... Unless it's about contact between myself and Disney. I'll answer "Disney reached out and we're discussing options".

A post of mine in r/marvelstudios evolved into a greater conversation about death and dying, and became the focus of a campaign for me to see Avengers Endgame before I die using the Avengers4Alexander hashtag. It worked - Disney have since contacted me.

I have Fanconi Anemia (FA) which interferes with my body's DNA repair. I've survived mouth cancer so far, but now face liver cancer and the threat of bone marrow failure. I get most of my nutrition through a PEG feeding tube because my mouth doesn't work well.

My sister died from the same disease but she was never diagnosed with FA while alive. I devote a lot of my time now to try and raise awareness about my disease by doing interviews, and help direct people to donate to research for a cure.

My hope is that at the least, people like my sister will get diagnosed before they undertake dangerous treatment, and at most that a cure will be created.

You can donate to the Fanconi Anemia Research Fund at www.fanconi.org/donate or to the Leukaemia Foundation at www.leukaemia.org.au/get-involved/make-a-donation/

Proof


Edit: Six hours later and I think I need a nap! Thank you all for your questions, and your interest. I'll come back later to try and answer anything I missed.

Comments: 2382 • Responses: 96  • Date: 

Davethe3rd5498 karma

If you watch the movie with Mark Ruffalo and Tom Holland, who would spoil the movie first?

alexander_q8809 karma

Holland. Easy question. I think Disney will show it to me long before they show it to him.

justscottaustin4859 karma

Is there a way I can test for liver compatibility and give you a lobe?

alexander_q4455 karma

The surgeon said a partial liver won't work, but I don't understand why. He also said they won't do transplants until I reach five-years without mouth cancer recurrence.

Thanks though!

Ayatollah_Bahloni829 karma

I don't have a question, so I'll have to just say here that your situation really sucks and I'm deeply impressed by the way you're dealing with it. I wish you the best, even though that sounds really corny given what you're facing. Blessings to you and your loved ones.

alexander_q533 karma

Hey thanks a lot

Fixtheglitchh102 karma

How the hell can you know if you’ll have a mouth cancer reoccurrence if you going to die in a couple months! Let’s get you a liver and fuck what the doctor says. We got 5 years to see If that happens! I got AML leukemia and I’m 28! I want to see end game too but we need you to get to phase 2. This can’t be your end game....

alexander_q264 karma

The reason is that the immunosuppression causes old cancers to return. So the chances of survival are so low, they'd rather give them to people who'll survive.

Arithered3583 karma

Do you find yourself anxious about maximizing every moment of your time, or do you find it easy to wake up and decide that you don't plan on doing anything that day?

alexander_q5095 karma

There's nothing better than lying in bed.

I was already living my best life before I got sick. I do have anxiety about my RPG campaign though. Being a GM is very taxing and I haven't been able to summon the strength to prepare the next session yet, and I want to do as much of that as I can before I die.

I've also been spending so much time on interviews that it's almost become like a day job for me. I feel like every interview is an opportunity to spread the donate link so I have anxiety about missing opportunities to do that.

Badyk2023 karma

Hey Alexander,

Have you maintained a bucket list at any point on your journey? If so, what have you ticked off? What is left to tick?

alexander_q2944 karma

Yeah I've got a list of games, movies and TV I want to live to see. I've got them in my calendar so I can see them coming up. They include:

  • Captain Marvel

  • Avengers: Endgame

  • Spider-Man: Far From Home

  • Game of Thrones Season 8

  • Stranger Things Season 3

  • The Expanse Season 4

  • Toe Jam and Earl

  • The 100 Season 6

  • Star Wars Episode IX

  • Subnautica Below Zero

Things I've ticked off:

  • Rimworld Multiplayer

  • Stardew Valley Multiplayer

  • A Game of Thrones the Boardgame: Mother of Dragons

Ser_Danksalot634 karma

The Expanse Season 4

Read the books. They're way past season 4. :p

alexander_q717 karma

I read the first one, and the show is much better - it gives information at a different pace and in a different order that I think improves it. Worst case scenario, I'll have someone read the books to me on my deathbed.

Ichoro550 karma

Gimme your steam and I can gift you Toejam and Earl

alexander_q538 karma

It hasn't been released yet, plus I already preordered it for Switch :-D. Also got the vinyl.

vic7mar61 karma

How was the Mother of Dragons expansion? Love the GoT game.

alexander_q133 karma

It was great. Playing Targaryen feels like playing Stark but you can actually be effective. Baratheon are the new Lannister unless they know what they're doing diplomatically.

