Leukemia Has Won

I was diagnosed with lymphoma about 8 years ago. It's been undetectable since six months later, and I haven't had any treatment since the three years of chemo ended, but that's not to say it won't return.

I've always disliked the "winning/losing" paradigm, and also terms like "struggle" and "battle". To me, they all imply that there was or is something that I personally could have done to change the outcome. If I hadn't been fortunate enough to respond well the treatment, that I'd "lost" or "didn't fight hard enough."

I'm grateful to the physicians and scientists who devised my treatments, and to the doctors and nurses who cared for me. I myself played no part in any of this, though. A freak genetic accident caused an affliction, and I followed the prescribed script. I never once felt that I was battling something, or that I had to try harder. I don't feel like I've won anything. If it returns, I won't feel that I've lost anything or that I have to try harder. If it returns and I die, it won't be because I've given up or didn't fight enough. It will be because the currently available solutions to this problem are insufficient for the particular conditions of my body.

My condolences to Alex and his loved ones.

Bloody hell.

It's his announcement. If he feels it is a battle he has lost, well I can fully understand why, I'm not going to criticise his choice of word.

Only the title and first sentence contain an expression you heavy handedly dislike. I don't see him ruling out palliative care, or any of the other criticisms you level. The rest of the short post is a poignant summary and thanks. It's disappointing, but rather typical of HN, that the top comment and most of the comments are now around the language of cancer, not Alex, his life or work.

I am a thyroid cancer survivor. My mom had lung cancer. My dad had kidney cancer. We've had cats with cancer.

One thing I've learned is that the single most important resource we get in life is the amount of time we have on this planet, and what we do with it.

Once you get to the point where there are no more treatments that doctors can give you to try to stop or slow down cancer, and the only thing they can do is try to make you as comfortable as possible, I don't see any other way that we could possibly look at this situation than an almost complete loss.

But maybe I'm too close to the problem.

As a medical oncologist[1], your paragraph and that paternalistic and annoying article you cited makes me mad. The outrage with 'our language around cancer' is a recent phenomenon, and I think it is actually not that important and even harmful. What you are proposing is to homogenise how patients cope with cancer, assuming that one way of dealing with it is qualitatively better than another. This 'one way' is a kind of stoic acceptance, an appreciation for the simple things in life, a focus on quality of life and meaningful experiences, good supportive care outcomes, ending finally with a peaceful departure surrounded by loving friends and family.

This sounds great, but it is a grave error to assume that all patients should think this way. First of all, many don't get the chance. Some patients are too alone, too poor or have too much chaos in their lives to be able to get anywhere near the 'one way'. For some patients, their cancer arrives suddenly and kills them before they have time to accept or deal with anything.

But the main point is that you can't a priori decide what is the right way for someone to deal with their illness. For some people, they need to fight it like a battle, before they can ever accept the fact they will lose. For others, they 'fight' because they know it is important to the people they love, even though they know it is probably a lost cause. Who are we to tell them that they aren't thinking about things the right way?

The final thing to say is that a cancer is incurable until it isn't. The worst thing is when a new treatment comes out (like immune checkpoint blockade), and a patient whom you know would have benefited immensely from that treatment dies just before they could have received it. There are patients I see today who decided to fight, sought out any avenue they could and are alive and going on holidays with their kids today because of it. That is a dreadfully uncomfortable notion, and something that a health system can't possibly deal with, but try telling those people that their 'language around cancer' is unhelpful. By the same token of course, there are many who never accept their illness, and waste precious time pursuing expensive, futile therapies.

In medicine, avoid generalisation and homogenisation at ALL cost. As colourful and varied as people are in their healthful lives, they are only more so when ill.

[1] In other words I give drug therapies to people with cancer. About 70% of the people I see have advanced, incurable cancer, with life spans ranging from a few years to a few months.

No. Everything about that article is infuriating. We are fighting an enemy. Again and again we lose. The patient loses, the care team loses, the doctors lose, the family loses, the whole of humanity loses.

