Tuesday, September 11, 2018

From Powerless to Empowered

I am so overwhelmed by the warmth and love I have received from my tribe since my last post. I feel surrounded by love and support and know that I am not alone.

I went to the oncologist last Thursday to discuss surgery. The type of cervical cancer I have is known to be broken apart in pieces, which is why I still need to have surgery even though there were negative margins in my biopsy and it initially seemed like all of the cancer cells were removed. This makes sense to me, but makes me sad as I cope with the reality of surgery and the risks involved.

The doctor was very kind and thoughtful and took her time to be sure that all my questions were answered. Then I left the office, went for a nice trail run and started to head home. I checked my email in my car and saw an email from my pharmacist saying that a medication that was prescribed was on hold because of an insurance issue. I called, and they said that a prescription for a super expensive 28-day supply of an anticoagulant injection that is prescribed post-surgery was called in. I knew nothing of this, and it sent me over the edge.

One of the big questions I asked was what medication I would need to take long-term following the surgery. Somehow this was forgotten. Isn't there a checklist somewhere? I tried calling the oncologist’s office on Friday and was told I could not contact the office directly. I had to go through this call center situation and leave a message that would be returned in 24-48 hours. So basically, not until Monday.

This may not seem like a big deal, but these two things happening caused a huge cloud of doubt to hover over me and this whole situation. Suddenly I felt powerless. I felt like a stranger in the medical world, forced to accept that broken system is just the way it is. The oncologist while kind, forgot to tell me this important piece of information regarding the medication I would have to take after the surgery. I felt trapped in this situation and as though this is just how it works and something I should get used to. I mean, she didn’t even bring a pen into the exam room. Who forgets a pen??

This trapped and powerless feeling lasted through much of Friday. I tried to go to work, but all I could think about is that I can either accept this situation or take on the huge job of finding another oncologist. I told myself I bet they are all this way, I better just accept it. I felt defeated.

At some point I realized that I needed to cover a long run before my race in three weeks. I checked the plans for my two running groups and came to the decision that I wanted to run the miles alone. Something was drawing me to this. I wasn’t sure what it was, but I just went for it.

I left the house before sunrise as usual, and there was a light misty rain most of the 45-minute drive to the trail head. I arrived before 7am, and hit the trail. Each mile filled me with more confidence then the last. As I passed 14, 15, then 16 miles, I began to get tired and to try and talk myself into cutting it short. 18 miles is a lot, I argued. 18 miles is close enough. I had to run past my car at about 18.5, so that was really tough. But I knew what it would mean for me if I ran 20 miles 4 days after I was diagnosed with cancer.

You see, I began to think I was sick. I started to have phantom pain in my uterus. Like I could feel the cancer (impossible). The word “cancer” would echo in my head. I am learning that when I am low like this I feel like the victim in this situation. As a typically positive person I should know by now that my pity parties do not last very long. These 20 miles pulled me straight out of pity and straight into STRENGTH and POWER. I am not sick, I am STRONG. I am POWERFUL. I get to make the decisions. If this doctor isn’t right for me, I will find another one who is. I hold the power, and I luckily have the blessing of time to find the right person for me.

Feeling empowered to take on this challenge, I took the steps needed to find a new doctor. I called my GYN and the nurse there was more than happy to give me another referral. She shared my unhappiness with my experience and validated my feelings that the experience was not what it needed to be. I called the other oncologist and have an appointment in two weeks.

I should add that the original oncologist I saw called me last evening and apologized. She was very supportive and understanding in my reasons for seeking another option. She welcomed me back if I decide that she is the one I'd like to work with. She actually said "I am happy to take care of you if you decide you want me to." 

Working in the disability field has afforded me the opportunity to see what it has been like for my friends who have disabilities to experience the loss of power that goes along with their navigating this healthcare system. I learned early on in my career that people with disabilities do not need or want to be "taken care of". They want services to be provided to them. They want to maintain the control over who provides the services they need.

I do not want anyone to take care of me. I want a surgeon who will provide a service I need. It may seem like semantics, but the message that I need to be cared for vs. I need a service provided to me by an expert are two very different ways to approach this situation. One evokes a sense of power in the provider, and one focuses on maintaining respect and understanding of the person.

I imagine there will be lots of highs and lows over the next few weeks and months. It has been a whirlwind, for sure. Ultimately, I know that no matter how out of control I feel, this is not happening to me, it is happening for me.

The greatest discovery of my generation
is that a human being can alter his life
by altering his attitudes of mind.
~William James