I hit the Baratheons hard when a "no support orders" came up around turn three. Surrounded Dragonstone with my fleet and then my dragons returned home.

I got pretty lucky with loyalty token placement though, combined with an alliance with the Arryns. I used my influence to move them to the top of every track in return for loyalty access.

Martell was my biggest worry the whole game.

cluckingdodos9 karma

How is Stardew Valley Multiplayer??? I loved the original Stardew and playing it got me through the stress of 2nd year vet school. Thanks to my kitty, my MacBook suffered death by wine, so I haven’t gotten to check out multiplayer yet.

alexander_q14 karma

It's great. We play it most nights. It's especially good during long hospital stays when you're weak, you can just prop-up the tablet, relax your arms, disconnect the joy-cons and then all you need to move is your thumbs

AlrightJohnnyImSorry188 karma

And if you can't get to 'em all in time, I'll try and check one off for you afterwards.

alexander_q152 karma

Thanks mate

changerfett1579 karma

Who is your favorite superhero?

Have you gotten to meet any of the actors?

alexander_q2552 karma

I think it's one of the Guardians, but I haven't narrowed it down yet. Rocket, Starlord or Yondu I think. There's something about the combination of their heroism and their flaws, and the way they share their plain with others when it matters, that really speaks to me.

I haven't met any of the actors but my sister met Chris Hemsworth and I bumped into an amazing Thor impersonator this week.

https://imgur.com/gallery/pQplCGj

bootymage691098 karma

to me that looks like chris pratt impersonating thor

alexander_q62 karma

Hey, maybe it was

Burnstryk1465 karma

I read your first post when it was at its infancy and I was rooting for you to get to see Endgame.

I often have thought about you a lot since I saw that post because of your unwavering resolve and whole mindframe dealing with this.

I suppose my question is what have been the most beautiful moments in your life, the ones that made you think 'yep life is beautiful' if any?

alexander_q1536 karma

Sitting around a campfire, singing songs, drinking cider, with all your favourite people, somewhere in the middle of the scrub.

Warlizard769 karma

I'm so sorry for you. What's something about your experience that we all need to know?

alexander_q1982 karma

Ask for help. Research what help there is. At least in Australia, there are so many programs and organisations to make sickness and death easier.

My palliative care team in particular have been amazing. I tell everyone about them, but despite my good reviews, no one has yet chosen to get terminal cancer!

Also, there is medicine for everything. If you can't handle the pain, the terror, the sleep deprivation, there's medicine for you. This is probably easy for me to say now - maybe it'll get to the point where these medicines are no longer effective. But at least for now they've been a godsend.

Warlizard511 karma

Thanks. I hope your journey is peaceful.

alexander_q356 karma

Thank you

FartingWhooper47 karma

As a palliative care nurse, it makes me really happy your team has been effective for you. Good luck, my friend!

alexander_q20 karma

They're the best. It must be a hard job. I used to be a disability support worker but there was no expectation that my clients would die on me

Davethe3rd755 karma

Would you be willing to write a review of the movie to be released after the movie comes out?

I want to know if you liked it and what you thought of it, but I completely understand that you're anti-spoiler.

Maybe you could get in touch with a mod or something.

Also, I don't know what to say, but I'm hoping for a miracle and you don't die, but if you do, Rest In Peace, my friend. Fuck Cancer.

(It is weird as fuck and more than a little disturbing/sad to be able to say "Rest In Peace" to someone that's still alive.)

alexander_q908 karma

Yeah if I'm allowed I'll write a review to be released posthumously for sure.

YODELING_PROLAPSE331 karma

Just chiming in that I would also be interested to read your thoughts on the movie. And if there is an afterlife I’ll buy you a beer when I get there. Or whatever the equivalent of beer is in the afterlife.

alexander_q508 karma

I guarantee it's Moscow Mules in copper mugs

King-Boss-Bob712 karma

I know a lot of people were saying that you were going to leak the plot of avengers 4.

What is your response to that?

To clarify I don’t think you will. Sorry if it seems like I am

alexander_q1647 karma

I'm very spoiler averse. I was playing Sentinels of the Multiverse yesterday with good friends and one of them wanted to put on the Incredibles 2 soundtrack. I overruled them lest the musical score somehow spoil parts of the movie.

