Hey!
It’s been such a long time since I’ve posted regularly. I guess I deemed blogging a thing of the past, turning to social media to document my crazy cancer life.
Don’t think that I’m going to stop putting my face in your feeds anytime soon though. It’s October which means it’s breast cancer awareness month. It turns out that I have a lot to share this year but Turning the Page on Cancer takes a whole post of it’s own
(quick plug (I can’t help it!!) : Join Turning the Page on Cancer, our read-a-thon on Sunday October 25th! Raise money and awareness for mBC and commit to reading for a full 8 hours straight! To learn more and join click here 💕)
So, the last time I really posted was when the pandemic started. Let’s go back..
After I wasn’t able to be on my clinical trial any further. I waited for my thinning hair to grow back but..it didn’t. I had a reverse mushroom cut and finally I decided to embrace the bald going forward. Here’s a video of me shaving my head (for the fourth time):
Months went by and they felt so long. My mom took a leave from her job and started coming over every day. I was so used to being alone, that the quarantine changed my life (for the better!). My days started to look like this:
I started becoming more active in the online cancer community:
I got back into scrapbooking and art journaling:
Peel and stick wallpaper and a handy husband!
And lots and lots of:
During all of this I ended my trial drug (mentioned above) - my eyes were so damaged , my oncologist told me if I continued I’d go blind (keratitis). So even with good scans (although I DID debate if going blind was worth it - that’s how desperate I am), I switched onto Neratinib. It’s a take home chemo. I take 4 pills every morning. I’m not going to lie, the first month is shitty (literally). I started by eating a Crohn’s like diet and added things back in as I went. I suffered but not terribly. I am to the point now where I rarely take Imodium!
The loss of appetite and taste changes are affecting me the most - I’m not even sure at this point what treatment they’re from. I’m smaller then I was at 21, and while you may yearn to be skinny, having an advanced cancer has made me open my eyes and be realistic. Skinny isn’t sexy or anything to strive for and the fact that it’s normalized makes me want to throw up. I want to be strong. I want the weight on me to be able to afford any sudden weight loss if something were to happen to me.
My scans show I’m doing well on Neratinib. The nodules in my lungs have decreased significantly! I get scanned again next week, so we get to see if I’m continuing to show recession.
Unfortunately, it isn’t my body that’s the problem. My oncologist told me that my body wouldn’t be the cause of a sudden decrease in my health - it’s my brain, I have little to no options left. I have had two craniotomies and they can’t take any more of my brain out. I have had whole brain radiation and targeted radiation. I have exhausted all my options. So I made the choice not to scan my brain going forward.
My oncologist explained it to me - if I’m feeling good and continue to scan my brain, what can we do about it if the results are negative? Nothing. So why look if there’s nothing left we can do.
It’s a bold and scary move. I open my eyes every day assessing my symptoms - blurry vision, dizziness, pressure headaches, random nausea. With that being said, I’ve never felt better. More clear. I rarely ever cry or worry. Realizing I don’t have any control has made me feel free. I’ve given myself permission to do whatever I want these days - sometimes it means staying in bed until 3, some days I wake up at 7 all ready to go.
I don’t allow myself to think of the future. It’s always been the way I’ve coped with my mBC diagnosis. When I’ve planned something far in advance, I am so disappointed if it doesn’t happen. Not planning is hard to do, requiring strict blinders at all times. It’s not that I don’t acknowledge my cancer, I do. I just choose not to think about it a lot of the time. I believe in modern medicine that will help keep my mind stable, medicine that takes pain away. I find ways to enjoy my life as it is at that moment. When my eyes were sore and I couldn’t read, I listened to audiobooks. When I started limping, I continued to dance - staying in place, only moving my arms. I’ve been asked why I’m able to stay positive. I truly think it’s because even when I can’t see, hear, walk, read - I adjust my expectations. It usually means lowering them. I try not to dwell on the things I can’t do - I always focus on the things I can and still look forward to. When I close my eyes at night, I ask for guidance and strength. I don’t barter or plead for a miracle. Metastatic breast cancer is the life I’m living and every day I’ve had to choke down this reality and learn to accept it. It’s the hardest thing I’ve ever had to do. I don’t really have a choice though, do I?
xx
Sam
