It’s not an easy thing to do. To write to everyone you know and tell them you’re dying.

But that’s where I stand. That’s where we stand, if you’re with me. And you’re reading, so I know you’re here.

I found out a week and a half ago that the panitumimab, our last conventional therapy, just isn’t working. Despite the treatment and the side effects, I have tumors that now take over large portions of my pelvis and abdomen.

But what about the trip to Ohio and possible clinical trials? Well, I haven’t heard back from them just yet on anything and my oncologist at MD Anderson thinks that I’m too far over the line to travel for…

Last I left you I had just returned home from the hospital. The surgeon had taken some small intestine out where it was obstructed and re-attached it in a way that would hopefully alleviate the problem. He also removed a fair amount of tumor to help keep those at bay while we search for a treatment that works.

After healing a bit, I was to try a type of chemo that works differently than traditional chemotherapy. I won’t get into the specific science in this post, but anyone who is interested can Google “Cetuximab” and learn a bit about how…

On Friday, March 10 I awoke at about midnight-thirty with a very familiar sensation. Every one-to-five minutes I would have 30 seconds-to-one minute of profound abdominal pain. The kind of abdominal pain that’s so sharp and so totally consuming that I was afraid my intestines would literally pop (well, the medical term is perforate). In between these moments of blinding pain the world was filled with waves of nausea, chills, and sweats.

Within ten minutes of being jolted awake by severe abdominal cramping, my gastrointestinal system began running itself in reverse in an attempt to alleviate the pressure building up…

Dear Tech Support,

I’m running Human Body v32 and I’ve been running into all kinds of problems lately. It seems I somehow downloaded Cancer 2.0 back when I was running Human Body v31. This seems to be due to a firmware vulnerability that resulted in Crohn’s Disease 12.0, allowing Human Body to download Cancer 2.0.

I thought I had originally fixed the problem when I wound up with Cancer 1.0 while running Human Body v27. To fix that, I ran Chemo 1.0, updated to HB v28, and typed “_&fuckcancer://” into the command line. Seemed to do the trick.

Cancer 2.0…

Photo by Laughlin Elkind

I know it’s hard. Someone you love — or maybe even just a colleague you sort of know — gets sick. Not just any old kind of sick, but really sick. The kind of sick you can only imagine. You want to say or do something but you don’t really know how or what.

Here’s a list of some Dos and Don’ts I’ve experienced along with a few tips to help you know you’re doing it right. Let me also start by saying that if you’ve done any of the “don’ts” to me, I am in no way offended. I…

Working with Health Net is Worse than Chemo Part VI

— If you want to catch up, you can start back at Part I, or you can check out the timeline I’ve created. —

Today is May 6th. My son is due on May 9th. Chemotherapy and radiation were not as successful as we would have liked. Now I need major surgery and more treatment.

Also, I just got a bill from the Mayo Clinic for almost $17,000 and a final notice from Clinical Pathologies for about $200. These bills are for services rendered in August and October of 2015.

I have a direct line to Larry Wong, VP of…

Will You Be My Super Sidekick?

As a double cancer survivor — and as a person who lives with Crohn’s Disease — you’d think that my hardest fight would be with illness. Not so.

My hardest fight has been with my health insurance company. As I’ve been fighting, I’ve heard a lot of people tell me that they have had to fight their health insurance company just as hard. This is unacceptable.

Through and intense barrage of chemotherapy and radiation, a mild-mannered cancer patient becomes…THE DIGITAL CHAMPION

So here’s what I’m doing about it:

  • Today I’m launching THE DIGITAL CHAMPION, a website where you can share your health insurance nightmare.
  • We’ll use that information to identify the biggest problems in our health care system.
  • Together, we will discuss…

Image via Creative Commons from Enric Garcia Torrents.

A lot of people ask me how I’ve been able to do what I’ve done. What is it I’ve done? I’ve used social media to become an extremely effective self-advocate with my heath insurance company. I have a direct line to the VP of Customer Service. He responds to my emails the same day.

This article assumes that you have an online audience already. Future updates will explain network-building strategies.

It’s been a lot of hard work but here are 10 of the steps I’ve taken.

1. Make sure the injustice you’re fighting is real.

Is your cause something that really matters? If you don’t know, ask your most…

Psst. Health Net. Your incompetence is showing again.

Hi, my name is Aaron Bramley and I live in Austin, Texas. I know we’ve only been working together for 2 years, 3 months, and 2 weeks but I think it’s time we’ve finally met. Don’t worry, this envelope only contained super sensitive personal information about my medical care for the last two years…

W e left off in Part IV with me waiting for a letter to arrive from my insurance company. This letter would—supposedly—fix the errors that the VP of Customer Service and his team have identified in my case.

We didn’t get off to a great start. I received digital correspondence from a secure server that informed me that Larry Wong had written to me. I clicked the link in the email to get to the message. I got to a login screen where I entered my username and password and clicked “submit.”

I arrived at a blank page.

I left the Google Chrome web browser and…

In which Jay refuses to show, Larry is a disappointment, and Health Net’s Media Relations team stalls the press

In Part I, I set up a 2nd meeting with the VP of Customer Service at Health Net, my employer’s Health Insurance provider. In Part II, I invited CEO, Jay M. Gellert to that meeting. After Part III, I was informed that Larry would be taking over my case entirely — the 4th lead contact I’ve had in trying to resolve these issues.

I never heard back on my invitation to CEO, Jay M. Gellert. While I can’t say that I’m surprised, I am pleased that Larry Wong, VP of Customer Service, did call me at the exact time he…

Aaron Bramley

Equal parts communicator, do-gooder, mad scientist, early adopter, and teacher. Digital Media Director at #RidgewoodPR, Co-founder at @NPFilm and @TXFreelance.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store