My short bio: In October of 2012 I returned to work from lunch and stopped by the restroom. Instead of urinating like normal, I had a small stream of blood and a little pain. Thinking I somehow developed a urinary tract infection, I left work and went to the urgent care center.

I was asked to produce a specimen, and was unable. The Dr proscribed me with some antibiotics and told me if I continued to have problems urinating after 6 hours, to go to the emergency room.

I went home, and still hurt. I took my antibiotics and about every 30 minutes felt like I had the urge to go. Still no dice – I would get a few drops of liquid and occasionally a small blood clot. After about 3 hours my lower back started to hurt really bad so I went to the shower and took a hot bath directly on the spot. My wife came into the bathroom and asked me if I wanted her to call my regular doctor. He talked to her for about 3 minutes and told her to take me to the emergency room.

I was taken to the ER at the University of Iowa Hospitals and Clinics at approximately 5 pm. By midnight, I had 5 different catheters attempted to try and clear the blockage in my bladder with marginal success. I was taken to have a CT scan where they discovered that my right kidney was 80 consumed with renal cell carcinoma (RCC - stage 3) and it was responsible for throwing the blood clots. I was scheduled to have a scope performed to remove the blood clots that morning at 5 am, and scheduled to have my kidney removed the following week.

In the last 10 months, I have had the following procedures – nephrectomy (kidney removal), been a part of 4 different cancer trials (including one pharmacological trial), was found with a tumor in my lung (diagnosed with RCC stage 4), had 9 tumors discovered in my brain (one large enough to require brain surgery to remove). I will be starting a 10 cycle course of whole brain radiation today so I can start chemo (Votrient).

I will put two pictures up from after my brain surgery for proof, alone with sending the front page of my surgical discharge orders to the mod.

Feel free to ask me anything.

My Proof:

  • edit - I have to go to treatment now. I will return and answer more questions when I get back if I have the energy.

  • edit 2 - I'm back from radiation. I feel a little light headed, a bit of a headache, and kinda high.

Could be worse. I'll answer what I can if there's still some left to answer.

  • edit 3 - I need to go to bed. I will try and look through anything I missed after tomorrow's day at the hospital. Two tests plus Radiation. Lovely.. :( Night all.

  • edit 4 - The Pretty Good Podcast (/u/randywang2) contacted me about the show. I wrote in yesterday night, and they contacted me right away. They read several Reddit user submissions that were sent in, and my email to them. I am going to be on the show! Thank you all so much. Here's the link to the episode where they did the shoutout to reddit and this post. They also put a link to the AMA on their website. (It starts around 5 minutes 40 seconds) You guys all rock so hard! THANKS!

Comments: 411 • Responses: 92  • Date: 

unmined142 karma

No question here. Just wishing you the best of luck. Fuck cancer; glad you have the courage to fight it.

lilzaphod45 karma

Thank you.

The_New_New26 karma

Don't start up a meth business

miketdavis46 karma

Or do start up a meth business. I mean, if you have cancer who gives a shit.

lilzaphod32 karma

+1, would vote for again. :)

lilzaphod35 karma

Lol. I already shaved an Hesienburg into my beard last night (first time in 10 years seeing my cheeks) in preparation for radiation.

I also have a lawyer and doctor on board for seed money for the winnebago. :)

PussyDestr0yer692 karma

Good luck man. Fight hard. You'll make it. Try and get some exercise whenever you can.

lilzaphod14 karma

You'll make it.

No, I won't. RCC stage 4 is a killer, and we all have to die sometime. Thanks for the well wishes though, I know you mean well.

Try and get some exercise whenever you can.

I have been trying to walk because I enjoy it. It's helping.

PussyDestr0yer698 karma

My dad had stage 4 cancer.

He had pancreatic, he was expected to live 3 weeks, 1 month at best. He lived for 8 months. His body couldn't take it and his kidney shut down, and that was because genetically his kidneys were weak.

My dad did mind over body. Yeah maybe you won't survive, but what if you're that 1%? You never know, and thats why you try.

lilzaphod10 karma

Understood and this is why I have not stopped treatment yet.

Easih1 karma

since you seem to know/be aware that stage 4 will most likely kill you(and fairly fast I might add) why go through chemo?I have seen the result of chemo+ end of illness people/family and its not a pretty sight so why prolong the suffering with chemo.

lilzaphod2 karma

Because at this point, it is slowing the progression and I'm not being knocked down major pegs yet for each procedure.

When the gain stops coming, then I will stop treatment. Before each procedure, I am doing a cost/benefit analysis with my circle of trust to make sure it is the right thing to do. I have family and my doctor involved who all have been told well in advance how I want to live, and how I want to die.

My Dr has several conversations written down where we discussed these things to make sure that it is documented.

I feel covered and so far, I feel at peace with my decisions.

LastFighter34 karma

In your current position how do you feel about assisted suicide? (Not wishing your death, I've always felt I couldn't handle half of the stuff you've described)

lilzaphod125 karma

I am actually a very strong proponent for assisted suicide and I get really angry when talking about the subject with people who disagree.

The example I use - I currently have 3 dogs and I have had two others in my life. One of my dogs developed lymphoma that progressed really quickly. She was old and was in pretty poor shape to begin with. We ended up putting her down because the course of treatment would have left her frail and her quality of life would have been poor if she even survived. We put her down to stop her suffering.

Now look at me - I have stage 4 renal cell. The average time of life for this disease is approximately 14 months. The tumors grow rapidly, they don't really respond well to either chemo or radiation. The whole goal is not remission, it's to slow down the progression of the disease. I already know that this is what is going to kill me.

