About Regret, Acceptance, and

Please feel free to read, share your thoughts, your stories and connect with others!
jonheres
Posts: 3
Joined: Sun Feb 09, 2020 2:58 am

About Regret, Acceptance, and

Postby jonheres » Sun Feb 09, 2020 3:45 am

Hi,

I ve been reading silently, and the love and kindness ive felt have made me decide to talk about this with someone else for the first time in my life.

Im Jon. I live in Panama. Im 42. I had a rough time from the age of 16 until i finally seemed to get some stability around age 33. During that period i lived a very unhealthy lifestyle, and afterwards, not much better. I have been a heavy smoker, but never touched alcohol. By 2013 i was doing more or less businesswise, also I was in great shape ... Working out, playing squash, doing stuff. One day while looking in the mirror i noticed a "weird belly" ... watery .. small but neglectible ... I though, well, seems to be age catching up ... Fast forward some month later ... I started to have orange and dark yellow pee ... In total negation, about something being wrong, i just started to drink more water ... it made my pee look clear again, and well, it is healthy right? Fast fwd another couple of months.. late 2013 i discovered a hard node , hard as a stone, and very superficial, above my belly button. So yeah, google is clear, i decide to go to the doctor. He sticks his finger into my rectum, asks me to pee in front of him, and seems to beleive i have kind of a distended abdomen. So he refers me to get a CEA bloodbork, do an abdomen scan. I went out of his office and just put the papers inside my cars front cabinet (?) and forgott they existed. Google said it clear .. You have ascites, you have nodes , whatever you have, its probably stage 4, so yeah, ascites and cancer = end stage. So i just went on, i felt particulary ok besides the small watery belly and the hard node.

2014 .. I open my new business, its doing great, but i injured my knee playing squash so i stopped working out for 6 months ... I gained weight .. just like my belly .. but you see, long ago, before i started working out and being fit in 2013, i was overweight ... i know how a fat belly feels ... this is not the same, this are ascites, but since im gaining weight now, eating trash food, and kept smoking, i guess its easy to fool everyone, including myself ...

Fast foward to 2017 ... Im still here ... my cancer seems to be weird i say .. i think about it everyday, but i dont talk about it with no one. Im as heavy as you can get and ascites are bigger.,.. my cloth are telling me this. Now, my stool is yellow and i dont remember the last time i had a good dry , dark brown stool .. I seem to be intolerant to lactose now to .. go figure ... i switch to Delactose milk .. cut ice cream and keep going with my dark secret .. working hard ... having relationships ... going to the movies ... i also became a father for the first time ... it wasnt planned .. the condom broke and even though she took the day after pill, she became pregnant. My daughter was ment to come to this world, such a blessing, but i will not get to see her grow up , i recall telling myself.

I didnt get married to my baby momma, but i supported her all the way and ive been there, building up a relationship with my daughter who is now almost 3 years old.

during that time i met someone. A single mother, with 2 kids ... One little boy 10 years old and a girl, 4 years old. I fell in love, the moved in with me, and for the first time in my life, i was not alone everyday.

She showed me patience, and to not feel i have had it rough. She had 2 babys with 2 different, man. 1 that was violent to her, and one that raped her. Both kids carry her last name. No dads. She by herself raising them. supporting them. She is a hero to my eyes. And she have, for the last 2 years and a half, showed me what love is.

Last year, in october 2019 .. we were doing netflix. And she found two hard nodes in my left deltoid. I played them down. "Nothing to worry" I will go check them. Progression. Spread. Yeah, thats it ... Still incredoulous?

Now its February and i have had 1 hell of a week. Abdominal pain by the left side (consistent) and unable to eat anything solid without nausea. constipated. And to top it all, if i pass something is filled with mucus, thick, yellowish, disgusting mucus. Bowel obstruction, google reminds me... End stage cancer in your abdomen bro. So yeah, ascites + bowel obstruction? You have a couple of weeks if lucky. No surgery candidate. Bad Bad Bad prognosis ... Oh... and run to the ER .. you may get a perforation ... if you are not passing gas or stool its critical.