I'm very careful not to give even hints of a spoiler. Things like "you'll be surprised" are a spoiler. Things like "I liked it" are a spoiler if you know what my tastes are.

So for Endgame, you won't even get a thumbs up or down (unless Disney contractually obligates me to do so!)

thecombatraptor197 karma

Sentinels of the Multiverse is awesome! Who is your favorite hero?

alexander_q199 karma

We only played the one game before I ran out of stamina. I was a robot - Omnitron maybe? And we fought a Baron who wanted to thrown the moon at the Earth. I don't often play cooperative boardgames so it was a lot of fun.

MaryKiegler574 karma

What are your thoughts on the afterlife? Do you believe in one? Have you given it much thought?

Much love. ❤️

alexander_q1872 karma

I've never believed in one. I did have some religious tendencies when I was a teenager but an afterlife was never part of that.

I get some comfort from imagining that from a certain perspective, the universe just IS. So I will always have existed, and someone looking at the universe from outside of time can point and say "there's Alexander's entire life".

I'm experiencing things linearly, but that's just a consequence of how brains work.

suckbothmydicks503 karma

So I will always have existed, and someone looking at the universe from outside of time can point and say "there's Alexander's entire life".

I know you have limited time, but Kurt Vonnegut's Slaughterhouse five is a wonderful novel about a lot of things, including that. I recommend it.

alexander_q434 karma

Wow! Maybe that's where I got it from. The Tralfamadorians see time this way, right?

ostermei699 karma

I've told my wife that if I go before she does, I want this passage from Slaughterhouse Five read at my funeral:

"The most important thing I learned on Tralfamadore was that when a person dies he only appears to die. He is still very much alive in the past, so it is very silly for people to cry at his funeral. All moments, past, present and future, always have existed, always will exist. The Tralfamadorians can look at all the different moments just that way we can look at a stretch of the Rocky Mountains, for instance. They can see how permanent all the moments are, and they can look at any moment that interests them. It is just an illusion we have here on Earth that one moment follows another one, like beads on a string, and that once a moment is gone it is gone forever.

"When a Tralfamadorian sees a corpse, all he thinks is that the dead person is in a bad condition in that particular moment, but that the same person is just fine in plenty of other moments. Now, when I myself hear that somebody is dead, I simply shrug and say what the Tralfamadorians say about dead people, which is 'so it goes.'"

alexander_q243 karma

Yeah I want this at mine.

lectroid69 karma

The movie Arrival, and "The Story of Your Life", the short story it's based on, explore similar themes as Slaughthouse Five. You might enjoy them.

alexander_q72 karma

I thoroughly enjoyed both of those, and every other short story by Ted Chiang. The ones with the golems, the angels, and the woman who accidentally unlearns "number" have also stuck with me.

Itisforsexy89 karma

A more comforting thought, derived entirely from logic, is as follows.

Before you were born, you didn't exist. Then, you were born, and existed. Thus, if you return to a state of non-existence after death, it stands to reason that you could return into existence again, because the fact you're alive now is proof that it has already happened.

It's a disconnected form of logical reincarnation. No memories of past lives or anything, but you definitely can return, and if the universe has no time limit, and within the void of non-existence time doesn't exist, the moment of your death to the moment of your rebirth will, by your own perception, be instantaneous.

Just hope you respawn to a wealthy family.

alexander_q65 karma

I don't buy it. If it did occur it would be another being, and not me. I'd still experience death. It's like the Prestige.

uglychodemuffin2 karma

I always wondered if I’d be more prone to believe in the afterlife if I was terminally ill. I find it courageous that you maintain your beliefs in a logical and rational manner.

alexander_q14 karma

It doesn't feel like a choice I have. My mind is what it is. It functions like it functions. I don't foresee how religiosity could worm its way in there. I tell this to all the Mormons who have ever come knocking, but I invite them in anyway and we have a good chat.

I am starting to think about cryogenics which is probably pretty irrational, so maybe that's my version.

You-and-whose-Army531 karma

Can I pray for you OP?

alexander_q491 karma

Of course! Please do. Thank you

GappoGappo500 karma

My step mom has the same disease. You're honestly the only other person I know who even knows what it is. They are trying all sorts of Hail Mary's, bone Marrow transplant and the like. Have you found any treatments that have had marginal improvements?

alexander_q424 karma

How old is she? Has she had the transplant yet? What else are they trying?

