First of all I really appreciate what you laid down here. I may just be looking in the wrong places but it's hard to find doctors talking shop about what life is like 'on the other side of the table'. That alone would help me move out of pure speculation and into more of an informed opinion about what is going on and how i can be more successful in navigating it.

I'll freely admit that I could be self-serving in this. I didn't call into question the legitimacy of what I was seeking, only the response I got. Without dragging you through the whole process I'll say that I spent a year getting educated as best i could and 5-6 months gathering information on four adjunct therapies that I wanted her oncologist to consider adding to her existing plan. The two primary ones were this one (IVC) and the use of metformin to help manage her slowly elevating hyperglycemia. I wasn't forceful, I didn't 'sneak anything in' and I tried to avoid any outright conflict because my wife loved her doc, and I do believe her doc loved her.

As far as me being wrong, it's entirely possible, but I don't believe we're seeing my argument the same way. I do believe you care, and I do believe my wife's doc cared for her. Hell her doc cried more in our meetings than my wife did. But I care too, and while I'm not a doctor I'm also not a fucking moron. I'm a reasonably intelligent person that is tremendously invested in ensuring my wife gets the best care possible and that we maximize her quality and quantity of life as best we can. I easily have a thousand hours of crash course research and self-education into the underlying molecular genetics and microbiology...which granted pales in comparison to what MDs have, but it's not mommy blogs. I also educated myself on the various historical treatment approaches for cancer, why they went out of practice, present day standard of care and reviewed applicability and inclusion/exclusion criteria for hundreds of clinical trials around the world. I spoke with about a dozen principal investigators and 30-40 trial coordinators from MD Anderson, MSK, Johns Hopkins, Cleveland Clinic and a couple hospitals in the Netherlands and Germany. I had conversations with numerous drug and device manufacturers and actually got access to a few off-label drugs through Care Oncology (never used). I brought everything I thought would help my wife to her doctor and got zero consideration in return. No explanation, no real research into what I was suggesting, just 'not standard of care' and handwavey concerns around potential negative impacts to her therapy.

Why did I get this result? It's entirely possible she seriously considered what I asked for, maybe she spent a whole week doing her own follow-up research on my suggestions and came to the conclusion that we arrived at, but fuck me if it didn't feel like anything more than a dismissal with prejudice.

So I'm trying to find a way to reconcile that behavior with what I do feel was her care for my wife. And the only thing I can come up with is that the system she is operating under doesn't allow for her to take any risks...regardless of the patients willingness to do so. It's also possible that she's just scared that she's already on a razor's edge and anything weird coming in will not work in my wife's favor. Goes back to my fear statement, but in a different way. That said, sometimes you have to leap to survive, my wife's doc never leaped, and my wife did not survive.

About two years ago I started punctuating stressful work meetings with 'come on folks, we're not saving lives here'. It never occurred to me before to be honest, but i started out of respect of the decisions that I saw doctors making every day in my wife's care and the care of others. It's not an enviable position in my eyes, kind of hard to win when you're in oncology, and I do appreciate the fact that people sign up for it every day. I just want to get some of these bugs out of the system and empower people to have some agency in their own care. Maybe it doesn't work out, but at least they have the option to try.