Two Years Ago and a Thank You

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JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Two Years Ago and a Thank You

Postby JudeD59 » Mon Aug 14, 2017 2:15 pm

I've read different opinions on when to start counting your "cancerversary" on different websites. Some start counting from the day they were diagnosed while others count from the first day they are cancer-free. I'm not sure which is correct, but I just wanted to post today because on August 12 of 2015, the cancer was cut from my body after being attacked by radiation and Xeloda. So when I was wheeled out of surgery, the cancer was supposedly out of my body and my CEA's and scans since then support that supposition. 2 years without cancer living inside me.

The past two years have been a hell of a long ride and I am forever changed by the journey. Not only physically, but mentally, emotionally, and my opinions on many things have also evolved. I was a private person and that is no longer possible or desirable. I remember being in the hallway waiting for my radiation treatment way back at the beginning of all of this and a woman I had never met before was standing in front of me telling me about her radiation treatments for her breast cancer. In the middle of her tale, in the middle of this very public hallway, she suddenly dropped her robe to her waist to show me the redness on her bare breasts. I have the worst poker face in the world and I'm sure my eyes just about popped out of my head while my face blushed as red as her irradiated breasts. But now, I would worry less about modesty and more about how I could help her with her burns. I gave a play by play account of my treatments (leaving out the parts that would get me banned) on Facebook and was told repeatedly how brave I was to share my experiences publicly. Brave? Not really. Writing things out is how I process issues that terrify me plus it was easier to share it all at once through Facebook instead of explaining it a hundred separate times to individuals, and I wanted the truth as I know it out there instead of gossip that can get twisted and exaggerated as it passes from person to person. And if it helped one person deal with their own issues, whatever those issues may be, then ...

When you are trying to get pregnant and failing, it seems like all you see are babies--everyone you know is suddenly pregnant, you can't walk down the street without seeing strollers and toddlers clinging to their parents' hands, and every ad on tv is for baby products. Just like when you are doing a prep and can't eat and all the ads are for food you never eat but suddenly seems irresistibly mouthwatering. Now that I've taken the cancer journey through hell, I see cancer all around me---so many friends, family, and acquaintances have been diagnosed in the past two years. I start to watch what I think will be an innocent tv show or movie and boom--someone in it is revealed to have cancer. It could be a minor character and not add much to the plot of the movie, but at some point, cancer will be mentioned. I'm thinking of making it into a drinking game--do a shot every time cancer is mentioned in this sit-com about a dysfunctional family making it work!

I used to be a "It will never happen to me" type thinker even as things were happening to me, over and over. I went for a regular gyn exam thinking it would be routine as usual and walked out needing a complete hysterectomy for a type of ovarian cancer. Had to have several scheduled and emergency surgeries after that, but still kept a glass half-full view of my life. Went to my gyn again in 2015 for what I sincerely believed were hemorrhoids. Was sent to a specialist by her because she was sure it was prolapse. Specialist told me to see my PCP because he didn't find any rectal prolapse. PCP sent me to colorectal surgeon for a colonoscopy because I was overdue for one (had to cancel previous one because of bowel obstruction surgery) but PCP told me he was 99% sure it was nothing and just wanted to be over-cautious. Colorectal surgeon felt something during initial exam, but said it might just be benign polyp. Best to have colonoscopy to be sure. Still, I never actually in my heart of hearts thought it would be cancer. I sincerely expected to wake up and hear that he removed the polyp and I would see him again in five years or something. Instead, I came out of my grogginess to hear that it was definitely cancer, but, he was quick to assure me, he didn't think I'd have to have a colostomy bag. As though that was my main concern as I heard that I had cancer.

But now, I read things like, "If you make it through two years without a recurrence, your chances of the cancer coming back are statistically reduced," and I don't take heart from it. They can do all the studies they want and add up all the numbers, but the reality is, we are individuals, not numbers, and no one knows if or when it will come back. And no one has an explanation of why my CEA's were off the charts before my surgery, which almost always means spread to other body parts. My glass is still more than half full, but now it's filled with things like, "I'm so glad it's me and not my husband or one of my daughters." I can't begin to tell you how glad I am about that. I'm strong enough to handle it for myself, but please God, don't make me watch one of them suffer. For all the caregivers on here, thank you for what you do. It takes incredible strength and sacrifice, and that feeling of helplessness when you want so badly to make it better and can't must be excruciating. My glass is also full of just enjoying the day-to-day pleasures like feeling the sun on my face or cooking a new recipe that makes my family clean their plates and ask for seconds, or reading a book so engrossing that when I close it, it takes a few minutes for me to remember where I am and what time of day it is. I love losing myself in a great story.

And my glass is half-full with all of you. One of the quotes that resonated with me throughout this journey came from Grey's Anatomy, strangely enough. It was-

"Recovery is not a team sport.
It's a solitary distance run.
It's long, it's exhausting,
and it's lonely as hell."