They've been pretty focused on the liver because that's moving fast. They think SIRTEX will be better for me than TACE.

Bone marrow-wise, they tried GCSF but it had no effect.

hochizo165 karma

I donated bone marrow to a 16 year old kid with FA back in 2013. They were pretty tight-lipped about him, so I never really got a good explanation about how a transplant would help him. Since it's an AMA... do you have any insight you could share about this? How does bone marrow help with FA?

Also, we nearly did the transplant for him back in 2009 (did all the extra testing and everything), and then they decided not to do it. They obviously changed their minds after a few years, but I never understood why the start-and-stop. The BeTheMatch people all remarked on how unusual that timeline was. So...is FA something that can flare up and then go into remission?

alexander_q139 karma

FA inevitably leads to bone marrow failure. Having a transplant can stave off this part of the disease, often for a long time. In my understanding it doesn't help with the cancer part though. It could be that this guy had enough cancer that a bone marrow transplant became futile, as the cancer would kill him.

zaskfield372 karma

If you could talk to your younger self what would you say?

alexander_q1433 karma

I wouldn't tell him he was gonna be dead at 33. I think I'd say:

  • Be kinder to people who deserve it

  • Don't suffer people who don't deserve it

  • Good sleep is the foundation of a good life. Start there.

  • Don't get a credit card

evil_leaper176 karma

I'd completely agree normally, but I think if I were you I'd be forgoing that last rule now. Until the end I wish you all the happiness you can get, my friend.

alexander_q206 karma

I have a friend in a similar situation who has definitely forgone the last rule!

KnightofBats501362 karma

Who's your favorite Avenger? What does it mean to you to be able to see the movie as one of your last big events in your life?

alexander_q864 karma

Do we get to consider Ant-Man to be an Avenger yet? If so, then he's my choice. He often seems inconvenienced by being a hero but does it anyway. Either that or he's excited and seems to enjoy the ride. I also like that his movies explore his role as a father. It's one of the ways that Marvel storytelling is evolving and taking risks.

If Ant-Man doesn't qualify, then Thor. He's hilarious, forgiving, naive. He's lost so much and just keeps going.

For me the movie was one thing among many that I might miss out on. Endgame is significant in that it's the end of a chapter of a very long, very fun story, well told. I know the MCU will go on but I feel like this will be closure I can live with (die with).

Generic_Reddit-Guy334 karma

How old were you when you found out about your disease and what was your reaction?

alexander_q800 karma

33, if you mean FA. September last year. My reaction was relief - it explained all of my illnesses throughout my life.

Since then, it's turned to gradually increasing mortal terror. There's no way out of this one. Cancer can sometimes be beaten. This can't be.

Generic_Reddit-Guy361 karma

Man... I dont know how to responed to that, im sorry, cancer is a bitch. I wish you the best and hope you get to do everything you want in the time you have left.

alexander_q517 karma

Thanks Generic_Reddit-Guy

madding247324 karma

Did/are you at at calm with everything just "being"?

alexander_q586 karma

Most of the time. Depends on how sick I am. I assume every unwelcome bodily sensation is new cancer or internal bleeding. I panic if someone sneezes near me. But outside of that, when there are no particular symptoms flaring up, I'm pretty chill.

I was pretty anxious about this AMA so I took 0.5mg alprazolam.

TallCanadiano204 karma

Why were you anxious? You’re killing it.

alexander_q396 karma

I dunno. This is the first publicity I generated myself - doing an AMA. Felt a bit vain and expected more people to call me out on it

throwaway200014262 karma

If you don’t mind me asking, how much time do you have left, and do you have enough to do a few things on your bucket list?

alexander_q512 karma

It's hard to be sure. On the 16th they decided to start a new kind of treatment called SIRTEX. I haven't had it yet but it'll be soon. Median life extension for that is 10 months which gets me to a lot of things, including my girlfriend's and my birthdays.

It's a fairly new treatment and I've got a lot of co-morbidities that make it hard to say how long I've got left. There are a lot of things that could kill me quickly before my liver gives out, like a bad infection, or the treatment going wrong.

throwaway200014148 karma

I see. Can’t you get a liver transplant?

alexander_q269 karma

No, transplants require immunosuppression and I'm still in danger of mouth cancer recurrence, plus every other cancer because of Fanconi Anemia.

