Stage 4 Melanoma Science Project Advocate ♥ Content Engineer 🤖🖋 Hooper 🏀 Runner🏃🏻♂️ 🎦Vlogs: https://teapawt.net/t.co/6ECbJdedFY
San Luis Obispo
Joined January 2022
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Dearly Diagnosed:
Hey.
Cancer, huh?
That sucks. There are a lot of slogans, platitudes, and phrases you’ll hear. Some of them will resonate with you more than others. After 6 years of dealing with the disease, the one I will reiterate is that cancer just sucks.
And it’s weird!
Depending on where you are in this process, it might not feel real. You’re probably scared, or confused. You’re almost certainly in shock. You may be optimistic, or defiant, or you might be chilling and waiting for more information. All of these feelings are valid – don’t let anyone else tell you how a cancer diagnosis is supposed to feel.
There are no rules. Don’t fight your emotions; they exist for a reason.
People are going to tell you “I’m so sorry,” or “you’re so brave,” or “you’ve got this.” People are going to say a lot of crazier shit than that. People will tell you about their relatives that got it and died, or the ones that lived. None of those stories really did much for me.
People with no qualifications will tell you how you got your cancer, or even more strangely, why. They’ll also tell you how to cure it - fad diets, alternative medicine, thoughts and prayers - and this study they read (but don’t understand)! The amount of holistic shamans and weed dealers you know is about to rise exponentially.
A few idiots aside, most of these people are well-intended. Cancer is so common that everyone knows about it and the existential ramifications, but not enough people have an understanding of how overwhelming cancer is or what actually goes into dealing with it on an individual basis. Most people are just trying to protect themselves from thinking about the reality of what it takes to get through this nightmare.
And let me tell you, it’s not water fasting or cutting out sugar or relying on deities you may or may not believe in.
That’s not to knock anyone’s beliefs – if religion is important to you and your people, you should incorporate it into your recovery. Just… be ready for everyone to give you their version, whether you believe or not.
Here are some things I think you DO need:
You need a support system, and that starts with a good team at an oncology clinic you can trust. I know it’s getting more fashionable to shit on big pharma and medical professionals, but there’s a reason that people study for decades to try and help people overcome one of the deadliest diseases in human history. You’re about to face what might be the most important decision of your life, and it might mean tossing aside some bias from things you’ve heard on the internet or the news.
We have experts for a reason, even if they’re not perfect.
Also, the treatments are getting better. That’s not to say they’re easy, but they’re becoming more effective and less toxic each year. If you don’t feel like you’re getting the proper medical care you need from a place near you, please please get a second opinion. You need to feel good about the path you’re taking, and you need to advocate for yourself.
The other parts of your support system are the people around you who are willing to help. This might be your spouse, partner, parents, other family, friends, neighbors… whoever they may be, make sure you communicate your needs to them.
Do not keep your mouth shut. You are not a burden, and you need to advocate for yourself.
There are likely assistance programs attached to or associated with the hospital or oncology clinic you go to. These can yield financial aid, informational resources, help with getting to and from appointments, or mental health support & more.
The offerings will vary wildly, and some of them might not be useful to you. Try to figure out what fits your needs, and keep asking. YOU NEED TO ADVOCATE FOR YOURSELF.
Go to therapy – at least try it. You can stop going if it doesn’t work for you – it’s not for everyone. Talk to strangers on the internet who share your experience. Find forums, support groups, watch weird youtube videos from people who have had cancer.
You don’t have to agree with everyone or do everything you hear, but you can pick up little things from many different places and try them out. Hopefully, some of the good ones stick in your process.
Your mental health is paramount in making it through this thing OK.
You also need to be physically kind to yourself and give yourself the best chance of success at whatever treatment or recovery plan you end up with. You’re going to want to hydrate a ton, and get good rest if you can.
You need to eat food that allows you to get through whatever side effects the disease, stress, and treatment incur. I would advocate for eating whole, healthy foods, but the bottom line is you need calories to get through this.
A lot of treatments mess with your stomach, and it’s better to eat anything than nothing. Don’t listen to the sugar police – if you want to have junk food to comfort yourself, that’s the least of your concerns. You’re dealing with cancer.