I did and still do find recovery to be lonely as hell because no matter how much support you have or how good it is, no one else is experiencing what you are and to be the only one feeling those pains, those emotions, those frustrations, and those issues is lonely. You can describe it to your loved ones in detail and they can sympathize and relate in small ways, but then you watch as they live their lives---jumping up easily to grab something as you struggle to stand, gobbling a chocolate donut without thinking twice as you try to decide if pasta and whitefish will be safe to eat or land you on the toilet all night, feeling aches and twinges without worrying that it is cancer rearing its ugly, ugly head the way you do on a daily basis, and you are eternally grateful that they are living healthy lives and don't have the same concerns you do. But it is lonely being the only one who does.

Which is why you are part of the filling of my glass. Although I wish none of you were going through this hell, I'm so much less lonely because I have the members on this board who get it. You all really understand the frustrations, the anxiety, the anger, the relief, the bone-deep fatigue, the isolation of needing to be near the bathroom or the couch or the hospital or wherever you are currently stationed, because you've been there yourself. None of us need to be alone because we have each other. And even though having each other is sometimes heartbreakingly painful, it is also joyous and enriching and funny and priceless.

Thank you for filling my glass for the past two years plus.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

ashima2016
Posts: 36
Joined: Thu Dec 01, 2016 10:56 am

Re: Two Years Ago and a Thank You

Postby ashima2016 » Mon Aug 14, 2017 2:47 pm

Thank you for sharing! Wish you the best.

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

Re: Two Years Ago and a Thank You

Postby MissMolly » Mon Aug 14, 2017 5:28 pm

Judy:
A genuine Thank You for "putting yourself out there" as you do on this forum, using your God-gifted talents as a writer in the first person and composing posts and narratives that a real and honest depiction of living through a cancer diagnosis. Your use of words and language is a powerful medium to connect with others.

I think we all have one or two posters who resonate more strongly to us than others. You are that Special Poster to me. I gravitate immediately to any new post submitted by you as the contributing author. I seek posts with your byline. Why? Because you are authentic, real, informative, wise, honest, truthful, and detailed as well as lighthearted, witty, engaging, empathetic, heartfelt, and caring. You offer hope but are not afraid to be truthful - a delicate balance of realistic optimism.

I have felt you to be a kindred spirit. We may be thousands of miles apart, but we are close in heart. You have offered me a supportive hand when I have needed it most. And I thank you for that far more than you will ever know.

I agree with your sentiment that illness is a lonely endeavor. I can be surrounded by family and yet feel alone. There is an invisible boarder that separates those who are "healthy" from those who are constrained by compromises health. It is especially expressed when full recovery is not to be found. I keep looking for my former self. I cannot find her.

Know that you have a fan club of people who adore you and who appreciate your talented writing and train of thought and expression. Me, among them.

Sending you positive karma for all things good for you in life and health,
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.

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Two Years Ago and a Thank You

Postby AbbyDoo » Mon Aug 14, 2017 6:12 pm

Wow Judy,
I could only wish I had your writing talent.
You nailed it with this post. I have read threw it twice and each time I got tears in my eyes.
People don't talk about the emotional Side of cancer, I believe it's harder than the actual treatment it's self. There were so many times I just wanted to have a major breakdown only to put on the game face and try to look strong for love ones. Even two years later like you it's still hard some days to put on those big boy pants and try to live a normal life.
Congradulations on the two year NED
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Two Years Ago and a Thank You

Postby benben » Mon Aug 14, 2017 6:41 pm

Your post resonates with me, and reminds me of some lyrics in a song that I play a lot recently with my Gtar.

"It's a cold and it's a broken Hallelujah" - Hallelujah.

Each step of the way.


best.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Two Years Ago and a Thank You

Postby Basil » Mon Aug 14, 2017 6:57 pm

"My glass is still more than half full, but now it's filled with things like, "I'm so glad it's me and not my husband or one of my daughters."

At my lowest, this was the one thought that always gave me at least a hint of a smile. "At least it's not one of my boys. I'll take it but spare them this nonsense."
40 y/o male (now 46), kids 11 & 14.
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
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Two Years Ago and a Thank You

Postby ams5796 » Mon Aug 14, 2017 8:11 pm

Love the Grey's reference. That's a good one. Recovery is a very lonely pursuit. No one knows what we go through. I also have become a much less private person and I find myself telling folks some very intimate details of my issues. Sometimes I regret it afterwards because most of the time nobody really gets it. That's why being on here has been so valuable. It's the only "place I go" where I feel completely comfortable with who I've become. It's lonely out there when you're dealing with cancer. It's all changed. That seems to be the worst part of all.

I'm glad you seem to be in a good place, Judy. I wish you the best.

Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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

Re: Two Years Ago and a Thank You

Postby Lee » Mon Aug 14, 2017 8:45 pm

JudeD59 wrote:
"Recovery is not a team sport.
It's a solitary distance run.
It's long, it's exhausting,
and it's lonely as hell."

Thank you for filling my glass for the past two years plus.