366777219 karma

What was your life like before you found out you were sick?

alexander_q600 karma

Great.

I was working as a financial counsellor for an NGO and loved my job. I miss it. My bosses and coworkers were all and all remain great human beings. We helped people every day. I loved it so much that I worked hard after mouth cancer to recover and return to work, food-tube and all. I was there about six months before liver cancer came along.

We had a great social life - semi regular tabletop RPG sessions, barbecues, movie nights.

We were active and had just gotten into cycling. We'd both just started riding to work.

We traveled a couple of time per year and were planning what was next.

I was looking forward to more of the same.

There's a lot of things above that are still possible, but I have less and less stamina every day.

stealthw0lf165 karma

You’re a similar age to me and the thought of dying young without leaving anything behind worries me. Do you feel the need to leave anything behind in terms of legacy? Something more than what will be remembered by your current generation of family? Or do you feel at peace with what you’ve done with your time here?

alexander_q373 karma

I'm relieved I didn't have children. This would be a thousand times harder.

I hope part of my legacy will be my RPG campaign. I've been encouraging guest GMs and trying to codify all the lessons I've learned acting as GM since high school. I've also mapped out the rest of my planned campaign for them in case I die before it reaches the conclusion. I hope they'll continue playing long after I'm gone.

I don't feel any particular anxiety about legacy. My sister had a girl before she died, and I feel like she will be the continuation of my family.

bloggsy134 karma

It seems like this would align with your philosophy so I wanted to share. In his book about death anxiety 'staring at the sun' the psychotherapist Irvin Yalom talks about rippling - the effect we have in others being like ripples in water, passing something you have done or said from one person to another gently over time. In this way your influence continues long past your death, as a person you knew will then pass your 'ripples' onto another person and so on. I am sure you will have passed on many ripples.

alexander_q212 karma

I hope I did a cannonball in the deep end

Jughead0311153 karma

Are you interested at all in the after life?

alexander_q261 karma

I've been thinking a lot about cryogenics lately

366777138 karma

are you considering freezing yourself until they find a cure for you?

alexander_q395 karma

Well yeah. I don't want to stop existing.

beauxartes150 karma

Can we get a picture of your dog?

Starsparkstuff140 karma

Congrats on your bucket list success, that bunch had better have their A+ game on for your viewing pleasure ;)

What are your top 3 overall ‘life moments’ so far?

alexander_q231 karma

I'll have to think about this one for a while. One I think was riding my scooter around town one Christmas with my girlfriend pillion passenger on the back looking at Christmas lights.

Another was the time my sister came to visit my town and came to watch me perform at an open mic. I did Sympathy for the Devil with a full band and it was awesome.

JCHammer5138 karma

How many months of reddit premium do you have due to all the awards on the post?

alexander_q131 karma

I have no idea. Can you count it for me? What does Reddit Premium do?

JCHammer599 karma

Reddit premium is just no ads and you get reddit coins to spend. I think you have 113 weeks of premium unless there's some sort of cap.

alexander_q73 karma

What can I do with coins?

JCHammer548 karma

Award other people

alexander_q54 karma

How do I do that? Particularly in Relay?

DankMoth137 karma

What’s your favorite kind of ice cream?

alexander_q224 karma

I've got a chocolate fixation at the moment. But before that vanilla with chunks of mango.

baymax18118 karma

Whatbare you most excited about to see in the movie?

Also, all the best man. Can't imagine what it's like going through what you are but I'm sincerely happy for you ☝🏽

alexander_q183 karma

Time travel. I'm also very anxious about it - how many times has time travel been done well in any medium?

Ser_Danksalot86 karma

3 films you need to see if you're at all interested in time travel sci fi.