Now compare the the two cases: I'm allowed to end the suffering of my pet, but if I try to get help ending my suffering, people will go to jail for a long time. How does this compute? Why is the life of my dog somehow worth more than my life when it comes to suffering? What do I have to gain by lingering on when it's very apparent that this is something that is a fatal disease?

I'm sorry, but while I respect people who are Christians, I have a real problem with them foisting their beliefs on me when it comes to the choices that I need to make for myself. I am not afraid to die; but I'm for damn certain that I'm afraid of suffering in agony waiting to die.

I'm even scared to talk to my doctor about it, not that he won't talk to me about the issues, but I'm afraid that I could somehow get him in 'ethical' trouble because Iowa is not a right to die state.

Thank you for bringing this issue up - I think that everyone who is anti- assisted suicide needs to think deeply on this issue because I believe that they are forcing many people who are of right mind into prolonging a needless time period of death and misery. I'm not asking them to die on a schedule, all I am asking for is the dignity to do so on mine.

  • edit - Thanks for Gold, kind sir/ma'am!

jacksaces17 karma

I am glad that you are taking a realistic approach to your dilemma and the options. I personally have been in a similar situation and made a decision as to what i will do if faced with going through it again, i'll just leave. Just remember that whatever the prognosis is, they have been proven wrong as many times as they have being right. Stay tough (hell, you've already proven you are) May the Swartz be with you.

lilzaphod16 karma

Thank you.

While I agree with you to a point, my prognosis has continued to degrade at a rate much faster than predicted. If I were playing stud poker, I keep drawing a 2 and a three card of different suits with each hand. I just can't seem to catch a break at this point.

ms_fits3 karma

If you know you're going to die, why even bother with chemo and treatment and all that? Refusing treatment is inself a form of suicide.

lilzaphod2 karma

This is from another response, but it fits here.

Because at this point, it is slowing the progression and I'm not being knocked down major pegs yet for each procedure. When the gain stops coming, then I will stop treatment. Before each procedure, I am doing a cost/benefit analysis with my circle of trust to make sure it is the right thing to do. I have family and my doctor involved who all have been told well in advance how I want to live, and how I want to die. My Dr has several conversations written down where we discussed these things to make sure that it is documented. I feel covered and so far, I feel at peace with my decisions.

CheddarSteeze6 karma

I actually did a report on assisted suicide for my high school senior paper and when i was giving my speak about it almost everyone looked at me like i was a disgusting SOB for trying to say that assisted suicide is a viable option for some people, when in all reality no body wants to suffer horribly until its the end of the line for them but its good to hear you are considering all options with an open mind. Stay strong OP and enjoy the time you have left man, i genuinely wish you the best.

lilzaphod7 karma

Thank you.


high school

is probably the worst way to judge anything. People still are forming their opinions and many do not have the life experience to rationalize these delicate decisions.

c0ugh4 karma

This had to be /r/bestof'd, you make an amazing point that really made me think about assisted suicide.

lilzaphod7 karma

Thank you. I hope it gives other people pause (on both sides) when they talk about this. Real people hang in the balance being decided upon by health people who aren't having to go through this life.

FWIW - I agree the same with Medical Marijuana.

MrsBeann2 karma

I hear you lilzaphod, I hear you. And can't agree with you more. I'm sorry you live in Iowa, that bl** sucks! For it isn't right..

lilzaphod10 karma

I moved back to Iowa after having lived in Los Angeles for 7 years. I have been to over 15 countries and traveled to over 40 of the 50 US states.

I must disagree with you - I like living in Iowa. It's a decent place to call home.

MrsBeann3 karma

that's good. I just meant with regards to the right to die laws

lilzaphod6 karma

Got it. Sorry for the misunderstanding.

bellamyback20 karma

Did you have any risk factors? (smoking, etc.)

lilzaphod34 karma

I'm a great big fat fuck that likes to eat. A lot. And a lot of good food that is rich in al the bad things like duck fat, butter, and cream.

Didn't smoke more than 30 total cigarettes in my life, didn't do hard drugs.

Basically, not a lot is known about RCC. Obesity is thought to be a factor, but not the primary one.

vervii7 karma

Any family history of cancer? (Any type)

lilzaphod6 karma

Grandpa had skin cancer from a lifetime of working on the farm. Dad had some prostate cancer.

Both were treated and went into full remission.

inthetealeaves18 karma

Has anyone among your friends and family said or done anything that you found wonderfully helpful as you've been undergoing all of this? Any advice for people trying to offer support to someone in this kind of situation?

I am so sorry for everything you've been through and wish you the very, very best of luck with your treatment

lilzaphod50 karma

Yes, I have had a lot of outpouring from my friends and family. So many, it's hard to write them all down.

My brother and I had talked to going to GenCon on and off for 30 years. We went for the first time this year, and even though I didn't have the money, he paid for most (95%) of it. My cousin who isn't a gamer, came and pushed me around a wheelchair, and played Pathfinder with me for 4 days. My uncle and another cousin picked me up from Indianapolis and drove me home so I didn't have to try and negotiate the airport (my brain is still a little fuzzy with some cognition and time) because my brother needed to fly home from Indianapolis direct.

My neighbors found out and started mowing my lawn. (i despise lawn work, and this was a huge help)

My brother and sister have both come from the coasts to see me twice (sister once, but is coming on Thursday).

My co-workers have sent me more flowers during the hospital than I know what to do with.

My employer has allowed me to work from home at will, and has not given me any issues around hospital trips or surgery. They also pay for my short and long term disability as part of my employment.

Friends have taken me to lunch, movies, and things like the farmer's market because I can't drive.

People send me random texts letting me know they are thinking about me - this really helps keep my spirits up.

