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March 25, 2014

Frustration; the patient’s story

First, the surgical center incident:
Arriving at the surgical center, I make my way to the intake department to complete pre-surgery paperwork. The instructions are to sign your name and/or initials to concrete your agreement with each accompanying statement, on the lines an intake worker, at the medical facility, has graciously highlighted. As a southern woman would say – Now isn’t that sweet. Let it be known, I read each word appearing on every page. I cross out verbiage I am not in agreement with, clarifying statements to the pre-written verbiage, and typically leave several items absent my signature or initial; what resides in the cleverly highlighted space is a diagonal line, or what I refer to as the – Nope not this girl! 

After returning the completed paperwork, there begins to be a flurry of activity behind the intake counter – from nurses to supervisors. Occasionally there is a break in the conversation as confused and flustered individuals pass interesting glances and stares my direction. Often I will not prolong their agony – I will approach the counter and make an inquiry. This is how it went during a recent visit:

Me: I there something, I can help you with? *I brace myself for the response.
Intake: Um, ma’am, I noticed you did not sign this, pointing to one of the highlighted lines. The doctor ordered these labs, so you have to get them done.  
Me: The lab work was completed in Oregon and the results were forward to my Texas practitioner therefore I will not be taking part in another blood draw.
Intake: Ma’am, that doesn’t matter, it says here that you have to do it again.
Me: *no words, simply pregnant pause.
Intake: You know, I will ask my supervisor what to do.
Me: Sounds good.
Intake: umm, ma’am, you didn’t sign here where it says that you will get a chest x-ray or any additional labs, as the doctor feels necessary.
Me: That is correct. A chest x-ray was not discussed between the surgeon and me.
Intake: And the additional labs…
Me: Correct, I do not authorize additional labs without my written consent.
Intake: Well, let me get a nurse. When they explain why these things are needed you will understand better and sign the paperwork.
It continues to go on like this through the remainder of the paperwork.

I am finally escorted to the pre-operative bay where I am instructed to disrobe, keeping my panties on if so desired (I desired!), and to next put on the super awesome surgical frock. Side Bar: Can’t these facilities come-up with a, let’s say, more stylish print design for the frocks? I mean really, once you put on the plain frock, you instantly feel and look like a sick person. Then to add insult to injury, they bust out these horrific grey non-slip socks and instruct you to put those on too! I was like, What The What – Seriously?!?!

I am now resting nicely upon the gurney, dressed in my sickly attire – except for my cute panties, which no one else could appreciate, as I speak with the nurses, anesthesiology team, and surgeons; surgeons marking where they will cut and the others, discussing the procedures I will be undergoing. At one point, I noted that I am always given Promethazine for nausea, administered during surgery, and this is the only anti-nausea I wanted to receive. Several minutes later, a member of the anesthesiology team returns to inject some medication into my IV. I look at her and notice that she has a vile of Zofran readied to inject into my IV. I interrupted her and said, “Is that Zofran? It sure looks as though I am reading the word Zofran on the vile.” The woman went into this speech about Zofran, her colleague joined. I restated that the only anti-nausea medication I was authorizing was Promethazine – most certainly not Zofran. 

It was incredible that this team of individuals were prepared and willing to disregard, completely, what I had authorized them to put into my body. Talk about taking privilege with my body – who do they think they are?  

Then, there is the PET scan incident:
I was scheduled to undergo a PET scan this week. As I was reading over the information and process, I realized that my appointment was not for a PET scan but rather an Integrated PET-CT scan – NOT what I had agreed to. When contacting the oncology receptionist, she provided inaccurate information regarding what a PET-CT was – finally she offered to have a nurse contact me. When speaking with the nurse, I relayed that I did not agree to a PET-CT but rather a PET scan only. When asked why I did not want the PET-CT, I simply responded, it was a personal preference. Her response was something like, so you do not want to tell me your reason for not wanting the PET-CT? These folks could use training in basic empathy and/or reflective listening – I am offering to provide this service FREE of charge! So now, I wait to see IF the oncology group will refer me to get only a PET scan as originally requested. In truth, I really do not care, as I did not want to undergo the scan in the first place, additionally, it’s more money out of my family’s pockets!

To follow is a note to those within the oncology profession. 

Dear Oncology Medical Profession-

As a patient, I acknowledge your western medical training and your delightful ability to recite the standard of care for specific cancer diagnoses. Be mindful, this is my body, my choice –many within the oncology profession; seem to have forgotten this basic adult human right and freedom. Each treatment choice and decision is not being made lightly, but rather with the weighing of risk vs. harm, the pros and con’s based on independent research from many sources – including the information you provide. This is my life. I choose to make my own informed decisions, not because you told me too, but rather because I chose too. Western practitioners do not have all the answers – you are not a god. Each patient’s body is unique and different. Many patients will look to you for guidance and direction – many are scared, unable to make choices, trust your guidance, or do not know what else to do. Then there are patients like me – ready to research, willing to make difficult decisions, not detoured by the bullying, shaming, the threatened withholding of treatments, and fear mongering spewed by the oncology profession. Despite all the pushback from the oncology profession, I will continue to make the treatment choices that are right for me – my body, my choice.

I have supported many friends through their treatment choices that are much different from mine. I have watched several suffer greatly and lose their lives. I too have seen several continue living, despite emerging post-treatment illnesses and struggles that continue to cause suffering to one degree or another. As patients, we choose what is going to work best for us and what brings us peace – there is no right or wrong. It just is.

To clear-up any confusion regarding indulging in western medical treatments or lack thereof, trust and believe that I am not turning away from treatment – it is your western medical interventions that I do not seek, as my mainstay. I AM in treatment! I am not experimenting with any particular “cancer cure” of the moment. What I am doing is working to bring my body back into balance, on a cellular level. This approach is holistic, following the practices of Ayurveda – which has been around a heck of a lot longer than western medicine. While western medicine has a great deal to offer, it equally lacks. My daily routine, to remain healthy, takes dedication and is not a quick fix. When I hear individuals within your profession making comments such as – “you must be crazy to choose alternative treatments!” I respond by saying, “Natural treatments vs. toxic poising – that’s an easy choice for me.”

Repeatedly, I have created the space for those within your profession to cite standard of care along with recommendations; most usually, there too is an injection of judgment that jettisons in as well. Some days I sit and listen more patiently then others. Let me share what is missing – those within the oncology profession rarely create a space for the patient to cite thoughts, fears, and outline treatment choices that are met with a respectful and compassionate ear. When you become the patient, then you can decide how you will manage and treat your condition. Until that time comes, which I hope you will never have to experience, – you do not get to decide for me. This is my life. This is my body. Show respect.

Today, I am hopeful


Seeking Balance 


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