PIK3R1

I keep hearing other survivors say “Cancer doesn’t define me.” But, quite frankly, cancer is the most interesting thing to happen to me.

To me the worst thing about cancer is the unpredictability. I’m not a fan of surprises. One of my strongest childhood memories was sitting in the living room staring at a spider crawling on the ceiling. I didn’t like spiders, but I really didn’t like not knowing what the spider’s next move would be. If I stopped looking at it for even a moment, surely it would launch a surprise attack! I’m just lucky no one has ever tried to throw me a surprise party. That would not end well.

So, I’ve been watching. Though my cancer is high-risk, it been in remission for the past two years. This has given me lots of extra time to live life. I’ve spent countless hours reading research papers and memoirs. I graph my bloodwork results to check for anything out of the normal. I’ve looked at my scans over and over again learning to make out different organs. I volunteer with my cancer support group to hear about what other folks are experiencing and to provide encouragement.

Some may say that this isn’t living life. Those are the people who must enjoy the surprises that cancer brings. They’re crazy.

I’m starting this blog because I may be at a point now where this study starts to pay off. My most recent scan showed spots of hyperactivity in my liver, and it’s almost surely my cancer that is finally ready to make itself known again.

My oncologist wouldn’t say that it’s probably cancer. I know she was thinking it, though. And I know she would have said it if it wasn’t for the fact that something similar happened in January with some lymph nodes. “What else could it be if it’s not cancer?” my husband had asked. My oncologist replied very straightforwardly, “It’s not likely to be anything else”. But then they did a biopsy and didn’t find any cancer. Just some proliferating lymphocytes. She doesn’t act embarassed by this, but she must be if she is not saying that it is most likely cancer now. An oncologist wouldn’t order a biopsy if they really thought it was likely to be anything else. I’m not fooled for one second.

So… now I have a biopsy of my liver scheduled. At first I was excited to see how they would identify the spot where they would do the incision. I wondered if I would be able to see it on the screen like when I had the lymph node biopsy guided by ultrasound. But then they mentioned “sedation”. Ugh! Even if it’s a conscious sedation, I won’t get to remember any of it. I’ll lose all memory of this section of my life. Why??? If my life may be cut short, I definitely want to hold onto all the memories that I can.

It’ll probably be cancer, though. That means they’ll run extra tests so I can see if it has evolved at all since when they analyzed a sample after my hysterectomy. I’ll learn new things, and I’ll have new things to learn. Sometimes I do worry about suffering the effects of potential treatments. Sometimes I worry about how the cancer itself could kill me. Most of the time, though, I’m anxious and excited to learn more about my cancer.

I try to profile it as a criminal profiler would. I know that when it replicates it prefers to spread and travel instead of growing as a single tumor. I know that when I was on strong anti-platelet medicine, my tumor markers went down for a while, so it probably likes to use platelets to protect itself from immune cells. I know that it has mutations in the PIK3K pathway and in the ARID1A gene. Although many people have a PIK3CA mutation which encourages true out-of-control growth, my mutations are only in PTEN and PIK3R1, meaning there are no brakes on the growth but there would need to be something else going on in my body to drive the growth. My cancer was estrogen-receptor positive. So maybe that. But there is very little estrogen in my body since surgical menopause.

Of course a lot of my tumor criminal profiling is conjecture. I’m not a medical professional, and I haven’t found a medical professional interested in speculation. I’ll take that as meaning that it’s up to me to do all of the speculation. On it!

Alas, it’s not my day job. Sometimes I fantasize about becoming a cancer researcher. Then I realize that I likely wouldn’t get to choose my research. I’d be rushed instead of spending as much time as I wanted exploring a topic. It might kill all my love for cancer research! No, I guess I won’t take up a new profession. But if there are any cancer researchers reading this, I’d like to say thank you for fighting the good fight. ❤️