Fighting for Treatment (again)

Standard

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

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.

 

Advertisements

40 responses »

  1. I thought thatvonebof the beauties of Bruckner was that they would work with other medical teams // and vice versatile. How disappointing.

    • Just to be clear…. Bruckner’s works well with others. It’s the status quo that won’t play with innovative ideas. All to the loss of the patient. Just where do breakthroughs happen. On the fringes. Xo

  2. This is ridiculous! Do you have to videotape all your docs to be sure they keep their promises???!!! GRRRRRR

    Sending you love and strength!
    Tina

  3. Hi, Marcy – Unbelievable. But not. Like you need this stress being as sick as you are and doctors are the ones creating it. But the best revenge will be a CA125 <30 and you feeling great! Fingers xxxx'd for your continued success.

  4. Thankful that the Bruckner treatment is working for you and furious that the medical establishment, including OHSU, is not! You don’t need the added stress of having to fight to choose your course of treatment! I had a small taste of this when I won a Blue Cross appeal to have my ankle replacement surgery 7 years ago–wrote a 57 page “thesis” supporting replacement over fusion–and got out of life in a wheelchair. Small compared to your struggle, but a taste of the frustration and dysfunction of our corporate medical system. Sending love, strength, and hope to you, dear one. Jeanne & Kae

  5. So glad about your decreasing numbers but also furious about the red tape and resistance on the part of OHSU. As your friends above wrote, we also had a bit of this when I had surgery in Syracuse, NY and chemo in Oneonta, NY. They just could not communicate then and still cannot today. Anyway, the fact is that you are doing better and that is what matters, May it continue!

  6. Many curse words!!! It sometimes seems that the medical industrial complex is riding high on people’s suffering — and forgets about caring for the people. Can we do anything? Picket? Petition? Write letters to ????

    So glad you are responding to this unorthodox treatment. Hoping hoping hoping it continues to work. xo

  7. Marcy, my dear cabin-mate, thanks for documenting your experiences with the medical snafus a person must tolerate. It’s so easy to see why many people never get to the place you have. In your short ovarian cancer history you’ve been able to leap tall buildings because of your research knowledge, ability to debate an issue with professionals without sarcasm and determination that there is more than one way to battle this cancer.

    But for so many of the rest of us, we accept grim news as ‘no other choice’ and die without ever knowing there could be options. Thank you for fighting this for yourself and so many of your sisters.

    Would matters be easier in any other country?

    BTW before this plight consumed your entire being, what was your profession?

  8. I would indeed wish for you relaxing moments to help your body and your spirits recover between treatments, and I’m sorry to hear that you’ve had to waste your energy on fighting the system instead.

  9. Thank you for telling us about this Marcy. I am so furious at OHSU! And stronger than that is the joy I feel at the news of your decreasing numbers and that you are doing better!!

  10. Marcy, I am so, so sorry to hear of this situation at OHSU. My thoughts are that probably when you first talked with your oncologist at OHSU it made sense to her as your insurance company was covering it. But now for her to turn around and said she never said this, etc. must feel like an incredible betrayal. My heart just breaks for you right now. Without a doubt, your case has probably been reviewed by OHSU’s legal department and the decision was not to take your situation on. Unfortunately, your doc probably should have checked into this much further before telling you that OHSU would work with Bruckner.

    Have you thought about contacting Fred Hutchinson Cancer Research Center up in Seattle? FHCR is internationally known as one of the world’s leading cancer centers. They were one of the very first instituions to get involved in immunotherapy early in 2000. And they are still very active in immunotherapy research.

    The woman who heads their Gynecologic Oncology program (Dr. Barbara Goff) is also the president of the national Society of Gynecologic Oncology. Perhaps she could be a good resource for you……and who knows, maybe FHCRC would be willing to collaborate with Bruckner and administer the Bruckner regime to you since FHCRC’s primary focus is innovative cancer research. Just a thought.

    • I am a fan of Dr. Goff and have met with her. All big campuses support THEIR research and the huge funding that comes with it. Their is one doc on the campus that is a low dose cocktail champion. A visit to him might happen down the road. Thanks for the lead. What I really need is a small practise (there are not many) that is able to be flexible.

      • I’m glad that you are familar with FHCRC and Dr. Goff. Sound like the doc in Seattle who is a “low dose cocktail champion” might be a good match for you. But, I understand completely the politics of medical research..I worked for close to 20 years in women’s health/public health research and have seen it first hand. However, IMO, you are doing absolutely the right thing……not backing down and advocating for what you need and want.

        Just to make sure that I understand completely. Your treatment plan with Bruckner is covered by Medicare if you commute to NYC every two weeks. But you can not find a doctor/medical center in Portland that will administer the same treatment plan……that is covered by Medicare in NYC? If you could find a doctor in Portland, would Bruckner be able to send this “low dose cocktail” to the doc/medical center in Portland so that all they would have to do is provide the infusion? If so, then I don’t understand the docs in Portland refusing to do so!

        I entirely agree with your friend about getting your situation out there…..via Facebook, Twitter, the Participatory Medicine website, anyone you can think of!

