Brain mets . . . and they're aggressive

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

Re: Brain mets . . . and they're aggressive

Postby MissMolly » Mon May 15, 2017 10:14 pm

AnnClare:'
As Dorothy of The Wizard of Oz said to her beloved dog, ToTo, as they looked out against the expansive plains of Kansas, "There's no place like home."

Home is where true healing begins.

It is FANtastic to hear that you are home from the hospital and in the comforts of your own home with family.

In preparing your favorite foods and dishes, your mother-in-law is fostering your health and recovery. Home-made dishes have one critical element that processed foods do not have. And that element is love.

When I am feeling punk and deficient of "spoons" (refer/Google to The Spoon Theory for details), my mother will often make me baked vanilla custard. Baked custard is a favorite of mine. Flavorful with ample vanilla extract, it is soothing and comforting. The tradition of my mother preparing baked custard brings its own cascade of good memories, memories of my mother and I that more often than not buoys my flaggering spirits.

I have little doubt that my mother' baked custard lifts my dampened spirits by altering my brain's hormones and chemical messengers (serotonin, oxytocin). The better is my brain chemistry, the better is my physical body and its ability to navigate healing and recovery.

I look at home-made food as good medicine - for the body and the soul.

Enjoy the simple pleasure of sharing a meal with your family. Feel the love around you. Kudos to your mother-in-law for extending herself to you and your husband.

Continue to follow your own best instincts. You know your body and its needs better than anyone.

Sending you faith and hope in reclaiming your health,
- K -
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.

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WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Brain mets . . . and they're aggressive

Postby WriterGirl1969 » Tue May 16, 2017 7:45 am

AnnClare: I was so angry to read some of the sucky stuff you had to go through, but as always I love the people on this site for the love, support and endlessly fantastic information that they have to share. I feel I was *extremely* fortunate to have a surgeon who very early on in my journey told me something I will never forget. I asked her about my diet and whether or not there was something I should be doing differently, and she said to me, "Nothing that you did caused your cancer. There are plenty of people that eat better than you with cancer, and plenty of people that eat worse than you without it. It's just bad genetic luck."

The more I've seen and heard, the more I agree with her. When I read your post and all the replies, it reminded me of a recent article from the journal of medicine about a new research study. It says (in part) that: "dumb luck plays a more significant role than either environmental, lifestyle or hereditary factors in causing this disease."

Here's the link if you want to read it. http://science.sciencemag.org/content/355/6331/1266 (click on the View Full Text).

Whatever you decide to do, I hope that you are able to shrug off the weights that have held you down so that you can enjoy your life and family. To heck with the doctors and their statistics. You live to be 90+ and show them all! :twisted:

Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Brain mets . . . and they're aggressive

Postby Bev G » Tue May 16, 2017 12:26 pm

Hi Annclare,

So glad you got home from the hospital! Yay for some good, home cooked food and returning to limited work if that's what you feel like doing. I heartily applaud your amazing attitude. (You don't have to have an amazing attitude everyday if you don't feel like it though) I hope the radiation works wonders and that you will feel better soon.

Warm best wishes to you,

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

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Brain mets . . . and they're aggressive

Postby DarknessEmbraced » Tue May 16, 2017 12:36 pm

I'm so glad you're home!*hugs* I hope work goes well and that you enjoy the home cooked food!*hugs* I hope your right arm gets easier to use.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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

Re: Brain mets . . . and they're aggressive

Postby AnnClare » Wed May 17, 2017 10:49 am

Last night, dinner was MIL's homemade meatballs, pasta, and green beans, followed later by an M&M cookie and a few morsels of Ghirardelli milk chocolate. Mmmmm.
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

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

Re: Brain mets . . . and they're aggressive

Postby Soccermom2boys » Wed May 17, 2017 4:56 pm

Yum! Sounds like food for both the body and soul! So happy to hear you are home and eating some tasty, home cooked food! Glad to hear you are also following what works best for YOU--it's easy for someone who has been successful with their dietary restrictions and their cancer success to make a broad generalization, but as we know, no two bodies are the same and who's to say their cancer would have not come back regardless of their diet choices? Please keep us updated from time to time, have you in my thoughts. :D
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

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Brain mets . . . and they're aggressive

Postby Maia » Wed May 17, 2017 5:54 pm

Just coming here to see how you're doing and leaving love here. So glad your mother in law cooks so well... mmm...
I'll come again to see what's in the next menu. Oh, well, and to check how you're doing, AnneClare :wink: <3

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

Re: Brain mets . . . and they're aggressive

Postby AnnClare » Thu May 18, 2017 9:29 am

Another day - I'm thankful to still be here, fucked up right arm & hand, and persistent dizziness aside. Continuing to count my blessings as things could be worse, as we know all too well on this board!

