Fighting for Treatment (again)

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)

OHSU Opulence

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.

 

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Cone of Happiness

It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4^th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8^th, Aphereisis #1 completed on May 22^nd with my starting round of treatment June 5^th and 6^th of 2013. On March 12th and 13^th 2014 I completed my 15^th trek to Philly and my 11^th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10^th. The Internet told me a pericardial effusion was a bad sign. On April 17^th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

New To Do List

Happy Holidays!

It’s December. Happy Holidays! I hope you are all well, enjoying the days of darkness and the promise of rounding the bend back towards more light with solstice.

My life is peaceful which I adore. I continue with my weekly chemo infusions, now over at OHSU which I refer to as my spa. It is a warm space to spend time – so much so that I rather enjoy my weekly ritual. The low, steady chemo dose approach is much easier to tolerate and even the projection that I would lose my hair seems unlikely. It is thinning (and I leave a trail of hairs as I move about) but not so much that I fear being bald. Small victories that I relish! I have added in fasting before and after the chemo in the hopes that it saves my good cells and targets my cancer for the toxics. Who knows. Each effort I make adds to my sense of possibilities.

Being a patient at OHSU is wonderful. It’s vibrancy exudes hope, whether for you or the next patient, but you can feel the hum of progress. I now get to experience a health team that is fluent on MY CASE. They seem to have systems that allow them not to appear wasted from an overwhelming workload. They are cheery and aware. And treat me like a colleague as well as the patient.

A favorite moment being when they asked me something about my confidence in the current treatment plan. My response included the intent “to be around until I am 72.” The doc turned to her computer without pause and said as she typed, ” well, thats a pretty important goal to get in your chart.”

I am moving towards testing with the exact dates yet to be set. I had hoped to stall until after the holidays but that may not work. Luckily, my blood tests indicate that I am responding to this chemo, although I need to remind myself that in this long 15 months of progressing while on chemo, my blood work showed I was responding, and I was. It’s just that I was also managing to grow new cancer. But with a 10 cm tumor surgically removed in October, the hope is that I have a head start this time.

The vaccine trial that we are trying to get me fully accepted in to awaits. Vaccines best hope of working is with patients that have a very low amount of visible tumor, ideally none. They are not equipped to disappear existing tumors. Their goal is to re-calibrate my body to be able to fight off future cancer deformities as they happen – like is happening in the bodies of the rest of you that do not have cancer growing. (Yes, you too have cancer, your bodies just evict it.) My intent is to go to UPenn regardless of what the scan shows and argue my case. That will likely be in mid January.

A hearty thank you to all who humbled me by attending my Livingly Dying reading on November 15th. It was lovely to see a standing room only crowd. My apologies to those closest to the door who stayed despite not being able to hear!

much love, marcy