  • Frequency
  • 12 Monkeys
  • Primer

Put those on your list of movies to watch.

alexander_q32 karma

Three steps ahead of you. I've watched Primer so many times.

kirkjohn1111116 karma

Hey alex. Glad to make your acquaintance. I feel like a total dick but id like your opinion. Im 45. Big fella, 285lbs. Awesome wife, awesome life, healthy so far. Make good money, few toys in the driveway, savings account, couple dogs, great step kids, self employed...basically i have the situation many would be jealous of. Heres where i need advice. Im not happy at all. Depressed alot, no luster, pretty negative outlook for the most part. Job pays good but burns me out, Ive made a gratitude list. So many wonderful things to be super happy about, so many opportunities ive taken hold of but still feel sad and alone. I know there will be a time soon when i wished i had done something different or made life changes. I could be hit by a bus tomorrow. Who knows when the end will come for any of us. What do i need to know to make changes? What do you wish you had done? Is life about saying to hell with it and doing what makes us happy? Or is it a balance of that and supporting ourselves and family?

alexander_q312 karma

With all the the things you've mentioned (Good money, healthy savings, toys in the driveway) my first thought is that you can afford to work less. This would give you time to enjoy the things you have and think about what really makes you happy. This is especially important if you feel burned out by your job.

If you're self-employed, you control this. Every time you take on a job you're making a choice about how you want to spend your time.

Even before I got sick, I worked only 15 hours/week. I made my lifestyle fit within my finances. I could live efficiently because some of that bonus time could be used looking for deals or doing proper budgeting.

You have to support your family. But that isn't just money. It's time spent together. It's a balance, as you say.

I'd recommend finding someone who can help you analyse your spending to see how much you really need to earn, where you could make good savings, and you can have this knowledge in mind when you decide about how much you will work.

TheDrizzle54105 karma

If your not able to see the movie would you mind meeting one of the actors? And if so who and why?

alexander_q221 karma

I think I'd be flattered if one offered to visit but I would feel a bit like I was wasting their time. Plus I don't know much about them as human beings or if we have any interests in common.

swearpanda100 karma

If you had to pick an MCU star to watch Endgame with you, who would you choose and why?

alexander_q198 karma

Rocket Raccoon. Not Bradley Cooper.

Rocket Raccoon. He seems pretty forthcoming with his opinions, I think we'd have good discussions afterwards.

swearpanda67 karma

What if he brings Teen Groot with him? Would be okay with that? Because that Teen Groot, man. What a downer.

alexander_q113 karma

Groot's not available :-(

LandoChronus88 karma

How does it end?

alexander_q391 karma

I die. Hopefully with my loved ones, including my greyhound nearby, and hopefully at home. I've been very insistent that the greyhound gets to see my corpse so he has some understanding that I didn't leave him by choice.

Tishimself77134 karma

Wow. Now you have made a grown man cry. Fuck Cancer! So sorry that this is happening. Are you in pain?

alexander_q115 karma

None at the moment. After each TACE treatment I have terrible pain for about a week, then I recover from that and don't seem to have any pain for several weeks. Then it slowly creeps back, usually as a dull ache and occasional sharp stabbing pains. I've also been getting headaches and abdominal pain, probably as a side-effect of medicine, but it's not constant, and easily controlled with medicine if necessary.

coh_phd_who84 karma

If you could grab one infinity stone from Thanos and had time to do one thing with it before he caught up with you, which one and what would you do?

alexander_q189 karma

Time Stone > Cure for all disease from the future.

Or maybe Reality Stone > There is no disease anymore

Aliciasuxxx79 karma

I noticed you said your sister passed from something similar- did your parents have any genetic testing done when they had y’all? Do they have any history of the genetic disease?

alexander_q187 karma

None. It seems they were both carriers. They also gave me heterozygous Alpha-1 Antitrypsin Deficiency.

Worst marriage in history?

UniqueName3974 karma

Apart from the unverified methods, and the SIRTEX treatment, has this publicity caused any reputable parties to offer experimental treatments?

alexander_q160 karma

Yeah someone did offer a suggestion alongside a study. I've added it to my list to bring up with my doctors. I've also had some disreputable ones. Check this out.

PettyLikeTom73 karma

Do you hope they make a movie out of this just like they did for fanboys when episode one of star wars came out?

alexander_q212 karma

I don't think a movie about a dude lying in bed all day on Reddit would get much traction :-P

hannahgrace769 karma

Looking back on your life since receiving your diagnosis, what medical issues/symptoms had you previously experienced that now make sense in terms of your diagnosis? I’ve never heard of FA before and am interested in understanding more!

alexander_q64 karma

Pancytopaenia, being tired all of the time, frequent and more severe infections

Simon_Siberian_Husky45 karma

Hey man, good luck. I really hope you can pull through somehow. But even if you don't, I admire your bravery in the face of your disease. Bravo, my friend.

