Remember it’s fun to swim and dance with glee, cause when you do it sets you free. Truth be told, if I may be so bold, being silly makes me smile. It gets rid of the waste by making my day taste sweet and tart as it warms my heart. It is especially great when its late and we feel old and cold. We can scrape off the stress as we are impressed by the marvelous melodies of our magnificent moments. So as you sit, sleep or stand wiggle your feet like you are listening to a band. Shift your hips from side to side like the electric slide. Laugh, love and live your life to the fullest. Use your clever mind and pull joy’s lever and surely you will have fun forever!
Stress is a Catalyst for Change
Storm clouds will brew and roar, but eventually they begin to pour. When the sky opens up and gives us rain, it can fall in a variety of ways – from thick to thin, small to tall and soft to sideways. My storm cloud of cancer has been hard and steady, thick and slick. My stress collecting gutters have been deep and cavernous, storing more rain than I ever could’ve imagined.
The gutters of stress, like our homes serve to save our roof, serve to save our soul. They fill with an ever flowing destructive force. A force that will find its way, that will always has its say. Our gutters can only be filled so much, they become over loaded and begin to spill over. At these moments, when our pain crosses the threshold of our tolerance that we decide to make a change. It is the catalyst that transforms our existence.
It is from this moment we begin to invest in ourselves. We gain a strength to do what needs to be done. We become dedicated to a cause, our cause.
Stress: a tool for advocacy
This week I reached a pivotal moment in my cancer journey. I discovered how to transform stress into momentum and to become my own health advocate. In A New Universe of Cancer: Part 5 I begin to explore this advocacy.
Recently I started expressing my thoughts and feelings. This exploration has made me stronger, more aware and more powerful. Last week I could no longer tolerate how my treatment was progressing. The scans and tests that were suggested by the sites and experts I researched did not resemble the scans and tests of my oncology team. After considerable introspection I decided to stand up for myself. I sent this email to my oncologist:
I am not satisfied with your explanation as to why the Netspot kit (aka Gallium 68) was not used. Simply stating that Netspot is not meant for my NETs is not enough to convince me that I would not benefit from it. If the reason is because it is rare for lung carcinoids to cause carcinoid syndrome I would agree, yes, it is rare, but it is not impossible.
According to my medical records I have not taken a 5-HIAA test to check for serotonin levels. Nor have I received an octreotide scan. When it comes to my health I am not prepared to run on assumption. If this test has occurred or there has been some other test performed on me that I am not aware of I would greatly appreciate having that information.
With that said I would like to have a more in depth explanation as to why you ordered a PET scan you knew would reveal nothing. Why exactly would I not benefit from the Netspot kit? Why have I not been given an octreotide scan?
Searching for a new oncologist
After sending this email I began searching for a new oncologist, specifically one that specialized in NETs. Following a suggestion I contacted Siteman here in Saint Louis.
I spoke with a receptionist who explained Siteman’s insurance policies. She explained that because their organization did not have a contract with my insurance their doctors would only see me once, they would not offer treatment options, order labs or scans and would offer no additional opinions on my cancer.
I am more than willing to accept the policies of an organization and move on, but this receptionist was insensitive, condescending and rude. It felt as though she was taking pleasure from the horror of my situation.
I asked her if she would send a note to the doctor (she claimed was a NET specialist) asking if he would provide names of other NET specialists within Missouri. She told me that she would not do it. I asked her again, telling her that I couldn’t find any names from my insurance website or online. She said that her office would not refer me to see anyone.
I told her that I didn’t want a referral, I just wanted some names so I could find someone to help me. She said the only way I could get those names was if I came into see the doctor. I asked her how much it would cost, she said because the hospital wouldn’t accept my insurance it would cost me $360. After telling her I couldn’t afford to pay $360 to maybe get some names, I asked her to ask her doctor if they would tell me about some NET specialists. I asked her again, to just ask the doctor, that I was desperate, that I was afraid and that I needed help, I begged her to send the doctor the note. She said no.
So I asked to speak to her supervisor, she put me on hold for about ten minutes then transferred me. After speaking to her supervisor I was told that I would get the information. It took some time and eventually I got the names and contact information for some NET specialists.
A Conversation with my Doctor
Throughout the day my doctor called me, but I did not feel like speaking to him. I was out of energy and I wanted to make sure I was in the right head space when I spoke to him.
The next day my doctor contacted me and we spoke on the phone. He apologized, told me that I was right, and truly humbled himself, an act I have never seen a doctor do. Immediately he started the process of making sure the scans mentioned were ordered. Already I have completed the 5-HIAA test and some blood work. Next week I will be receiving the Gallium 68 scan.
I have learned from this experience. It has taught me that if you want to receive treatment you have to demand it. If you want to be treated like a human you have to be strong and powerful. Unfortunately at many moments we are weak during our cancer journey, it is unfortunate that we have to not only to survive but to also receive the treatment we deserve.
If you are interested in reading more about my journey down the road of advocacy take a step back in time and check out: We all must be advocates, all of us; Part 3