Vignette Two – Nothing Compares 2U

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As promised, Vignette Two – Compass Oncology – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.

The great singer Sinead O’Connor launches into her 1990 heartbreaker Nothing Compares 2U counting down, “It’s been seven hours and fifteen days”. I always loved that opening. Since leaving Compass Oncology July 30th at 1:30 p.m. that fragment has frequented my mind. There was no romance involved with my heartbreak. It was a purely dispassionate reminder that the medical industrial complex only wants to prolong my life one way – their way. 

But you judge as I recount.

As soon as I choose the Bruckner Protocol, my team not only took on the task of getting me into this NYC clinic but also took on scrolling for prospective local providers to partner with the protocol. While we awaited OHSU’s determination, I asked around for oncologists who were either creative or in small private settings. We needed low red tape. Compass Oncology met neither of those criteria but several people pointed to the same doc as “prioritizing what the patient wanted” and no other names were offered up. So we gave him a try despite reservations – we hoped by being very, very clear we could avoid wasting resources.

Friends worked with the new patient administrator to clarify the sole purpose of the appointment, a local doctor to administer this protocol, and underlined that given my current travels and treatment I did not want to fit in an appointment with a lukewarm prospect or a dead end. I only was willing to meet with an interested doctor. (Am I repeating myself enough?) We checked in regularly to make sure that all the clarifying paperwork was in and reviewed in advance. The new patient administrator was great and reassuring until the final week. She confessed all she was doing to meet our reasonable demands but expressed doubts that the doctor was paying attention. The day prior, she called to say the doctor had pledged to call me that day with any questions. I stayed home and waited. No call came. The friend accompanying me wanted to know, “are we on?”, I gulped and said, “yes”. She arrived to pick me up at 10:15 the next morning.

The receptionist greeted us with over 20 pages of paperwork that I refused to fill out, saying, “I am here for a yes or no. If I become a new patient I will fill it out.” The new patient administrator was called in to back me up. I now had a clipboard of only three pages to fill out. I thought about the ever-expanding marcy westerling medical forest

clear cut for paperwork never to be read

clear cut for paperwork never to be read

being clear cut in my honor – a clear cut I could come to terms with if any health care provider had ever proven to read the reams of pages they demand. Sometimes I entertain myself by leaving pages blank – no one ever calls me back to fill in the blanks. Never.

My friend and I return to waiting. We watch a YouTube of African cocoa growers being introduced to chocolate, the product they make possible, for the first time. It helps five minutes pass. But then I am out front of the building pacing the in fresh air that gives me calm – even if the fresh air is in a large parking lot on a busy street. I create a pacing grid keeping me near the entrance. My pedometer will tell me I pace for over a mile while waiting. We are called in, put in a typical small, airless room to wait. I open the door, pace the hall both to observe and calm. I watch three women at a counter chatting. I decide to engage. “When do you think I might actually see my doctor? It’s been quite the wait.” They all rush to aid but of course have the non-answers of the system, “oh, he must be on his way.”

Eventually, a cheerful young woman arrives to review. She starts off poorly inquiring about a doctor I haven’t seen in years. This would be the pattern for the next hour. I was not nice. I said, “hmmm. I wonder if you have found the health summery that clearly shows who are my current doctors.” I then clarified, again, “I am here for one reason and one reason only and that is to hear if the doctor will do a specific protocol. It is a yes – no situation.” She left and then sent in the next woman who spent the first five minutes shuffling papers in her lap but at least in an effort to drill down to the topic at hand. Clearly no pre-work happened. She avoided eye contact. I was now a problem patient.

Her questions once started were mainly relevant; although she too was convinced doctors and systems of year’s prior were still treating me. Whatever. I moved her to 2014. I moved her to the protocol. There was a lot of silence as she studied the simple sheet of documentation. Her questions got smarter as she focused in. She might not have done homework but she was a quick study who wasn’t sure she liked what she saw. She said, tell me more about this clinical trail. I told her it was not a clinical trail. She insisted it was. I insisted it was not and three minutes were lost with the back and fourth that ended in truce not resolution. Then she decided it must not be legal. I assured it was, that all the drugs were FDA approved and covered by Medicare. She disagreed. I said it was off label use, routinely done. She assured me it was never done. Sigh. This was getting old. I switched tactics and asked her to look at how healthy I was, the robust lab results and the declining ca 125, perhaps, my body could provide testimonial. She conceded my point.

