The voice of many and more than living on a prayer

This urgent post is a plea to all those patients out there who are exceptional patients. Simply put, I cannot be the only one in the US and world who is an exceptional patient. I’m sure there are others focusing on living and managing their care daily instead of just reacting and waiting for a magic spell by the magicians we call oncologists.

Last week, I went full force back to the cancer job with a conversation with a doc who is going to help me get some “expert” opinions to look at my case. We found one expert at Dana Farber who I have since watched on a web call via a Twitter interactive feed. It is a modern day conference call of sorts which allows for direct live responses with the people hosting the call.  I love this new type of quick response since it allows for worldwide participation. Regardless, my demand was simple. Please don’t have an expert tell me that there are no options and waste my time because I am proof that 2 years later there are many options which worked and kind of worked. I don’t want to hear the statistics. I don’t want to hear I’ve run out of options. This cannot be an expert opinion. This doc agreed and told me how exceptional I am. She explained that oncologists should be looking at how I handle the side effects, how I handle my own care, and how I stay positive. I did mention my short visits to the island of negativity. She even said she was honored taking with me about how I have handled even my ascites wheelchair moments. I appreciated her comments and we ended the call with her hope that she has ideas for me.
Fast forward to yesterday when I had the 4 tiered Insurance conference call with the key into he secret back door of the denial stamper world. Last week,  I asked the case manager assigned to me for the denial stamper Doc’s boss name. Little did I know she would set up a call into the secret insurance world. Unfortunately, I should have had the reminder pep talk from Jim that insurance companies are FOR profit organizations which are in full support of the latest evidence for palliative care vs treatment. This latest and greatest study said that it was better to treat cancer patients palliatively vs chemo since the chemo did not give a patient more time. The increase in life time was due to palliative care. The net effect is to not always continue to treat with toxic drugs. Keeping in mind, this is not a one size fits all, but who am I fooling? In the conference call, I made my announcement of how great the current drug combo was working. This was met with I am the first and only patient to complain about the insurance services provided. I was trying to get over the fact that these denial stamper Docs were calling me a complainer. Complaining is not what I do. I make things happen and look at the facts. So, I dealt with the facts. Yes, I had 35 calls logged to the insurance over a 25 day period which included the insurance calling my internist about a chemo drug she did not prescribe. This also included 8 paracentesis procedures which had a risk of infection and bleeding that could have been avoided. Yes, this also included the black hole my denial went into so that neither Jim nor I could view this ginormous amount of money we owed to UCLA.  As the one and only complainer, I had to mention that the sick cancer patients don’t have time to complain and I am the voice of many to improve a broken process. I am also the voice of the many who have died while waiting for the stamp of approval, unable to file bankruptcy, unable to have a team of supporters or caregivers to fight their fight for their right for the drug which may help. My lists of facts continued to be met with I am “focusing on a magic bullet, living on a prayer, living on hope, focusing on medication which has no proven validity.” So, I guess my loss of 12 lbs of ascites and prior loss of 19lbs of ascites AND my current decline in tumor marker from 1000 something to 535 is just living on a dream?! This is reality, so I had to bark out that they cannot see me (or the dancing I did just over a week ago at Alex’s bar mitzvah), but my bet is that I am in better shape than all of them.
In addition, their mention was that my only real option is a clinical trial and their delightful mention was that I should focus on my end of life planning, hospice, and palliative care. I attempted to remain calm and tried to focus on the remaining facts of what could they actually do for me. Even though their impression was that all my claims were covered, I had to mention the over 4k that was being denied. Of course,this was news to them.  They were very curious about my background and thought I had to be in the medical field prior to diagnosis. Hah! Fooled them! I am a fake doctor. They also told me that I am an exception as I am my own case manager and they have never met anyone like me. At this point, I wasn’t sure whether to take it as a compliment or an insult since it was in between  their recommendation of end of life care. Not quite sure what the mixed message was except for Jim reminding me that they are in a business. My name most likely has over a million dollars of pay outs next to it with possibly a photo and an “x” marking out my face? Okay, maybe not that obvious, but what could be more obvious than end of life, hospice, and palliative care discussion especially when I had told them the current treatment was working. I also thanked them for the 24 protocol they paid for and the excellent care I was getting IN NETWORK at UCLA. There was no connection or discussion made to next steps of new treatment. After I lost one doc after almost an hour, I realized the other doc was still on the call. This was after my rant about how most cancer patients don’t really want to hear the talk about end of life unless either they are seeking that info OR they know the treatment is not working. This is really not a recommended discussion after a patient is telling them that a drug treatment is working. I still find it hard to believe that there aren’t any other exceptions to the rules. I mean ovarian cancer patients are women and women are moms, sisters, grandmas, friends and women don’t give up and women don’t wave the white flag even when odds are stacked against them. I can’t be the only one. Yes, I manage my side effects, manage my care, have a wonderful support team which extends to medical professionals. Yes, I’m surrounded by love. Here is what I have to say to all insurance people, I am the voice of many. I refuse to believe that I’m the only exception. I’m just the only one now who is “complaining” and refusing to accept the word “no”. I have always been about process improvements even before I had cancer. So, fix this broken process, stop making cancer patients stress and suffer. Cancer treatment is not a one size fits all. We are individuals with unique needs and unique bodies and motivations for staying alive. Yes, cancer is a business and a big business, but why not be in the business of keeping people alive.  I don’t want to be the exception, but want to be the norm where everyone receives standard of care and is able to manage the side effects, have an excellent quality of life AND live with cancer. I prefer living without cancer, but we have to do what we have to do. Are the processes broken? You be the judge. Well, why was my tumor marker blood test after 4 plus years being denied along with a metabolic panel blood test which is critical to every cancer patient? Am I on America’s most wanted cancer patient otherwise known as the Complainer? I still am picturing my name blown up in the insurance office with a giant comment in red pen saying, “stop the money pay outs and start her on palliative care.” So, I am living on hope, thinking I’m on a magic bullet, and living on a prayer. I guess there is nothing wrong with that as long as my treatment doesn’t cost any money. As I always say, too bad, so sad. I am going to continue my focus on living. Yes, in the back of my mind is all the reality and truth. It makes me do things now instead of tomorrow. I will stay in the now, find my sunshine, and enjoy every single moment. I will always be the voice of many and continue just living in hopes that the denial stamp will come with some thought for the next patient. Hoping they will think of me less as the complainer and more of the exception making a difference for all cancer patients. I refuse to lose my voice. I refuse to give up, ever. This call was not only a dose of reality, but when asked specifically what the denial stamper needs, I did get answers. I now have names and multiple numbers which will lead to less calls on my side. Less calls equals more time to do the things I want like walking in the sunshine. Find your voice, find your sunshine.
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