Wednesday, July 30, 2014


You learn so much having a disease that you thought you knew a lot about. I believed most women survive breast cancer, it's not the disfiguring, death machine it used to be. Nothing is further from the truth. Approximently 40,000 die every year. Before we die, we suffer. We do become disfigured, scared, and that's just physically. What it does to our minds, is much much worse. It's the hardest thing I've done, trying to learn to live while dying. Every decision I make even the smallest ones, I'm always wondering if I should, should I travel, what if I get sick, should I buy that, what if I die, should I eat that, what if it feeds my cancer. I've learned and learning, just live. Just simply live. Stable is a good place to be. The best is NED, no evidence of disease. But I'll take stable. I believe it's always lurking anyhow, so just enjoy whatever break you get. I found plenty of things to do to pass my time now that I no longer worked. I put a lot of energy into my candles, cooking and of course doctors. I felt ok, never great. Your brain, or my brain changed. I can no longer read very long, my comprehension is way off, I get frustrated very easy. I was really enjoying being home at first.  I truly am a homemaker at heart. As the days turned into weeks, then months, I was getting pressure about returning to work.  I anquished forever. Part of me wanted my old life back, despite it being to much pressure, the bigger part of me wanted to close that door, and live out my life doing what I want. I knew I had to make a decision soon. I could not return part time. After doing a lot of checking we learned each day I was gone my ltd was getting smaller as they base it on your current earnings. Well, my time spent wondering what I should do had already cost me nearly 300.00. Sooo, I filed for ltd, with the intent to not return. About 6 months later I resigned. Done. My former life was done. I was now surely on the new path. I continued feeling ok. I was accomplishing a lot during the day. It appeared I was handling my treatment well, all tests were always good. I just never grasped how one could be full of cancer, and yet have perfect blood and immune tests.  I began noticing these huge ugly sores all over. My thighs, back, arms. Ugly. They hurt, they looked and felt like cysts but nothing came of them. My oncologist had no clue. He wanted to biopsy one, so I agreed. Now I tell you, he came very close to being punched. It hurt. Ended up being infected cysts. Scars have never left. Not to far after my blood tests began showing issues. I was declining a point each month. I was becoming very tired. This began in January, by may I was a mess. I was down to 8 in blood counts with normal being 12-13.  I was exhausted. Next my kidney showed dysfunction. That was quick and harsh. My oncologist removed me from avastin. I felt better but my numbers showed trouble. Next he removed me from the pamamidrate which was supposed to keep the bones strong. I did not improve. I was referred to a kidney specialist. She did a biopsy which showed extensive damage mostly unrepairable.  My bone marrow was found to be damaged to.  I was a mess. Avastin was killing me.  The results didn't show up until it was to late. During my cancer treatment I was taking many suppliments.  I believe those suppliments hid what avastin was doing.  I was kept on the femara.  Soon, I was not getting scanned either as scans themselves pose risks.  My last scan showed stable, the femara appeared to be holding the cancer at bay. Now it was time to see if my body would recover.

2 Thanks for your comments!:

Ginger said...

I am so glad your scans are stable and that you are doing good. I was talking to a lady recently who has bc and mets to the bone. She is 7 1/2 years out and scans are good. I pray that you will be around for a long long time!!

Ginger said...

PS. I went to my oncologist this morn. and got the results of my brca gene test. I tested positive on the brca2 and negative on brca1. Will have to go back on the arimidex now.