Along those same lines, try to exercise as much as your body will allow without making you feel miserable during treatment. I would aim to move around in some capacity every day, even if it’s a jog or a walk or stretching on your light days.
I was lucky – I was able to run and play basketball during my treatments, and I think it helped me both physically and mentally, but everyone is coming from a different starting point and treatment will have different effects on your energy level.
I’m going to stop giving you informational advice right now, because this isn’t a guide on how to get through things.
This is a starting point and something that you might want to come back to later. Cancer has a way of making everything feel foggy or fuzzy – don’t feel bad if you forget stuff. Ooh, that’s one last point – take notes at appointments. Journal your thoughts. You’ll want to come back to things.
We probably don’t know each other, as it’s a big, big internet, but I promise you I and other people who have shared similar experiences care about you.
At the end of the day, that’s all cancer is. It’s a human experience – even if it’s a really shitty one.
You’re going to have your own way of going about things, and it’s not going to be perfect. You weren’t expected to be perfect in other areas of life either, so don’t start now.
Just try to give yourself the best chance of making the most of life, whatever that might mean in the context of your diagnosis. There is no good kind of cancer. All cancer sucks.
I’m sorry you’re part of this club. I can’t promise you everything is going to be alright, but more often than not, it will be.
I care about you and can empathize with you, even if I don’t know you. There are ways of making a shitty situation better if we work together to do it.
Don’t forget to hydrate ♥
#thankscancer #melanoma #cancerawareness #mentalhealth #fuckcancer
As science, medicine, and data progresses, we're going to be able to have many more 'n of 1' treatments for cancer.
Right now, it's still good to remember that even though the treatments aren't as individualized, your case is still N of 1.
I've had stage 4 melanoma 3 times. All 3 times were small metastases in lymph nodes, and nothing else (except the primary, obviously).
Of course, metastatic melanoma in its current treatment environment is still crazy deadly, and my body and I are playing with fire non-electively. But my treatments and recovery have me sitting in a third remission with a great prognosis.
There are tons of reasons why, and at the moment, I have to just say they all contribute.
But AI and other medical tech are going to allow us to show how I and other people have gotten through this situation, and our 'luck' (which is definitely luck right now) will be transmuted to more certainty.
Also, what a position of privilege (and probably hubris) for me.
I'm just past 15 months into remission number 3, which is still pretty precarious given my history.
But damn, I feel pretty good about things in our future. 🫰🏻
#thankscancer #melanoma #mentalhealth #medtech
“Stage 4 cancer" gets heard as a death sentence, but it isn’t one. It’s a description of location.
Staging answers a single question: where is the cancer? Stage 4 means it has spread beyond the organ it started in, and nothing more than that. It doesn’t tell you how aggressive the tumor is, what drives it or how long someone has.
We hear it as a verdict because for a long time it mostly was, and that has changed unevenly.
Metastatic testicular cancer is cured in around 90% of men, and advanced Hodgkin lymphoma is similar, both were near-uniformly fatal a few decades ago. Colorectal cancer that has spread to the liver or lungs can sometimes be removed surgically, with people disease-free a decade later. Metastatic melanoma used to kill within months and now has patients off treatment years on with clean scans.
Ofc, for several cancers, stage 4 remains incurable: Pancreatic cancer in that stage won't be cured for most patients despite recent progress. But incurable and untreatable are different words, and confusing them costs people time they could have had.
When you look up survival statistics, you are reading history: a 5 year figure published today describes people diagnosed seven to ten years ago and treated with what existed then. Where treatment has moved fast, that number is systematically pessimistic about the person sitting in front of me, because the patients living the current numbers haven’t been counted yet.
So the questions that matter aren’t about the number. What’s the molecular profile of the tumor, is there a targetable driver, is there a trial, can anything be removed or radiated?
Stage 4 is where the cancer is. It isn’t how long you have.
All I want politically is for our representatives to do things that benefit the constituents.
I don’t think either party has done a great job of that recently.
