My short bio: Did an AMA a year ago when I was undergoing chemo. (

At that time we thought it was localized. Chemo and radiation looked to have resolved the original area 100%. People seemed to be interested in the journey of a cancer patient, so I'm back again. Things have changed, I'm now Stage IV.

Comments: 539 • Responses: 87  • Date: 

TheSkyIsR611 karma

Any advice on how to support someone mentally who has terminal cancer?

BluePinky805 karma

It's tough man. I'm not in that situation, but for me I find it best when people just act like themselves, as if everything is normal.

acwill968 karma

I have Stage IV for a little over a year now and just got to the point where I’m sick of every conversation (with some people in my life) being about cancer. A few weeks ago, I just hit a wall where I had to sit down and tell those people to please treat me like their daughter, sister, friend, and not just a cancer patient. Please just go about your life; let me live mine. You don’t have to remind me every chance you get that I have cancer. Believe me, I haven’t forgotten.

BluePinky121 karma

Totally feel that.

kikiubo319 karma

What symptoms did you have before knowing it was cancer? Hope everything gets better

BluePinky361 karma

Bleeding when using the toilet.

griffincorg132 karma

When that occurred, was it considered too late into the discovery of your cancer? How did you know it wasn't hemmorhoids initially instead?

BluePinky227 karma

I didn't. Doctor thought it was hemorrhoids. A few months earlier would not have made much a difference.

PNWoutdoors88 karma

How did they ultimately determine it was cancer, a blood test? I have bleeding at times, bright red, but I do have occasional hemorrhoids. If it's a simple lab test I might want to ask for one to rule out cancer, but I'd love to hear what steps were taken to investigate.

BluePinky119 karma

Colonoscopy found a tumor.

griffincorg40 karma

Thanks for answering. I had an uncle (not blood related) who passed away from colon cancer. Wishing you luck on your journey.

How long did it take before you thought "hey, this isn't normal..I need to see a doctor about this" ? I had some hemmorhoids and usually it gets better after using some cream, but I do feel at times I have IBS or something a bit more scarier like cancer.

BluePinky66 karma

It was a few months before I did anything about it. If you're bleeding and feeling nervous you should talk to your doctor.

JonBoyWhite14 karma

Red blood or dark blood? I've had severe stomach issues most of my life. Always heard bright blood is ok. I've bled a lot. Hate that you're going through this. Rooting for you.

BluePinky55 karma

It was bright red. It depends how high up the bleeding is. High up will be black. The lower, the redder.

TBundles15 karma

Did you have any accompanying anal pain? Not to get gross on you, but it’s something I experience relatively often (blood/pain) but it usually goes away and comes back

BluePinky13 karma

No, no pain.

Throwaway_24throw29 karma


BluePinky46 karma

I would ask a doctor.

itssarahw30 karma

Thank you for sharing. Was it constant or almost every time?

Thanks again for sharing, your ama is incredibly insightful and kind of you

BluePinky37 karma

The amount varied, but there was usually some amount of blood.

GwenTheHuman11 karma


BluePinky8 karma

No, not constipated.

GwenTheHuman14 karma


BluePinky6 karma

Doing well, thanks!

KGoo8 karma

Blood only on the tp when you wiped?

BluePinky18 karma

No, it was a total bloodbath.

futurespacecadet17 karma

Interesting, and what test did you do to find the cancer? I’ve had bloody stools consistently for like a year, so I finally got a colonoscopy but they didn’t find anything, they just thought it might’ve been surface level abrasion.

BluePinky32 karma

It was a colonoscopy that found it.

nDQ9UeOr32 karma

Also stage IV CC here. I never had any bleeding, first indication was elevated liver enzymes showing up in blood work during a routine physical. Already metastasized by then, of course.

BluePinky15 karma

Sorry to hear that. Where are you at now?

nDQ9UeOr25 karma

Xeloda/Avastin on a two week on/one week off cycle, everything mostly steady state for a couple years and side effects are relatively easy to manage. The cancer is also present in some lymph nodes, so probably a different path than yours. Interesting to read about the pump you have, hadn't heard of that before.

