In the past couple of days I’ve read several online newspaper articles announcing the upcoming publication of Steve Jobs’ biography. All these articles roughly claim the same thing, with more or less vehemence…that is, if Steve Jobs had not delayed surgery for nine months after his 2003 diagnosis, he might, even would, still be alive. Over and over I read that by the time he got the operation, it was too late.
Well, that is completely unacceptable. No matter how you spin it.
Before we begin, if the only thing you gather from my post today is that I’m opposed to chemo and radiotherapy and conventional treatments in general, then let me tell you: you missed my point entirely. Okay, now there cannot be any misunderstandings. Or so I hope. So let’s take a quick look at a few of the headlines I read online:
“Steve Jobs died regretting that he had spent so long attempting to treat his cancer with alternative medicine before agreeing to undergo surgery, his biographer has disclosed.” (Telegraph, UK: http://goo.gl/LOns7). Okay, y’all, that’s hearsay. It wouldn’t stand up in court, would it? No. However, that said, I actually don’t doubt that in the end Jobs DID in fact regret not having the surgery in 2003. I can well imagine what pressure he must have been under to start conventional treatment for his cancer. I myself was subjected to some of that pressure back in 2005…
I simply loved this fiery headline: “Jobs Tried Exotic Treatments to Combat Cancer, Book Says.” (The New York Times: http://goo.gl/G4vzr). Hmmm…I’d be very curious to have details on these, er, exotic treatments…I guess they’ll come out sooner or later.
Another headline (different newspapers used the same one): “Steve Jobs Refused Potentially Life-Saving Surgery, Says Biographer.” For crying out loud, didn’t he have the right to choose what to do with his own bloody body? Oh, and please don’t fail to spot that adverb, “Potentially.” Potentially, not “Definitely.” So surgery MIGHT or MIGHT NOT have saved his life. Most people (myself included, at first), however, will interpret this headline as determining that Jobs refused THE surgery that WOULD have saved his life. But hey, nothing is certain, is it? There are so many variables in cancer treatment. I mean, Jobs might have died during surgery (I’ll return to this particular point later)…or right after…or he might have done just fine and still be alive today. Who knows? Who possesses that all-revealing crystal ball?
Now I would like to digress for a few moments and tell a personal story: a few years ago one of Stefano’s cousins, a man in his mid 30s, seemingly strong and healthy, went to the doctor with what he believed was a minor stomach complaint. After various tests, he was diagnosed with pancreatic cancer. Not the slow-growing type, either. Well, long story short: he consulted the best pancreatic cancer specialists thatItalyhas to offer…and he began chemotherapy immediately. Unfortunately, he declined rapidly and died within a few weeks, leaving behind a wife and baby son. Let me tell you, it was absolutely horrible…
I would NEVER maintain, of course, that the cousin might still be alive or might have lived longer and in less pain IF he had NOT gone to the doctor in the first place or had NOT done any chemotherapy. And I’m certainly NOT saying that he’d still be alive or would have lived longer if he’d INSTEAD chosen to do any alternative treatments. To be honest, I think he would have died no matter what…And in the end he was suffering so much (from the chemo or the cancer, who knows?) that we were almost relieved when we got the final phone call…
So let’s go back to that “potentially” life-saving surgery that Jobs refused in 2003…And, just for the heck of it, let’s argue the following: what would have happened if Jobs had agreed to the surgery but then had died during the operation? Would the headlines have shrieked “Steve Jobs killed by surgery”? Or, even more preposterously, “Steve Jobs refused potentially life-saving alternative treatments”? Of course not. No, the headlines would most likely have been: “Steve Jobs died during surgery. His doctors did their best to save him.” And I don’t doubt his doctors did whatever they could to save him, mind you. Again, please don’t miss my main point…
…which is: you do not question conventional medicine…
…but you can question alternative medicine…
Of course there’s some REALLY bad stuff out there, some very toxic stuff that could REALLY, not just potentially!, make you worse, much worse. I’m referring now to those purported “miraculous cancer cures” that you should NOT touch with a ten-foot pole. Beware! There are a lot of snake oil merchants who feed greedily and callously on a cancer patient’s fear and desperation. They’ll assure you that they can cure your cancer. Ah, you have no idea what I would do to those ruthless bastards…And it is certainly possible that Steve Jobs fell prey to some of them. Who knows?
It takes quite a bit of experience to filter the potentially good from the unmistakably bad stuff. If you read about a substance that has no scientific backing whatsoever, stay away from it. And even when it IS properly scientifically-backed, do your research thoroughly, peruse PubMed, ask the experts, consult with your healthcare providers. Check it out carefully, as it could have unwanted side effects or toxicities (cyclopamine comes to mind). And we have to be super careful with dosing, too. Too much of a good thing is probably NOT such a good thing in the end, y’know!
But please remember: there are also some solid alternative treatments out there, which won’t cure you but might really help keep you stable or even bring down some of your markers. And, with integrative oncology, who knows what the future may bring? I have high hopes.
You know, sometimes I wonder how well I would be doing today if, back in 2005-6, in the absence of any CRAB symptoms, I’d chosen to take my hematologist’s advice and go ahead and do chemo + a stem cell transplant. I might be just fine. But I suspect that I’d probably be worse off, to some degree. Back then, you see, I didn’t know about the negative impact of early intervention. Back then, I didn’t know about CRAB symptoms. Again, though, where’s that crystal ball?
