Feeling good. So why am I worried?

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Cmac1275
Posts: 36
Joined: Mon Aug 06, 2018 4:21 pm

Feeling good. So why am I worried?

Postby Cmac1275 » Thu Nov 01, 2018 9:47 am

I feel odd posting this. I’m hoping folks with similar experience can shed light.

When I was diagnosed in January, I spent very little time lamenting the situation. Figured it was better to put the gloves on and fight right away. Colon resection was successful. My first six rounds of chemo produced great results and never really knocked me down physically. Maybe some nausea or appetite loss here and there. But fatigue was very manageable and neuropathy from FOLFOX was never terrible. Liver resection went well in July. I was back home in 5 days and feeling great.

Then, the August scans dashed my hopes. I thought for sure, with everything going so well, I was on my way to NED after successful liver resection. But those darned spots showed up on the MRI and PET scan. Scary stuff considering I’d just had 70% of my liver removed 1.5 months earlier. Like, really? Spots so soon again?

That finally turned my world upside down for about 2 months. Then I snapped out of it. And here’s the crazy part. I realized one day a few weeks ago....I feel great. Physically, I’m feel as good if not better than I did before my initial symptoms showed up last year. Sure, on chemo week I slow down a bit. But I’m still fully functional and strong for the most part.

And yet I can’t shake this dark cloud. Knowing that I have this stuff in my liver. Not knowing if it’s spread since my last scan. Wondering when my current chemo cocktail will stop working. I finally had a reaction to Oxiliplatin this past Monday. Felt flushed, stuffy and itchy. I’ve never suffered from allergies, but here we go.

This, more than anything else, sucks the most. I should be focusing on the fact that I’m here and feeling good. Instead, it’s hard not to wonder if anytime your body feels odd, it’s cancer related or not. It’s almost like you’re just waiting for the next shoe to drop.

I suppose I still have to learn how to accept and be grateful for prosperity. Not proving to be the easiest thing when you feel like you’re on borrowed time.

What’s helped you?
42 yr, male, husband and father of 3
01/24/2018 — Dx with Stage IV Colon Cancer and liver mets
01/26/2018 — Partial colectomy. Two thirds colon removed
02/21/2018 — CEA @ 60
03/21/2018 — Began 6 rounds of FOLFOX / Avastin
06/21/2018 — CEA @ 4.7
07/02/2018 — Right hepatic lobectomy
08/28/2018 — MRI shows new spots on remaining ("old") liver)
09/04/2018 — PET scan shows new spots on both lobes
09/05/2018 — CEA @ 2.7

NHMike
Posts: 1792
Joined: Fri Jul 21, 2017 3:43 am

Re: Feeling good. So why am I worried?

Postby NHMike » Thu Nov 01, 2018 10:00 am

Staying busy helps me not to worry. It's hard not to worry of course and sometimes coming here and reading the posts gets me worried which is why I take breaks from the board from time to time.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

hiker
Posts: 74
Joined: Thu Aug 09, 2018 10:15 am

Re: Feeling good. So why am I worried?

Postby hiker » Thu Nov 01, 2018 10:01 am

Three things have gotten me through the past year and a half:

-Faith
-Family (including an incredible church family that has rallied around us)
-Stubbornness

If not for each one of the above, I would have given up long ago.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

zephyr
Posts: 136
Joined: Thu Aug 18, 2016 7:31 am

Re: Feeling good. So why am I worried?

Postby zephyr » Thu Nov 01, 2018 11:31 am

Oh boy, have I been there. That’s a hard one to shake, at least it was for me. Control ended up getting me through it.

The first time it happened, I think I just wore myself out with cleaning closets and other projects that I felt would make it easier on my family when I was gone. I know that sounds really morbid, and I guess it is, but my thought was: I’m feeling good now, so I might as well tackle this chore while I can. It’s not an approach I would recommend but it did make me feel I had some control when everything else was beyond my control. As I said, I think I just wore myself out.

The second time it happened, I focused on the health points I could control: diet, exercise, mental focus. Before I was diagnosed, it was easy to eat a healthy diet, exercise regularly, and do some form of meditation more often than not. After I started chemo, my good habits suffered, either because I didn’t feel well or, at times, because I was feeling sorry for myself. So when the feeling of dread hit, even after I started feeling well, I focused on giving my body complete support. If I wasn’t able to go outside to ride a bike, swim, or walk, I did a minimum of 30 minutes of walking inside the house with the music turned up, singing my heart out (Fight Song became a favorite). I planned, shopped, and prepped meals a week ahead, with alternates I knew I could tolerate if I started feeling nauseous. I started doing Yoga Nidra healing meditations when my mind was too distracted for regular meditation (I highly recommend Kamini Desai’s Yoga Nidra app - 36 minute healing shift session, very rejuvenating and empowering). That just snapped me out of it. It wasn’t so much that I didn’t still wonder when the next shoe would drop but I was somehow at peace with it all.

I carried that “peace” into the third time it happened. Somehow it gave me the determination, or maybe it was stubbornness, to search out and find the next step. It was about control again: when this happens, I will do that. When the worst case happened, I had a plan. And so when I ran out of chemo options and was put in the wait-and-watch waiting room, I already had the next treatment planned out. And that’s where I am today. I’ve made it successfully (fingers crossed) through my treatment plan, I’m feeling really good and hopeful, but I’m also mapping out the next step when that next shoe drops. But here’s the thing: it’s not depressing, it’s really OK.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed

Cmac1275
Posts: 36
Joined: Mon Aug 06, 2018 4:21 pm

Re: Feeling good. So why am I worried?

Postby Cmac1275 » Mon Nov 05, 2018 9:16 pm

Thank you all for your feedback. It’s an odd thing to feel good and yet be worried like this. I should be focusing on the good and going with it.
42 yr, male, husband and father of 3
01/24/2018 — Dx with Stage IV Colon Cancer and liver mets
01/26/2018 — Partial colectomy. Two thirds colon removed
02/21/2018 — CEA @ 60
03/21/2018 — Began 6 rounds of FOLFOX / Avastin
06/21/2018 — CEA @ 4.7
07/02/2018 — Right hepatic lobectomy
08/28/2018 — MRI shows new spots on remaining ("old") liver)
09/04/2018 — PET scan shows new spots on both lobes
09/05/2018 — CEA @ 2.7

AppleTree
Posts: 244
Joined: Fri Mar 18, 2016 8:16 am

Re: Feeling good. So why am I worried?

Postby AppleTree » Tue Nov 06, 2018 12:26 am

I have had alot of ups and downs. Cancer has been cruel to me financially as well as physically. But I keep chugging along...like the little engine that could. My son is now 15 years old and he is my #1 reason to keep standing. One thing I did that really helped...I bought a journal with a page for every day. At first I had a really hard time writing in it so I would just start with the weather. My last sentence for each day is something that I am thankful for.

You are not alone in this feeling. I finished chemo the end of April and my oncologist told me she would like me to keep my port for at least 18 months. That does make a person worry! And my scans have been every 3 months. I just had one in Oct and the next is Jan. That makes me worry...like my oncologist is waiting for the other shoe to drop. But then I think best to get the scans than not to. I do not know. I think no matter what we all do eorry, it is just a matter of accepting it and being thankful that we are still here.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Feeling good. So why am I worried?

Postby teacher2017 » Thu Nov 08, 2018 5:58 am

What gets me through is that I remind myself that I don’t have to go to these appts. I can choose to not go. I go to save my life - to extend it. But I still have a choice. I choose to walk in to get a scan. That I have control over. Hang in there.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18


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