We spend so much political capital on expensive, nonsensical culture wars. We need our quality of life to be higher, costs to be lower, and unity to be a possibility again.
It takes a lot of self-reflection from everyone involved. We need to litigate the right things, and back off in other ways. On both sides.
My weirdest side effect from cancer was that I couldn’t smile for photos for about 18 months during my first treatment and into remission.
For whatever reason, trying to force a smile just froze my brain, and I’d make this weird grimace (see picture in chair). That was a pretty good smile for me during that time 😂
Anyway, the other picture is the first picture I saw post-treatment where I smiled, not only with my mouth, but with my eyes. I remember seeing this picture and crying, because I was so shocked to see that version of my face. I don’t cry often, either - not saying that to be tough; I wish I cried more lol.
Anyway, that was around Halloween of 2019. That’s my childhood friend’s son. He calls me uncle Mike. I remember feeling reassured that it was 18 months after a life-threatening cancer diagnosis and there I was, cancer-free playing with my buddy’s kid.
And so I smiled about it. It being my life.
I’ve gone back into the darkness of both cancer and shitty mental health multiple times. I luckily didn’t forget how to smile; that was really weird.
And a pattern I’ve noticed in recovering from dark times or even just emotionally numb times, which I’ve gone through a lot of in Cancer Land, is that once you recognize joy, it can compound fast. But that means you have to feel actual joy and be open to the idea that you can be joyful.
And then it’s like muscle memory. You can work your way back into emotional shape.
There’s some sort of Halloween allegory in this ramble somewhere, but I’ve also got candy to attend to.
Happy Halloween!
#thankscancer #halloween #mentalhealth #cancerawareness
I've played basketball 7 of the last 9 days - will likely extend that to 8/10 tomorrow.
Tomorrow is exactly 10 months since I got my left hip replaced.
I'm pretty sore, but I think that has more to do with being 38 and mildly out of shape (due to said surgery) than the prosthetic's existence itself. I haven't thought about my replaced hip in a meaningful way in a couple months.
That is WILD.
I kinda love being a science project, even if it's not exactly what I had in mind.
#thankscancer #melanoma #bionicman #MentalHealth
You have to stop trying to prove that you're courageous to yourself, too.
Otherwise, you'll never communicate what you actually need to anyone.
The irony is that once you stop trying to prove it, you also become braver than you ever were.
And believe me, I rarely bust out 'brave' in the cancer context. You're not implicitly brave for getting cancer. I hate that notion. I wasn't brave when I first got cancer. I pretended to be, and it sucked.
But you can do some very courageous things as a cancer patient. Among the most noble forms of bravery is being true to yourself and those close to you. One of the only ways to make going through cancer tolerable at any point in time is if you're ok with who you are at that point in your life. You have to be honest with yourself to get that. That takes courage.
A key point I didn't get back to in my main ramble about talking to people about having cancer is that your family and friends will understand most of the time.
Even if they don't, the next step down is them thinking "man, that's kinda annoying/sad/awkward," but still understanding why it's happening. There are hopefully enough people close to you that you can spread the awkwardness around or whatever, but like... don't worry about that.
Finally, there're probably people who will nope out of that role. Ok, fine.
Keep talking. Find other people. Keep talking.
If you’re wondering whether talking about cancer with your friends and loved ones is sometimes uncomfortable or annoying, the answer is yes.
But also, if you’re wondering whether you should stop, the answer is no.
You shouldn’t turn anyone or any subset of people into your therapist. Go see a therapist.
But at the same time, you are likely going to have a wide range of wild thoughts going through your head.
Sad, scared, depressed, happy, hopeful, dismal, confused, isolated.
You need to get some of those out. You can’t hold all the uncertainty in, even if it’s just to vent with no solution.
That’s still a good… 40% of why I started posting online.
These days, my head is much clearer, my thoughts much slower. But still, a lot of my posting is excising the remnants of thought patterns that bug me.
Tonight, I found myself wondering why I felt uncertain about my future.
I got to kindly remind myself that I’m still just 15 months out of a third diagnosis and treatment for stage 4 melanoma.