My wife has been amazing during this whole thing. She takes me to my appointments, visits me in the hospital, and listens to what is in my head. She even didn't get pissed at me when I pushed to be discharged 3 days early from brain surgery because I was tired of living in the hospital and the steroids had me so hopped up that I was jumping out of my skin with energy.

I feel very lucky to have the friends and family I have who have been very selfless in helping me with this issues.

skittlesxo9 karma

What was your relationship with everyone before you got diagnosed?

lilzaphod12 karma

Define "everyone". That's a little big.

skittlesxo6 karma

I suppose mostly your siblings and the family who has helped you the most

lilzaphod7 karma

It's been pretty close, but we live far away. We take the time to talk more often, so that's been good. And I've seen them more often as well.

byark4 karma

After losing a very close friend in a similar situation all i can say is that your family and friends sound awesome. I wish you the least amount of pain and the most luck. Also i would love to say Go hawks.

lilzaphod4 karma

Thank you and GO HAWKS!

berfica3 karma

Hey! My 5 brothers just went to Gencon too! I wasn't able because of money, but they brought me back swag. Did you get a Catan sheep?

I'm so glad you have such a great support system. The work one especially is awesome/surprising. When my Mom got sick her job pretty immediately fired her. I wish you the best. I know it doesn't have a good prognosis, but.. I hope it changes.. Good luck with the brain radiation!!

lilzaphod6 karma

No, I only played Pathfinder and Dungeons and Dragons (5e). I'm an old school RPG guy and this is what I was dying to go for.

Thanks for the well wishes.

berfica3 karma

Ah, ya my brothers play Pathfinder, but I haven't yet started. (Never got to play DnD either when they played it >< Something about not wanting to play with their little sister. Though, I used to make character sheets for fun XD(this was a long time ago, they would let me play now))

lilzaphod4 karma

There are a lot of women RPG'ers now. I would say there was over 30 percent at GenCon in the Paizo hall playing Pathfinder.

It's not like the dirty old days of the 80's when it was taboo to see a woman playing DnD. Give it a shot, it's an awesome pastime.

YougotwhatIneeeeed2 karma

So sorry that you have to deal with this BS. High five your wife for all of us. You've given her praise for being strong for you, and I'd like to extend a little extra praise from us because she's going through a lot as well.

lilzaphod3 karma

Will do so. She really is amazing at keeping me running.

ugottabekiddinme15 karma

No question, just a short post to wish you all the best from a fellow young stage IV patient (different cancer).

lilzaphod14 karma

Thank you. I hope you find peace when it comes and you pass without pain.

freder85ico13 karma

I just wanted to say it sounds like you have a decent attitude towards the whole situation, understanding the severity of it etc. I have several questions:

1) I study cancer and it scares the crap out of me. Besides the sudden stoppage of urination, were there any other symptoms that if you look back on you may have overlooked??

2) Advanced stage cancer with metastases can be a real death sentence as you've mentioned. Do you believe in an afterlife? What's your mental status toward death?

I wish you the best of luck and highest quality of life during this extremely tough time. God be with you (I'm Christian, no not anywhere near fanatical, but I like saying it anyway)

lilzaphod16 karma

1a. My kidney was shutting down for at least 3-5 months. I was having pain in my lower back for a long time, but I brushed it off to riding my motorcycle so much (minimum 700 miles per week to work, not including any fun riding I did). I should have gone in and get it looked at.

1b. I was developing a gluten intolerance that came from nowhere and was progressing worse and worse. It got to the point that I couldn't eat a small piece of bread without getting stuffy and hacking up large amounts of bread. My Dr thought I was nuts until we went to dinner one night and I had a 2x by 2 inch piece of toast and started coughing up huge amounts of phlem after 20 minutes (still at the table with him). Thought it was celiac.

After the kidney was taken - allergy to gluten disappeared in about 3 days.

2a. I do not believe that it is possible to know about the afterlife until you get there. I believe that death is inevitable so the best thing you can do is live life as best as you can doing the things you love (for me it's motorcycling and scuba diving) I want to face death square in the face standing up. What I don't want to do is to be forced to my knees suffering at the very end; that's what scares me. Pain.

I wish you the best of luck and highest quality of life during this extremely tough time. God be with you

Thank you.

noahfencetaken10 karma

I've learned a lot in this thread and your honesty and bravery in facing your terminal illness is much admired. I realize your time is limited and want to thank you on behalf of hundreds or thousands of Redditors who will learn from this post. In part, it's a worthwhile legacy. We are all thinking of you and your family.

lilzaphod7 karma

Thank you.

smallbag10 karma

Kidney cancer survivor here. I was very lucky, diagnosed at 37 at an early stage. Since then I have often thought about what I would do if it returns, specifically in a much later stage. At times its been an all consuming thought. I wanted to tell you that I find your head on acceptance of the reality of the situation, and your honest analysis of your options inspiring and frankly inspirational. Your thoughts on assisted suicide are not only spot on, but the fears you acknowledge of the consequences of involving others has also plagued me. Thank you for sharing. Stay strong.

lilzaphod6 karma

Thank you, and good luck. I hope that some of the drugs they are working on today become the cure that helps you beat this fucking disease.

Yiib9 karma

Good luck.

lilzaphod9 karma

Thank you.

HeavensNevins8 karma

What's your prediction for the Iowa Hawkeyes this year?

lilzaphod21 karma

That's a tough one. We should be better than 4 wins from last year, but I think 7 will be a real stretch.