How was your day?

alexander_q59 karma

Pretty chill. Only just got out of bed (3.30pm here). Had a nurse come and take blood, took the greyhound around the block, and now I'm eating the slowest bowl of Milo cereal in history. Besides that just been answering these questions.

cpa_brah43 karma

Just wanted to say I'm sorry you're going through this. I'm 33 as well, my close coworker's wife was just diagnosed with breast cancer at 29, it's bullshit how unfair the world can be.

I don't have a question? my day just fucking sucked (got trapped in a pitch black elevator this morning for an hour, transmission broke in my car which will be $4000, and i've been living in a hotel away from family for 4 straight months). I don't mean this in a cheesy "youre an inspiration" way, your situation is a reminder to take in the moments, chill the fuck out, and enjoy the ride.

Also rimworld multiplayer is awesome, ive been playing Zetrith's mod with some friends and it has definitely been worth the long wait! Is that what you have been playing? Good luck with the marvel thing, i hope it works out for you.

alexander_q30 karma

Man that sucks. Have you got a plan for putting shit back together again?

Yeah that's the mod. It's just so stable! I'm on the discord always checking for updated mod compatibility notes. I need WorkTabs bad.

Ickdizzle42 karma

Have you read anything about people in palliative care being administered pscilocybin or other psychedelics to help with end of life anxiety?

What are you thoughts on this? And, have you considered doing such a thing yourself? Or have you already come to terms with your situation?

alexander_q72 karma

Absolutely, and I'm very interested in trying it. But I'm scared to do it outside of a clinical context - don't want to have a bad time or mess up the dose. If there was somewhere in Australia doing it in a medical context I'd follow that lead for sure.

jmoda40 karma

Have you considered recreational drugs?

alexander_q100 karma

For sure. But I'm too worried about having a really bad time. I don't want my mortal terror to take on physical form and say "hi".

newman194435 karma

You a game of thrones fan? If so you excited for the final season?

alexander_q64 karma

Excited, but scared I won't make it. Got no books to fall back on either.

BATIRONSHARK35 karma

So like I hope this doesn’t sound horribly insensitive but like how was the process of talking to Disney?

Like the technical details and stuff?

alexander_q80 karma

"Disney have reached out and we're discussing options"

MasonKowabunga33 karma

Since you most likely don't have too much to do, what are things you've always wondered about in life? Your aspirations? Things you would have wanted to do if you would've grown old? I know it's nice to be preoccupied in the situation you're in. Keep your thoughts off of things. I've been in and out of the hospital for chronic autoimmune disorders since I was 9 or so, I know how boring it can be:)

alexander_q79 karma

I'd have liked to see what comes next in our exploration of space and physics. I would probably have traveled more. Would have gotten into performing music more seriously.

cizzlewizzle31 karma

People often underestimate just how big Australia is. Have you seen all you wanted or are there some places you'd want to visit?

alexander_q48 karma

I've been just about everywhere that's habitable in Australia except for Darwin. I didn't get to see much of Sydney while I was there either. I just got woken up with "we're in Sydney, it's your turn to drive".

Ahugewineo26 karma

I lost my mom and sister to cancer. Neither really religious and neither am I. More agnostic I guess. I always thought they would send a sign if there was an afterlife and this haven’t happened. Have you talked about doing this with your loved ones?

alexander_q46 karma

Sorry about your mom and sister :-(

I think everyone talks about this but nothing ever comes back. They must be too busy having fun and preparing for the rest of us

kristopian24 karma

Can you tell us more about your RPG game? Interesting stories, story, etc.

alexander_q61 karma

One time the group were being pursued through space by an evil corporate nation who were trying to cover up a massacre on a nearby mining station. The pursuers ship was faster and better equipped, and easily crippled them, but the players made their comms work by rerouting power from elsewhere.

They advised the pursuers that they had video evidence of the massacre and would broadcast it to the nearest drivesat which would transmit the signal throughout the sector, unless they could agree to parlay.

The pursuers pulled up alongside the players now-derelict (and quickly losing oxygen and heat) ship and extended a boarding bridge. They cut into the player hull enough to have a conversation through a small hole.

The pursuers proposed a proper conversation between both crews, using the boarding bridge as a neutral territory, to determine how to resolve the stalemate. They had one condition - the Weren player (think space Orc) had to be rendered unconscious first. They didn't want him bursting onto their ship and tearing them to pieces. The pursuers would provide the necessary drugs to knock out the Weren and watch the players administer it through the hole in the hull. Then they'd cut open a doorway to let the players onto the boarding bridge.