Sending positive thoughts your way, brother/sister.

BluePinky10 karma

Thank you. No xeloda side effects? Wow. That stuff didn’t like me. Good luck to you.

mystiquetur238 karma

Are you doing okay, mentally? My mom had stage four lung cancer after stage 2 throat. I’m sorry you’re going through all this. Eff cancer!

BluePinky170 karma

Yes, I'm doing okay!

LitchiSzu160 karma

Good luck with the treatment. I'm in a similar situation, except it's been spotted when already stage 4 (colon, spread to the liver).

Are you going through chemo again? How often? And how do you deal with the side effects that are not helped much by medicine?

I struggle a lot personally with chemo every two weeks as I really only have 3 to 4 days where I'm "ok".

BluePinky175 karma

I'm not doing systemic chemo right now. I did that a while ago. With the liver met, I had a resection and they installed a hepatic arterial infusion (HAI) pump in my abdomen, which delivers a high dose of chemo directly to the liver. I get that filled every two weeks. Having some side mild effects, but nothing like systemic chemo side effects. Good luck to you, wishing you the best.

acwill27 karma

That’s a super cool treatment!

Galdin31131 karma

I agree. Got one of them done my self. The Dr's have found that even in those that they are unable to cure it on average adds at least 2 years to the patients life.

BluePinky17 karma


Galdin31114 karma

Yep. Surgeon was Dr. Kingham

BluePinky21 karma

Don’t know that doctor but MSK is really pushing the pump treatment these days.

Galdin31111 karma

Yes, yes they are. They are the ones that pioneered it. Now its going more places as Dr's leave MSK or others come in and train with the MSK Drs.

BluePinky6 karma


mysterymeat6916 karma

I’m about to have a surgical consult for a HAI. What sort of side effects are you seeing?

BluePinky41 karma

Upset stomach all the time, urge to use the bathroom when I don't really need to. Other than that I have some high liver enzymes that I'm taking a steroid for. Compared to systemic chemo, it's a vacation.

squeekytoy133 karma

I'm also a stage 4 patient (going into clinical trials soon). How are you doing with your doctor's? Does processing all the information they give sorta give you a headache, like your brain is gonna explode from too much info all at once?

BluePinky143 karma

Sorry to hear that. I'm not yet at the point of clinical trials, there is a chance my current treatment plan can work out. No, actually my doctors are fantastic. They take the time to explain everything and I can always call back to their team with follow-up questions. I have no complaints at all about them.

ImperviousBear113 karma

As a future nurse, what are some things you liked (or didn’t like) from your time spent with healthcare providers regarding your initial diagnosis and treatment process?

Also, how much have your WBC levels fluctuated throughout your treatment? Thanks for your time and effort and I wish the best for you.

brothernephew136 karma

I’m not OP but I’d like to answer re: cancer treatment and diagnosis. Like OP said, nurses are everything. My family lives far away and couldn’t be there for a procedure. My nurse spoke to my mother privately via phone and talked her off the ledge and she had 0 obligation to do that - could have told her to come in, wait for info, etc.

When you’re sick sometimes you just do not give a fuck if the other ppl waiting for surgery see your underwear or your gown slips. Nurses who took that responsibility on to allow me to retain dignity meant a lot to me. When I said “who cares” they said “we do, baby, don’t move we will tie your gown. No no no you don’t need to move, we’re gonna scooch you right on over.”

As you probably know after anesthesia and/or a catheter you have to relieve yourself to be discharged. A nurse stood with me in the bathroom pouring warm water in between my legs because she knew I could get little droplets but was getting pee-shy and that asshole bladder gets lazy. That makes me tear up. I apologized for the act, while she chose to do it, and she laughed with me as if it was two friends in a bathroom helping each other.

I could go on forever. Nurses are absolute saints. Some of us (me) hate appearing weak and needing help. When a nurse acts like it is nothing to them, rather their pleasure, and treats me with that empathy and laughs with me, can sense my hesitation … it can be the difference between a panic attack and a positive attitude.

