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Scott Butner
Senior MemberPosts: 3,918 Senior Member
serious medical question for youse guyz
Scott Butner
Senior MemberPosts: 3,918 Senior Member
any of you have any (first hand, or close friend/relative) experience with leukemia? Especially the chronic form known as CLL?
I'm, ummm....asking for a friend.
I'm, ummm....asking for a friend.
Replies
my friend just got back from his second visit to such an oncologist (actually a hematologist associated with an oncology clinic) who reassured him that while he definitely has CLL, it's treatable and manageable.
it IS odd, however, to anyone who has experienced a lot of cancer in the family and seen the devastation it causes, to hear a doctor say "you've got cancer" and in the next breath, say "but it's no big deal" -- it's hard to reconcile those two statements even though the data seem to support his prognosis.
This is good.
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Mike
Scott,
CLL (Chronic Lymphocytic Leukemia) is the best form of leukemia to have. Survival is measured in years. Younger pts survive longer.
Go to the article below and look at the first survival graph. Half of all patients survive 10+ years. 80% survive 5 years.
http://www.haematologica.org/content/99/1/140
For example: if I am going to be substantially more tired than I am now, is it morally and ethically responsible to book weddings a year or more from now? It's not as morbid a question as you might think -- most of my weddings are marathon gigs that last 12-15 hours and often involve being on my feet and very active for almost the entire time -- usually in summer time heat. Last year I had already encountered some of the fatigue that goes with the disease and there were a few weddings that literally set me back for a couple of days following, though that was as much from heat exhaustion as anything else. And a good wedding photographer is often booked 1-2 years in advance. So if there's even a modest chance that I won't be able to be physically well enough to shoot a full wedding a year from now, is it a responsible thing to take on the assignment?
It's the kind of question that keeps me up at night, because who wants to leave a client "hanging"?
Another is the question of whether I begin drawing SSI at the earliest possible age (62 - 4 years from now) and risk a reduced benefit starting earlier in what statistically will be a shortened life span, or do I put the odds on living a long life and wait til I'm 65 so that my benefits are higher? All of these are choices informed at least a little bit by the statistics.
And it becomes more complicated when you weigh in the fact that treatment protocols keep improving all the time, with a steady increase in survival rates.
Sometimes being an analytical guy is really a curse -- much of my technical career was spent generating and analyzing scenarios in which a technology might "go wrong" and figuring out the consequences. It's hard to NOT apply that same mindset to your own case after doing it as a routine part of your work life for nearly 30 years. lol.
I thought that was SSDI? In any event, I meant just regular old social security retirement benefits. I am not sure that, as a retired self-employed person, I'd be eligible for disability even if I thought I was qualified from a medical standpoint (I'm not -- I'm still quite able to work, just certain tasks that are challenging due to their duration and intensity).
Rather, I was weighing the idea of "social security retirement" at the earliest threshold age, rather than the later age -- it makes a substantial difference in monthly payments, but if the odds are against me being there to draw the benefit (according to the article cited above, median life expectancy of someone approx. my age who finds they have this disease is about 12 years -- and I'm in a slightly higher risk group since I have a slightly advanced stage of the cancer). So it's worth pondering, but of course no way to answer it since the statistics tell me nothing about my specific situation -- or any other individual situation.
Then again, we might get hit by a truck tomorrow. We just don't know, so I'd go ahead and book. You'll know if you aren't going to be able to shoot and can possibly help your clients transition to another photographer. Just my thinking.
Either way, you have my prayers. Keep us updated on the progress.
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I started SS at 63, so I didn't have to sell my investment stock to live while I was unemployed. Stock that was doing well at the time and figured to out earn the SS increased payments at 67. Alas, it has not earned enough to balance it out, but the SS $ are in the bank. Crap shoot.
well, exactly.
but then my analyst mind kicks in and says: "well, what ARE the odds of getting hit by a truck?" and because I'm lazy, I pick the handiest available statistic, which is some old data (2002) from the National Safety Council. This tells me the chances that I'll be killed by a car or truck while out walking are about 1 in 47,000. Assuming the odds remain roughly the same as time goes on, the chances that I might die from a pedestrian accident of any sort in the next 5 years are simply 5 times that number, or one in about 9,000.
If one looks at Figure 1 of the cited paper above, my odds of dying within the next 5 years from this cancer are about 20% -- or 1 in 5.
So, considerably different risks.
Again, it doesn't mean I am taking a fatalistic attitude towards this whole thing, but I've never been one for the sort of blind optimism that ignores the data and assumes the best -- I think it's possible to have an optimistic outlook and still be cognizant of the situation. In fact, I think it helps -- it certainly motivated me to push for a CT scan, which my doctor thought was premature -- and that scan indicated that the cancer had become symptomatic, which will probably alter how I'm treated medically. So being realistic about the data worked to my advantage and gives me BETTER reason to be optimistic (harkening back to Auntie Em's comment about "...if you want to live a long life, get a chronic illness and treat it")
And honestly, being faced with the prospect that there's a non-trivial chance that you might have 5-7 good years left instead of the 15-20 you assumed.....DOES alter your priorities and choices. I know people say "always live your life like today was your last day" but that's like telling a runner to always run every race like it's a sprint, and then telling them to run a 5K
I actually am training one now, a close family friend who has been helping me with weddings for a while
The idea of you being around less than 12 years is a tough pill to swallow and I am not your family. This has got to have been hard on them.
they're doing OK with it. I mean, my wife and I have our moments where it kind of sinks in, but we've dealt with a lot of **** over the past 38 years together and we always find a way to cope. We will deal with this, too.
We are doing the responsible things (updating wills, talking about consequences and priorities, etc) but we are also just doing our lives the way we always have. I suspect that after the initial shock wears off, it'll be back to our usual until/unless more symptoms start to appear.
This, big time^^^
Mike
I guess at some point you are going to have to tell her what you actually paid for your fishing gear.
So, we're not going talk about the new meth lab?
Camera gear would be way worse..
Mike
lol I suppose, but one of the secrets to our marriage has always been making almost all financial decisions jointly -- we've never had the idea of "her money" and "my money" -- it's always been all "our money" -- so typically any purchase over $50 is discussed ahead of time. There have been exceptions, but they are rare. So I doubt she'd be surprised, even with the camera gear (where the dollar figures are much worse lol).
it'll be an amazing meth lab. Only the best meth will be made there. And huge -- absolutely yuuuuge!
I can agree with the being the squeaky wheel part. And given that my business is pretty much failing ANYWAY because I lack certain business skills and instincts, this simply provides some motivation to make the "fish or cut bait" decision sooner, perhaps scaling back to doing just landscape work professionally, and getting a part time job back at the Lab (it would be nice to reclaim my weekends!)
however, as a science guy and a quantitative guy, I am too interested in the rest to ignore it. I'm not about to be held captive to it, but to ignore statistics entirely seems kind of silly.
Psuedo or Methylamine?