Judy


Yes this truly is a wonderful forum with a lot of wonderful, intelligent, caring people. And when you have to go through something like this cancer, it really is nice to have a place to go where people really to "get it"

Congratulations on you 2 years canceriversary, and I love that quote. Had not seen it before, butt so true.

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!

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Two Years Ago and a Thank You

Postby ozziej » Tue Aug 15, 2017 12:56 am

Happy cancerversary Judy. If only I were closer we could celebrate by participating in that drinking game :mrgreen:
Best wishes
Jan :D
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Two Years Ago and a Thank You

Postby susie0915 » Tue Aug 15, 2017 7:27 am

Judy,
Your post is spot on. I joined this board recently because I needed a place to go to express my thoughts and feelings. I'm also 2yrs out from diagnosis, and 16 months post treatment. Even though I'm done and things are good I deal with physical effects of treatments and also the mental issues that plague me. Things have gotten so much better the last six months but this disease is always in my head. My family is so supportive but sometimes I just want to complain and I know they don't want to hear it, so there are times when by myself I will cry just thinking of all I went through during that year of treatments and complications. When you're going through treatment you are actively fighting this disease so you feel like you're doing something. Now waiting for Dr appts scans and bloodwork you feel a little helpless wondering what is going on in your body. I've been told the further away you are from treatments and as ned continues the easier it gets. Thank you for your post I enjoyed reading it, and congratulations on your 2 year anniversary.

Susan
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Two Years Ago and a Thank You

Postby JudeD59 » Tue Aug 15, 2017 3:47 pm

Thank you to all of you for your kind replies to my rambling.

Miss Molly, you've had my heart for a long time and you know I cherish the special bond we've formed. If I've given you even one smile, then I'm happy. You've given me so much helpful information, but also support, encouragement, smiles, and joy. Thank you, Karen.

AbbyDoo, I agree that the emotional part is exhausting and doesn't go away after the treatments are finished. I try to have my emotional breakdowns in the shower. That way no one sees or hears them. I think it's healthy to just let yourself have a good sob-fest every once in awhile.

Benben-I love that song. Pentatonix does an acapella version of it that is beautiful and moving.

Basil-Amen. That thought kept me going, too. One of my daughters has lupus and if it were possible to take that on for her along with the cancer, I would do it in a heartbeat.

Ann-Thanks. I wouldn't say I'm in a good place, but definitely a better place. Scanxiety is already starting to build for October and the CEA results in September. For some reason, I'm more worried about this one than past ones. I'm a much less private person than I used to be, but I must still have some reservations. I've been toying with writing a book about my cancer experience and have even made some rough notes, but the thought of everyone looking at me and picturing all the different instruments that have journeyed up my backside still makes me hesitant. Maybe I'll just start it and see how it goes. I could always just keep it for a personal journal for myself and not try to get it published.

Lee-I was watching an old episode of Grey's on Netflix and had to pause, rewind, and copy that quote down because it spoke to me so clearly. I now have it on my office wall to remind me not to rush things and to come on here when I get lonely. Thank you for being one of the people who "get it" and offer support so generously.

Jan-Cheers! I would love to raise a glass with you someday.

Susie-I've said before that one of my biggest pet peeves is people who think, "You had your treatments, the cancer is gone, now move on," as though the treatments don't leave issues of their own and the emotional toll doesn't linger. Luckily, we have the members here who understand it isn't as simple as just getting on with your old life.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

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

Re: Two Years Ago and a Thank You

Postby CRguy » Tue Aug 15, 2017 6:12 pm

Beautiful post Judy
thanks for sharing with us all !

keeping it REAL sista' !


CHEERS!
CR
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

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Two Years Ago and a Thank You

Postby WarriorSpouse » Wed Aug 16, 2017 12:32 pm

Well said Judy!
Check out my footer quote to help break up those long runs... I think any athletic quote on perseverance and mental mindset can only help people on this board as they move through this maze in life. Running is definitely a mental toughness sport, and so is living and fighting through cancer. There are many parallels to grab onto. Happy NED trails!
"Run Forrest! Run!" -(Forrest Gump's GF Jenny)
:) WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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

Re: Two Years Ago and a Thank You

Postby DarknessEmbraced » Thu Aug 17, 2017 4:04 pm

Thank you Judy for sharing your moving and heartfelt post with us! I wish you all the best! :D
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! :)

skb
Posts: 100
Joined: Tue Mar 28, 2017 2:00 pm

Re: Two Years Ago and a Thank You

Postby skb » Fri Aug 18, 2017 11:47 am

Nice encouraging post. You are right on when you say that being diagnosed changes your life for ever!
3/21/17: Dx T3N0M0-mid rectal 4.5cm
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17 to 12/17: Folfox
8/19 VATS - 1cm lung nodule
7/17/21- Clean CT, CEA 15.6 !
8/24/21- PET , biopsy finds met along obturator lymph nodes
10/1/21- Surgery , 12 rounds of FOLFIRI -ended 4/22
4/15/22, 9/6/22. 1/20/23- Clean scan, normal CEA
10/23- four sub-centimeter lung nodules, all PET negative


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