The players agreed, but they made a plan. The medic gathered a stimulant syringe from his med pack while the enemy crew were preparing things at their end. He put the syringe very delicately in the Weren's mouth, but didn't inject.

The T'sa character (small reptile ninja) camouflaged himself and hid in the Weren's fur with two blades.

When the enemies returned, the medic administered the anaesthetic to the Weren as agreed. He also demanded to accompany the Weren in case they had given him poison rather than anaesthetic.

The enemies cut through the hull. There were four of them. They presented a gurney and helped the players load the Weren onto it. They pushed the gurney onto the ship and the medic followed. One enemy remained on the bridge (the commander) where he had prepared a table and two chairs. The player's captain (my girlfriend, a Mechalus android) stayed on the bridge with the ship's gun-guy player (human) as security.

Well... Once they were across the bridge, the T'sa leapt out of the Weren's fur and kicked him in the jaw, injecting the stimulant and waking him up quick-smart. He proceeded to tear two of the enemies apart, the T'sa passed one of their rifles to the medic who threatened the third enemy (the enemy ship's doctor) and also threw another rifle to the gun-guy, who proceeded to blow the enemy commander's head off.

The players had a new ship, and a hostage.

Pinkmongoose20 karma

I'm so glad you get to see the movie! I wanted to wish you luck and plug what a great organization The Fanconi Anemia Fund is! Their research is helping advance treatments for many conditions, particularly cancers, not just FA. I lost my dear friend to FA/AML a couple of years ago.

How old was your sister when she died? It seems unusual (and unfortunate) that they didn't learn about the FA earlier. And how old were you when you were diagnosed?

May I add a recommendation that people sign up to become a bone marrow donor?- One of the easiest ways to save a life! www.BeTheMatch.org

Good luck with your treatments!

alexander_q43 karma

She was 32. I was 33, and still am. She's my older sister but I'm older now than she ever got to be.

SuaveWarlock17 karma

Will you spoil the ending as a last laugh? I mean..whats the worst that'll happen? They won't kill you for it.

alexander_q62 karma

Nah. That's mean.

BugByte1414 karma

Do you enjoy memes? If so what was your favorite Infinity War meme?

JNurple10 karma

How do you feel about the ethics of embryonic gene editing?

alexander_q30 karma

Do it. Eradicate disease. Regulate it well.

snwbrdrmidget156 karma

How’s it feel starting your own make a wish foundation but for yourself?

alexander_q36 karma

I didn't start anything. I have Reddit to thank for making this happen for me. The experience has been surreal, and I hope I can use it to raise awareness and donations for others with my disease.

jungletigress5 karma

Will you tell us what you think of the movie after you see it?

alexander_q29 karma

I'd love to talk about it in great length after the premiere, if I'm still around. If not, I'll leave a review to be released posthumously maybe. Disney can keep it in a safe deposit box.

2MuchOfThatSnowWhite5 karma

How does it end?

alexander_q30 karma

I die.

Reeberton3 karma

Wouldn't a NDA be pointless for you to sign?

alexander_q17 karma

I'm not sure. I imagine they could sue my estate. I'm leaving things for my niece and my girlfriend that I wouldn't want them to be deprived of, so that's easily enough motivation for me not to spoil a film, besides the existing motivation of not wanting to be an arsehole.

AnxiousSun2 karma

Do you have a significant other or children?

alexander_q8 karma

No children, just me, my girlfriend and our greyhound. I do have a niece though.

pr9i11 karma

Have you tried any alternate meds?

alexander_q21 karma

No. I've been suggested a few, but when I asked that those suggestions be accompanied by peer-reviewed studies, the suggestions stopped coming.

I use the analogy "if you're suggesting a medicine for which there is no evidence, I might as well chew on a pinecone as it's just as likely to be helpful".

People also tend to forget that I can hardly eat so suggesting certain diets to me isn't actionable.

notafraid1989-1 karma

[deleted]

nutbastard2 karma

You’re not dying and that’s your response to someone who is?

alexander_q1 karma

What did I miss?

ObamaBigBlackCaucus-2 karma

if two guys are sucking the same dick and their lips accidentally touch, is that gay?

alexander_q15 karma

Did balls touch, and are the lights on?