At any rate, whenever you read newspaper headlines screeching and squealing that Steve Jobs made a mistake in not choosing surgery, please stop to consider that we just cannot know everything, and that it’s pointless to speculate.
And also…who are we to judge?
Okay. I guess I’d better stop here. This post is getting to be way too long. I don’t want to beat a dead horse, as the horrible saying goes!
Luckily, there is at least ONE reporter with some sense out there (she also gives the reason why all those stupid headlines came out in the first place). And so I choose to end my post with her words: http://goo.gl/MbRYr
Last but not least, I’d like to dedicate this post to Lucie, wonderful writer of the “Green Bananas” blog, who had pancreatic cancer and died last year. She and I corresponded privately for quite some time…She attributed her “longevity” to her curcumin intake. Anyway, a very funny, lovely, talented woman. I miss her quirky sense of humor, just as I miss Nancy’s (La Cootina). You can still check out her blog if you want (see link on the right, under “Other cancer blogs”). There’s some really funny stuff there…
I love your blog.I am 4 years post stem cell transplant.So far so good.I am curious about geographic hotspots for MM.I read that Detroit,Michigan was the place with the most MM persons in Nort America.I grew up in Windsor ,Ontario Canada which is one mile away across the Detroit River.Are you aware of any hotspots in Europe or any countries /regions where MM is prevalent.Thanks TP
Margaret; I’m a smoldering myeloma person and like you, went running for a second opinion when in 2006 my hematologist wanted to begin treatment way too early. Still smoldering, although my M-spike continues to rise. Tried curcumin which gave me yellow hands and a bad cold (which could have happened anyway.) Being followed with blood work only at The National Cancer Institute and am considering joining a trial when necessary. *Any suggestions for alternative treatments? Thanks for your posts, Reina
Would it be possible for those who share what they take, also say how much, and when followed by blood work, share what that blood work actually says.
i am getting around to reading this quite late at night…so i will be brief. To me, the worst thing that disease can do is have you believe your life is no longer your own, even while you are still alive. Ok it is an awful hand to be dealt… but it is MY life and i will live it in first person and continue to do my best to figure out what comes next, by effort and by grace. And if it makes me grateful for the moment i have, and awake to wonder and frailty, and stop taking things for granted and live like nothing is throw away…. then i think i am getting pretty good value. i will not presume to know what anyone else’s life is like from their point of view, but honor their right to make their best choices. thank you for all you do to light the path! may we smolder long xxd
Hi Margaret,
I think another thing that is worth considering about Steve Jobs and his alternative treatment is the time in which he started on that journey. I think it was around 2003 when I started reading about alternative and complementary medicine.
I can say that the knowledge base has grown exponetially since that time. Back then, how many people had you ever heard talk about using curcumin,melatonin, egcg, intravenous alpha lipoic acid, LDN or ashwagandha to try and treat cancer? Yes there were probably some pioneers out there, but the research wasn’t there yet to back these alternative treatments. Just look at the data for curcumin between then and now and you can get a good idea. Back then, 4000iu per day of vitamin d was probably considered toxic and most doctors would have advised against it! Alpha lipoic acid was something more in the exotic realm of body builder fare.
So had the research and information been available to him back then, perhaps his outcome may have been entirely different. He could have chosen his alternative plan more effectively from the very beginning and possibly had a very different outcome.
Art
Margaret,
I think it is terribly wrong for anyone to judge the medical decisions of another as in Steve Jobs’ case. No one ever makes one of these literally life or death choices easily. I have been there, and will surely be faced with them again, and it always comes down to you hoping you have chosen correctly. It is extremely personal, and one feels pressure from all sides of the medical spectrum. All those who love the patient the most feel they have a right to add their input, and one can feel torn between opposing family members and friends who all think they know best. There is always doubt, but the patient has to make the best decision possible with the facts available. I am sure when the end is near, I will question what I might have done differently (but I hope not!) Just hope there are no “Told you sos” in the vicinity.
God bless all of us battling this (MM) and every miserable cancer. May we all make enlightened decisions!
Margaret, thanks for your words here. I have been really saddened and downright upset by the negative spin on “alternative medicine” that Jobs’ death apparently provides an occasion for. My first reaction to the fact that he waited 9 months to try conventional medicine was that something he was doing must have been working to some extent for him to be ABLE to wait that long, with pancreatic cancer. I”m always amazed at how everyone wants to thow alternative medicine into the garbage can. In our case, with my husband’s MM, alternatives have not been the whole answer, but they sure have been a big part of what has kept him going, and he has amazed his doctor, who is just flat out not used to his patients doing so well (because his patients don’t usually follow natural approaches). In my own case, an encounter with the medical system this summer that left me incapacitated with pain for weeks taught me that not only does medicine not only not have all the answers, it can also do a whole lot of harm. I think it is unwise to slam Jobs for trying alternatives first. For all we know they actually added to his lifespan. And i’m willing to bet they added to his quality of life. I yearn for the day when we are not censored (as is the case on some lists) for talking about alternatives. Everyone has to choose their own path, but it is sure a lot easier when others share their experiences. And, what i think the doctors often forget is that at the end of the day it is the patient’s body, and the patient’s choice.