As an aside - I blame Greg Davis and his abysmal offense for my Renal Cancer. I've been a Hawkeye fan for over 35 years, and I can't think of a season that was more disappointing than last year. I have had season tickets for 14 years (seven years, moved away, moved back and 7 more). This is the first year that I have lived in Iowa City and not had season tickets. I'm in protest because I missed the Purdue game last year for the kidney removal, and couldn't go to the Black Friday game due to recovery. If they play as shitty as last year, Renal Cell isn't going to kill me, a heart attack will. I can't handle any more of GDGD's (god damn Greg Davis) 2 yard passes on third and 8 with 10 guys stacked in the box. I just can't take it.

dringess7 karma

LOL on the GDGD remark. All of us true Hawks are pulling for ya, big guy.

lilzaphod6 karma

Thank you.

HeavensNevins6 karma

Best of luck to you and for the Hawkeyes' recovery. Don't pull a Ferentz and punt from the opponents' 35 yard line. See you on HaLo.

lilzaphod9 karma


I won't punt from the 35, ever. That's just giving up and showing me that you are either scared or confused on which chance to take.

RCPMHawkeye5 karma

I just hope you're able to at least show up to a tailgate or two.

lilzaphod9 karma

If you know Brant, I'm planning on being at a few of his tailgates on Koser Ave.

I have some Jagerbombs to drink.

RCPMHawkeye6 karma

I know him. Intimately.

dringess6 karma

I won't ask HOW intimately.

OmahaVike5 karma

I'm not afraid. How intimately?

lilzaphod9 karma

Knowing brant, and suspecting this guy is from , I'm suspecting anally. NTTIATWWT.

KomraD19173 karma

I live in Davenport, if you need any more nerd friends. We have a small pathfinder group there. Just sayin'.

lilzaphod6 karma

Thanks. :) I live in Iowa City and can't drive right now. So unless you wanna do something like roll20, I'm going to have to say 'Thanks but not available".

vjarnot7 karma

So what's on the bucket list?

lilzaphod14 karma

I don't have a lot left on my bucketlist. I've done a lot of things I have always wanted to do.

I think the wife and I are going to go to New Orleans this winter (she's never been). I've been twice and I love it there.

Also - I think I want to be a guest on The Pretty Good Podcast and take the three hosts out to lunch after. I started listening to them when I started my current job in Rock Island. It's a 2 hour commute each day and they hve over 900 hours of content to listen to. They are really fun.

If you haven't heard of them: Start with episode 600 to give it a try, it's hysterical. Also, it's NSFW.

randywang224 karma

We would LOVE to have you on the PGP! send us an email with your info and lets set up a day :)

lilzaphod9 karma

Randy- holy shit, I am floored. Thank you so much for considering this. You don't know how happy this has made me after a really shitty week.

I'll drop you a line so you know who this is. If you go to Peepton, I'm the guy who 'owns' On The Wing BBQ, and I've given you guys a few presents along the way. (I'll not divulge some of yours here for your sanity). :)

I'm not sure yet when I will be coming out to LA. My brother lives in Redondo Beach (I lived there for a while as well), and need to set something up. Will be a while.

Thanks man. Thanks so much.

silentsiren756 karma

Heads up, I just sent them an email. fwd'd you a copy.

lilzaphod9 karma

you rock. :)

Bacon_Bitz3 karma

New Orleans for New Years is awesome! They do fireworks over the river, of course the whole town is celebrating. I did New York for New Years and it sucked in comparison. Plus - the Sugar Bowl! I hope you and your wife have the time of your lives <3

lilzaphod4 karma

Thank you. We did Amsterdam one year for new years. Wow. That town lights up like nothing I have seen. It was a zoo like no other.

I suspect a much lower crazy quotient this time around. Lots of good dinners and hopefully every day will start with a walk from the hotel to Cafe Du Monde. Love that place.

SiPee6 karma

Don't have a question - just want to say good luck with it all !

lilzaphod6 karma

Thank you.

iMrCrumbs6 karma

I have to say your attitude and positive spirit is inspiring to me at least. I think I would crumble as soon as I heard the word cancer. Your attitude is the reason you're going to pull through this. May your spiritual power, whom ever it is, hold and comfort you and your family.

lilzaphod19 karma

Your attitude is the reason you're going to pull through this.

Not to disagree, because I believe you mean well, but there's no pulling through this. Renal Cell in advanced stages is a killer, literally. I was diagnosed at stage 3 with micrometastases already predicted due to the areas of the kidney that was compromised. All I am trying to do is go out with the same life and potency that I have always had and with my head up.

Thank you for your well wishes.

theholloway6 karma

What was you're reaction when you found out about this? Did you're family react the same way? Also I'm really sorry to hear about your condition, wishing you the best of luck!

lilzaphod13 karma

I had a really nice response to this and I hit the back button by mistake and it got erased. grrrr.

What was you're reaction when you found out about this?

Not a whole lot. I found out after surgery for getting the blood clots taken out of my bladder that they knew what the problem was, so it was mainly relief that I could pee and that they knew what the problem was. I haven't gotten too down about it because I was the guy that always felt like I was going to die earlier than my peers and this is just the way it is going to go down for me.

Did you're family react the same way?

Kinda, but I sometimes think that they don't realize just how sick I am at times. Part of that is due to the way I'm dealing with things, and I don't always keep them in the loop as to the forward outlook on the things that are going on/could potentially go on. My wife is in the know 100% as she is with me at all my appointments, but my extended family lives a long ways away and it is exhausting keeping everyone who wants to know in the loop.

Also I'm really sorry to hear about your condition, wishing you the best of luck!

Thank you.

Juniperbeary6 karma

Just wanted to say good luck!! I'm from Iowa too! You sound like a great person!

lilzaphod3 karma

Thank you.

fordzy96 karma

Thank you for participating in research trials for cancer therapy - every patient makes a difference. How does it feel to think that you could be contributing to a cure for cancer but that you might not be around to benefit from that treatment yourself?

lilzaphod9 karma

Even though I was in a placebo instead of active medication, I feel like it was the right thing for me to do. There is no course of treatment for RCC stage 3 other than monitoring, so I feel like I was doing something. It was kind of self serving as well, and I won't deny it.

