more social interaction.

I'm closing my book blog. Will keep the others open as I am product testing and want to get back to knitting. So far, those reviews for products are on amazon only. I guess I should publish them to my blog. lol Well, maybe I'll close that one, too. Knitting and the occasional cancer crap.

I met a woman on Facebook through a colon cancer site. She was sweet and cheery and friendly as hell. She lost her fight yesterday and is now among the stars. I didn't know her well, but man that hit me hard. I was sobbing looking at her pictures and the posts from her loved ones. I think because I have the same disease and one day that could/will be me. RIP Katt Hawkins. You fought long and hard and definitely left an imprint on many people's lives. <3

Delays Delays Delays

So the port is being a fussy little shit. It's not giving a return. At first, I was quite annoyed and decided if a dye study shows it's taking the drugs, then let's just move ahead.

Then I did some more reading online and talked to my nurse friends.

Yeah, let's not do that. Hospital was to call me Thursday or Friday for a dye study. They didn't. Chemo to start Tuesday. I'm cancelling it.

I want my port to work as intended. It should take AND give. The last thing I want is some microscopic unseen hole in the cath and chemo leaking all over the place inside. That sounds horrid.

/sigh.

So I'll call my oncologist tomorrow and let them know that 1)hospital hasn't called and 2) while I do NOT want surgery again, I'd rather choose that option.

Nothing is EVER simple. But hey, that's okay. A few more weeks of swimming in cold water, drinking the icy drinks, and then can proceed to kicking cancer's ass!

Back on the Chemo Wagon starting June 7th

MRIs both  came back totally clear. No evidence of disease. WHEEE!
Blood work? Not so much.

Nipping this shit in the bud. Going back on FOLFOX with Vectibix, starting June 7th. Oncologist says we'll do a shorter spell, maybe 4-4.5 months provided that my CEA goes down consistently and stays down. While spikes are normal, the steady increase and then large spike indicates my metastatic cancer cells and are having a party and looking for somewhere to land. I DON'T THINK SO, YOU LITTLE FUCKERS.

Have you ever competed in martial arts or boxing or something like that? That's how I feel right now. On deck. Bouncing on my toes, taking a few practice swings and kicks, dodging, blocking, getting all amped up. It's time to fight harder and kick cancer in the balls!

My port is a little bastard. It worked fine from last July through February, but started acting up again and not flowing without a little cathflow in March, April, and again this month. So we just scheduled a cathflow appointment for some bloodwork and get it ready to WORK next week. Don't fuck with me, port. I'll have your ass removed and another one popped in. Psht. Behave.

Stage IV Schmage IV. I just spent the last two weeks slurping icy cold drinks, eating ice cream, and spending time with my niecelette, brother, and sister in law. Staying up late, and doing everything chemo prevents me from doing as long and as well as I like. My AC is cranked down, I got a Ninja Nutri Pro and am ready to drink my veggies and fruits, my arms are up, my body is in a fighting stance, I'm ready!

Chemo Holiday continues so far!

I've been on Chemo Holiday since right before Thanksgiving (November 17, 2015). My numbers have fluctuated a bit, but the CEA is climbing. /sigh.

Since I haven't had an MRI since January or so, it was time to schedule another. I'm also having female issues. Since uterine cancer runs in my family (maternal grandmother) and my mom has a history of endometriosis and fibroids and her sister also had to have an ablation, I called up my PCP. Female ultrasound both inside and out; results were "high normal." Let me roll my eyes a minute for the very general, lack of information.

Told my oncologist who has access to all of my records anyway since I go to a medical group for all my doctors. He scheduled both my normal abdominal MRI and a pelvic MRI.

They don't do them on the same day at the same time. >.> So I had to go on back to back weeks. Still no results as of yet (abdomen / liver was done on Wednesday the 27th; pelvic last week Thursday). I'm not going to worry about it. I'm just gonna live.

If it's time to go back on chemo, it's time to go back on chemo and I'll deal with it. In the meantime, I'm gonna live my life and plan shit out to go do. I'm ready for this summer! I have two weekends in May where I'll be going up to the lovely Bristol, ME home of a dear friend. She takes me to antique shops, and the lighthouse up at Pemaquid Point, and it's just relaxing and amazing to breathe in that sweet grass, pine scented air and hunt for goodies at antique stores and handmade goodies!

Then in June, I'll be heading to NYC to visit two dear friends and attend a concert. I'm normally not a concert person: they are too loud and nauseate me, but hello...it's THE CURE. I'm going! Tickets for the show are purchased, I just have to arrange to get to the city. :) Get to chill with my bestie for a weekend and my other dear friend from high school.

Hey cancer...FUCK YOU. I plan on being around for a while and living my life! All I have to do is kick your ass until there's a cure and then they  can remove this "incurable but treatable" label and send me on the immunotherapy journey that just eliminates you from my body entirely.

Suck it!

So I'm not dead...

I just didn't really feel like blogging the journey. I mean...I have to live with this shit. I have to repeatedly explain to (hopeful) family members that no, I really am incurable.

So July's CEA number was excellent. And then we continued chemo because that is what you do: you do a set amount of chemo. I made the dumb decision to try green stuff to help with the nausea as it got worse and worse in late September or so.

Guess what that did to my CEA number? Hi JUMP! So I was stuck on chemo for another 6-8 weeks to see if it would go down.

It did.

November 17, 2015 I was officially on chemo holiday. We roll with it til something pops. December's visit was good, CEA still under the marker and bloodwork looked okay.

Today, I go in for an MRI and lab works. I meet with oncologist on Thursday. So we'll see how it goes. I'm enjoying my chemo holiday and hope it continues for thirty years!

Post-chemo/chemo holiday info: Constipation is still an issue. Lovebug Probiotics Yeast is a Beast is incredibly helpful and also helps with feminine itchies, which I'm prone to being a diabetic and having high sugars. When I eat right, sugars aren't a problem. But I haven't eaten right at all. I'm indulging in good tasting foods which happen to be very bad for me. Oops!

I'm not a paid spokesperson for Lovebug Probiotics, but I really should be. LOL I tell everyone how helpful it is for me and the difference it makes. The Cold Sucks one is keeping my dad from getting ill as colds are running rampant throughout his office. My mom likes Here's the Skinny.

Ok, back to cancer crap: I have neuropathy in my fingertips. Apparently this is irreversible. Annoying. I drop things a lot and have difficulty with fine dexterity things like small buttons, etc. But I'll take it! Better than dying!

Constipation, neuropathy, my hair fell out in chunks but didn't leave me  completely bald, it's now growing back a bit, but is ultra fine like baby hair.

Other than that, things are good. Slowly getting energy back, pushing myself a little too hard, but damn I'm enjoying the chemo holiday while it lasts!