You have to believe you can win to continue to fight and you do have to fight quite literally with family, with friends, with yourself. But more generally we as a society have to be able to recognize an enemy and a battle when we see one. To remove, hide, obscure, or soften this language would be an insult to all those who have fought and lost in any capacity against this monster.

We fight, we lose, we die, repeat ... until we don't.

On the same note, highly recommend "Being Mortal", which talks a lot about that mindset and palliative care. It can be really damaging to think in terms of winners and losers since you might end up going through a lot more pain than necessary. It can be really beneficial for everyone involved to readjust goals and make the best out of the situation. Dying is part of life, and we need to be better at accepting and dealing with it.

Oh boy. Here's more "feel good" language change suggestions.

No. Just not. This kind of thing is extremely hypocritical and insulting to all those who are actually fighting cancer. Both the patients, the doctors and research teams.

>Cure seems like a goal that isn't realistic anymore.

Where did you get that from? Both cure and 5 year survival rates are higher than ever and are slowly encroaching advanced stages of cancer.

>And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect.

Except it is. He lost his life. This is a fact. Language won't change it. Pretending that he didn't lose anything is more insulting to him and his family than not. Respecting his choice is different from pretending that he didn't lose everything.

I've seen people give up and accept their low chances of survival. It's very rare. More often than not I see people who want to live and exhaust every option available until the last minute of their lives. This is literally a fight and these people would punch you in the face if your righteousness suggested otherwise in front of them. And it blows my mind that a doctor( are you an actual doctor? In the States the term doctor isn't regulated so a chiro can call themselves doctor) doesn't see that the field is rapidly improving with better and more options all the time. Now more than ever before it's worth fighting to your last minute in case new therapies arrive that have great results for you.

> ...some foe personified.

> ...make sure he doesn't think he lost anything

While I have vast respect for those that can have a different viewpoint, I'm not sure I'd be able to look on it as anything but an intensely personal attack from the universe that definitely takes things - notably, a future - away from me.

With time I might find the wisdom to feel otherwise. But time is what would be taken away.

"Using the battle metaphor implies that if a patient fights hard enough, smart enough, and/or long enough, he or she will be able to win the war."

No it doesn't.

I imagine that the battle metaphor is comforting to some people for precisely the opposite reasons.

Being drafted into infantry (stereotypical mental image of a battle) there is likely no good outcome. The best case is probably a deeply unpleasant, emotionally and possibly physically painful, experience. The worst case outcome is death.

Ability to personally influence the outcome is limited at best. You can fight long, hard and smart and still find yourself on the losing side.

I have no direct experience of cancer but if I did, I'm not sure I would appreciate a critique of my choice of language.

If I found comfort in a metaphor then I'd hardly like for my doctor to point out that the metaphor is a cliche or a trope.

When her last chemo failed, my Mom lived for about two weeks, in excruciating agony despite intensive care.

Leukemia won, there was no other way to put it.

There's a terrific book called "Tell them who I am." It was written, I think, in the last year of the life of a man dying of cancer. He wanted to spend his final days doing something meaningful.

It's about the lives and identities of homeless women at shelters where he volunteered.

I am sympathetic to your rage. I wish I knew how to help such people. But I don't.

Death comes for us all, sooner or later, one way or another. That's one of the few truisms in life.

I don’t really get it. Of course he is losing something. His life. I lost my mum last year because of cancer. I don’t get why it’s a bad thing to fight for something you dearly love. Your life. What else you got?

I want to trust that Alex wrote this post because he has accepted what comes next. And he may still have a crack team of doctors vying for a cure, but either way... he has made his peace.

I want to trust that Alex posted this because he made peace and it's his final words. It is profound, it is beautiful, and it is how he wants it.

I cried.

I read this article a long time ago and it stuck with me.

https://www.theguardian.com/society/2014/apr/25/having-cance...

I feel weird about the status of cancer.. it seems there's so much progress that it hurts with a different taste nowadays.

That's your way of looking at it, other people have a different way. When you are on your death bed you can write about your own thoughts on the matter.

