I knew the second the doctor opened the door that the news was not good. I could see it in his eyes. That must be an incredibly horrible part of his job. He must have been dreading this conversation since the moment the imaging report came through. The tumours had grown and new lesions had appeared. The chemo was not working.
There is no proven path from this point on. With only 100 new cases of this type of Neuroendocrine cancer a year the first two lines of chemo, along with radiation is all they’ve figured out.
During our meeting he laid out three options, attempting to get into phase 1 clinical trials in Toronto, trying immunotherapy (which I don’t have a great profile for and it has a poor track record- ie hasn’t really worked in people with similar cancers and is very expensive), or stop all treatment and make the most of my time.
Through tears Justin asked what he would do if it were his wife. He said he’d choose the latter, and wouldn’t spend another minute getting poked, prodded, sitting in a waiting room. He said I have 3-4 good months left before the cancer really starts impacting me.
There is part of me that wants to do that. Off treatment I’m feeling relatively ok physically, and I question whether I really want to waste the time I have seeking more treatment that will potentially rob me of my vitality, waiting around for apt times, traveling to receive treatment? Is it really “giving up” if there isn’t a winning path forward? I don’t think it is. But I have too much to fight for. It’s an incredibly remote chance that the immunotherapy will buy me more time, and even less likely that clinical trials will do the trick but I have to try. I will not stop because my babies need their mama.
So we’re currently awaiting a few different things including a call for a biopsy of the liver tumour to see if the genetic composition has changed since my initial biopsy a year ago. This could open up clinical trials or help determine next best steps for our Hail Mary.
I always thought before my diagnosis that there was just a clear cut path you take. Your Doctor would just direct you. They would tell you what you should do each step of the way. So much of this journey has been left for us to pick a path. People who knew nothing about cancer a year ago, let alone an especially rare aggressive cancer that so few Drs even know about. I try to read medical journals and extrapolate info, but even before chemo brain (and mom brain!!) I wouldn’t have understood half of it! There is a reason I’m not a Doctor!!! At this point I’m thinking of pulling out a magic eight ball, because we really don’t know what the right choice is going forward.
The waiting is agony. Not knowing what path is the right one is agony. Not doing anything right now is agony. Cancer is fucking agony.
Some days, despite how horrifically sad this situation is, I feel somewhat at peace looking at my kids and feeling that my purpose in life was to bring them into this world. To create these hilarious, gorgeous, shiny little stars to radiate beauty and love to those around me. But sometimes I just feel angry that this beautiful life I’ve built will be cut so much shorter than everyone else’s. It’s a dark place to be, but when I see smokers living to 80+, or chronic drinkers living to a ripe old age I just feel like it’s so unfair. This whole thing is just not fucking fair. Not just to me, but my kids, Justin, my mom, and those close to me. Why me. But spending time on those thoughts is pointless and counter productive. I remind myself that I don’t have time or capacity for dark thoughts and do my best to focus on all I have to happy about.
After a sum-pump issue causing some flooding in our basement (luckily no real damage just stress and worry as we figured out what the issue was) and as I sit holding a puke bucket beside C where I’ve been since 3am, I am so grateful for today.
Thanks for those who got to the end of my long, cathartic post today. I so appreciate those who follow along and have an interest in our family. It really does bring us warmth knowing how many people out there care. As always, the messages and check ins and other acts of kindness are so appreciated. Thank you ❤️❤️