So yeah, me being me .. kind of a coward i guess.. what do i do? I try to convince myself its time .. convince? I meant, i realize and try to accept it if it comes ... So this is what i have done the last 5 days:

I switched to a 90% liquid diet ... to make some time (a couple of days more?) so i can see if i dont get totally obstructed and have to be rushed into the ER
I updated my will
Left 3 original identical handwritten copies (i called my lawyer and ask him how to do it properly "for my mom" whos old
Sent one copy to my sister in the united states via dhl and left 2 copies at home
I went and added my girlfriend to my life insurance . Now my girlfriend, my sister (to ease her financially from supporting my mom) and my daughters mom ....all will get some money when i go
I have found myself being nicer to everybody
I have been walking my dog 3 times a day personally (my Girlfriend loves to walk him so she usually does more than me)
I am a photographer and have a studio at home, and tonight the 4 of us (my girfriend, her kids, and me) did a family photoshoot ... a lot of beutifull pictures
I went visiting my mom last night with my girfriend .. My mom had a stroke and she cant talk that good, but she was so happy to see us there
I have made love to my girlfriend everynight. I have kissed her and i said "i love you" everytime i can without sounding suspicious
tomorrow if my health allow it i will go to a field trip with the 4 of them to a close beach and i will shoot some more video.
Tomorrow i will stop to smoke (yeah im still smoking, such an idiot right?)
On monday, if im still around i will walk into the ER to put and ending to speculation, not that i have not read enought and not that i dont recognize whats been going on for so long.
and then i will see my options. and if im still here i promise i will let anyone who read this know what happened in the hospital.

I cried 3 days ago. I cried today again while editing the photos we took. Im SO blessed to have a family with me. Its going to be hard on them and i know if thats destiny its out of my hands.

Is funny ... how everywhere in the internet they say Ascites are end stage ... i have had ascites visible and growing ascites for the last 5 years at least, now they are big. All on all ive been somewhat symptomatic for the last 7 years of my life.

And i wonder what would have happened if i did the tests? If it was discovered that i had cancer back then. Ascites and a node? or many nodes? I would have done chemo? Radiation? Go into a natural cure route like so many gurus advertised? And even though, if that was indeed what happened .. that i do have cancer, nothing i could ve done can guarantee i would have been alive now? .. I mean, i lived 7 years chemo free... met the love of my live... built a good business...

Or perhaps i couldve lived much longer. I will never know that.. for sure.

almost 5 days in a liquid diet and the pain its still there. Im passing stool in the morning a bit better and still passing gas throughout the day which i read is a sign the obstruction is not complete yet so i guess the liquid diet is giving me some time but the pain , more than pain, a bad discomfort, is still there and i get tired. Today for the first time i took a painkiller and it makes me forget it while im writing this.

Today i felt like asking her to marry me whichever the news are once i get looked at ... i know she loves me but wouldnt that be too cruel?

A part of me knows i was irresponsable. A part of me is phobic of hospitals and bad news. A párt .. a big part of me is a coward.. But another part of me .. after seeing Kobe Bryant go .. is SO HAPPY i had this few days to do all i have done and be with them the way he have been.

For those who beleive in G´d, i hope many blessings go your way.
For those who dont, i hope and chance falls your way. Only positive things.

Love,
Jon.

Claudine
Posts: 267
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: About Regret, Acceptance, and

Postby Claudine » Sun Feb 09, 2020 7:31 pm

Jon, what a powerful post. It really shook me and I’m not sure how to reply. Mostly I’m impressed that you seem to have found peace and acceptance. It must be hard to look back with so many  »what ifs », yet in the end it doesn’t matter, we make the decisions we make and that’s that.
Whatever answers you get from the hospital, I hope you can do that trip with your family and have a wonderful time! And with today’s medical progress, you never know what’s available.
Peace XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

jonheres
Posts: 3
Joined: Sun Feb 09, 2020 2:58 am

Re: About Regret, Acceptance, and

Postby jonheres » Sun Feb 09, 2020 9:22 pm

Claudine wrote:Jon, what a powerful post. It really shook me and I’m not sure how to reply. Mostly I’m impressed that you seem to have found peace and acceptance. It must be hard to look back with so many  »what ifs », yet in the end it doesn’t matter, we make the decisions we make and that’s that.
Whatever answers you get from the hospital, I hope you can do that trip with your family and have a wonderful time! And with today’s medical progress, you never know what’s available.
Peace XXXXX