So while I’m starting to be my usual overconfident self again, I’m still pestered by the logical insecurities that the disease manifests.
They’re normal.
Talk about ‘em.
#thankscancer #melanoma #mentalhealth #cancerawareness
If you’re wondering whether talking about cancer with your friends and loved ones is sometimes uncomfortable or annoying, the answer is yes.
But also, if you’re wondering whether you should stop, the answer is no.
You shouldn’t turn anyone or any subset of people into your therapist. Go see a therapist.
But at the same time, you are likely going to have a wide range of wild thoughts going through your head.
Sad, scared, depressed, happy, hopeful, dismal, confused, isolated.
You need to get some of those out. You can’t hold all the uncertainty in, even if it’s just to vent with no solution.
That’s still a good… 40% of why I started posting online.
These days, my head is much clearer, my thoughts much slower. But still, a lot of my posting is excising the remnants of thought patterns that bug me.
Tonight, I found myself wondering why I felt uncertain about my future.
I got to kindly remind myself that I’m still just 15 months out of a third diagnosis and treatment for stage 4 melanoma.
So while I’m starting to be my usual overconfident self again, I’m still pestered by the logical insecurities that the disease manifests.
They’re normal.
Talk about ‘em.
#thankscancer #melanoma #mentalhealth #cancerawareness
This is incredibly good advice, but also an incredibly difficult set of items to do all of. If you can do SOME of these as you get into or go through treatment (or remission), it will help you.
Some of these concepts are wayyyyy harder in practice than in writing, though.
"Depression is your body saying 'Fuck you, I don't want to be this character anymore.'" - Jim Carrey
I've been Cancer Guy for essentially all of my 30s. I was diagnosed with stage 4 cancer 2 months after my 30th birthday in 2018. I'll be 39 on Christmas Eve.
The persona of Cancer Guy is not one I would have ever chosen. My early version of the persona couldn't accept how skewed the trajectory of my life had become, and couldn't help but relate cancer to everything I experienced in daily life because I wanted people to understand how bizarre it felt.
That is a weird, weird way to manifest your depression, but let me tell you, that's what I was doing.
I was in remission for a while, and Cancer Guy was scared that whole time. Scared I would never rediscover my identity, scared that I wouldn't be able to date anyone seriously again (I was in a serious relationship that dissolved during my 1st diagnosis), and scared that I was ultimately going to get cancer again and die.
I did get cancer again.
It turns out I have not died yet.
Similarly, I beat stage 4 melanoma the second time, as a different version of Cancer Guy. Still very depressed, still very scared, but now working hard to channel that energy into more cohesive and productive babbling about cancer... like I'm trying to do right now. 'Trying' being the operative word.
I had another remission, and then another recurrence 27 months ago.
For 27 months straight, I've been a version of Cancer Guy that I like. It's really weird. I just... put my head down and got to work. I wasn't going to let cancer stop me.
I have lived so much life since my last diagnosis. I played pro basketball, bought a house, changed careers, got engaged, got my hip replaced, got married, and have continued to grow my advocacy.
These are all accomplishments or things... tangible stuff I can brag about. Those are dope as fuck. I am very proud.
But realistically, the thing I'm proudest of is that I like myself, even as this character or persona.
I've leaned into it and built around it. Things are going really well. Again, I like who I am. I love my life.
That's an interesting thing about being sick. You get used to it. I'm used to being in this persona after 9 years.
But I also feel less like Cancer Guy these days and more like Mike. 15 months of remission kinda does that to you.
I would have never guessed I'd have this amount of optionality in my life, both physically and mentally, after dealing with so much life-threatening cancer and shitty treatment.
Again, good time to be Cancer Guy. 🤷🏻♂️
#thankscancer #melanoma #mentalhealth #cancerawareness
I should make a list of things that have saved my life while getting through cancer treatment.
If I do, hydration will be right up there at the top.
Last week in a meeting, someone asked me, "Mike, do you have three giant drinks?"
I did (coffee, water + electrolytes, regular water)!
I wake up ~7:00 am most days. By 9:00 am, I've had 72 oz of liquids (those 3 big drinks referenced).
