Soon-Shiong sounds rather like the Elon Musk of medicine. Let's revisit this maybe a decade down the road and evaluate it then, along with outcomes of Musk's launching of hundreds, perhaps thousands or more by then, of satellites into the skies.

I have no idea of the cost of this treatment, but I would imagine it's quite high. So the elite, like Senators, celebrities and such can access it, but beyond that it may be out of reach?

Thank you for your continuing honest reaction to such things as this.

Ah, the "Fixers" of the world -- long the bane of my existence! I have MS, and everyone seems to know more about how I should live with it than I do. The presumption is galling. And yet, many of the fixers are people I love, and who love me. I take a deep breath and gently explain that I do not need or welcome their advice. When I have lost friendships or relationships over this issue, I accept that it was for the best.

Wishing you well on your (well thought-out and right for you) path, Ronni.

As soon as I read that the guy was a media mogul I thought "Nah!" I can't imagine you, wonderful journalist, wouldn't have investigated anything legit.

We readers learn so much from you--not just about your trials and tribulations--and many positive things along the way, but also about ourselves. Thank you for sharing so much of your story with us.

I'm sorry people are doing that to you!!!! I've always though their fear of death makes them grasp at any straw. My parents each reached their cancer fork as you have. Get the most out of life each day that remains-they did, and they taught us kids about Grace.

I admire your commitment to writing your cancer story and attempting to educate.

Hugs to you and I hope today brings you some good moments!

Well meaning or not, Ronni, these folks are behaving badly. We all need to learn that there are areas where we can offer advice (what kind of car to buy) and others where we have no right to meddle. My brother has mesothelioma, which has led me to expand my reading about dealing with mortality (news articles and books along with your blog, which I read long before your diagnosis). I take my lead from him on what he feels comfortable talking about, and I NEVER give him advice. His disease, his decisions. I wish I could scan your emails every morning and delete those troublesome ones. We are all very grateful for you.

Oh, this was a sock to the gut. My beloved sister, teacher, guardian, died the night before of leukemia, at about 3 A.M. In a Boston hospital. The next morning, about 9 or 1o, a well meaning fool, perhaps known to my mother, but not to me, rang the front doorbell, and I opened the door. She smiled uncertainly, and said something like,"I want to tell you about a new cure for leukemia." I choked out something, and shut the door. Oh lord...............I'm sorry you've been suffering fools of a similar sort. I only had to deal with one. Why can we not simply BE, 100%, with the one who is working through whatever they are working through? I think the person who linked it with anxiety is correct. It's often hard work to sit with someone else's hardships, as they come to what is, truly is, the best path for them. That is true compassion.
You share your truth with us, that is a true blessing. You bless us with your truth, it is a light ahead on the path.

Dearest Ronni, I am filled with sadness and pain at the thought of losing you (what shrinks call "anticipatory grief") Some people who feel this way will do or say anything
to ward off the deeeper hurt they see ahead. This is not to talk you out of your legitimate anger. But if you consider the roots of these unwelcome intrusions, it might make them easier to bear.

Ronni, your compass is true . . . I am grateful for your support and inspiration. I count you as a gift in my life.

I know this story all to well. I appreciate your speaking out on this issue. When we or a loved one is going through something so difficult its hard to be second guessed by someone who thinks they are smarter. We pick our medical team for a reason.

I’m not sure what impulse makes some people think they are obligated to share their notion of what might be good for someone else, but I’m sorry you’ve had to deal with that.
I’m glad you posted this; sometimes it’s good to be reminded of the value in keeping our mouths shut.
Blessings, in abundance, to you Ronni.

At each step of the way, you are courageous and honest.

This is a good reminder to me that people just want me to listen. I should never offer advice unless I am asked. One of the many lessons I still have to learn.

Thinking of you with love.

Bah, humbug, to "fixers" although most probably do mean well. Many of us may be tempted to grasp at straws to preserve the lives of our family and friends even though the straw doesn't really exist, and we lack the expertise to separate snake oil from a possible breakthrough. I hereby commit to double-checking and resisting any lingering "fixer" impulses I may have.

Bottom line for me: I believe that if "the fix" for cancer (or any chronic, life-limiting disease for that matter) were truly available, it would be widely disseminated and utilized by the medical community. Doctors are not omniscient, true enough, and there are many problems with our profit-driven healthcare system. (IMO, profit has NO place in healthcare.) Treatments of questionable value exist, but I'll place my bet with known science and demonstrated results every time--until the day I decide not to.

Ronni, You know best about your own body. Thank you for your raw honesty sharing yourself with us. Thanks for taking us on your path, to glimpse the walk in your shoes. You are loved.

I identify with your feelings. I have COPD and a second round of lung cancer. I find it so degrading to my intelligence when people tell me I need to fire my team of doctors and go to a cancer center. I trust my doctors, I am confident of their ability. What do these people know about any of it really? Not a thing. Love your post which allows you to get your frustration out and mine as well thru you. Best to you as you continue to make decisions based on your knowledge of your situation and what is best for you.

Mary said...
"Wow I’m the oddball here, but of course, I’m not in your shoes.
If advice came from a close friend, or friends that don’t appear to be into health food conspiracy theories or so-called natural medicine, I’d feel appreciation that they thought enough of me to care and send me some information. I’d thank them..maybe say I’ll discuss it with my Dr."
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Yeah, I'm with you Mary.  Being open-minded isn't the same as being gullible and I suspect most of us here have the capacity to sort the wheat from the chaff when it comes to advice.  I do think most people mean well when they offer it, even if it can be bloody annoying and sometimes range on a scale from cringe-inducing to horrifyingly inappropriate. 

 And it's not just health issues either.  Whenever you share any problem whatsoever with people, you can be pretty sure that a significant chunk of that population will offer you advice, it's just human nature.  It was probably an evolutionary advantage in ancient times. Maybe it still is.