      • All the drugs used in the cocktail are FDA approved. so any infusion site can order the same drugs and already are using them just not in this way. 3 of the drugs are routinely used for ovca, two are more traditional colo-rectal drugs. Whoever orders them can be reimbursed by medicare because they are FDA approved and off label use is allowed. Yep, OPHSU could totally do it. And as I noted my doc said this combo while unorthodox, sent up no red flags to her for compromising my health. In fact, the theory around it – the combos allowing lowered doses thus saving my body some wear and tear, made sense to her. She ONLY changed her tune when pharmacy denied it. Liability issues took over.

  11. Thanks for sharing your update, Marcy. I am so happy that the Bruckner protocol is having an effect on your markers. How disappointing that the medical system is not coming through for you. We had a pretty terrible time trying to work creative ideas into my mom’s treatment plan through Kaiser – pretty much impossible, actually. There is so much stuff out there to try! Your perseverance is an inspiration.

    Nedra W.
    http://livingwiththedying.com

  12. I’m so sorry to read about this mess, but I am a little bit confused. So, the center in NYC is providing the care, and your insurance is paying for it, so why does it matter what OHSU says? Either way, I certainly hope this treatment keeps the cancer at bay for a long, long time.

  13. Marcy, I am so sorry that you have/had to contend with such bs, particularly as you are in the fight if your life. I agree with an earlier comment, wow. You have taught me so much they your shares, your writing, and with every blog I read I love you more! I also had a good belly roll Re: the redhead/Aries comment. You have been close in thought and prayers. Thank you for sharing all that you do. You are truly a beautiful, courageous person. Smiled when I read your ca125 is plummeting! Woot woot! Hang strong Marcy! We, your readers, are rooting for you. God Bless you!

    • Marcy, I work diligently on my faith and believing everything happens for a reason. Easier said than done. When my diagnosis was missed, and I fought for a biopsy, my dr and the radiologist said “well okay, but it will most probably be benign”. 5 women in this small town hospital went in for biopsies that Monday. One came out malignant…moia. The “breast specialist I was seeing (and who missed the dx) did not agree that I needed to go to a larger cancer institute. Well, after saying the “f u”‘s to him, I drive myself to Boston weekly for treatment, four surgeries and hospitalizations for complications. Not only had he missed my dx from mammo’s, but also the existence of a second cancer/cell. My point? I show my face in his office every now and then, always polite, always with a smile, and I drop by radiology as well. Sometimes they are “too busy” to see me, but that’s okay. My name alone serves to remind them both that had I not fought for the biopsy, the rights to have my treatment in Boston, if I had listened and followed their advice blindly, I would probably have not just celebrated 5 years cancer free. I show my face and keep my name in their memory not as a reminder if their mistakes, but to help other women who will come to them for care. They deserve the best care, and they deserve to be heard. Your name, your plight Marcy, may and undoubtedly will help and perhaps save the lives of others. Such an impression you have made on me and I’ve never looked into your eyes. Trust me, they will not soon forget you and as a result of this, hopefully others will be treated better than you have been. Xo

  14. Marcy, my first and overriding impulse is to protect you, your body, and your time with your precious family (writ large). My second impulse is to expose your plight to the world and point some fingers at the blameworthy. Would you let me post some excerpts and comments on the Society for Participatory Medicine members forum? I promise not to send any more stress your way. Even if nobody can find a way to provide meaningful help – I’m only a day out of surgery myself – more eyes than ours should see what you’ve written.

    Much love.

  15. Your ability to articulate what is happening to and with you during the discomfort and pain you are enduring is a gift to everyone else who is facing these things. I respect the gift that you give us all. With love, Adele

  16. Happy to hear about your positive reaction, but angry, too, that you have to battle for the treatment you require. Stay strong. Our thoughts are with you.

  17. Marcy, I don’t know if you know that I have non-hodgkins lymphoma (25 years now). I’ve just had my second recurrence and so am also in the belly of the medical industrial complex. I was misdiagnosed in the first recurrence, and again in the second. Just want you to know that I share your frustration. So sorry to hear of this struggle you are having. Sending love, Jean

  18. Unbelievable, Marcy! So sorry you have to spend your recovery time fighting again. Sending strength and love – Abby

  19. I read your whole page and feel a deep sorrow and connection. I am still stuck on the title of livinglydying. What does that mean to you? Does the meaning change over time? Why those words in that order? I feel that you are dying lifefully.

  20. So often people focus on the wrong things at the wrong time and forget that what is at stake is the life of another sentient being… It makes me wonder if these folks have ever tried “walking in the other persons shoes” ? I think not. I’m glad the treatment is showing positive signs Marcy and hope that continues. You are an inspiration.

  21. Thank you for posting this, Marcy, despite how frustrating it must feel just to type these words.

    First of all, the progress you’ve made is very hopeful – well done! As with other things in life, “past performance is not a good indication of future outcome”, but these are steps in the right direction. Hopefully the progress will continue and we’ll be here to read all about it.

    Second, on to the other fight you are fighting, the fight you should not be fighting. Reading the story thus far, we can only imagine how it feels. It is very disappointing that the healthcare system is not helping your real, actual, big fight. Sometimes it feels as if everything around us is set up to prevent us from moving forward.
    However – you are doing the right thing in taking matters in your own hands. You are also doing the right thing posting the details on your blog.

    Please keep us posted and let us know if we can help in any way.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s