Survivor Update

Wow warriors, I can’t believe it’s been so long since I’ve updated you all. Lots going on. Some good, some bad. Let us start where we left off…..

End of Summer

I ended the summer with a trip to Colorado to see friends. Then dove right back into work. August 2022 and the first part of September felt so crazy. I was still in physical therapy once a week to adjust my posture. Still had a few other appointments to finish up with. Covid was running rampt at school when boom, the second week of school I too was hit with Covid. My first time with the dreaded disease.

Covid

Overall I managed, I survived. Of course it hit on a weekend. I had to suffer through without any medication until my oncologist returned to the office on Monday. I had called the on-call oncologist, but they were not familiar with me or my situation. I’m sure if I had advocated more I could have gotten Paxlovid (the covid medication) sooner, but honestly I just didn’t have it in me. 

Paxlovid is a dang wonder drug! The minute I took it I felt so much better! Only downfall was once I was out of it, I did rebound. I didn’t truly feel myself until about October. I struggled with increased exhaustion and brain fog. Proud to say I am now back to my regular level of post cancer exhaustion and brain fog! 

October 

October brought some awesome things. I was able to travel to Chicago to meet up with two girlfriends, Elena and Alex, who I met in a zoom support group way back in 2021. I met them right at the start of cancer, when I hadn’t even begun chemo yet. Elena became my first cancer friend. She and I started chemo on the same day and have been great friends since. Alex came shortly after that and ever since we’ve been three peas in a pod, or “potatoes,” as we call ourselves. 

Elena was in Chicago for a work conference. Alex lives in Cincinnati which is within driving distance, and I always want an excuse to travel, so when I realized how close we would be to each other I popped the question and the idea took flight.

It was absolutely amazing. We stayed in an AirBnB and as Elena said, “felt like we were old friends getting together again.” We watched loads of HGTV, shopped and made cookies. We were able to just be together and let down all the guards of the daily world where we tried to fit into a world without cancer. Chicago was our world, a cancer world. 

Grandma

The end of October brought very devastating news. My beloved grandmother passed away after suffering a sudden cardiac event a week after her 90th birthday. It was absolutely devastating. I haven’t processed it, but am trying. There are not enough words to describe the impact she had on my life, and the beautiful and close relationship we had. 

Complex Trauma 

Which sort of brings it all back to cancer. Through my numerous hours on TikTok numbing myself, I’ve also become convinced I’m bipolar, have autism, ADHD, basically anything and you name it. TikTok is the new WebMD. My therapist says I shouldn’t spend so much time on TikTok and that I actually have PTSD/complex trauma. 

I always thought PTSD was reserved for someone who had been through something like war. I thought it was nightmares, disassociating, and punching walls. It can actually be so much more than that, like it is for me. 

For me, complex trauma/PTSD, is my body thinking it’s in much more danger than it is. I start to get short of breath and notice I can’t process my emotions as well. I feel out of control and unhinged. I want to isolate myself. I want to go shopping for things I don’t need. I want to numb my pain. I’m only now understanding that this response is in fact PTSD and can be triggered by any big loss in my life, like losing my matriarch. 

PTSD is very confusing to me and something I’m slowly starting to learn more about. I’ve found doing things to help me feel in control, like organizing or cleaning helps me regulate better. I have to be extra patient and allow adequate rest. I have to make sure I’m eating well and hydrating. I have to prioritize myself and well being, which is really hard, but in this family we do hard things.

Signatera  

Ya’ll know I love to end on a positive note, and I haven’t included much science in here yet. So here we go! Dive right in!!!! 

Back at CancerCon, I learned about this test called Signatera. Basically, every tumor has its own DNA that shows a specific mutation, making it cancer. The company Natera takes samples of an individual’s tumor and maps its DNA, finding its specific mutation. They then test the patient’s blood to see if there is any circulating tumor DNA that is identified by that mutation. If there is circulating tumor DNA, then there is a high probability that there is cancer somewhere in the patient’s body. If the number is zero, there is no cancer. 

This test has been shown to detect cancer recurrence 9 months before traditional scans can and before symptoms show. While this all sounds fabulous, there are a few problems with this test. When it comes back elevated and cancer can’t be seen on scans, nobody knows what to do. They can’t treat something they can’t see, even if the numbers are elevated. This is because they don’t know at what numbers there truly is a reoccurring tumor. Sometimes the numbers fluctuate. It’s complicated and a bit ahead of its time. 

My clinicians all felt it would produce unnecessary anxiety for 9 months while we wait for the cancer to show itself, and I should live those 9 months worry free. For me though, the clarity it could provide would be worth the risk. Every day I live in fear of cancer returning. Every ache, every pain I think is cancer. It’s even more complicated, because I know the early signs that some people may not. Dry skin could be my liver not working and liver mets. Bloating could be ovarian cancer (said the woman with no ovaries) and so on. 

While my clinicians strongly advised me to not do the test, they supported me when I said I wanted to (which makes them the absolute best and why I chose them). I went ahead with the test and then waited 5 more weeks for it to come back. And it came back negative!!!!! So I can say, at least for that particular day, I was 100% certain of being cancer free. I didn’t have cancer, and it’s possible I still don’t have cancer. 

The peace of mind this result has brought me is actually less than I had hoped. I thought I would feel this huge sense of relief and joy, but I don’t. This test result doesn’t mean that cancer can’t come back. It just means I can breathe maybe a little bit easier when I notice a new ache or pain. Every little thing can truly wait 2 weeks before I go down the rabbit hole blowing up our hero Nurse Stacey. I potentially don’t have to expose myself to so much radiation from scans, because it’s most likely not cancer. The negative results kind of put me back in the “normal” category when it comes to risk in my mind. We don’t have to consider zebras right away when we hear hooves, but rather have the luxury of considering horses first. I do suppose that is nice.

And that’s about it for now. I continue to do all the things to reduce recurrence risks. I also continue to get more and more involved in the AYA community, but that’s a story for another blog post. For today, let’s just find ways to create joy in our lives and keep soldering on.