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Leukemia Has Won

alex.blog

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Re: Leukemia Has Won

#31

Post by DoreenMichele »

joshgel wrote: post #15

As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors…

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.

Re: Leukemia Has Won

#32

Post by gurpreet- »

Immensely saddening. I just read through some of his cancer tagged posts on his blog and it seemed like he was finally reclaiming his life back. So sad to read that it came back.

Hope that you find peace, my friend.

Re: Leukemia Has Won

#33

Post by VikingCoder »

My dad had one month and one day from diagnosis ("surprise, you have stage 4 lung cancer") to death.

Fuck cancer.

Thank you, Alex, for trying to make the world a better place. Open source is a wonderful legacy.

Re: Leukemia Has Won

#34

Post by bradknowles »

komali2 wrote: post #18

Jeeeesus. I'm incapable of understanding the mindset the man is in - total awareness of impending death. It must take tremendous courage - I think I would have been reduced to a quaking pile of jelly faced with the fact of mortality. What a person, what a reality.

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.

Re: Leukemia Has Won

#35

Post by stickfigure »

jph wrote: post #10

Godspeed. Thank you for sharing your stories. For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/ LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.

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.

Re: Leukemia Has Won

#36

Post by cabaalis »

This man is living my worst fear. Also 34, watching my 6 year-old play a video game.

Good luck, Alex. All I can say is, I don't know how you stand, but I know a man who can.

Re: Leukemia Has Won

#37

Post by moises_silva »

ergothus wrote: post #22
joshgel wrote: post #15

As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors…

> ...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.

Agreed. On the other hand, I'd like to think I'd not take it as a personal attack, but I'd not go as far to say I've not lost anything. Just because my life is insignificant in the grand scheme of things and we all have to die anyways doesn't mean I'm not actually losing time with my loved ones and the general enjoyment from life. I suppose you can 'change' the definition of losing or claim we don't own our lives anyways, but that seems like a stretch, and to some degree, seems like invalidating their sense of loss.

Re: Leukemia Has Won

#38

Post by pvaldes »

libpcap wrote: post #2

Is there a chance of a liver transplant?

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)

Re: Leukemia Has Won

#40

Post by moises_silva »

DoreenMichele wrote: post #31
joshgel wrote: post #15

As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free. As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors…

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 an…

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

I'm genuinely making an effort to understand how this is relevant to someone with a cancer diagnosis. Sure, dead comes sooner or later, and that's the whole point of why one would feel it sucks and that we're losing, because often cancer means for you, dead came way too early. I have not known anyone with cancer, but I can't help but feel somewhat related as I have a loved one with a mental condition. Although there are techniques such as 'radical acceptance', it's easier said than done, and when it comes from an external party advising you to accept it, it feels invalidating, because they don't know how it feels (even for others with cancer or mental conditions, each person experiences it differently).

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