She left the room, we returned to waiting, me back exploring the boring hallways that make up every medical facility I visit.

The doctor arrived. He entered and immediately informed us he would never do the protocol. What perfect clarity for yesterday! He informed us I have recurrent ovarian cancer and it runs a certain course. Yes, I concurred, why did he think I was being so creative in my treatment options? He then proceeded in his own go round of why Medicare would never pay for this; my facts were entirely not relevant although I repeated Medicare was already paying for these treatments for me. I was ready to leave. My friend had given up a half day of work. The doctor closed with my favorite comment, “As a quality of life issue, you should not be flying back and fourth to NYC every other week for treatment.” OH MY GOD – this is exactly why we were in his office. Agreement and rejection in one farcical visit.

This doctor and this agency had every right to reject my request for a certain treatment. In fact, we anticipated it and thus requested they skim the few pages of data and give us their first instinct opinion. If it was a likely no, no need to proceed. We met every one of their requests for endless paperwork. They clearly understood their own staff’s repeated request that they review in advance. In the medical industrial system, those in power nod their heads agreeable, and proceed with the endless bureaucracy that ensures they can bill and the patient’s have a new hobby – sitting in waiting rooms.

By the way, the greeting for patients on the Compass Oncology website  states, “The experts at Compass Oncology are here for you every step of the way with answers, support, compassion and respect. We understand cancer treatment is a highly personal journey, uniquely different for each patient. It is a journey filled with many decisions and potential directions. For decades, the physicians and staff at Compass Oncology have been united by a singular focus: to help our patients find a clear path to hope and healing.”compass-footer-logo

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32 responses »

  1. I’m sorry…. no other words to say.. wish I had better words 🙂 The medical world is a frustrating place to be and dying is much more difficult and well…. a pain the a** than it needs to be. I get where you are coming from… you want to be heard and carefully considered. A no answer was okay but there was no reason to drag you around before giving you the answer. Keep blogging…. you are making a difference by spreading the knowledge of what it is like to navigate the terminal medical world.

  2. What a waste of time for you. Unfortunately, this is sort of common in medicine. As soon as you try to ‘color outside the lines’ they want no part of moving the lines. It’s a shame. But it’s a comfort zone thing, I think. I know from 20 years of nursing that it takes a lot to shift the paradigm. And that’s a big part of why I’m no longer a nurse. (I gave up in 1988.) There have to be doctors out there willing to do something different.

  3. Oh my god these people are insane. How can anybody be ok colluding with this kind of system?????? It is dehumanizing. Grrrrr. I’m sorry Marcy that on top of everything you have to deal with this crap. Thank you for sharing your story. In my small hospital experience I had much smaller injustices but along the same lines. Struggling (physically, crazy) with a nurse who insisted I needed a wheelchair when I found out the baby’s heartbeat was not good but had already been walking around likely for days that way. Ok, love you, I’m in your corner. Amanda

  4. My God Marcy. What a farce. Sounds so much like the Canadian medical system, except the oncologists here would tear a strip off both sides of you for not going to Sloan Kettering and choosing instead an oncologists whose protocol was never written up in a peer reviewed journal. What patients go through who just want to live!
    Warmest hugs,
    Laurie

  5. Words fail…what an utter complete waste of time and it didn’t have to be this way. To say I’m sorry this happened doesn’t express my outrage that it did…I am though sorry…and I wish and pray something better, soon, for you.

  6. Oh Marcy, this is awful! I hope you find someone to help. I would hope in the crunchy NW there would be someone. Love and hope to you!
    Tina

  7. So incredibly frustrating just to read about let alone your experiencing it! So sad for this outcome. I know you will continue on doing all you can to help yourself….fighting the good fight as you have always done. I love it that sometimes you leave a whole page blank and they never ask you about it! I might have to try that myself…..an entertaining bit of “civil disobedience”. Thanks for continuing to blog and stay connected.