I’ll add: I’ve had nurses advocate for me to doctors. Huge. They see me more, they know when im hurting or acting strange. Absolute saints.

BluePinky37 karma

Very well said. Totally agree.

BluePinky92 karma

The medical professionals, doctors, nurses, etc. are some of the most amazing people I've ever met. There is nothing they could have done better.
I did not keep track of my WBC count, but I can probably check my test results.

_pandapuffs87 karma

I am in my 20s, and am currently battling breast cancer. I just finished systemic chemo, and I’m waiting for my surgery and my biggest fear is recurrence or it never going away.. My question is, how did you find recurrence? Or were you never able to get clear margins and it never went away?

big hugs to you

BluePinky106 karma

Original tumor had resolved 99% through chemo and radiation. I went in for an appointment to get my all clear when they gave me the news that it had metastasized to the liver. That was not a good day.

We're very advanced in today's age with imaging and bloodwork, but they are limited. There can always be microscopic cancer cells that don't show up on scans. That's why they do mop-up chemo after surgery, etc.

omwibya58 karma

since it's colon cancer, got any advice for people? like timely colonoscopies, stuff of that nature? Good luck!!!

BluePinky129 karma

I had symptoms for a while before I got a colonoscopy. It was during the height of Covid and a colonoscopy was considered an elective procedure. I would say if you're experiencing any bleeding, talk to your doctor.

No_Refuse326752 karma

How do you feel about yourself, how do you see life now if any different than before?

BluePinky114 karma

I don't feel any different about myself tbh. I find family time more important, and try to spend more quality time with my kids.

dmbf10 karma

Depending on age of your kids, do you find you have more patience for typical kid/young person annoyances? Or same same?

BluePinky7 karma

Yes, probably.

teflong33 karma

How are you managing the conversations with your kids? How have they taken it? Ages?

BluePinky75 karma

Those were rough. However my wife and I decided we were going to be completely open with them and not hide anything. It was tough but they have a right to know the reality. Oldest is 12, youngest just turned 4.

D3f4lt_player31 karma

does cancer hurt? can at some stage you feel you have cancer without being diagnosed?

BluePinky23 karma

I don't know, I never had any direct pain from it.

Ryeruvrootru25 karma

Is your cancer incurable at this point? With current treatments, that is.

BluePinky123 karma

No, it's not. There's definitely a chance. Hoping my treatment works out.

lifted333up107 karma


BluePinky80 karma

Never. Thank you.

bagofbuttholes23 karma

My best friend had stage 4 colon cancer a few years ago. Was very scary but he is doing great now. He found out he has lynch syndrome through it. Do you have a similar genetic disorder or was this just bad luck? I wish you the best, idk what I would have done without my best friend, and I'm certain there is someone feeling the same way about you.

BluePinky17 karma

I don't have any genetic disorder that I'm aware of

CanalAnswer22 karma

What do you wish people would (or wouldn’t) ask you about your chemotherapy and your prognosis when they’re trying to be supportive?

BluePinky31 karma

Before I got sick I was also curious about it. I understand it and the questions don't really bother me.

slamueljoseph17 karma

Are you still able to work, and has your employer been accommodating to your medical needs?

At this point, how much has it cost you to support your treatments financially?

BluePinky31 karma

Yes, I am working daily. My company is great. I also have excellent insurance so that has not been an issue.

thepurpleskittles16 karma

Thank u for doing this AMA. My father recently was diagnosed with stage 4 rectal cancer, spread to his lungs after being “cured” of stage 2 rectal cancer about 18 months ago… But now I am at odds with the oncologist who is recommending we just wait and watch before starting chemo, because he now only has 2 small nodules left in his lungs… after a big surgery was needed to remove and biopsy a slightly bigger nodule they had been watching for a few months…. And the surgery/biopsy was strongly recommended after seeing some growth of these lung nodules on the scans. I feel like they should be doing more! Did you have input or a “choice” about starting your treatment now versus later?

