Cancerversary

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crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Cancerversary

Postby crikklekay » Thu Dec 13, 2018 4:25 pm

My husband's diagnosis anniversary is coming up and the roller coaster of emotions is unreal. On the one hand, I'm flinging so much of my energy into Christmas in an effort for this Christmas to be so wonderful it blots out last Christmas that it can't be totally healthy (it certainly hasn't been healthy for our budget). On the other, I have these odd sudden memory flashes of spending our Christmas full of creeping worry and New Years absolutely distraught in the hospital that it brings tears to my eyes out of nowhere. It's so weird because I feel like I don't remember a good portion of this year. It has been the longest year of my life and I can't recall hardly anything about it; I don't even remember how I spent my birthday other than being worried about his chest CT scan. But my brain manages to preserve these horrible nuggets of being in the hospital which are the worst moments of my life. It's like, please shut up brain!

I know I can't be alone in this, so I was wondering how other people deal? I'm just trying to keep busy and focus on how this Christmas/New Year is going to be different and next year is going to be so much better than 2018. Also, is it weird that I seem to be more affected by all this as a caregiver but my husband isn't bothered in the slightest?
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Cancerversary

Postby Punky44 » Thu Dec 13, 2018 6:34 pm

I’m living the crappy year right now and hope and pray I can be in your shoes next year with my mom. I know this will always leave a lasting scar because the holidays have just been and continue to be a blur.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

CrossfitChick1980
Posts: 54
Joined: Wed Nov 25, 2015 9:40 pm

Re: Cancerversary

Postby CrossfitChick1980 » Thu Dec 13, 2018 7:45 pm

I'm with you on this bring the crappy year. The last Christmas that we experienced rough chemo and husband's fatigue was back in 2015. Trying to keep the holiday cheer but it is hard when my husband isn't doing well.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Cancerversary

Postby Koreysue » Thu Dec 13, 2018 8:16 pm

Everyone deals differently with things. Caregivers need “care” too. Post traumatic stress is common with a serious health crisis. Memories come flooding back. I recently started going to therapy because my stress level was so high. It’s really helping so far. Just try to be present in the moment, (I know, easier said than done).
Kor
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Cancerversary

Postby Deb m » Fri Dec 14, 2018 10:30 am

As a care giver to my husband, I completely understand. I found myself literally living from ct scan to ct scan, without remembering anything in between. I myself had a simple medical procedure last year which required an overnight stay in the hospital, the same hospital that my husband spent so many nights in and received 6 months of chemo from. Just walking into the place caused my to have a panic attack, and it had nothing to do with my procedure. It was a rush of absolute horrid memories that gave me this severe panic attack. I find that still happens all the time with many things. I look back and I just don't see how I made it through, and these attacks now 8 years later, still happen. I feel that in some ways I am emotionally wrecked, or at least greatly damaged forever. My husband has been NED for 8 years now and I still suffer, when he seems completely fine. He has a routine colonoscopy coming up in a couple of weeks and I'm already starting to freak out. He tells me not to worry about it, no big deal for him. I think in some ways , it's harder on the caregiver.

Hang in there, I do understand and I think it's almost a normal feeling.

deb m

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Cancerversary

Postby crikklekay » Fri Dec 14, 2018 10:38 am

Punky44, I am wishing you so much good luck and strength to get through this! I know how hard it is and hope your mother does well. By next Christmas, this will just be one big awful memory. I'm thinking of you both.

CrossfitChick1980, I am so sorry your husband is having trouble. I hope your friends and family are giving you both the support you need and aren't just adding onto the pile. Whenever family would ask how my DH was doing I felt like I couldn't be 100% honest and it was exhausting pretending everything was okay. I assume that's how you feel now, trying to keep up the good cheer when it's the last thing you feel at the moment. I wish you both the best and I hope you have someone to lean on when being cheerful is just too much.

Koreysue, I've thought about going to therapy but (a) I don't even know where to start when trying to find a therapist and (b) I'm always wondering if it's "bad" enough to warrant the cost or if I'm just being over-emotional. I do think I've shaved years off my life this year in just stress wear and tear on my body alone.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Cancerversary

Postby crikklekay » Fri Dec 14, 2018 10:48 am

Deb m wrote:My husband has been NED for 8 years now and I still suffer, when he seems completely fine. He has a routine colonoscopy coming up in a couple of weeks and I'm already starting to freak out. He tells me not to worry about it, no big deal for him. I think in some ways, it's harder on the caregiver.


Yes, exactly! He seems completely fine while I'm the one worrying over everything. It seems so backwards, I wasn't the one dealing with chemo and all the horrible side effects, the colostomy bag, or getting multiple surgeries but I was the one who seemed to be suffering the most emotionally. During the last few treatments they would do a depression test and ask how he's feeling and I sat there bewildered because my answers would have been the opposite of his if they had asked me. I managed not to freak out over his last blood draw but when it looked like I may not be able to be there to see the results I started getting panicky. I'm sure I'll be a wreck over his colonoscopy and CT scan next year. Most of my friends/family don't understand and seem to be of the opinion that chemo is over so now things are great and back to normal, which doesn't help.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Cancerversary

Postby Gravelyguy » Fri Dec 14, 2018 11:43 am

I think in some ways , it's harder on the caregiver.


As the cancer patient, I can absolutely say yes to this. It was no fun going through the treatment but I at least knew how I was feeling and doing. My poor wife had to deal with a guy who has trouble defining any kind of pain or discomfort. I didn't want anyone to worry so didn't say much. This only led to more worry on her part.

I would absolutely rather be the patient than the caregiver. I hate feeling helpless. My wife fell and broke her wrist and tibia plateau the week before reversal surgery, I got to help her all summer with her recovery and the desire to make her feel better was overwhelming at times.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Cancerversary

Postby Koreysue » Fri Dec 14, 2018 12:05 pm

People who are not in the situation themselves or as a caregiver often think: “yay chemo is done, all is well”. Yes, it is a nice feeling to reach that milestone, but being done with treatment brings its own struggles and anxieties.
As to therapy, it’s probably not for everyone, and I was hesitant and very skeptical, but I have found that it has really helped me. I just asked for a therapist recommendation at the oncologist office, and made sure my insurance allowed therapy visits.
Korey
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan


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