I have also been in 3 or 4 other studies. I like the fact that I'm able to give back to hopefully make cancer treatment for my disease better known and better understood. It truly is a motherfucker.

ohyah5 karma

you're in our thoughts, lilzaphod. thanks for doing this! it gives me some good perspective as i head out for the day. thanks for that.

lilzaphod7 karma

Welcome. Go be a better person today than you were yesterday. Or at least try.

shivors5 karma

Cast magic missile at it! We miss you at the office Chad...let us know if you need anything.

lilzaphod3 karma

Magic Missiles at it first for range attack! No way I want that fucker getting any closer!

Thanks as always for the well wishes. Miss you guys.

Building110-3rdFloor5 karma

At least six of us were following the thread almost real-time today in awe. Your time with us has been short but it's been something we'll never forget. The odds of you coming back are slim and it's difficult for us to come to an honesty with the situation. Realize this: you will definitely never be forgotten. You have made a lasting and positive impact on us all, as a comedic relief, a voice of reason and as a very special human being.

lilzaphod3 karma

Thank you. I have not given up the dream yet. I still believe that I will have G6 yelling at me for a while before I go.

You all have been some of the best people I have ever worked with, and I mean it. LTC Martin's legacy (i still believe deep down it is HIS team) is amazing and I'm just sad that we have had to watch it wither away after he left.

CoTripper5 karma

Reading through many of your comments it seems like you have come to accept your situation and, ultimatly your fate. Are you at peace with it or still struggling?

lilzaphod11 karma


Do I want to live more - for now, yes. I still have good quality of life and there are things I want to do (this was one of them).

I know my fate is coming; what I want other people to know is that theirs is as well (though not a quick). Take the time to experience new things and to learn as much as you can before it's too late. Live. Travel. Love.

migraineur4 karma

My step dad has RCC and will be taking sunitinib soon. Only 48 so this blindsided us. The most soul crushing thing was when my mom told me how remorseful he feels that he won't be there for my daughter who's due in November. I can't stop the tears when I think of this because I know how much guilt he must have. He's the last person in the world who deserves this and in his final moments he still thinks of others before himself.

I hope things work out for both of you. I'm still learning a lot. His RCC is papillary so I don't know how well treatment will be. Cancer fucking sucks

lilzaphod3 karma

Cancer fucking sucks

Could not say it better.

I'm sorry for what you are going through. I often say that those who love me have it worse than I do. I know what is going on with me while those who care are left wondering and left with the crumbs.

Maybe you can have him record a video for your girl (or several) so she can at least get to know him after the fact. Gently ask him if he would be willing, but understand that it might be too tough for him. Respect his wishes if that's what he decides is bet for hi,.

Good luck.

MLBinCLT4 karma


lilzaphod6 karma

When you beat this,

I do not believe this is going to happen. RCC Stage 4 has a projected life of 1.4 years. It's not a 'pretty cancer' in that it has a high survivability rate like breast or testicular cancer.

I know you mean well, but I think it's important to let people know what I am facing and that cancer is still a very dangerous disease for a lot of people.

prettysoitworks4 karma

Wanna come to Colorado and get your appetite back? :)

lilzaphod2 karma

Thanks. I may look you up if I cannot continue my work for the US Government, which looks down on it.

mkirklions4 karma

This might be a dumb question but how physically painful has all of this been?

Day to day pain? procedures? etc...

Do you get used to it?

lilzaphod18 karma

Having my bladder shut off was literally the most painful thing that has ever happened to me in my life. Hands down. Going through bladder spasms every 2 to 3 minutes for close to 8 hours where you feel like you have a combo huge piss/ejaculation happening only to be stopped from expressing urine is the worst thing that has happened to me, ever.

Everything after that has not been that bad. Brain surgery sucked because of losing some cognition and having words disappear from the end of your tongue (which is getting better), but that was more frustration than anything else.

I'm really tired of trudging into the hospital, even though people there are really nice (yeah, Iowa nice).

You get used to the new normal of dealing with the disease. It is the #1 thing on my life now outside of family and friends. You start thinking of things like "I better fucking live through the end of Breaking Bad or I'm going to be really fucking pissed". Those kind of things.

mkirklions2 karma

Thank you. I really wish you the best.

lilzaphod2 karma

Thank you.

iMrCrumbs4 karma

What has given you the strength to keep battling?

lilzaphod15 karma

Family and friends. My support network is really strong.

I initially thought that I would not ever do brain surgery (was told early on that it was a possibility). Then I got a disturbing call from my oncologist on a Monday night right after a CT scan asking if I was having blurred vision or headaches. He told me about the tumor and that I had two options - either surgery, or wait for the following: Seizures followed by Coma and then death. I talked with my wife, my sister, my brother, and my regular Dr and decided that this was the right course of action because I'm still relatively health (cancer not included) and that I could still have a good quality of life after I recovered from surgery.

t3rrapins3 karma

If cancer was a person you could fight, what weapon would you use?

lilzaphod7 karma

In the following order: an Earthbreaker (from Pathfinder, see /r/Pathfinder ), a Lucern Hammer (if ranged fighting), or a Fireball (ranged attack).

BoondockRapscallion3 karma

Can someone get this dude some weed. Seriously...

lilzaphod3 karma

Lol. I work for the US Government (for now). No weed (yet). Thanks for the thought.

[deleted]3 karma

Smoke a bowl. Seriously, you have nothing to lose. Take up medical marijuana. At least it will help with chemo.