I read the explanation you linked. May be I'll be able to digest it better with some more thought, but my initial reaction is that they seem to be splitting hairs. Just like any metaphor, it doesn't fit perfectly, but the authors seem to be making quite a bit of leaps of reasoning to try to make it a bad/harmful metaphor, such as:

> Using the battle metaphor implies that if a patient fights hard enough, smart enough, and/or long enough, he or she will be able to win the war.

I don't think that ever crossed my mind. At least in my case I always saw that metaphor as implying you and your body are fighting, and your actions do have some degree of positive influence in helping your body fight and stay alive. A battle doesn't have to be a battle that is winnable with any degree of certainty, I can accept that is a battle with very low odds of winning and that the degree of control I have over how my body will react to treatment and if it'll be effective may be close to none. I can understand that, all they have to do is explain it. It doesn't mean the battle metaphor doesn't work. It doesn't mean if you lose the battle you're a 'loser' (the word loser IMO has a different connotation and doesn't apply to just anyone that loses a fight or that chooses not to fight).

> Patients with “curable” disease are cured because treatment eradicates every last cell, not because the patient did or did not somehow fight valiantly.

I believe the point is that going through the treatment is what makes them fighters. Yes the treatment is what cured them, but that's just missing the point that going through a painful treatment is why people (or at least me) call them valiant fighters. That doesn't mean I think if you don't fight or give up at some point you're somehow a coward. I could just extend the metaphor and say instead they chose to fight another different battle, facing mortality. Who's to say what's harder? I wouldn't dare to pass judgement on either choice.

> However, thinking about it from a different perspective, the use of the battle metaphor implies a level of control that patients simply do not have.

Are they saying they don't have any control? they can choose not to do any treatment. Choosing a treatment is staying in the fight. If they're implying treatments simply don't work, ok. But if there's even a small chance they do work, it's still a battle. It's easy for the doctors not facing death to tell someone to just give up, for some people hope alone keeps them mentally alive, not sure why is that hard to understand.

> When a person runs a marathon, we credit them for their training, commitment, and aspirations. We never declare anyone from the second-place to last-place finishers in a marathon to be losers.

If someone trains and doesn't finish a marathon or finishes last, technically they lost the race, yes, I'd not dare to call them or imply they're a loser. It's the same situation for someone that loses to cancer. The only reason I think losing to cancer is appropriate is because is final, you lost your life, which is not the case for a marathon, where you actually accomplished something that you can later be proud of and share with your family.

> As they turn from treatment to treatment, they are not spending time with loved ones; rather, they are chasing the illusive “win,” a path that affects not only them but also their family and caregivers, as well as family finances.

That's all good and fine, and it should be clearly spelled out and given as an option, it has nothing to do with whether the battle metaphor is accurate or good for some people or not.

> Did she lose her battle? Or did she choose to control how she spent her final days?

She chose not to keep fighting and that's fine, no need to pass judgement, it's a very hard fight after all, so even if we say she lost her battle to cancer, she chose to fight and win the battle of facing death in your terms and that also deserves my utmost respect. The authors instead choose to imply that saying someone lost a battle is calling them a loser.

> We firmly believe that health care professionals owe their patients the difficult and honest discussions that come as patients grapple with their mortality. We also believe that patients’ decisions should be honored and supported by their health care team.

That is one thing I agree with.

> Let us focus on the life that people enjoyed before being told “you have cancer” and remember them as victors in life, not losers in death. Let us stop letting cancer appear to be the winner.

It's fine to focus on the good stuff, doesn't magically mean you weren't dealt a sucky hand and that it's fine to grieve and feel the loss. Would you tell a father that lost his small son to cancer to move on and celebrate his life (as short as it was)? it's a loss, stop pretending is not, it's healthy to acknowledge the loss and grief before you can move on.

Immune receptors that bind healthy cells and tissue are said to be autoreactive, and the antigens on healthy cells and tissue that they recognize are called self-antigens.