  8. What is their oath? “Do no harm”??? This is HARMFUL. Dreadful. Disrespectful. Infuriating. Now I need to go for a walk and get some air! -Annie

  9. Frustrating, but so real, especially the final close about their concern. You have to keep battling to make sure there is a really caring physician ready to listen and exhaust all options.

  10. and we keep hearing how we cancer patients are so empowered. Sucks big time. Wish I could take all the emotional pain you continue to experience and crush it to shreds.

  11. I wish I were surprised to hear all this. It is at the same time shocking, and yet utterly par-for-the-course. I’ve been through similar situations a few times, and it really leaves you wondering how we manage to innovate at all, with our strong human penchant for small-mindedness and bureaucracy. Sigh.

  12. What a horrible way for a facility dedicated to treating cancer patients to deal with you. They definitely needed to read the documentation you provided. It sounds like they could have done everything in advance and just responded to you with a simple phone call. How unprofessional! So very sorry that you had to go through all of that on top of everything else. You deserve better! Hugs my friend.

  13. If our medical system paid docs to review medical records without requiring the patient to be there, I’ll bet that doc would have provided the answer you needed before making you waste your precious time and energy coming to see him before he reviewed your records. It’s outrageous that he didn’t have the decency to have staff inform you that he’d review your records only with you present in order for him to bill insurance for it. Instead he prioritized his time and pocketbook over a sick patient’s even more precious time and energy and need to avoid stress to promote recovery. Navigating our medical system is not a healing experience. I’m so sorry you’ve had to be in the midst of it for so long now.

  14. Omigosh Marcy, I’m so sorry you have to go through this BS. Your experience highlights exactly what is wrong with our healthcare system. I really hope you will find a doctor soon who will agree to use this protocol. Ridiculous that you have to use your energy this way.

  15. Marcy . . . frustrating, heart wrenching, aggravating beyond compare. I so appreciate your writing this and feel helpless but want so badly to help. OK, is there a Plan B? Can Dr. Bruckner suggest a practitioner in closer proximity perhaps? (I’m sure you’ve already thought of this.) I am wishing you peace and belief a solution will come to light.

  16. So let me see if I get this: filling out a mountain of paper work with every visit to a new doctor, is not optional. However, it IS optional for the doctor to read it? Ugh. This problem is so bad it even shows up as part of a TV commercial for a local health care mill…um…facility. Marcy, I do hope that Sens Wyden and Merkley are receiving your blog. It is such an eye opener, especially for someone in a position to actually DO something about it.

  17. Damn the bureaucratic red tape. I hated reading this. I wish the people who institute all of this nonsense would just once have to empathize with someone in your situation. Maybe then they wouldn’t be so hard-assed about it. Reading this did leave me with a question. Have you ever consulted the Cancer Treatment Centers of America? I see their commercials a lot but I haven’t known anyone who can attest to their success? Best wishes in your continued fight!

    • I don’t have much trust in CTCA. They don’t accept medicare, which seems quite wrong, and while their patients do enjoy the care they get, they don’t seem to live longer but do die broke. Cancer is quite the big business right now. Just note all the full page advertisements wooing patients. That could be our power for change. Voting with our feet.

  18. Marcy, I continue to be with you in your struggle. Took a few days to calm down before I could even write… will keep trying and holding you in the light for a successful breakthrough and continued strength.

  19. Marcy, I admire your calm in this struggle. I’m sure I would be totally beserk were I in your shoes. Much love to you. Bill

  20. I am so sorry that you and so many others have to go thru this – that this is what our health care system has to offer. I am heartened that you’re willing to tell your story. There has to be some good come from that. I am currently looking into a trial for a family member. I will pass on contact info for the person I’m trying to work with. I love you, dear Marcy.

    • Marcy…my heroic friend, who I love and respect so much. Thank you for your courage,your acknowledged anger/fear and amazing stamina and willingness to fight for your life. When I get discouraged over some petty thing like how to pay the bills, I have made a habit of thinking of you.

      You have REAL courage, and I do much to stay grateful for my own blessings. Thank you.

  21. Hi Marcy, I guess the tune we should be humming is they did it their way.
    So sorry and been there and done that but never spoken as elegantly as you have.
    Diane

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