Part 3: A spot found on my brain
I got a call about 3 pm several days after my MRI. I had just finished working and got to my hotel room. My doctor was on vacation, so her nurse was calling to tell me I had a spot on my brain. I felt like the floor fell out from under me. I really was blindsided this time.
Feeling fearful for the first time
She said it was tiny, so I could go ahead with my mastectomy and they would get me in with a radiologist later. It was a Friday afternoon. I told her, "No, I want an appointment as soon as you can get it." That weekend I didn't tell anyone except my partner. I really wrestled with intense fear for the first time since my diagnosis. I had to decide if I really wanted to live. I had thought about that more than once since diagnosis. My children are thankfully grown.
I got in to see the radiation-oncology doctor the next week on Tuesday. It was a small spot, less than half a centimeter and they would just do one treatment of Stereo-tactical Radiation Surgery to that one spot. Basically, a beam of radiation to the tiny spot on my brain.
Some good news to hold on to
The team recommended I go ahead with the mastectomy and then come in about 3 weeks after my surgery for the radiation procedure. I did go ahead and have the modified mastectomy and recovered quickly from the surgery. The worst part of that for me was when she pulled the drains out. It felt like someone was removing a knife. A lot of people don't feel anything, but I definitely had a lot of pain. I did get the fantastic news that my breast tissue had come back completely clear of cancer, and 2 of my 4 lymph nodes were also clear. The chemotherapy definitely worked.
The spot on my brain had grown
I did a round of the Herceptin and Perjata and waited very impatiently for my radiation treatment to start. I got a new MRI, so they could pinpoint the device to the spot on my brain. It had grown .2 cm. It was now a half a centimeter. They fitted me for a mask and then did several measurement appointments. The procedure itself did not make me lose any of my newly growing fuzzy hair. I also had steroids which made me not eat and then eat everything I could stuff in my mouth. They messed up my sleep schedule. I was so exhausted but could not sleep. I decided to file for disability. With stage 4 it was an automatic approval, but I still had to wait 3 months.
My oncologist suggested I have radiation to my chest wall, but I decided to only have radiation to my rib. It had been hurting since the chemo stopped. We did 13 Stereo tactical radiation treatments and it quit hurting. I kept as positive as I could but I had my days.
Stay tuned for Part 4 of this story.
Caregivers: Do you practice self-care?