"Smoke a bowl" was just a saying, you don't have to smoke it.

lilzaphod2 karma

Lol. I still am employed for a company that works for the US Government. I will not be able to partake while I still get my short and long term disability payments from those sources.

Thanks for the thought.

killian1933 karma

No questions, glad you have an outpouring of support. I am grateful you are sharing your story, it gives others the strength to continue. My Aunt has given up a fight with bone cancer, which showed 7 yrs after surviving breast cancer. I am hoping for a cure as most do.

lilzaphod4 karma

I understand where she is coming from. At some point, I will be your Aunt.

It is hard to describe, but I feel that I will probably will get to a point when I know it will be time.

Don't fault her even if you cannot understand her. This, even with a large support system like mine, is a walk you have to do alone.

Good luck, and I wish you and you're Aunt peace.

WhyHellYeah3 karma

Don't you think chemo should come before radiation?

Something about the blood-brain barrier being harder to cross after radiation damage.

That's what my friend went through at MGH: Surgery, Chemo, Radiation.

lilzaphod9 karma

Don't you think chemo should come before radiation?

  1. The Dr when he saw my larger tumor was surprised that I wasn't already having seizures before it was discovered in the CT. Putting it off for weeks of chemo would have guaranteed that it grew and I would have started having them.

  2. What few types of chemo that work on RCC isn't conducive to crossing the blood/brain barrier anyway, so it isn't a great option. I need to stop the tumor spread from growing or it's going to take over.

  3. I'm not a Dr, but the team that I am working with is in top 40 medical schools in the country for Cancer Research. I trust them and their guidance. I also back question their plans with my regular Dr, my sister who has a PHD in Nursing (along with three lower specialty degrees in nursing), my brother (who's the designated contrarian), and my wife (who is my ultimate proponent). I feel like I am covered very well to make these decisions.

wtfamidoingdammit2 karma

Don't you think his doctors probably know what they're doing?

lilzaphod6 karma

It is a fair question, and one that I would encourage anyone going through this to ask their Drs.

You cannot make good decisions without good input. Please (whoever did or is thinking about it) do not vote him down. I ask my Drs these kinds of questions all the time.

darkrock3 karma

Any kids?

lilzaphod9 karma

No. By choice.

Ross_is_Sauce2 karma

Idk if you're still answering, but I was wondering about this. Now that your life quite literally has a deadline, is this something you're happy about? So that you don't have to leave any offspring without a father? Or do you think that it might have been nice to have some little versions of you to carry on your genes?

lilzaphod3 karma

I am still answering. Been really busy day. :)

I am very happy with my desire to not procreate. I believe that only the people who truly want children and really want to dedicate their lives should have children, and then no more than two (with most stopping at one).

I know very few people who live like this, and that troubles me. Part of my issue was that I did not have a great upbringing (not horrible, but not great) and it was worse once my parents got divorced and my dad remarried. I have had nightmares for years about her, usually around times when they come to visit. I once had a nightmare so vivid that I ended up jumping out of bed and braking my wrist. Until very recently, I still had bad thoughts from my time living with her nearly every day.

About 4 months ago, I silently cut them out of my life. I haven't answered their phone calls, and I only talked to my dad face to face once when by brother kinda pushed me into it (he has since stopped). I do not have the energy to be angry and hurt anymore, and I need to focus on my well being. Once I made that choice, I have been at peace and I don't think about her nearly as often anymore.

No, I do not regret not having kids. I know I made the right decision for me there.

Cool_Story_Bra3 karma

One of my best friends father has cancer as well, it started in his kidney but spread to his lungs, lymph nodes, and more. It's most likely that he won't see next summer. What can we do to support my friend (going into her senior year of HS) and her family?

lilzaphod10 karma

Be with them as they go through it if they want you to. Leave them alone during the times they need alone time, but never "leave" them.

Send them love, and let them know you are there. They will let you know what they need, when they need it.

silentsiren755 karma

You could not have stated this more beautifully.

lilzaphod3 karma

Thank you. :)

bitflyt3 karma

Hey, thanks for doing this AMA!

You seem remarkably at peace with your situation, which is astonishing to me as a young man who struggles constantly with his own mortality. From where you're standing now, how do you maintain that, or how do you come to grips with that fear? I admire it, and I appreciate any response!

lilzaphod4 karma

From where you're standing now, how do you maintain that, or how do you come to grips with that fear?

I have believed for a long time that I would die young, based on the activities I have done like Scuba Diving and Motorcycling. I also eat very rich foods and don't exercise nearly enough (expected a heart attack around 60) So in some ways I expected something a lot more gruesome than disease.

I challenge you to not fear death as much as try to experience life in ways that push your limits (safely). Read books that you don't agree with. Visit with people who you wouldn't normally talk to to learn who they are and what makes them tick. Visit areas that are outside your norm (try not to go to war zones, they suck) to learn what life really is like for other people.

The more you get out and experience life, the more you will not fear death as much as cherish life.

Here's a place I've been - Work sent me to South Korea and for part of my free time, I took a trip to the DMZ. Was incredibly intense, but it is something that I remember and think about today.

Due to some dicknose questioning if I was lying about other things, here's a picture I took right at the DMZ.

I have three of these types of pictures across three continents (do not come close or take pictures). Another one is at Kink Khalid Military City in Saudi Arabia. The third, I will not say and I will plead the 5th.

Good luck. Stand tall and be who you want to be and do not let fear stop you.

living_4043 karma

Careful with that brain radiation treatment. My uncle recently passed away from brain cancer, and this was one of his treatments. What the doctors neglected to tell him or our family was that there was a strong risk of permanent brain damage. By the time he died, he had just enough of his mental faculties left to know how much he had lost, and to be able to sorely regret it. All I'm saying is that I really hope your doctors haven't held back any info of this sort.

