The sure sign of a difficult day is that I am wide awake in the middle of the night. It was a long work day that included an evening trip to the office. Any day spent mostly sitting leaves me in a great deal of pain. My job is probably typical with several really great people but a few that try to make everyone around them as miserable as they are.
Learning More About MBC
I listened to a brief webinar about MBC while I worked. I prefer to know more about my enemy, but this is the first one I’ve attended since discovering brain mets. Did you know that in a 1 cubic cm tumor there are about 1,000,000,000 cancer cells? That’s one billion! I was diagnosed de novo (stage 4 from the start) with a large spider-like tumor in My breast and innumerable tumors on my liver and a large tumor on my adrenal gland and many bone tumors. Imagine how many billion cancer cells were floating around my body. Yikes.
This webinar discussed several exciting treatments for my type of breast cancer, HER2+. But then the presenter mentioned the blood brain barrier. The human body is amazing and the blood brain barrier is an invisible divider between the brain and rest of the body. This barrier serves to protect the brain from disease and toxins. That is a good thing. This also means that most drugs do not cross the blood brain barrier. That is a bad thing for cancer patients. The same drugs that are controlling my cancer so well below the neck are doing nothing to my brain. HER2+ spreads to the brain 50 percent of the time. Very little progress has been made in the last 20 years in treating HER2+ that has spread to the brain. Lucky me. There are a couple trials out there that are promising and gamma knife has been successful for me.
This evening I participated in Zoom MBC Grief support group. I am so grateful for the MBC advocates out there working to organize these groups. Because I still work full time, it is difficult for me to find the time I need for these groups, but I try to fit them in a couple times a month. The mere act of conversing with other women with MBC helps me not feel so alone in this journey. I have a supportive inner circle, but these women truly know how I feel. The topic was regrets. It was a great discussion, but also stirred up some feelings that aren’t settling down to allow me to sleep.
Two years ago today I set a personal record at the Illinois 5K. This photo perfectly captured my emotions at the finish line. Joy! I had no idea that I had cancer growing inside me at that moment. Because I didn’t know that dense breast tissue requires more than a mammogram to find cancer, because the radiologist wasn’t required to tell me that, because I was told my previous mammogram showed no cancer, I could feel complete and utter joy. I won’t ever feel that sense of joy again on earth.
Tell my Story
I cannot go back and change what had happened but I can tell my story and urge women to know their breast density. If you are category 3 or 4, demand a follow up ultrasound or MRI. If you don’t know your density, look up your last mammogram report. If it doesn’t tell you, call and make them tell you your density category. Then, if you are category 3 or 4, make an appointment today with your primary care provider to discuss the next steps. I cannot change my story, but I can change yours.
I stood outside tonight on the farm and noticed a gorgeous full moon. I thought of all the women from my webinars who were under this same moon. I thought of the people I love being under the same moon as me. I sang to the moon:
I see the moon and the moon sees me. The moon sees somebody I want to see. God bless the moon and God bless me. God bless the somebody I want to see.
I really think that the Lord above created you for me to love and picked you out from all the rest to be the somebody I love best.
When I get to heaven and you’re not there, I’ll write your name on the golden chair. I’ll write it big so the angels can see, just how much you mean to me.