BluePinky19 karma

Yes, I definitely had input. Watch and wait is becoming more common, but I'm surprised they're doing that when there are visible tumors. I'm not a doctor though.

brothernephew11 karma

Watch and wait is brutal. A neuroendocrine tumor was found in my appendix during pathology after emergency appendectomy two months ago (meaning they had no idea I had cancer when they removed appendix so they did not look for/take other tissue). The tumor was stage 3 bc it was small BUT was spreading out of the “skin” tissue into my mesoappendix. They believe they removed it all Bc of the size/likelihood of it leaving my appendix&mesoappendix was small. To “finalize” their belief I am “cured” is more localized CAT scans with contrast for lymph nodes & the rest of my GI. It just feels like … I know they are being careful but why not schedule a colonoscopy too given then appendix location? My numbers are good. I don’t want a hemicolectomy. But I want to know I’m clear :/

Sorry to vent. I’m tired of waiting.

BluePinky11 karma

Yes, it's hard. I was on watch and wait as well after my chemo/radiation. The other option was surgery on my colon. The doctor told me if I insisted on surgery they would do it, but it obviously has lifestyle changes involved. I opted for W&W and it resolved 100%. The liver met was definitely there beforehand and would have shown up regardless of surgery or not.

bobisourlord15 karma

What's your favorite song?

BluePinky79 karma

Creeping Death probably.

Anakin_Sandwalker13 karma

Is your favorite live version of that song from 1991 in Moscow?

BluePinky15 karma

Hell yes.

GrapeAyp12 karma

I’m not a doctor: Any possibility of an mRNA-based treatment? I know Moderna is/was working on trials for several cancers

BluePinky9 karma

I have no idea.

SugarplumRui11 karma

Thank you for doing this AMA! Sorry if this has been asked but what country are you from? What do you do to help distract yourself from the whole ordeal? Is there strategies that can help? I work in health care and support cancer patients so this would be really useful.

BluePinky21 karma

USA. Work is my therapy. If I would be at home in bed I would go crazy.

Active201710 karma

Are you ever angered when hearing others complain about relatively minuscule problems? I’ve had a bad day today and reading stories such as yours make me feel like my problems are nothing and I need to just suck it up.

BluePinky19 karma

No, of course not. Everyone has their own issues they’re dealing with.

UsernamesAreRuthless10 karma

I've always wondered if anything felt sore or hurt during/before treatment. Does it?

BluePinky22 karma

I have not had any pain directly from the tumors themselves. The treatments have had painful side effects.

abd00bie9 karma

Has your diet changed after your diagnosis?

BluePinky15 karma

My appetite has changed. I am not in the mood of eating as much as I used to be.

Eden_Biton9 karma

My apologies for not reading the whole thread but: what kind of cancer and how old are you? All I can say is: good luck and never loose hope...I just discovered that there is one in a trillion+ chance to teleport yourself given effects of quantum physics, if this is possible everything else is too!

BluePinky34 karma

I'm in my low 40's. Was originally colon cancer but spread to the liver.

Eden_Biton14 karma

Sorry I'm dumb you've literally written the type in the other thread on you have any regrets? Anything in life that you think you've done wrong? Pls. keep us updated.

BluePinky29 karma

We all have regrets. However, every choice we make in life sets us on a different path. I'm happy where I ended up.

HumidCrispyCat9 karma

Excuse me if you've already answered this, but can you explain the progression of your symptoms? Like from the first thing you noticed was off, to your symptoms at the time of your diagnosis? Wishing you the best!

BluePinky12 karma

The only symptom I had was bleeding in the toilet.

danlion028 karma

How often was there blood in your stool? Was it every day for weeks before you had it checked out?

BluePinky18 karma

It was a few months. I tried getting checked out but they would not do colonoscopies at that time, as it was considered elective. It was the height of Covid.

bilgekaana8 karma

Does it hurt pyschically or mentally more?