Hi claudine, thank you so much for reading the whole thing and replying. Today i spent another amazing day with my family ... after, my GF and me left the kids at home and went to eat with some dear friends that we havent seen in some time and it was amazing .. loving , laugh filled evening. It is weird i must say, being there and NO one knows .. no one ... it is weird to listen to the people talking, everyone seems to talk in future tense .. we tend to make plans, but for me tonight it was SO obvious ... so i played along ... i hugged my friends when saying by, told them how good it was to see them ..

And my girlfriend, she is so happy .. i think me, being more like THIS for the last week has made her so happy ...

So know we are back home and she will soon go to bed and i will stay in my home office looking through my -TO DO LIST- so i make sure i havent forgot any critical thing.. and tonight i will write her a long heartfelt letter that i will disclose to her the location once i go into the hospital in the coming day. I will make sure she knows she changed my life .. filled with joy , happiness and growth.

Im trying to be all stoic about it .. till the point it may sound i am beyond sandness and fear .. that im at peace and in resignation ... im trying real hard , but im scared to ... im just trying to face this without loosing my dignity .. understand it happens to millions everyday and we each have our own destiny waiting and this is what i have to face in my own story.

I think about when i fall asleep and how good it feels to be dreaming. No pain. Good memories.. and i can only hope if my day is soon... i go out without too much pain ... like falling asleep with no regrets .. happy i have lived a terrific life, knowing i experienced love. travel, some kind of personal success and grow, and not alone, sorrounded by people who will think about me. I have changed as a human being so much in the last year, for the better, and perhaps that is why now may be my time, and i had the chance to go the right way. With people around me knowing i loved them.

It about time to face reality.

Hugs,
Jon.

Claudine
Posts: 267
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: About Regret, Acceptance, and

Postby Claudine » Mon Feb 10, 2020 1:38 pm

Please keep us posted - if you feel like it. You are going through so much. It looks like a lot of folks have read your post, but even if you do not get many comments, your information is very valuable to the CRC community - and hopefully, putting it in writing and opening yourself to others is also benefiting you. Your post is quite different from what I've typically seen here - usually people have met with a medical team, and seek additional information, or support, while they are undergoing treatment. I do not know how many people decide to forgo medical visits and confirmation; it may be more common in other countries, or not - those are people who typically do not post on cancer forums, of course.
I hope your partner is understanding, but I would expect her to go through the steps of grief upon learning something so life changing for her - she may be angry at you for not letting her know what you were really going through (but even that was an unknown, until now).
Wishing you strength and peace in the days (months, years?!) to come XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: About Regret, Acceptance, and

Postby Lee » Mon Feb 10, 2020 5:35 pm

jonheres wrote:Hi,

. . . Fast fwd another couple of months.. late 2013 i discovered a hard node , hard as a stone, and very superficial, above my belly button. . . . . Google said it clear .. You have ascites, you have nodes , whatever you have, its probably stage 4, so yeah, ascites and cancer = end stage. So i just went on, i felt particulary ok besides the small watery belly and the hard node.

. . . . .Last year, in october 2019 .. we were doing netflix. And she found two hard nodes in my left deltoid. I played them down. "Nothing to worry" I will go check them. Progression. Spread. Yeah, thats it ... Still incredoulous?

Love,
Jon.


Hi Jon and welcome. I truly hope you went to the hospital or saw a doctor today. Something is wrong, just not sure if cancer is the problem, at least not back in 2013. First of all, you can diagnoses yourself with anything with Dr. Google. Please stay away from Dr. Google.

