not a fan of the "new normal"

Please feel free to read, share your thoughts, your stories and connect with others!
skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

not a fan of the "new normal"

Postby skypup » Mon May 12, 2014 12:31 am

This "new normal" stuff is just the pits. And, yes, I am in pretty bad mood tonight. Here I am googling "lymphedema pain" at midnight and stopping by the board to check up on our friends who are facing such tough times. What was it like to be able to live without being cognizant of how much energy was being expended, so as not to hit the wall? I really can't remember. How about not keeping a mental list of "weird shit" symptoms and trying to come up with my own personal TOE (theory of everything) that can explain them all because the doctors can't? Dunno. What's it like not to be holding place for so many people facing far worse than me? How simple that life was.

My new normal includes:
. limiting activity to preserve energy
. trying to stay in shape when I can't exercise in any significant way (hate the downward spiral)
. becoming an online poker whiz to entertain myself in this new limited life -- what a laugh!
. being grateful for old good friends who have learned to roll with me
. being grateful for new good friends around the world who travel this path as well

What's your new normal?

User avatar
tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: not a fan of the "new normal"

Postby tchan8888 » Mon May 12, 2014 12:47 am

Limbo sucks ....

My new normal:
Body/muscles do not heal or respond as well
Hoping I can hold my bowels for more than 20 minutes after eating
Watching TV too much
Reading novels that I would have never tried before like Tolstoy and Proust
Not caring if I drink too much ....
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: not a fan of the "new normal"

Postby skypup » Mon May 12, 2014 12:56 am

tchan8888 wrote:My new normal:
...
Not caring if I drink too much ....

You know what LOL stands for? I actually did!

User avatar
Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: not a fan of the "new normal"

Postby Voxx66 » Mon May 12, 2014 1:10 am

some of mine so far:
Less energy
Spending more money
Going out less
more naps
worries about every pain
no more shooting rifles (port)
planning activities around the damned pump
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: not a fan of the "new normal"

Postby skypup » Mon May 12, 2014 1:16 am

Voxx66 wrote:planning activities around the damned pump

Yep, that's a big one. Dinner invitation ==> check the chemo schedule...

Forgot a funny one: asking friends (really good ones) about their sex life 'cause that's the closest I'll ever get again. Wish I'd had a lot more fun in the few years before Dx; it happened to be a nun-like period of time. Sigh. Wonder if that's why I got cancer?

User avatar
Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: not a fan of the "new normal"

Postby Voxx66 » Mon May 12, 2014 1:24 am

Strangely enough my sex life is still pretty good for now but the desire isn't what it used to be. And obviously the chemo schedule has to be worked around.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

User avatar
Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: not a fan of the "new normal"

Postby Voxx66 » Mon May 12, 2014 1:28 am

Oh and it's not just going out and such I have to schedule around the pump. It gets in my way for the various projects I do. I have to worry about that stupid tube getting damaged. Was going to BBQ this last week and decided it was too much risk that I would burn the tube as it tends to flop around.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

User avatar
Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

Re: not a fan of the "new normal"

Postby Kathleen808 » Mon May 12, 2014 1:31 am

Hi Skypup,

I wrote out a whole post on lymphedema. And I have no idea where it went. Are you in treatment with a lymphedema physical therapist? How are your kidneys? Dick has been in physical therapy for lymphedema since January but now we know he should have been wearing stockings and getting therapy back in the fall. I'll keep my eye on this post to see if you have more info. I can share what has worked for Dick.

Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: not a fan of the "new normal"

Postby skypup » Mon May 12, 2014 2:53 am

Aloha, Kathleen. thanks for the reply. Just figured out the LE part of the puzzle. Have had pain for a while, but just getting fluid in ankles lately, and it always precedes a pain flare so I know it's related to what the mets are doing above it (have LN mets in inguinal chain, so it's beginning to make sense.) My kidneys are good, and I am an MT, so can do manual lymphatic drainage massage on myself. I am hoping that my docs will pay attention to me now that they can SEE evidence of the inguinal LN mets and perhaps I can get some relief with a bit of radiation... How is Dick doing with his LE?

Btw, I am headed to Maui in a couple of weeks -- can't wait!