BluePinky27 karma

Not physically at all. There are mental games you have to play with yourself sometimes.

daemon_reddit8 karma

Hi! Recently (since 2018) my dad (I'm 14) has had lung cancer stage 3, and I was wondering what I could do to make him feel better, because we don't know if he's getting an operation yet?

BluePinky8 karma

Sorry you’re going through this. Everyone is different and everyone deals with these situations differently. You know your dad better than anyone. Personally, for me, I am happiest when everyone carries on normally. But to each their own. Good luck, hope your dad pulls through okay!

Zerech127 karma

First off Thank you for the AMA! … but I must apologize if I get dark real quick:

I have had family members battle with cancer and seen the compounding mental emotional struggle…often this was their first existential threat and forced experience with their impending death…

With your ongoing experience, how has this shaped your view of death?

Do you feel that you have changed as a person? If so can you elaborate?

Did you have a good support system either professionally (healthcare) or personally (friends/family)?

What are your own personal views on doctor assisted suicide? (Death with dignity laws)

Thank you for your valuable time! I am curious to hear your thoughts since these questions and related conversations did not go over well with my fairly religious and dogmatic family… any discussions on the topic devolved into a sermon rather than an introspection of ones own ideas, feelings, and experiences.

BluePinky21 karma

With your ongoing experience, how has this shaped your view of death?

I am not afraid of it. I do wish to avoid it for the time being.

Do you feel that you have changed as a person? If so can you elaborate?

No, not really.

Did you have a good support system either professionally (healthcare) or personally (friends/family)?

Yes, I'm part of a large family and they're all super-helpful when necessary.

What are your own personal views on doctor assisted suicide? (Death with dignity laws)

As a religious person and someone who values life, I am against it.

oneblank7 karma

If you’re in the US, how do you afford treatment? Did you hit your maximum out of pocket? If you stop working because of it how do you recover lost wages and retain your health insurance for prolonged illness like cancer?

BluePinky7 karma

I have excellent insurance.

EsseB4207 karma

What has been the hardest part of it all besides actually finding out you have cancer?

BluePinky14 karma

Telling my kids.

gingermonkey17 karma

A friend of my just told me that her cancer spread to her liver, lungs, and bones. I don't even know what to say. I was knitting her a shawl/scraf and they were supposed to visit where I live on their way back east. But now she is just trying to home to MI.

I don't know what to say, I did let her know how distressed I was and how I would help in any way to inculde money if she needed it. If she were local I'd start cooking/baking for her (it's how I show love).

Is there anything else I should be doing or saying? Is it okay to let her know how devastated I feel?

BluePinky8 karma

Wow. That doesn’t sound like a good situation. Everyone is different. You know her better than I do. People react differently to situations.

Raspieman6 karma

Are you re-evaluating your life or future? I think I would question going to work, wasting time at home, the way I spend money, how I think about small annoyances, …

BluePinky25 karma

I'm not facing imminent death at the moment. Hopefully my treatment plan works out.

Raspieman6 karma

Sorry if I gave off that impression. I struggle with these thoughts, even without any known illnesses. I wonder how my outlook on things would change if I got a diagnosis like that. I guess it all depends on how content you are in life and how positive your look is on things.

BluePinky8 karma

I would agree with that.

bunsNT5 karma

How has the cancer changed your relationships with your friends/coworkers?

BluePinky7 karma

Hasn't at all. I really didn't miss much work throughout treatment.

cervicalgirdle4 karma

How does insurance play into all of this? Are they covering your costs?

BluePinky8 karma

Most of it, yes.

qwertyboy2994 karma

I’m a MS1 with a plan (for now) to specialize in Heme-Onc. I would really appreciate some insight on things the good doctors have done/said, and maybe some things that have put a bad taste or made you less confident in their ability to provide adequate healthcare? Thank you for sharing your story!

BluePinky15 karma

I should point out one thing. I am someone who appreciates bluntness. I don't want to be babied by a doctor who is afraid to give me the unvarnished reality. I told them that when I originally met them and they've been true to it. I appreciate them so much more for that.

