God Willing

Today marks ten years of my being cancer-free. In this photo, I had been recovering at the Mayo Clinic in Minnesota for almost a month. By then I had lost my left kidney, left adrenal gland, a rib, a few lymph nodes, and 25% of my liver.

There have been times that I didn’t quite understand why it was that I was still here. My cousin who is an oncologist even said that mets (metastasis or spread) to the liver is usually fatal because of all the liver’s network of blood vessels. Tumors are kept alive thanks to these vessels, yet the good doctors at the Mayo Clinic were able to resect the part of the liver where my adrenal cancer (supposedly from 1998) had spread. My liver has grown back quite healthily as shown in yearly CT scans.

I thought I knew everything about faith when I was first diagnosed in 1998, that I had dealt with cancer and understood life and religion. But when it came back in 2002, I dropped to my knees again and came to realize that I was not even half-way to understanding what faith was really all about. Feeling a bit vulnerable so will zone back out and continue with this flashback to Minnesota in February of 2002.

Thanks to my sis who was with me in Minnesota to wheel me around in the snow. We discovered amazing underground passage ways and skyways between our hotel, the hospital, movie theater and bookstore without ever having to leave the buildings. Here we are playing in the snow outside of Barnes and Noble which was previously a movie theater before being converted into a bookstore.

Hoping someone newly diagnosed with adrenal cancer finds me instead of the searches that bring up “less than five years survival” types of statistics.

To your health and your faith.

Sharing Health Information

If I could have invented one thing, it would have been a medical database of patient profiles and treatments that would be accessible to the entire health community. Patients, caregivers, doctors, researchers, and pharmaceutical companies would be able to share what they know. PatientsLikeMe.com allows patients to take control of their health by sharing their health, connecting with others going through similar situations and learning from each other.  I’d love to start an Adrenal Cancer community on PatientsLikeMe and have inquired because currently it looks like it’s open to a handful of other health conditions. 

The Openness Philosophy of PatientsLikeMe.com

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.”

 

“We the people have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost.”

      -Jaime Heywood

 

Please watch this video: Jaime Heywood on the big idea that his brother inspired.

Soksabay

Soksabay from Phnom Penh. I can’t believe December is ending soon! Where did the time go? Next month I leave beautiful Cambodia and it feels that there is still so much work to do here. I’m not sure why I am not inspired to write while living in Phnom Penh. So many experiences in such little time and I don’t want to forget about any of them yet I don’t feel the urgency to document them.

I still teach daily at the head office located in the heart of Phnom Penh. It’s the travel to the communities that I enjoy most. I’ve been teaching in two of the slum communities for CVCD twice a week. The two classes from 8:30-10:30 am go by quickly. I will travel with a staff member or teacher by moto to the classroom for about 30 minutes from the city. The kids look much younger than they really are because of malnutrition. The 14-year olds look like they are only eight. But they have the same laughter and enthusiasm as any child I know. Some kids will ask me to write down the word for them but I encourage them to watch me as I write the words on the white board. At the other end of that spectrum are some kids who refuse help. They really are independent and prefer to do the work on their own.

Yesterday, Mr. Pheak and I drove to a slum community by the railroad tracks near our head office, crossing the bridge on Russian Boulevard. The Khmer teacher who teaches there sat and became our student as we, Mr. Pheak and I, co-taught English for an hour. The classroom was not designed to fit the 30+ kids that attend. I watched as they brought in stools from their homes to sit in the back. Parents and young kids crowded each other in the doorway and window to watch. A man came in drunk and asked us for $2 but we asked him to leave and we locked the wooden door by lowering the tiny wooden latch. We asked some kids to come to the front of the classroom and they practiced simple conversation. How are you? What is your name? How old are you? For some kids this was a difficult exercise in pronunciation so it was good practice. As a game, I wrote the phrase on the board and called out words such as “name” and “what” to see who would be the first one to point the word out. Lots of volunteers for that exercise.

As we left the community, I saw a few of the same kids helping their parents selling used clothing or petrol in pepsi bottles on the side of the road.