When my cancer surged unexpectedly in early June, I re-oriented my psyche for a physical battle. I had never before had such a high volume of cancer nor felt it with every move and it had showed up with such speed, in just 45 days off of treatment. With surgery removed as an option and my track record of not being super responsive to chemo, I knew I needed an aggressive plan or to be content with starting a more active stage of dying. I chose the former – the Bruckner Protocol. I had bookmarked this protocol over a year prior should I be in this exact circumstance. Within a week of contacting the Bruckner Clinic, they had reviewed all of my paperwork, engaged in salient back and fourth conversation (often after-hours between me and the actual doctors) and scheduled me for an intake visit and 29 hours of chemo. My first chemo cycle happened within this first week!!!!
The Bruckner Protocol is a minimally documented or published regimen with limited longitudinal data. (The doctors are focused on doing versus writing up – the data awaits compilation and presentation.) I fly cross-country to receive the treatment in their clinic. I made the choice based on being a highly informed, extremely motivated terminally ill patient. I wasn’t sure this protocol, or anything, could keep me stable, but I knew this protocol had a higher possibility of letting me return to stability and a shot then of staying stable with other treatments. It was my best hope.
My most trusted peers affirmed the decision. It was bookmarked in their “last ditch” file as well.
I have now had 3 rounds of my 29-hour, every other week NYC based infusions. My tumor marker is in steady decline. I fly back to NYC next week for round four.
A full 50% of my life now goes to travel to NYC, infusions and recovery. In the other week, you might wish for me as I wish for me, relaxing moments with friends and family but no, you would be so, so silly. My good week goes to full on battle with the medical industrial complex. I did not select this battle. I am merely seeking a local doctor who will follow my treatment request and give me the Bruckner Protocol, which uses only FDA approved drugs. Apparently, patient’s rights do not included allowing a dying, informed patient to present an obviously working, out of the mainstream choice.
Let me give you, dear reader, a few vignettes to illustrate the perverted life of a patient fighting to stay alive through the end of the year.
Vignette One – Oregon Health Sciences University (OHSU)
I have made clear in prior posts my love of OHSU. While I wonder at times what it means that they are such an opulent campus (who is paying for this?), I enjoy the vibrant energy, art-filled, green-filled spaces that buffer tough treatments with distractions. They are a public, non profit who in their own mission statement claims, “Setting the example for integrity, compassion and leadership, OHSU strives to:
- Educate tomorrow’s health professionals, scientists, engineers and managers in top-tier programs that prepare them for a lifetime of learning, leadership and contribution.
- Explore new basic, clinical and applied research frontiers in health and biomedical sciences, environmental and biomedical engineering and information sciences, and translate these discoveries, wherever possible, into applications in the health and commercial sectors.
- Deliver excellence in health care, emphasizing the creation and implementation of new knowledge and cutting-edge technologies.
- Lead and advocate for programs that improve health for all Oregonians, and extend OHSU’s education, research and healthcare missions through community service, partnerships and outreach.
June 13th, I got my devastating scan results and a phone call from my OHSU doc assuring me, “we will fight this.” That afternoon I emailed her the first of many detailed emails explaining why I did not want to accept her treatment proposal but instead requested that she partner with me in utilizing the Bruckner Protocol to beat back this cancer volume. I sent her the links to the clinic as well as all available papers on the thinking and delivery of this protocol immediately. It was a complete introduction to the clinic. I thought OHSU’s mission might make this an easy match.
Given my arduous treatment schedule, I insisted that her office wade through the materials prior to me coming in for an office visit. After all, a visit should be based on their agreement to use this protocol because I have already made my decision. The office staff kept asking for more information and finding new red tape that needed to be worked through. They were attentive. We were responsive. Finally, it was time for the office visit. It was short and upbeat, with the doctor arriving, asking if Medicare would pay? I said, “yes.” She said, “Oh, well, then this is a no brainer.” She then explained why she had no reservations with the protocol even though it was atypical. She felt “the doses present a tolerable risk.” We spent the remainder of the office visit with her recruiting us to a fundraiser. We left light-hearted – we had done it! We were back at OHSU!
The next week I returned for a final visit to Bruckner Oncology. The evening of the first night of treatment, I got a message that the OHSU Pharmacy had met and rejected the protocol finding the documentation too limited (it is limited.) By the next morning I was wretchedly sick and the clinic had a heck of a time stabilizing me. Bad news, travel and poisons don’t mix very well, it seems.
The saddest part of the rejection came that Friday morning as my OHSU doctor, a wonderful, compassionate doc, left me a voice mail disclaiming any endorsement of the protocol, calling it “crazy” and asking me to return when I could document its efficacy. (Obviously, my rapidly declining ca 125 not counting.)
A research facility requiring documentation for a treatment is entirely reasonable. To ignore the material presented and waste 45 days of a patients time by skimming and not processing what is provided, that, dear reader, is wrong. Maybe what I am doing is crazy. But the deciders could have decided that June 13th when I provided them with what there was in terms of documentation. They failed in their job. I did not fail in mine.
Vignette Two – Compass Oncology coming soon – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.