I have tracked my diet here and there since going to college, and for about 20 years running, I think I average ~220 oz of liquids a day.
This is mostly based around the amount of basketball I play, but I am so, so, so, so sure that it has helped me in dealing with harsh systemic drugs and the recovery surrounding treatment.
It isn't flashy (and this post isn't to like... scold anyone who isn't hydrating), but now it has me thinking about how many mechanisms in my life I consider vital to my survival past the very well-designed treatment I've received and my rockin' bod that's used it.
I'll get back to you.
#thankscancer #melanoma #hydration #cancerawareness
I want to express my admiration for Jeffrey through the lens of my relationship with Dr. Hamid.
Dr. Hamid has advised my case for the last four years since my first recurrence.
He's incredibly knowledgeable; I have an incredible oncologist locally, and often, his answer to my complicated questions is "Well, it's a good thing we have Dr. Hamid to bounce this off of."
Dr. Hamid and I have a quarterly check-in that he has no obligation to do, but he brings a high level of care and compassion to every time. When I bring him complicated questions, the answer I often get from him is: "We'll figure it out if we have to. Go live your life; you have a great chance at a lot of it."
I leave our meetings with a great sense of peace, even though they're framed around a disease and my case that has so much violence.
But getting back to the original thought - science like this requires collaboration, compassion, and determination to get done. I'm not even qualified to wax about it - I'm not there for the failures and the long-term suffering.
I'm a product of the success and the long-term persistence, though. I never knew Jeffrey Weber, but I know Dr. Omid Hamid well enough to say that someone who commands this amount of respect in the field is someone who has helped me.
#thankscancer #melanoma #mentalhealth #cancerawareness
As we reflect on the @moderna_tx adjuvant vaccine data I wanted to remind all @myESMO @sitcancer @ASCO the force that was Jeffrey W Weber @nyulangone - we will all feel his presence as data are presented. True mentor, leader, friend.
Update to this morning's post.
I now OFFICIALLY remain in remission.
(or officially enough. We're counting it).
Also, my onc remains the best; messaged me at 8:00 pm.
#thankscancer #melanoma #mentalhealth
I'm officially at 15 months and 3 days of remission from stage 4 cancer.
Why does that matter?
My last remission was 15 months and 2 days.
My high score is a little over 4 years during remission 1, so hopefully we break that, too. 🤞🏻
The truth is, the absolute number of days doesn't matter. You either have cancer or you don't. (That's not exactly true, but it's mostly true. For everyone on earth, actually!)
But I've found that leaning into the numbers of my case and setting arbitrary goals has helped me. We do this in our lives all the time anyway, and cancer has messed with mine enough that I can use it as 'motivation' to help myself on a day-to-day basis.
Right now, in addition to stacking days of remission (which I have less absolute control of), I'm trying to gain some weight because I haven't lifted seriously since getting my hip replaced. This is also a very arbitrary-yet-still-important goal; I clearly need to be in peak basketball shape at 38 😂
I think a really important lesson I've learned about being a human (via dealing with cancer and recovery) is you don't have to be perfect every day, even if the task is literally life and death.
You just have to be pretty good most of the time.
That applies to all of life, also, not just cancer.
Just be pretty good most of the time, and you give yourself a good chance.
#thankscancer #melanoma #mentalhealth #CancerAwareness
I had my quarterly check-in with oncology today.
I'm 15 months in remission, and usually we go over the latest tests/imaging, but...
PET scan got denied by insurance, so we're figuring that out. cool cool cool cool.
ctDNA done two weeks ago doesn't have results back yet.
There's no suspicion of anything wrong, and it was pretty funny to have an appointment with my oncologist that was essentially all vibes.
He essentially felt my lymph nodes, and was like "alright buddy, how's life?"
We talked about my wedding, and next-line treatment options, we talked about how we felt about my case, we talked about health tech.
It was a cool experience, and I'm lucky to have a great team led by him.
But also lol @ our fucking healthcare system sometimes. Surely extra monitoring for a 3x stage 4 melanoma patient should be denied twice😂
@thankscancer #melanoma #mentalhealth #cancerawareness