I sincerely wish you the best of luck.

lilzaphod2 karma

I feel like i have been adequately warned about the risk. Thank you and sorry for your loss.

humanmichael3 karma

there seems to be a popular sentiment that your acceptance of your mortality is "unfortunate" or somehow less courageous than the concept of not going "gentle into that good night". that if you don't fight against this kicking and screaming that you are somehow less brave. i think the fact that you have accepted that you are going to die is very brave. i don't know that i could ever accept it. your courage in dealing with death is inspiring. it would be lovely if your fortune changed and you beat this, but i wish you a painless and peaceful end.

lilzaphod4 karma

i think the fact that you have accepted that you are going to die is very brave. i don't know that i could ever accept it. your courage in dealing with death is inspiring. it would be lovely if your fortune changed and you beat this, but i wish you a painless and peaceful end.

Thank you. I try and live in what I perceive in reality. I do not see a happy ending here so I have to make the best of the shittiest of hands I have been dealt.

blacklab2 karma

Been having some discomfort in my right nut lately. Been putting it off but going to the doc on thurs because of your post. Kick that cancers ass, dude.

lilzaphod3 karma


I hope you are able to laugh it off with a beer when the dr confirms you are a loon. If they do find something, early detection is key.

MrsBeann2 karma

zaphod? At this stage in your life, looking back, learning what you have learnt over the course of your life.. what could you say, about regret? If there are things you regret, what could you advise those staying behind, later on. What are we to look out for, in our path in life? Make sure we do, or don't do?

lilzaphod3 karma

I regret that I chose certain jobs over seeing places.

I worked for a company that works with the US Government, so I am restricted in certain places I can visit. I was also a part time scuba instructor. I had the opportunity to go to Cuba on a scientific visa, but I felt that I would damage my career if I went and would lose my clearance.

I opted against diving in one of the most pristine places in the Caribbean for a job. A job I could have replaced fairly easily at the time, and one that ended up fucking me over a couple of years later.

I would take that back given the opportunity.

I guess what I would say to answer your question is that you need to make sure you weigh your options closely and don't always do the "practical" choice where the other options might give you a better long term/long lasting experience. Balance is important; sometimes it's money, sometimes it's the experience. Be sure to have both when you can.

yanyanma2 karma


lilzaphod6 karma

Thank you.

Though if you run into someone like this again, at least express your feelings in email. You might be surprised what/how they will deal with it and might help you as well.

aleem_ullah2 karma

Please take some rest. We can do this some other time.

lilzaphod4 karma

I am going to leave in about 15 minutes for treatment.

This is actually good as it's keeping my mind off of yet another test at the hospital. Giving me something to do. :)

easyfeel2 karma


Amazing you didn't notice anything earlier. How come you weren't in pain with your kidney being eaten up? How long did it take them to discover the metastases?

Hope you beat the odds and get better :-)

lilzaphod5 karma

How come you weren't in pain with your kidney being eaten up?

I was riding my motorcycle between 700-1000 miles a week. At this age, you get tired from that much riding and you expect a certain level of constant pain. I should have gone to the Dr sooner.

How long did it take them to discover the metastases?

About 6 months after discovery through normal screening.

snarski2 karma

First, thank you very much for doing this and detailing your story.

Can I ask how the mental progression of accepting your situation went along inside your head? Were there any voices you used to convince yourself of one thing or another? Was there a particular moment of anger and fear, and how did you deal with that?

lilzaphod3 karma

Can I ask how the mental progression of accepting your situation went along inside your head?

I have mostly been accepting of what is going on and trying to make good judgements for how I want to go through this.

Was there a particular moment of anger and fear, and how did you deal with that?

These are not "not so mostly" times. Just today, I cried for my first radiation appointment because this is a "big deal" stepping stone into the next evolution of my disease. This has the potential to mean that I may not have enough energy to return to work ever again. I feel better now, but I am scared that I'm going to have to sell my house to downsize from where we live now to what we can afford on my wife's salary plus Social Security Disability if I cannot go back to work.

I deal with it as it comes and try to rationalize my fears and anger (which I have very little of) to the best of my ability because these activities do not help me in the long run. So I do not dwell. I cry when I need and them move on.

MrsBeann2 karma

hi there lilzaphod. I have a few questions for you

  1. where does your user name come from? Does it mean anything?

  2. Have you been or are you in pain? What do you get for pain? Does it work?

  3. Are you afraid a lot of the time? Or only sometimes/never?

  4. What's the most important thing, for you, that would you like for people to know about you? How would you like to be remembered, as a person? Really hard question, I know.. You may skip that, if you prefer..

lilzaphod3 karma

  1. My first dog we named Zaphod after Hitchhiker's Guide to the Galaxy. I took the moniker 'LilZaphod' from the small head on Zaphod from the movie because he was the crazy id brain. That fits my personality.

  2. My head hurts now, and has for the past week or so. Not sure if it's from the surgery, or from the ragweed that is plaguing Iowa right now. Its's probably both where the pressure is acting up on my scar.

  3. Some, but not a lot. It's mostly conditional when things happen - the first lung tumor that told me I had progressed to Stage 4, finding out I had brain tumors, yesterday when I found out I couldn't do targeted radiation, today at my first Radiation appointment.

  4. I was a better friend than most. That I was a fierce competitor to those who crossed me, yet able to accept people into my friend zone when fences were mended.

tacoz3cho2 karma

Do you feel as if this is something that needs more medical research into, as a priority?

lilzaphod5 karma

I think any cancer that doesn't have a high level of success for remission should be a priority.

