When I set up this Caring Bridge journal 3+ years ago, my purpose was to journal and track how I was feeling, both physically and emotionally, during my treatment for Stage IIIA Breast Cancer. My hope was that it might help someone else in their own cancer journey. I have not written in this journal for almost 2 years, which is a good thing! It means I am still cancer free and chugging along...

Since the purpose of this Caring Bridge journal was to help others navigate their own Breast Cancer journey, (and October is Breast Cancer Awareness Month, after all...!) I felt it was important to share what I have learned in the time since my last post. 

Last May I retired from my job at the church. I had turned 62 and was hoping to take my Social Security benefits early as long as they covered my healthcare costs (I had received health insurance through my job). Turns out my Social Security benefits were just enough to cover my new health insurance so I decided to take early retirement.. (FYI: apparently a retired married couple on a fixed income make too much to qualify for the "Affordable" Care Act...but don't get me started on THAT mess...) Long story short: when my benefits changed, so did my drug coverage. I soon found out that the exemastane I have to take (to keep that naughty estrogen at bay) is a relatively new and very, very expensive drug. When I went to the pharmacy to pick up my 30 day supply for the first time since my insurance changed I almost had a heart attack right there. I was told that this 30 day supply had a $550 price tag and that my co-pay was $100. I went home and immediately called my oncologist to find out if there was a cheaper alternative to exemastane I could take, but he said this was the best drug for my particular situation and he did not want to risk switching me to something else, since I was doing so well. BUT...he handed me over to the cancer center advocate to see if she could help me. This advocate, Cindy, was my knight in shining armor. She told me about a non-profit called Co Pay Relief ( https://www.copays.org/ )  that grants financial assistance in the form of co-pay relief for only a handful of diseases, and Breast Cancer is one of those they cover. She helped me connect with them and apply, and lo and behold I qualified! I now pay $0 out of pocket for any drug related to Breast Cancer, up to $5000/year. I have to reapply each year, but that is a small price to pay for this kind of help. I learned that Cindy, and many others like her at cancer centers all over the country, know of resources and are there to help. 

I am happy to say I have graduated to twice yearly visits to my oncologist! Most people don't realize the emotional roller coaster a cancer survivor goes on before a checkup, so reducing that stress to twice a year is huge. I have had a couple of minor scares...all related to my compromised lymphatic system, but all in all I am cancer free and feeling pretty good. However, this exemastane that is keeping me cancer free is also my biggest obstacle. It makes me feel very old most days. (that's the only way I can describe how I feel) I have gained a lot of weight, my joints are stiff and painful, my brain is pretty foggy, I am abnormally moody, and I sleep poorly. I recently read several reviews on this drug, all from people with similar struggles, and there were many who stopped taking exemastane against their doctors orders because the side effects were too much for them to handle. But I will continue to take this drug and do whatever it takes to stay healthy. It has not kept me from following my dream of teaching workshops in my studio, nor from traveling. We leave soon for England to visit family and I will be bound up tight in all matters of compression gear on the plane, because I am determined to not allow cancer or anything else keep me from living a full life. 

I am an aging, stiff and achey, sleep deprived, overly emotional breast cancer survivor who is grateful. So very, very grateful. 

“I keep my eyes always on the Lord. With him at my right hand, I will not be shaken.”

‭‭Psalm‬ ‭16:8‬ ‭NIV‬‬