A long time ago I learned to listen to my body. My body hasn’t been telling me a good story the last few weeks and with the progressive pain in my upper spine and consistent pain in my hip I have earned myself another PET-CT. In video game speak – that would be a sarcastic “w00t!”

Breast cancer isn’t supposed to grow this fast. I could be certifiably crazy.

Part of me has been convincing myself that ovaries out and estrogen blocker is going to be AWESOME, but while we have waited from one thing to the next, my body has been telling me bad things. I am hoping my body is a mean liar and that this is all radiation/surgery/tired… sore… We beat me up a bit this past month. Who is going to feel amazing?

I say this, but my energy has been up a lot. I am not completely dying after 8 hours at the office (it was putting me in bed when I got home before radiation). I take a pillow with me to meetings. I know it totally makes me hip and cool (I know people think that to themselves “that Mandi with her pillow, BAM! She is awesome”), but a pillow behind my back in a conference room for hours on end is much better than some of the chairs in my office. Work has been more amazing with my situation than I could have hoped so far. I luckily have a job that I can do a lot when I am not physically in the office, but it isn’t ideal.

I also started to research immunotherapy trials. Why? Because that is where I hope cancer treatment goes. That and nanobots, but do you know how hard it is to get in to a nanobot trial (can you get into a nanobot trial? I need a nonobot trial…). So I have been thinking about taking a wild leap into really cutting edge research because it gives me the most hope and it gives me hope for people after me.

Speaking of trials. I believe they took a pint of blood from me today at my oncology appointment. I saw the tubes that the phlebotomist walked in with, I looked at my arm and I told it “sorry dude.” I felt even sorrier after they realized they missed two tubes for a study and poked me again. I have one good vein. That poor vein… Oy. These studies are all helping genetic research. I am hoping this helps someone else someday.

I had a stack of papers when I went to see my oncologist today. Studies I had printed off because I wanted to see what she thought about them, and it looked like I was eligible. I wanted to see if they made sense in my current treatment plan (they all let you take your anti-estrogen treatment and join the study – which is my current line of treatment). I was hoping to double stack my deck and teach my immune system to kill my cancer. My oncologist walked me through what phase 1, phase 2, and phase 3 trials mean (I spend too much time on the innerwebs and know, but good to make sure I actually know – because Dr. Google can be Dr. Wrong). Every trial I brought to her was phase 1. They are phase 1 because this kind of medicine is new new new.

We agreed on a trial, her eyes lit up a little bit when she realized what I was trying to do (even though this is way out there and has a small chance of really really working). I had already emailed the investigator and received a response from the doctor running the trial. It was the one my gut said “try this.” She verified a couple criteria that I thought may take me out and showed me that I was really eligible (it was the only one I wasn’t fully sure about). If I get into it I am going to have to figure out how to fly across the country every 4 weeks. I am resourceful, I am figuring I will somehow figure that part out. I want to try this – but there is one thing in my way – how much did my cancer progress in the last 2 months?

I am waiting for the insurance approval/long process on getting in for the scan. If I have tumors where my new aches and pains are – I start Taxol, Herceptin and Perjeta (chemo. The lose your hair kind…). If I don’t I stay on Femara which I started today and hopefully spend a lot of time flying across the country.

My oncologist suspects I have spinal cord compression where my big tumor was in my upper spine (rather than spreading cancer up there causing my pain). Hips… who knows.

Wish me luck.


Mike and Brady put up the tree for me when I was still sore from surgery. I needed a little holiday spirit around the house. 🙂



Author: Mandi

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