Day 117 – It’s Not Over Yet
It’s up inside your head. You got a voice that says, you won’t get past this one. You won’t win your freedom.
Three days ago we were sitting in a small office at the Mayo Clinic talking to Sean’s oncologist. We were talking about the usual things. “What side effects do you have? How bad are the side effects? Ok, let’s try some new medications to see if that helps.” These are the same conversations we have had for the last 12 weeks. Light conversations about where we are right now and how we can fix things right now. But there was one conversation that we really haven’t had yet. Yep, I asked the question. I asked, “What is next? What is going to ultimately kill Sean?” and the big one, “What is our time frame?”
You are probably screaming to yourself, Nooooooo! Why would you ask that Stef? (Ha, after the answer I was wondering that myself). But to tell you the truth, I wanted to know. No, that’s not right. I NEEDED to know. I needed the knowledge to remove more fear and anxiety. Was this conversation going to be easy? Of course not. But it was a conversation that we needed so we can prepare our lives for what lies ahead.
The conversation started with the basics of how pancreatic cancer treatment works. (Disclaimer, I am not an oncologist. This is my interpretation of the conversation.) Our basic goal is to kill the current cancer cells in Sean’s body and to keep them inactive after that. Being stage IV, meaning the cancer spread to his lungs and liver, Sean is not eligible for surgery. If you are asking yourself why, don’t worry, I asked that question as well. “If we kill all the cancer cells, why can’t we just remove the pancreas and be done with this?” The answer lies in the fact that the cancer cells spread. The cancer cells may eventually no longer be visible to us but cancer cells are microscopic and still there. These cells will always be in Sean’s lungs and liver. Because of that, cutting him open to remove his pancreas is unnecessary because they would have to remove his lungs and liver while they are in there. So now we are talking about removing all the organs and Sean would be joining the ranks with King Tut (that’s a mummy joke because they remove all the organs, get it ….ok, yep, I just killed another joke Sean. Keep rolling your eyes, haha). Ok, surgery is out. Makes perfect sense. Do not expose Sean to a very evasive surgery for no reason. Got it.
Now that we know surgery is out, what’s next? Again, this goes back to the basic goal. We are trying to kill the current cancer cells and stop them from continuing to grow. How do we do that? Answer – with treatments. Sean is currently on Folfirinox, the absolute strongest and most potent chemotherapy available for pancreatic cancer. Right now Folfirinox is working because the cancer markers are decreasing. As long as those numbers keep going down, the treatment is killing cancer cells, which is that basic goal. Side note: we will actually get to see the tumor shrinkage when Sean gets his CT scan on cycle 8. So, the treatment is working, that is good right? Answer – yes….for now. What do you mean “for now?”. Pancreatic cancer will eventually become resistant to the treatment we are using. This is not a maybe, this is something that doctors know will happen….at some point. When this resistance happens, we move to another treatment type and we see if that treatment works at killing the cells once again. The thing is, that “plan b” treatment may not work at all. The cells may give the big middle finger and then we would need to look at another treatment plan. The thing with pancreatic cancer is there are only a few types of treatment known to work. So if plan A stops working, plan B doesn’t work at all and all you are left with is plan C, your chances of survival dwindle smaller and smaller.
Now we know how treatment works with pancreatic cancer, what’s the time frame? “You probably have a year.” This is the TYPICAL life expectancy with pancreatic cancer.
BUT, here’s the thing, no one knows how long you actually have. You could be on Folfirinox and your cells never become resistant. We could go on an oral radiation pill and have chemo treatments to kill the pop-up cancer cells and that can continue for one year…two years…five years…who knows. Remember, we continue on this treatment as long is it is working. Here comes another “but”…BUT don’t get your hopes up too high because the cells WILL become resistant at some point. That is a guarantee. The time frame is the only thing not set in stone.
It’s like a constant war and you want to settle that score. But you’re bruised and beaten and you feel defeated.
The news we received was hard. What I just wrote may seem like I was super calm and collected when we got the information but that was totally analytical Stef talking that through. Emotional Stef was a mess. It was the longest and hardest car ride home from the doctor since we got the news on Day 0. Sean passed out in the car sobbing and I cried the entire ride home. Yes, we wanted to know the next steps but no one wants to hear you “probably have a year”. I just kept looking over at the man that I love and kept thinking to myself, please don’t leave me. Please fight as hard as you can because I am not ready to say goodbye.
Keep on fighting. Out of the dark, into the light. It’s not over. Hope is rising. Never give in. Never give up. It’s not over yet.
The information came. The tears flowed. The hugs were tighter. The kisses were sweeter. And our love grew stronger. We talked about the future and we talked about the upcoming cycle 8 chemo treatment. We had an open conversation about the pain, the suffering, and the anguish. Was all this worth it for “maybe” a year? Our exact words to each other “You bet your sweet ass it is!” So much can happen in a year. Just look at 2020. Who knew we would be in a world-wide pandemic. Seriously, can we just rewind time and go back to 2019? You just do not know what can happen in a year.
Until the Kingdom comes. Until the race is won. Don’t you ever give up. We will never give up. It’s not over yet!
So here we are on Day 117, currently sitting at the Mayo Clinic, getting ready for Sean’s pump removal to complete the infusion for Cycle 8. This journey is definitely not over yet. If we only have a year, then we are going to make this the most kick ass year yet.
To everyone who’s hit their limit, it’s not over yet. It’s not over yet. And even when you think you’re finished, it’s not over yet. It’s not over yet. ♥️