Officially getting back on the roller coaster . . .

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AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Officially getting back on the roller coaster . . .

Postby AnnClare » Wed May 24, 2017 2:25 pm

My husband & I met with my onc this morning. So glad my hubby was there with me, as my head is really fuzzy from the radiation.
Basically, they're going to send my path reports, etc. to MDAnderson to see if there's anything there that's unique & special. (Will do genomic testing to help determine next course of Tx.) That being said, it kind of sounds like my onc expects that I'll be doing the 'standard' FOLFIRI + Avastin, starting sometime in June. My last radiation Tx will be Monday and he indicated we can use these next few weeks to give my body a chance to recuperate from radiation AND get our ducks in a row as to what is next. I have my port placement surgery scheduled (June 9th), a week & 2 days prior to my 43rd birthday. Happy Birthday to me, right?

I knew that chemo was in my future, and that radiation wasn't the 'last step' in this process, it's just that having it laid out and discussed makes it more real, and daunting. I'm trying to bolster myself, saying, "Hey, you've been through chemo before - this ain't your first rodeo. You can do this." Of course I'm scared - even though it doesn't sound like the side effects are plentiful and/or harsh. It's just the unknown. But then I think, "What choice do I have? I won't quit!" I'm still (relatively) young, in otherwise excellent health, and am still full of piss & vinegar, as I like to say.

But, fuck me - I HATE the idea of chemo (who doesn't, right?) I know cancer, even Stage IV, isn't what it "used" to be. Still, it's daunting. My husband reminds me to take each day as it comes, and not to try to look at the WHOLE mountain at once, but one step at a time. I know once I'm done with radiation, and my head no longer feels like it's hovering over my body, unattached , I'll be more "myself" and I'll be better equipped to get my head in the game. It's just that today, right now, I feel . . . fussy. And a little unhinged. And so very, very tired.

Overall, I'm good. I'm still here. :) I'm not going anywhere - not like this, and not today!!!
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Officially getting back on the roller coaster . . .

Postby JudeD59 » Wed May 24, 2017 5:33 pm

Cheers to piss and vinegar! Even in a post describing how tired you are and how daunting the plan feels, your fighting spirit shines through over and over again. The "unknown" is scary, but it sounds like you have a great team beside you in your husband and doctors. I think your husband's advice to take it one step at a time is good advice. Looking at the big picture, the long-term situation, the whole mountain, is scary for all of us, no matter what stage we're at in this disease. It's too overwhelming and unpredictable.

You're still here and we're still here anytime you need us.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Officially getting back on the roller coaster . . .

Postby MissMolly » Wed May 24, 2017 5:56 pm

Ann:
I am so glad that you have your husband with you, standing squarely by your side. Your husband sounds amazing.

What no one explains or teaches anyone facing a daunting/serious diagnosis is how to manage the many psychological hurdles of an illness that is not soon to go away.

I can honestly say that the process of emotionally adapting and adjusting to loss of health has been far more difficult that I imaged it would be.

My family looks at my outward appearance for signs of whether I am doing "better" or "less well." Little do they understand the difficulties of keeping myself sane and even keeled as my body comes to feel like a stranger to me.

I like your husband' perspective of taking what lies ahead one piece, one segment, at a time. One step. Then another. Your husband has wise counsel. He's a keeper. As are you.

Sending you a flotilla of good luck lady bugs.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Officially getting back on the roller coaster . . .

Postby Soccermom2boys » Wed May 24, 2017 10:54 pm

Hey girl--

Even though I'm not on the roller coaster with you exactly, I'm here at the amusement park waving to you! Heck, I'll spring for a corn dog and a cotton candy when you get off! :lol:

Seriously, I am happy to hear you are moving forward and wrapping up the radiation treatments. When I was first diagnosed and they list all of the treatments and surgery ahead of you, I can clearly remember feeling like I was at the bottom of Mt Everest and there was no end in sight. It's so easy to be overwhelmed when you are back at the beginning and you are human to feel like it is daunting, regardless of the fact you have already done 12 rounds of chemo. I am all for a one day at a time approach, that is something I have absolutely incorporated in to my life since my diagnosis.

Please keep the updates coming, I have you in my thoughts and enjoy when you share your piss and vinegar with us!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

User avatar
MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Officially getting back on the roller coaster . . .

Postby MikeManess » Thu May 25, 2017 12:26 am

You're a few months ahead of me .. I'm coming to the tail end of my mop-up chemo. I've had about 10 rounds of Folfox + Avastin, 11 rounds of Filfiri + Avastin and I totally agree that we all look forward to getting a rest from chemo. I'm hoping for an end the first of July.

Hang in there, AnaClare - counting on you to kick this cancer's a$$!
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again


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