If you had stage IV colon cancer back in 2013, I don't think you would be alive today. Stage IV, end of life usually means, limited activity, pain medicine, not being able to eat food as the body is shutting down. People at end of life tend to sleep a lot. Does this describe you?

Also most people with stage IV colon cancer usually lose LOTS of weight, not gain it. Weight loss is symptom of cancer. The fact that you gained weight is telling me you don't have cancer. I had one friend, stage IV cancer (not colon cancer) died with in a year of being told he had cancer. He lost 100 pounds in that one year time.

I had another friend, who chose to deal with her colon cancer a la natural, by eating healthy. When she was diagnosed, it was a stage I. She thought she had it under control, until the obstruction kicked in. Pain like you can not imagine. The pain alone drove her to get help from the ER. At that point she was a stage IV, they did a by pass and she passed away with in 6 months. She was also skin and bones at this point. Again does this sound like something you are going through?

Many years ago, my mother ended up in the ER, serious stomach pain and rectal bleeding. They did a colonoscopy on her, no cancer, not even one polyp, just a bad case of diverticulitis. Me I had no pain, no real symptom, just bad hemorrhoids. My primary doctor thoughts those bleeding hemorrhoids were going to be my excuse for getting my colonoscopy early in life. That referral probably saved my life. I was diagnosed Stage IIIC. My signature line tells the story

I'm not going to say you don't have cancer, maybe you do and maybe you don't. I'm just questioning having a stage IV cancer for 7 years without treatments, and very much alive and kicking today.

Please see a doctor if you have not already done so, and get a true diagnoses of what is going on. Anything else is just a speculation. And I suspect your life is worth far more than a speculation.

Please keep us posted, I'm praying it's nothing serious and that you have a long healthy life ahead of you,

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!

jonheres
Posts: 3
Joined: Sun Feb 09, 2020 2:58 am

Re: About Regret, Acceptance, and

Postby jonheres » Mon Feb 10, 2020 6:05 pm

Lee wrote:
jonheres wrote:Hi,

. . . Fast fwd another couple of months.. late 2013 i discovered a hard node , hard as a stone, and very superficial, above my belly button. . . . . Google said it clear .. You have ascites, you have nodes , whatever you have, its probably stage 4, so yeah, ascites and cancer = end stage. So i just went on, i felt particulary ok besides the small watery belly and the hard node.

. . . . .Last year, in october 2019 .. we were doing netflix. And she found two hard nodes in my left deltoid. I played them down. "Nothing to worry" I will go check them. Progression. Spread. Yeah, thats it ... Still incredoulous?

Love,
Jon.


Hi Jon and welcome. I truly hope you went to the hospital or saw a doctor today. Something is wrong, just not sure if cancer is the problem, at least not back in 2013. First of all, you can diagnoses yourself with anything with Dr. Google. Please stay away from Dr. Google.

If you had stage IV colon cancer back in 2013, I don't think you would be alive today. Stage IV, end of life usually means, limited activity, pain medicine, not being able to eat food as the body is shutting down. People at end of life tend to sleep a lot. Does this describe you?

Also most people with stage IV colon cancer usually lose LOTS of weight, not gain it. Weight loss is symptom of cancer. The fact that you gained weight is telling me you don't have cancer. I had one friend, stage IV cancer (not colon cancer) died with in a year of being told he had cancer. He lost 100 pounds in that one year time.

I had another friend, who chose to deal with her colon cancer a la natural, by eating healthy. When she was diagnosed, it was a stage I. She thought she had it under control, until the obstruction kicked in. Pain like you can not imagine. The pain alone drove her to get help from the ER. At that point she was a stage IV, they did a by pass and she passed away with in 6 months. She was also skin and bones at this point. Again does this sound like something you are going through?

Many years ago, my mother ended up in the ER, serious stomach pain and rectal bleeding. They did a colonoscopy on her, no cancer, not even one polyp, just a bad case of diverticulitis. Me I had no pain, no real symptom, just bad hemorrhoids. My primary doctor thoughts those bleeding hemorrhoids were going to be my excuse for getting my colonoscopy early in life. That referral probably saved my life. I was diagnosed Stage IIIC. My signature line tells the story

I'm not going to say you don't have cancer, maybe you do and maybe you don't. I'm just questioning having a stage IV cancer for 7 years without treatments, and very much alive and kicking today.