BluePinky8 karma

Nothing specific. They've just been great. Take the time to explain everything in layman's terms, give me all the options, and are just great people overall.

toigz3 karma

What do you feel? I imagine you must be able to few stage 4 cancer in some way or another? Or maybe not?

BluePinky6 karma

I feel good for the most part.

businessJedi3 karma

You’ve posted several YouTube videos of the same guy playing music, is that you?

BluePinky10 karma

I wish. That’s a guy I’m a big fan of. Incredible talent.

climbstuffeatpizza3 karma

What's your favorite board game?

BluePinky9 karma


Kapstaad3 karma

Do you have any idea why/how you got this cancer? Any long-term exposure to chemicals, dietary habits, or other "likely culprits", in the vein of 'stuff you did that other people should perhaps avoid' -- or do you feel like the cause was pretty much random in your case?

BluePinky8 karma

I was a smoker a long time ago, but there is no way to tie that to this directly. Haven't had a cigarette in 14 years. I have no family history. Bottom line, there's no way to know.

Wkais2 karma


BluePinky3 karma

No, not planning on it anytime soon.

Wkais2 karma


BluePinky5 karma

I’m not afraid of dying. My outlook is it doesn’t pay to be anxious or nervous about something I cannot control. Whatever happens will happen. That said, my treatment has some real chances of working out. So while I’m not afraid of it, I wish to avoid it for now.

Wkais3 karma


BluePinky2 karma


Galdin3112 karma

Hey how are things going? How's HAI treatment and how many more rounds do you have left?

BluePinky3 karma

Much better than systemic chemo, that’s for sure. 2 rounds left and then we’ll re-evaluate.

duramus2 karma

Are you scared? Are you undergoing further treatment? Do you use medical marijuana?

BluePinky9 karma

Not scared. Doesn't make sense to be anxious about something you cannot control. Yes, I am undergoing a different kind of treatment now. I have a pump in my abdomen that delivers chemo directly to my liver. I do not use medical marijuana.

Snuffy17173 karma

I have a pump in my abdomen that delivers chemo directly to my liver.

That just blew my mind... Medical science has come so god damn far.

BluePinky5 karma

It's truly amazing.

TwentyThirdApril_011 karma

Are you sad?

BluePinky2 karma

Not at all.

usergirl24681 karma

What were your earliest symptoms that immediately made you think "something isn't right here?"

My aunt had colorectal and she found the 'bag' and losing her hair to be triggers for depression as she felt unattractive to her spouse. Did you experience any low points like that? How did you cope?

BluePinky3 karma

Earliest and only symptom was bleeding when using the bathroom. I did not have a bag and only experienced partial hair thinning through treatment.

jiggeroni5 karma

Did you have bright red stools or were they black and tarry.

Bleeding and stool should always be taken serious but a lot of people have bright red stools from hemorrhoids or straining on the toilet

BluePinky3 karma

It was red as the tumor was pretty low.

foolish_jordon2 karma

How much blood was it? And was it consistent every time you went?

BluePinky2 karma

Varied. Sometimes a lot, sometimes next to nothing.

Tuner4201 karma

What is your favorite meal? I'd love if you described it into detail :)

BluePinky2 karma

Spaghetti and meatballs. Onions and some pesto.

Surgeboy991 karma

how would you describe your diet in your life leading up to your cancer diagnosis? Do you think that it contributed to your current disease?

BluePinky1 karma

No way to know.

Surgeboy992 karma

Just wondering if the diet was healthy?

BluePinky1 karma

No, not particularly.

TheD1v1s1on51 karma

How do you feel when people tell you that they know you feel?

BluePinky1 karma

Unless they’ve gone through it they cannot possibly know how I feel. But I appreciate the sentiment.

Throwaway_24throw1 karma

Where there any symptoms except for the bleeding from rectum?

BluePinky1 karma


dj-shortcut-11 karma

Hey, would you be open to take a strong psychedelic? What's the worst that could happen, it's not like you're going anywhere? Am i right?

BluePinky11 karma

Don't see the need for it.