Souvenirs from My Cancer Adventure: Self Advocacy is Paramount

One of the most important things I learned from the ‘Adventure’, is that self-advocacy is paramount because at the end of the day, the person with the most knowledge about you IS you. 

A few months ago, a doctor, at one of the two cancer centers where I receive treatment, expressed concern about elevated magnesium levels from a recent blood test.  I take supplemental magnesium to manage excruciating muscle cramps that were occurring upwards of 20 times a day.  I agreed to test the impact of the supplement by going off it for four weeks because too much magnesium can lead to cardiac issues, and then retest the level.  During these four weeks, I also kept a daily log to determine the impact of not having the additional magnesium had on the muscle cramps.

They came back with a vengeance. After four weeks of intense pain, I had the blood test run again and waited with bated breath to see if I could go back on the magnesium.      

While waiting for those results, I had a checkup at my other cancer center. Ironically, I learned they were actually thrilled with my magnesium levels. However, they were concerned about my calcium levels – which the first center had not batted an eye at. So, here I am, with one doctor worried about one level and another doctor worried about a different level, all reading the same lab results.  

This is where self-advocacy came into play.  

I had to push to find out why they were concerned about the levels. Next, I had to push to learn what levels are considered safe, need to be watched or represent imminent danger.  Then, I had to advocate why I needed to be on the supplements and help my care team understand the life changing difference the supplements make in my ability to function. 

After much back and forth, everyone agreed the supplements do help me and while my levels should be watched, I could resume.

Survivorship, when done well, is a partnership between patient and care teams. I am incredibly fortunate to have amazing care teams that genuinely want the best for me.  But care teams know medicine, charts, and data. I live in my body and know it better than anyone ever could, so self-advocacy is an ever-present necessity in my life.

Learn more about Self Advocacy from the National Institute of Health and Psychology Today.

 Onward!