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: not a fan of the "new normal"

Postby Jachut » Mon May 12, 2014 3:10 am

Im crippled with self doubt and social anxiety, I actively avoid mixing in the staffroom, socialising, etc. I have little confidence in myself and often feel unhappy and dissatisfied with life. I thought i breezed through the cancer experiencem, but Ive really struggled since.

I have to budget energy too, cant exercise like i did and really probably cant work full time, be a mother and wife and have quality of life too.

Weird shit symptoms that cant be explained - yup. Where on earth does five days worth of food hide inside me? I dont shit, ever, unaided, even with my colostomy (which makes it all heaps easier).

I dont like my new normal much.

My latest symptom? Feel like Im pregnant, food aversions galore, cant stand the taste of ANYthing but sugary carbs like cakes and cookies. I finished treatment three years ago - why now?

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: not a fan of the "new normal"

Postby Bev G » Mon May 12, 2014 8:00 am

My new "normal" (but I've never been "normal")

Just about everything sucks, actually.

I am chronically exhausted. If I do one thing I want to sit down and rest afterwards. The no energy is the worst because I have a lot of crap to get done. The best thing always sounds like a nap to me. I don't sleep well at night because of the effing neuropathy. I think it would be easier to tolerate it if it was diabetes-related. It should have been after 48 years of type 1 diabetes, butt noooooooo......chemo neuropathy. My feet drive me insane and my fingers feel like they have electrodes attached to them.

I have no appetite and everything tastes like cardboard STILL, more than 3 years after chemo. I can't ever think of what I want to eat because I virtually never want to eat anything. I still have very frequent diarrhea (though I read yesterday that 10% of people who have had their gallbladders out have chronic diarrhea) My surgeon took mine out as a precaution/favor when he did my liver resection.

My brain, which I value a lot, works like shit any more. I get lost easily. I don't understand directions. I can't remember anything. I have a very strong family history of Alzheimer's, and wonder constantly if THAT will be the next shoe to drop.

OK, whine finished. It's simply amazing how we can possibly survive cancer and still have our lives so impacted, so horrendously. I feel incredibly guilty complaining, when so many of my beloved are struggling with just getting through. Cancer sucks.

Love to all,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Cat
Posts: 78
Joined: Wed Oct 23, 2013 12:51 pm

Re: not a fan of the "new normal"

Postby Cat » Mon May 12, 2014 8:11 am

My new normal:
live on a diet of white stuff and chicken
left with a permanent disability after surgery, so can't run, play sports, ride a bike, etc. etc. etc.
worry too much, think too much
can't eat very much at one time from radiation thickening
get tired easily
but I do try to count my blessings every day...
Cat
dx: stage 111 cc
surgery 2010
concurrent chemo and radiation
surgery
recurrence 2012
folfox
surgery
currently ned

User avatar
Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: not a fan of the "new normal"

Postby Guinevere » Mon May 12, 2014 9:26 am

I'm...New normal

My world revolves around side effects and my pump schedule
Debilitating fatigue - a lot of the time, I look like Tim Conway's "Old man"
Back pain due to worsening degenerative disc disease - Thank radiation :wink: I can't pick up baby granddaughter if she's on the floor. She's already past my weight limit.
Constipated a good portion of the time due to muscle relaxers as well as atropine during Irinotecan infusion.
Itching all the time from steroid skin
Constantly watering left eye
Things, odd things, smell funny and turn my stomach like lettuce and bowl margarine. :roll:
Mouth sores getting progressively worse so a lot of my diet now is soft, no pepper, no crispy stuff, nothing hot and I'm not up to cooking anyway.
Chemo brain
Cracked feet and hands from hand/foot syndrome

I'm thankful that I'm still mobile, that the mets haven't spread beyond my liver in the 3 years since I was diagnosed, I am enjoying being a hands-on grandma, I have stuff to numb my mouth (Praise the Lord!), I can still laugh at myself, my wonderful friends here on the CC, there are people all over the world praying for me.I'm sure there are a lot of other things but I got very little sleep last night due to "hot feet", back pain & mouth sores waking me up and my brain isn't working well this morning.
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: not a fan of the "new normal"

Postby janderson » Mon May 12, 2014 9:55 am

I think i can speak for all of us when I say there is NOTHING normal about our "new normal". What a joke.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: not a fan of the "new normal"

Postby NWgirl » Mon May 12, 2014 10:15 am

That about sums it up except I'm more of a Bejeweled whiz than Poker.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 94 guests