Please see a doctor if you have not already done so, and get a true diagnoses of what is going on. Anything else is just a speculation. And I suspect your life is worth far more than a speculation.

Please keep us posted, I'm praying it's nothing serious and that you have a long healthy life ahead of you,

Lee


Lee, first of all, thank you very much for taking the time to reply. Thanks for the positivity and your advice is as sound as it needs to be. Today i my insuranced called me that there was a wrong ID number of one of my beneficiaries so i had to go personally to their offices and took care of that. As for today i still have the same bowel problems, but since im in a 90% liquid diet (around 1000 calories per day + 7 glasses if water) pain is subtle, like if i have preassure constantly but not pain, in the area of my sigmoid colon. Im still passing gas somehow (little gas many times a day) im still burping a lot and im also passing little stool everymorning, very little, also some clear mucus (transparent) without any stool. I just called my doctor, he lives in another city and he will meet me in the hospital tomorrow around 12pm .. he ask me if im passing gas, stool, about pain, and told me to go to the ER if anything changes and looks more complicated in the followign hours but he thinks i did stabilize anything that may be ocurring with the liquid diet.

I also plan to call my sister tomorrow (she lives in the us) and tell her to come if the news are not good.

The only thing that bothers me is that i have stop smoking only yesterday and i wish i would have stopped a couple of weeks ago in case of surgery. We will see. Again, thank you so much for taking the time, this has been the only place i have been able to vent anything.

Hugs,
J

Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: About Regret, Acceptance, and

Postby Lee » Mon Feb 10, 2020 8:04 pm

Hi Jon,

Yes let your sister know what is going on. I can understand your fears, I just recently went through a 2nd cancer scare. Will not go into details now. But I let my brother know what was going on with the understanding I may need you. I understand you fears.

Just a few things to keep in mind, your symptoms could be caused by MANY things. Cancer is just one possibility. Mucus can be the result of irritation in the colon, track area, not always cancer, butt rather other medical issues.That is why you want to see a doctor, get a true diagnoses, not an assumption. Ascites is usually associated with end of life, very painful. Not something to cause weigh gain, butt rather leads to weigh LOSS!! Most people with ascites need to get it drained as it causes breathing issues, ie hard to breath PERIOD!!. You would not be working out with ascities.

Get a colonoscopy.

Cancer causes weight loss, not weight gain. Cancer needs what you give your body to survive. It will reprogram your body to feed it over your body's needs, thus weight loss for you. I was about 3 yrs out when some swollen nodes appeared on a Cat scan. Because of my gradual weight gain, my Onc was not worried and stress to me not to worry. Again, weight loss, not weight gain is associated with cancer.

Cancer is know for being a "silent killer". It does not rear it's ugly head usually until the end. Not 7 years prior. Yes there are exceptions, butt generally most people don't know until it's advanced. Including me.

Best advice I can give you, follow up with a medical doctor. Get the necessary test done. Not always fun, butt better than exploratory surgery which is what they did in the not so distance past.

Again, please keep us posted, I hope and pray you have a long life with that special lady you have found. Let her know what is going on, get a diagnoses and take your lives from there. I hope it is a long life for you both.

Lee

P.S. Edited to add, I am an exsmoker. When I was diagnosed, I asked about quiting. Surgeon and Onc both said, no, not know. I was 2 years out when my Onc started talking to me about quit smoking. I did because of her. I made a promise, get me through this and I promise I will do everything you ask of me to the best of my ability. I've been and ex-smoker for 13 yrs now. Chantix, I highly recommend it.
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!

Claudine
Posts: 267
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: About Regret, Acceptance, and

Postby Claudine » Tue Feb 11, 2020 7:59 am

YES Lee is making some excellent points! I hope all goes well with your appointment today.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule


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



Who is online

Users browsing this forum: Abb1981, boxhill and 44 guests