The past two months I have been traveling literally around the world for my health. It started in August when I returned to the U.S. and received word that the cancer in my body was progressing and I needed to start a drug in clinical trial. I signed up, and then got denied by the pharmaceutical company that has the rights to sell the drug everywhere in the world except China and South Korea–where it was developed.
I would say that it has been emotionally and mentally more exhausting than it has been physically. There are moments (that can last a day or two) that I mentally checkout and go on autopilot.
Since returning to China I have made two trip to South Korea and one to Hong Kong in search of getting this drug. Today I lost my cool, which is not usually a good thing for a foreigner to do in Asia, but within hours I had nurses in South Korea and China telling me I can finally get the drug I’ve been trying to get for 2 months.
But I’ve learned a lot of lessons in how to be a self-advocate in my medical treatment…all through mistakes I’ve made that led me down paths of frustration. In the past, I’d get an appointment and say, “I’m there, what do you want me to do!” Today, I ask an annoying amount of questions–especially when dealing with a drug not on the market and I don’t speak Korean or Chinese.
I can write out the clinical, English name of my drug in every message and I know the nurse is not even reading it. I wish I had the language skills of these nurses, and I mean that in the truest sense of that statement. To be able to explain medical terminology in a foreign language is the highest level a fluency in my opinion. Terms are new, technical and difficult for me to comprehend even in English, to understand them in a second language is amazing.
So I still write it in every communication knowing that eventually that term will start to catch their attention.
Today, I caught the Chinese nurse’s attention when she told me that getting THIS drug (that is taken orally daily everywhere else in the world) required me spending two-days in the hospital. I explained that I don’t think we are talking about the same drug. The Korean nurse told me that I needed to come in for x-ray and blood work (that was just done last week) and then meet with the doctor because the drug is ready. I responded it’s good news that the drug is ready early, but I want to confirm that I will be receiving THIS drug at the appointment.
I pray that THIS drug will come to fruition shortly and I can get into a routine with it. I pray it works after spending two months working to receive it. But my prayer for this exact moment in time is that I can break the language barriers that are casting clouds in the process.
I’m waiting for their responses. I’m also listening to what I feel in my soul. Hopefully it’s me listening to God. But I cannot discount the feeling of something not right. I cannot jump to conclusions, I’m good at that. But when I get these strong feelings of things not being right, I have to advocate for myself.
Waiting, listening and following thorough–those are the biggest lessons I’ve learned these two months.