I think things like 'livestrong' or "Komen Race' are basically a scam that only focus on "Awareness" and padding the money for people who run the foundations instead of focusing a majority of the money on actual research. "Awareness" to me means "Horay, people are dying" and I would rather that money goes to researching cures for the diseases that are not 'pretty' diseases with a high chance of remission and low levels of relapse.

I also know those statements will piss off a lot of people who have a vested interest in those charities and haven't looked at how much actual research vs "awareness" money gets distributed.

chomer002 karma

Best of luck to you!

lilzaphod5 karma


vtjohnhurt2 karma

Do you enjoy watching Breaking Bad or is it depressing as hell?

lilzaphod3 karma

I love that show. I have been telling people for month when AMC was dicking around with the schedule that I was going to be fucking pissed if I was going to die before the finished it.

Canukistani2 karma

Will you reincarnate or haunt your family? If you reincarnate, what would you like to come back as?

lilzaphod13 karma

Will not haunt.

I would like to be a dog and live with someone who's an owner like me. I'll be a spoiled little shit with a great life.

V3NDIX2 karma

I'm very sorry about your situation. How did you feel when you understood that this is going to kill you? How did your view on life change? Good luck, and stay positive.

lilzaphod6 karma

How did you feel when you understood that this is going to kill you?

It gave me focus. I remember asking my Dr about this early on, and he thought it probably was going to be the one. Of course, then he told me that Iowa didn't get rid of Greg Davis and that i should not rule out hear attack, either. (We are both Iowa Hawkeye football fans).

How did your view on life change?

To be honest, it really hasn't a whole lot. I want to be nicer to people in general, and that's about it. The rest has been that I want to stay who I am through out. I am mostly a decent person, and I like how I've lived my life thus far. I don't see myself changing a whole lot.

miscreantpossum4 karma

How did your wife react when she found out about the cancer?

lilzaphod3 karma

She is scared and she is standing by me as my support and sounding board.

I would not be doing as well without her. I am lucky to have her.

gyrfalcons2 karma

While you were undergoing chemotherapy, was there anything other people did during that time which you found particularly helpful? Or anything which you might've wanted someone else to do. I ask because some people I know have cancer, and besides reading up about it, I'm not sure what else I could do to be useful.

lilzaphod7 karma

While you were undergoing chemotherapy

I haven't had Chemo yet. I will start in 10 days.

I was in a chemo trial, but we found out when the tumor was found that I was on the placebo.

As far as things you can do - talk with them like people, don't talk to them like they have a "duh duh DUHHHH" Cancer (think 80's tv shows). Some people think of themselves as survivors, others like me reject that term as it feels loaded and somewhat self serving. ***

Try and do things with them that they like to do - read the same books and talk about it, go to movies, go to dinner, etc. Just spend what time with them that you can and gently ask if there is something you can do to make things a little better for them.

For me, the best thing is knowing that people care about what is going on and allowing me to fill my facebook (and HALO account) up with what is going on. It helps me keep my mind in order, and lets me know that people care about what is going on.

*** I am NOT making judgment calls on how other people feel about this - this is a something that is different for every person and neither I nor you have the right to determine that issue for anyone else

LongStories_net2 karma

What was the chemo trial? In something as important as chemo a study probably wouldn't have a placebo arm. They may have an SOC+Placebo or an SOC vs experimental arm, but they wouldn't have a straight placebo arm.

That's immoral and unscientific. So can you please link us to the description of the trial? I'm really curious.

LibraryGeek2 karma

Studies cannot deny standard of care treatment. However studies will have a placebo arm if there is no treatment to offer. Basically, your control arms have to received the standard of care. In some cases -- nothing is working so there is no standard of care. In those cases it would actually be a placebo.

lilzaphod3 karma

if there is no treatment to offer.

This is exactly right. For Renal Cell Carcinoma, there is no standard of care for Stage 3 patients through pharmacological use. The standard care is monitoring. I opted for the chemo trial (Everlimus) because getting something was potentially better than noting AND I would be getting more frequent monitoring than I would as not being a part of the trial.

When they found my lung nodule, I was going to be moved to a different trial (either known drug Sutent or new trial drug with a crazy control number) for stage 4 care as long as they didn't find bone or brain tumors. They did in the brain, so I was not able to be in a trial and we went directly to the standard of care for stage 4 which is removal (if feasible), radiation (if required in the brain), and chemo.

I was going to be on one pill (Sutent) but was that was taken away due to the bloodflow in my heart in a little low. The chemo they are going to use is called Voltrent as this is supposed to be better for my single kidney and potentially .

AGoodMan3242 karma

What are your top five movies??

lilzaphod2 karma

The Matrix

Red Dawn

Star Wars (orignals, but count as one)

Blade Runner

Buffy the Vampire Slayer (prefer the tv show, but love the original)

ProphylactionJackson2 karma

What are your thoughts on Greg Davis?

lilzaphod2 karma

He literally gave me Kidney Cancer.

If you do not believe me, go to and ask around there or read old threads. I blame him. I'll stop when he stops throwing for -2 yards on third and 8. Fucker.

OmahaVike2 karma

You've already highlighted completing your GenCon dream, but what else is in your bucket list?

lilzaphod7 karma

Probably selling you my Valkyrie. She really needs to go to a good home and I would like to think you'd enjoy her as much as I did.


That's actually a hard one. I've done most of the big things I've wanted to do. I would like to go to New Orleans with my wife this winter, and I would like to go to LA to see my favorite places to eat. Try to guest star on The Pretty Good Podcast and take the people there out to eat.

Some things like motorcycling to the tip of South America or Alaska are not going to happen now. I'll never get to dive in the waters of Palau again, etc. That's ok though, I have a lot of good memories of similar trips and those keep me company at night when I can't sleep.