Sometimes Things Don’t Go According To Plan

I know I have been a little quiet lately. Truth is I haven’t been doing that great. I have had a lot of doctors appointments, scans, brain radiation(yeah that sucked), and my infusions of Kadcyla resumed July 1, 2019.

I had started a post back in August before radiation began and then tried to continue it post radiation and well let’s just say I couldn’t post it. Whether or not I will ever post it I can’t say. I don’t even want to read it myself. I am not sure it’ll make sense. So let’s start at the beginning of my summer.

I know I did a post after brain surgery. I am not sure what I touched on and what I didn’t. I apologize if I repeat myself but those who have seen or spoke to me lately know I am constantly repeating myself. I don’t think I fully recovered from surgery and I was thrown back into infusions. I didn’t start driving again till the end of July and it was short distances. Now I feel a little more comfortable outside the city driving on freeways but inner city driving is still a struggle for me. This is almost 4 months post-op. Now there are several more factors at play than just the surgery itself. I realize this.

First I want to address what my surgery revealed. I feel I touched on it but I didn’t quite explain it. The tumor was HER2+ ER- PR- which means its from one of my primary breast cancer tumors, to be more precise my left breast cancer. A quick non medical(because I am not a doctor) explanation. When your primary tumor(in this case my left breast cancer) metastases to another organ(in this case my brain) it is called a secondary tumor. In my case it was weird because I had two primary tumors to begin with. Once your cancer has spread to another organ you are now considered stage 4. So what does that mean exactly. Well if you are a statistics person its says the survival rate over a 5 year period is about 22% with a median of 3 years. Not the best thing to read before you are even 40. However, there are new advances in the cancer field every day. Some may live for 10+ years. If you were not aware once you are stage 4, you are always considered stage 4. Treatment continues until that stops working and you begin a new treatment etc. There is no cure for this stage, its in your blood it can stabilize, which is the goal. The plan for me is to continue with Kadcyla which does not penetrate the blood/brain barrier(not many drugs do) to keep the body stable and do a brain MRI every 4-6 months and my PET scans every 3 months. As of August 9, 2019 my PET scan showed I am stable. My next brain MRI & PET scan is scheduled for November 4, 2019.

Next I want to talk about my brain radiation. This was completely different than my chest radiation which I plan on doing a post on later under my cancer journey header. The brain radiation was different than my chest. First it was only a few treatments but longer in length and higher in doses. For my plan I had a total of 3 treatments. The first two were 60 min in length and the last was a 45 min session. These were spread out over 2 weeks. Unlike the chest radiation which was 5 days a week for 6 weeks but only about 10 min sessions. I also had to begin taking steroids again which started a few days prior to my first session (which was on August 5, 2019) and after my last session (August 12, 2019) they began to wean me off of them over another week and half. Now I was on steroids beginning in May through about a week or so post surgery and the dose they put me on for radiation was higher. So I got all the lovely side effects. Since beginning in May through August I gained at least 15-20 lbs. Now this past month and half being off the steroids I’ve dropped 13 lbs. Weight gain is the one of the common side effects. Well I also started experiencing anxiety and panic attacks which were heightened with the steroids. I also wasn’t able to sleep, maybe 3 hours a night towards the end. It was bad. That was just the steroids. Radiation effects I will get into after I discuss the setup before I even began radiation.

July 19, 2019 I went in for my initial setup for radiation. This appointment they created my head and neck mold that would put me in the same angle each time. They also made a face mask for me that snaps into the table and holds me tight. I call it my serial killer mask. It’s my Jason from Friday the 13th mask. Yes I got to keep it. Yes I will post a pic of it. They also did a CT scan that they would use to overlay with my previous MRI scans to get the exact locations they would be targeting. Apparently they didn’t get what they needed from it because the following Monday they called me to send me to another brain MRI on July 23, 2019. I will say of all my brain MRIs this is the only one I didn’t freak out on. They gave me music and a mirror that allowed me to see out of the machine any time I needed to. My first radiation wouldn’t be until August 5, 2019. It takes time to set everything up. To recap I began my infusions of Kadcyla again on July 1 and by the time I would go to my first radiation I had another infusion on July 26, 2019. This radiation was different. It was longer but also the table would move around the room. It was kinda like a ride, as long as you don’t think about what is actually being done to your brain. After the first treatment I felt the exhaustion side effects right away. I also got a burning sensation where it was treated. This was similar to my chest radiation the difference with the chest I didn’t get the exhaustion till about 3 weeks in. Just for a side note as well. I was receiving the Kadcyla infusions during my chest radiation as well. I’ve been on this drug for year and half now. By the second treatment I was so exhausted but the steroids were full on raging. I was not able to sleep. Talk about walking zombie mode. The final treatment was on August 12, 2019 that following Friday August 16, 2019 I would get another Kadcyla infusion. This time the side effects were the worst I have had since beginning this drug. Before I go into those I want to say thank you to Amy for spending her birthday with me while I got treatment. That’s friendship!

This is the most writing I’ve done in the past few months. Since I have never felt recovered from surgery then being thrown back into treatment and getting brain radiation I am not myself by any means. Being off of work has been very beneficial and much needed. My exhaustion levels and nausea alone have been the highest they ever have been. I’m in pain daily between headaches, joints and bone pain. I am also having scalp irritation from the incision and radiation. I struggle at daily tasks. I thought by now I would feel more like myself but honestly I am not even close. So if I’ve missed your texts, calls or posts I apologize I may have seen them and wasn’t feeling great so I thought I’ll respond later to only forget because surgery/radiation/chemo has made my chemo brain even worse than it was. I didn’t think that was possible. I don’t want this post to worry people more than they probably already are I just wanted to tell you where I have been and what I’ve been through and how I currently am doing.

I also want to take this moment to discuss something that I have just made the decision on. As all of you know I was looking forward to doing Tour De Pink. I appreciate all of your support and the donations go to a wonderful nonprofit organization that has helped me so much. When I initially signed up in March it was before I knew about my brain tumor. After my surgery I was still wanting to get back to training for it. I did a lot of indoor training and on “good” I would ride on the silver comet. However, I wasn’t really doing well. Then radiation began and I started doing even worse. The combination of surgery, chemo and radiation my fatigue level has increased to a point I haven’t experienced in my journey. I had several of my doctors say I shouldn’t do the ride but ultimately it had to be my decision. I made this decision after a breakdown a week and half ago talking to my mom. I knew I wasn’t physically and mentally able to do this ride. I feel I let a lot of people down most of all I feel like I let myself down. Another thing cancer has taken from me.