What's In a Name

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mmckenz13
Posts: 4
Joined: Sat Jan 13, 2018 10:46 am
Facebook Username: Mark McKenzie

What's In a Name

Postby mmckenz13 » Mon Jan 22, 2018 10:51 am

I'm about 8 months into my cancer journey an am currently sitting in a room while the radio active sugar just injected into my body seeks out any active cancer cells.

I have in my lifetime been called by many names. Some good. Some bad. Mark is my given name. Mark Allen when I have or am not behaving. A partial list would include, Diane and/or John's son, Greta's grandson (personal favorite), Carrie's husband (the best one) Audra or Aidan's dad (another favorite), Coach (this one is awesome). There are others, again some good and some bad.

Here is my question to this group of peers with and unfortunate commonality. When did you call yourself by the name I want more than any other, cancer survivor?
Diagnosed 06/04/17, age 48
Right Hemi-Colectomy 06/19/17
Stage 2b colon cancer, T4aN0M0
Lymph-vascular invasion undetermined
0/50 lymph nodes
No chemo, no radiation
CT Scan moved up due to high recurring fatique of undetermined cause - 01/12/18
Enlarged Lymph nodes revealed by CT
PET Scan - 01/22/18
NED - 01/23/18

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: What's In a Name

Postby Robino1 » Mon Jan 22, 2018 11:26 am

Your post brought tears to my eyes.

I was a cancer survivor, and proudly called myself that name, for 3 years.

I hope to call myself that name again...
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: What's In a Name

Postby Lee » Mon Jan 22, 2018 4:34 pm

My understanding you are a survivor from the moment you are diagnosed. Different people use different time lines. It was a few years before I would use that word. I was so scared of jinxing myself. I know of a few others who felt the same way.

Bottom line, it's up to you. Good luck with your PET scan,

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 - 10 years and counting!

stu
Posts: 812
Joined: Sat Aug 17, 2013 5:46 pm

Re: What's In a Name

Postby stu » Mon Jan 22, 2018 5:21 pm

I really want that for you . That’s a beautiful name .

I think I will just call my mum “Mighty Maggie” as she survives everything to date that cancer has forced her to endure.
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

teachpdx
Posts: 611
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: What's In a Name

Postby teachpdx » Tue Jan 23, 2018 3:47 pm

I'm five years out and I've just become comfortable saying I'm a cancer survivor. Usually comes up in relation to something else and it's usually an explainer.

Technically if you're here you're a survivor. Best of luck on your journey & your new you. Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

kiwiinoz
Posts: 1095
Joined: Thu Jan 03, 2013 11:44 pm

Re: What's In a Name

Postby kiwiinoz » Thu Jan 25, 2018 1:15 am

Mark

Interesting subject and sounds like you are in a place that many of us have been in. A dark place, where all hope seems gone, and nobody, apart perhaps from the people on this forum can understand you.
When I was diagnosed I went from "you have cancer", to "you have stage IV cancer" overnight so I was very certain that I had no hope and when I was first on this board I was superscared as I knew that I had very little chance of surviving for any length of time, let alone becoming and staying cancer free.

I came across a fell by the name of Eric, that we all knew as "Brown Bagger" and I talked to him a lot, a little on this board, and a lot more via messaging. The one thing he taught me was that my focus was all wrong in that I was focusing on the negative, that I could not control, and that was determining my view on life, or what possibly remained of it. He had a motto, which was Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

It really changed things for me. I am not going to say that the worry and fear went away, but I tried to focus on enjoying life and pushing the fear to one side. I wasn't going to let cancer decide how to live my life and I would try to enjoy it.

As for calling myself a cancer survivor, I am not too much into that. I have had cancer, that has changed me as a person in many ways, and I try to take the positives from it. I can say I felt less worried about cancer at about the 3 year mark but for me, and most likely you, that was a lot of scans, a lot of worry and even now I don't call myself a cancer survivor.

I see my oncologist in about 1 month which will be my five year mark, and if he calls me a cancer survivor I will feel a lot better as he is super conservative. Otherwise, I keep plodding along doing what I do.

Good luck

Kiwi

P.S. Did you get your PET Scan results and if so what did they say?
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 Feb 2018
Port Out 26 March 2015

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mmckenz13
Posts: 4
Joined: Sat Jan 13, 2018 10:46 am
Facebook Username: Mark McKenzie

Re: What's In a Name

Postby mmckenz13 » Sat Jan 27, 2018 8:04 pm

PET scan came back NED. Thanks for the support.
Diagnosed 06/04/17, age 48
Right Hemi-Colectomy 06/19/17
Stage 2b colon cancer, T4aN0M0
Lymph-vascular invasion undetermined
0/50 lymph nodes
No chemo, no radiation
CT Scan moved up due to high recurring fatique of undetermined cause - 01/12/18
Enlarged Lymph nodes revealed by CT
PET Scan - 01/22/18
NED - 01/23/18

Jasin
Posts: 1
Joined: Sun Jan 28, 2018 6:35 am
Facebook Username: David Lane
Location: https://bestazy.com
Contact:

Re: What's In a Name

Postby Jasin » Sun Jan 28, 2018 6:44 am

Hello.
Life quotes!
"I left home at a young age due to my chosen lifestyle. I've been distanced from my mom for ten years now. I miss my mom. Throughout my late teens and early twenties, I've struggled with staying in one place, creating a home for myself, holding down a job that I enjoy or could tolerate, and keeping myself safe. I am now 28 with a child of my own – she's five. Having gone through recent misfortunes and a very rough path, we've started to overcome it. I've had my job, at Starbucks, in good-standing for a year now. I've even made my way to Shift Supervisor within this year. I did a lot to prove myself. When these necklaces came into the store, I saw the Be Giving Key, which I thought was appropriate. I purchased the necklace for myself – to remind myself and others to Be Strong, Be Happy and Be Me. This product is a beautiful idea, thank you for my necklace."
No worries,life still continue,we need get all what we can claim from there!
-Jasin!
DX - 11/16
MSS - KRAS wild
Stage IV CC with liver mets
5FU - Failed twice - 3/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! CEA 1/17 - 33!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage

kiwiinoz
Posts: 1095
Joined: Thu Jan 03, 2013 11:44 pm

Re: What's In a Name

Postby kiwiinoz » Sun Jan 28, 2018 5:24 pm

Good to hear Mark, and may you continue to remain that way
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 Feb 2018
Port Out 26 March 2015

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: What's In a Name

Postby Basil » Sun Jan 28, 2018 9:38 pm

Awesome. Enjoy it.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: What's In a Name

Postby juliej » Mon Jan 29, 2018 6:05 pm

mmckenz13 wrote:PET scan came back NED. Thanks for the support.

Congratulations, cancer survivor! Sounds like you earned the name! :D :D :D

I talked to an older woman in the waiting room at Sloan once about what the word "survivor" means.

She said, "Honey, if some doc looks you in the eye and says you have cancer and you don't drop dead of fear, you are a cancer survivor."

I think that's my favorite definition!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: What's In a Name

Postby Robino1 » Mon Jan 29, 2018 6:14 pm

I love that definition, Juliej!!!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e


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