I remain ever grateful for the lovely folks on this forum - your cheer-leading helps me more than you know! Last night as I was prepping dinner (a friend made turkey & sausage gumbo - yum! which I had over that 'evil demon' known as white rice - gasp!) it really, truly dawned on me how MUCH I value quality of life over quantity. Yes, I've said it before, but for some reason last night it really struck me. What's the point of being on this planet if you're going to feel constantly deprived, grumpy, in pain/discomfort/misery, what-have-you? Make the effing most of each day and live it as fearlessly, joyfully, and without regret as much as effing possible, I say!

My 'energy healing friend,' during our visit that evening while I was in hospital (the same night she insinuated I was digging my grave with my teeth if I didn't change my evil dietary ways!) told me of a woman she had worked with, but then refused to. The woman was from a large Italian family and commented that she'd ''rather die than change" her diet. Well, damnit - that's her choice. If someone can be happy living his/her life while denying him/herself favorite foods or entire food groups, more power to them. But that's not for everyone. And as it's been pointed out, we can't ever be certain dietary changes are responsible for remission, cure, etc.

We each have our own little path on this unfortunate, unwanted walk we must take, and I think listening to our inner voices, doing what PLEASES us at a time when so few things do, is CRUCIAL. Trying to control anything in life, particularly something as unfair, erratic, and complicated as cancer, is futile, and will only result in wasting precious energy that is better spent elsewhere . . . like drinking a cold glass of chocolate milk, taking time to pet my dog in the morning, reading a book, doing laundry, or watching frivolous but wonderfully distracting You Tube videos.

That's my two cents for the day. :)
Cheers to my co-warriors in this fight - hope y'all are all having the best day possible! Let's kick some cancer ass!!!!!
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

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

Re: Brain mets . . . and they're aggressive

Postby MissMolly » Thu May 18, 2017 10:05 am

Ann:
I wholeheartedly agree with you that quality of life is the more important barometer for me.

I have been on Palliative Care for 4 years. It has not been a picnic.

Good health is the foundation for much of what we consider to be a good life - pursuing a career path/work, relationships with family and friends, pursuing hobbies and avocations, et al.

It is a surreal experience to witness the erosion of my health and well-being. Sitting on the sidelines as the world outside hums along. Adapting and adjusting to a body that no longer is my friend.

I hear 'y'a.

Chocolate milk is one of my favorites. You do not need to be a child to enjoy chocolate milk.

Sending you healing energy and genuine blessings,
- 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.

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

Re: Brain mets . . . and they're aggressive

Postby AnnClare » Thu May 18, 2017 10:27 am

Karen - true dat! Every day is about trying to adjust to a 'new normal,' and trying not to be angry at or annoyed by a body that is giving me the middle finger, despite the immense love and care I've given it for 42, almost 43, years.
Life . . . right? Whatchagonna do - gotta just keep keepin' on. Even when it's frustrating and hard as f***.
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Brain mets . . . and they're aggressive

Postby Lee » Thu May 18, 2017 11:13 am

(((Karen))) and (((AnnClare)))

Thinking of you both,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Brain mets . . . and they're aggressive

Postby peanut_8 » Thu May 18, 2017 5:50 pm

Ann Clare, I tried to find a nice glass of chocolate milk to give send a toast though internet space to you in honor of your amazing attitude.
Unfortunately, I wasn't successful. Going to have to go with this chocolate chip cookie shot cup.

Image

Apologies for the large size.

Hope you're enjoying your self today.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Brain mets . . . and they're aggressive

Postby CRguy » Thu May 18, 2017 8:00 pm

Apologies for the large size.
size matters ...... :shock:
not that anyone would worry about that much chocolate .....

Ok ...OK .... get your minds outta' the gutter ma' homies

=>> not enuff room down here with me :mrgreen:

the REAL measure of a life well lived ... IMO
IS YOU .... living YOUR LIFE
imperfect as it may seem to others

it IS the only one we've got,
so OWN it
KICK ASS and take names

BUTT in the end ... take NO prisoners
leave NOTHING on the field
waste NOT one second on " woulda' coulda' shoulda' "

THAT is the essence, BUTT not that easy to realize / achieve / resonate with

which is why I am always On The Journey
and In Harmony witcha'll

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: Brain mets . . . and they're aggressive

Postby AnnClare » Sat May 20, 2017 2:14 pm

peanut - that photo you posted. Yum!

CR Guy - yep. Making each day & moment count, and as enjoyable as possible. :)
Today I managed to polish my toes, effed up right hand and all. Progress. It's the little things.

Breakfast before heading off to work: Pillsbury Toaster Strudel. DEEEE-lish. :) And so easy to make!
Hanging at home now with the Mr. & our pup. If the weather doesn't turn on us, we plan on going to a local restaurant for dinner. We could both use a change of scenery & a little revelry (i.e., good food and some wine!)

Later, my friends & fellow kick-assers! :)
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

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Brain mets . . . and they're aggressive

Postby peanut_8 » Sat May 20, 2017 5:59 pm

Hope you both have a fabulous dinner!

fellow ass-kicker

Image
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED


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