Read it: “How Long Have I Got Left?”

This article that was in the New York Times blows my mind as one of those “Agh!  That could be me.” kind of things.

Read it:  How Long Have I Got Left?

I like it for a few reasons.

To start, I like his honesty and the way he addresses the fear that comes from knowing too much and yet not knowing enough.

I also like how he addresses the challenge in presenting statistics and likelihoods to patients and families regarding survival and mortality and how really, it is just a guess.  But at the same time how that is something we want to know so badly.  I tend to address this similarly.  I don’t like to give numbers.  It isn’t fair because we suck at knowing.  That being said, ball parks are nice while acknowledging that there are errors in this.  I mean, any of us can walk out and get hit by a bus.  But on the other hand, I admit that if it were me, I know I would want to know exact numbers even though I know that they are never really exact numbers.

I also like how he is doing well and is back to work and life.  Because cancer drugs are much better these days.  Particularly the kind that he is on.  People do well for a long time.

It is the kind of article that reminds me life is awesome, statistics suck, prognosis is such an important grey area and that cancer treatments continue to blow my mind.

What are your thoughts on this article?

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7 thoughts on “Read it: “How Long Have I Got Left?”

  1. What a gut wrenching article. I am a cancer survivor with statistically only a 5% chance of recurrence. Those stats are from 10 years ago. Who knows what they are now or the probabilities of developing another type of cancer. It’s something that took me years to learn to live with and occasionally, on the very dark days, it revisits. His article captures it all and OMG, he’s only 36.

    • I can only imagine how tough it is to live with the wondering “am I going to be that 5%” and such. It makes your health and mortality seem all the more real, to say the least.

  2. I have a medical question. A dear friend of mine and many others died last week from congestive heart failure. He was 64. He was a strange guy, but I didn’t think he was so strange he wouldn’t even tell his family of his disease. He did confide in me over 20 years ago he had a bad heart but I thought he was kidding. At what point or is there a heart transplant can be done with this type of problem? Just curious here because his family is devastated that he never told them.

    • Sorry to hear about your friend. You and his family are in my prayers while you cope with this loss. It sounds devastating for his poor family.
      As for your question, this is definitely not my specialty, but I’ll do my best. There are a number of reasons someone can have a bad heart from genetic conditions to previous heart attacks to bad valves or toxins (like alcohol, certain drugs, etc.). Some heart conditions are manageable with medications for a long time and people will do that. Others progress over time and can be slowed with good care and management. Unfortunately, they do eventually progress and can lead to complicated states of illness that can result in death.
      Heart transplants are done for a variety of conditions, including most of the ones above, but they are pretty uncommon and although more and more are being done, a lot goes into a transplant decision. The first is the willingness of the person needing the transplant to get one. But even more than that, their other health issues go into it, if there is any issue from smoking to mental health to cancer that could impair the transplant either by shortening their life expectancy, impairing healing or recovery or preventing adequate care and follow-up, those people cannot go to transplant. Sometimes if a person gets suddenly much sicker, the chances of recovery can go down and, depending on the circumstance a transplant would not be available or would be too risky at that point. Often, programs have cut-off ages, weights, etc based on the current research. They want to make sure the organs go to the person who is going to get the most benefit both in quality and quantity of life from the heart. So, a lot of people can’t have that option, especially when it comes to things like hearts and lungs. Livers and kidneys are slightly easier to come by and offer a much larger increase in quality of life and survival, so they are somewhat more common transplants.
      So, in short, heart transplants are done, but there are very particular circumstances. I would like to think that if it were a good option for him, it would have been looked in to and discussed with him at some point.

      • Trisha, thanks so much for explaining this. He used to smoke but that was many years ago. Knowing him even if the doctors told him years ago he would have been eligible for a transplant he would have said no for 2 reasons. He would not have wanted his family helping him or to him he would have considered that interference in his private life. Secondly he would not have to protect his family from having to deal with his problems. I must admit after I found out the truth I wasn’t surprised but it almost makes me mad at him. Is that bad? He told me once many years ago he never went to the doctor; well that was a lie but i guarantee he was given options and he refused them. He was stubborn, hard headed but hilariously funny! But if anyone tried to get into his private life, he turned into a fierce fighter and sadly that included his own family. I know 2 of his siblings are absolutely heartbroken over not knowing and his death happening out of the blue like it did; or at least that is what it appeared to them. He knew a year ago something wasn’t right and didn’t tell anyone that I know of. My heart aches for his family because it appears I knew more about him than they did. Thanks again so much for taking the time to respond.

      • You’re welcome.
        Your friend sounds like he was quite a spitfire. Some people just make their decisions and plow headlong no matter what people who care about them say or do. It is sad that it can really hurt people on the way. But I’m glad that it sounds like you also have some funny memories.
        I think it sounds reasonable that you feel almost mad and that his family is so heartbroken. It is hard to process when things like this come seemingly out of the blue and even harder sometimes when you realize that maybe it wasn’t so out of the blue.

      • Trisha, yes I feel as if I want to hit him! Is that bad? I assumed 20 years ago when he made an “off” comment about having a bad heart his family knew. And yes he was one of the most comical human beings I have ever encountered but he was also strange. He was too smart for his own good, but would have a room full of people laughing as soon as he walked through the door!

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