I think many don’t think of cancer cells as their cells. They’re not supporting life anymore so they don’t belong, and it’s important to get rid of them. Plus the immune system is often (not often enough) destroying the cancer(ous) cells which further indicates that they don’t belong. So it’s the rest of the cells vs the cancer cells.

It’s good that you’re trying to make the most of everyday. Best wishes.

What were your symptoms? How were you originally diagnosed?

My mom once told me that the only thing she knew of that was worse than having cancer, was being the long-term caregiver for someone who had cancer. She was taking care of her sister at the time, who had stomach cancer.

Then my mom passed away a few years later, due to lung cancer -- caused in part by her sister who was allowed to smoke like a chimney, even in the hospital, because she was at stage 4. My dad was the primary care giver for my mom.

My dad recently passed away in ICU, when I had to make the hard choice to remove the ventilator instead of doing a tracheotomy, because everyone in the family knew that the last thing he wanted in life was to die in a nursing home. And if we had them do a tracheotomy, he would never be able to go home again. He never woke up, and passed within an hour of removing the ventilator. He was 74.

I've had thyroid cancer, which was surgically removed and then I had radioactive iodine therapy afterward. I'll be on synthetic thyroid replacement medication for the rest of my life.

I don't think I have much illusion about what is around the corner for me. I'm just trying to put it off for as long as I can, try to get some good work done in the time I have left, and enjoy spending as much time as I can with my wife and what is left of the family.

I mean, your death is impending too.

> I'm incapable of understanding the mindset the man is in - total awareness of impending death.

Seriously? Every human being on Earth over a toddler's age is totally aware of impending death. To date nobody has ever lived forever. The only question, for every human being, cancer or no, is how many years you get before you eventually die.

Modern man just makes my head shake in disbelief sometimes...

Though I have not personally donated, I have been swabbed in the US via the BeTheMatch organization [0] and I know people who have donated. The swabbing process is very easy and free. However, donation is not as easy as with blood. The process covers a few weeks, typically a flight and overnight stay before donation, and then the process itself which can be difficult at times. One key thing that I discovered is that you do not ever meet your match and there are strict rules against this (due to prior events with racism, sexism, religious issues, etc).

Bone marrow donation is not an easy thing. However, it is a heroic thing. You are very personally and quite literally, saving someone's life that you will likely never meet (what a world we live in!). With blood donation, it's a bit less connected, at least here in the US. They tell you that you are saving up to 3 people's lives. But outside of the donation station, you never really think about it again or hear from anyone about it. With marrow donation, you, and only you, are the reason that another real person is alive [1]. It's much more, well, intimate(?) than with blood donation.

Also, as HN tends to be a bit more on the paranoid side, I checked and they do NOT store any genetic information about you. Only the lymphocyte tests are stored via HIPAA compliance and are deleted when you decide to go off the registry. It seems that they are not very shady, so to speak, and really are trying to save lives and nothing else.

Please, if you are able, consider becoming a donor today.

Be an honest-to-God, real, actual Hero today.

[0] https://bethematch.org/

[1] Not to discount all the staff, nurses, doctors, researchers, financial donors, etc.

This. Registering is very easy, at least in Germany. I did it because I stumbled upon an event that did a mass registration, but you can also request a kit that contains everything you need to register. Just send the cotton swab (?) back, it's easy and no pain involved. Please look up whether there's an organization near you that offers services like this.

I found this website that lists the equivalent organisations around the world - or at least, it lists DKMS for Germany, and the one I know to be correct for the Netherlands: https://swabtheworld.com/become-a-donor/

For one reason or another they don't link directly to those organisations, but if you have the name, you should be able to find out the rest.

Good shout! I've done it a few weeks ago and its quite straightforward process.

I'd like to add one other important (free!) way you can help: Sign up to be a marrow donor.

In the US, here: https://bethematch.org

Alex mentioned graft-vs-host disease. When you get a marrow transplant, the better the match, the more likely you are to survive. The bigger the database, the better chance of a good match.

Seven years ago I lost a good friend to non-hodgkin's lymphoma. Cancer sucks.

LLS is an amazing resource.

It is a great source of useful information for patients and families. Anyone going through a similar process knows the horrors of googling for information. You end up with all sorts of pseudo-science (e.g. "paleo cured my cancer"), false hopes (e.g. mouse trials which sort of address particular variants of mildly related diseases), and sensationalist terrifying stories of the horrors of chemo.

It is also a great resource for finding support networks, both in-person and over the internet. (Seeing a therapist or joining a support group is so important for both patients _and_ those close to the patients!)

I hadn't looked at Final Gear in years but that really brings back memories. I didn't know who ran it until now. When TG was on the air I would refresh FG until the episode was released.

I'm glad I got to know about one of the people who contributed to making my life a little better, even if it was close to the end of his. Thanks Alex for all of your contributions.

That's awful. My condolences :(

Children and death, be it yours or theirs, is the worst combination of thoughts possible to occupy your mind.

> We are all just living to die.

Pretty sure there's more to it than that, bud. But you know that already of course. Death is a great motivator to live a life with purpose and meaning, for one. Dwelling on mortality can bring a sharp focus to your life. It's a fear that transcends all other fears which may stand in your way.

That's the downturn of Western philosophy that we are raised on. We perceive death as an opposite to life while naturally they are the parts of the same cycle.

Unlikely, as his cancer diagnosis puts him below other patients with an higher chance of survival, and the chemo will likely be too much for a patient recovering from a transplant.

Lab-grown organs can't come soon enough :(

I'm not an expert here, but I doubt that he would qualify for a transplant given the heavy toll that the future leukemia treatment would put on the transplanted liver. It's sad, but sometimes there really aren't any more options.

The fact that he mentions GvHD would indicate that not to be an option, unfortunately. IANAD.

Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality!

If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help.

Without donor's white cells, the Leukemia gets worse, but without liver, people die fast. It seems that restoring liver function would be the higher priority now.

Liver has evolved to be destroyed and regenerated. Is able to create new hepatocites massively if needed. Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Is an awesome organ if we think about it.

The options are, I suppose, a liver transplant/liver graft, that is expensive procedure but very effective.

or a liver support device that could buy a precious time until a liver donor is available

It seems that in USA there are around 4000 liver available from donors each year, and a list of around 17000 receptors. Liver transplant is expensive. You need to invest maybe $12000-250000 only for the operating teather part. Plus post-operatory procedures.

An alternative could be to take a chunk of liver of Mr. Mills and cultivate it in a laboratory, far from chemoterapy and vicious white cells and then create a bio-system that could act as an artificial liver for some time. A possibility maybe could be to make a self-transplant in the future. Even small chunks can regenerate a much bigger chunk of liver

Several types of artificial livers could help also to alleviate the liver work, like a Molecular Adsorbents Recirculation System (MARS) or/and fractionated plasma separation and adsorption (FPSA, Prometheus)

Miracles do not happen. What he needs is a donor and a crowdfunding campaign.

You're gonna call clickbait on an ad-free personal blog from a guy announcing that he's dying? Seriously?

Come on!

There's no cure for death after the fact. No cure for the loss of information from a damaged brain, unless somehow a backup was made.

Well, I'm sure that will help the guy with cancer. C'mon.

>But Consciousness... since quantum information isn't lost

Is this one of those instances where the word 'quantum' is used to hand-wave away weird ideas?

For fucks sake man. You and the others leaving comments on his site about green tea, olive oil, diets, fasting, "ayurveda", and god(s) that will save us if we really believe... wtf.

This is a guy that has a death sentence over his head. He's being doing treatment for years, his body is weak, probably has or will have pain regularly. Is this the moment to do fasting or drink freaking green tea?

It's cancer guys, not a simple cold.

What is the alternative? Wild guess based research? Faith based research? I'm having a hard time envisioning how you'd design an experiment, and extract knowledge, without a hypothesis.

>their singular focus on only funding “hypothesis based research”

What is the alternative to "hypothesis-based research?"