Exactly what the infographic predicted

Remember the infographic I made on June 1, the one that mapped out my full 14-day mFOLFIRINOX with Erbitux and Udenyca cycle? I went back and looked at it today and it is almost spooky how accurate it has been. Saturday and Sunday were laid out as exhaustion days with cold sensitivity, loss of appetite, and diarrhea. Monday was supposed to be the day nausea starts subtly while the cold risk starts to wane. That is exactly the road I have been on.

The truth is I have been so wiped out since Saturday night that I could barely function Sunday or Monday. Physically exhausted in a way that is hard to describe. The cold sensitivity is finally starting to ease, but the fatigue is the real story right now. I have not had the energy to write, and honestly I have barely been able to read the messages people have been sending. I see them piling up and I want everyone to know I am not ignoring you, my body is just refusing to let me do much of anything.

And then there is the nausea. It is almost 2 AM on Tuesday morning as I write this and I have definitely had to take the Zofran a number of times. All the side effects listed on that little graphic are real and they are happening in real time. It is one thing to know what is coming. It is another to live through it minute by minute.

I also want to talk about what is going on in my abdomen. My day-to-day has definitely been more about symptom and side effect management than pain management, but since my edema has completely gone away and I have no body swelling, my body weight is back to about 140 and I can feel everything going on in my abdomen with no interference because of it. It is almost like I can feel these lesions hardening, or feel that they are angry. I was debating whether or not I was having cramps or if it was just my body feeling different. I described the feeling like my mom used to describe her ovarian cancer, like there is a monster in your stomach that lives there and it is angry.

But if I am being completely honest, the thing breaking my heart the most right now is food. I am having a very hard time eating the last couple of days. Everything tastes like metal. Last night I tried to muster up enough energy to cut up a small watermelon, but it tasted terrible. Then I grabbed a mandarin orange and that tasted terrible. Then I grabbed a gluten-free cracker and that tasted like cardboard. My daughter Gina sent me a beautiful video of her cooking and when she comes home next week she will likely be cooking for me, but I broke her the news that I have lost my taste. I do not know if this is permanent or what, but it is really sad and I definitely do not see it helping with my appetite. I would never in a million years think I would have a problem with food, eating, or appetite because it is one of my absolute greatest pleasures in life. To lose my ability to taste. Food is absolutely depressing.

The one bright spot was Saturday during the day. It was genuinely amazing, and I want to tell that story properly. But by the time I sat down to write about it Saturday night, I was already past the point of no return with fatigue. So I am going to save Saturday for Tuesday's update when I can do it justice instead of half-writing it through a fog.

For now I am just trying to honor what my body is telling me. Rest. Sip fluids. Nibble what I can. Trust the plan that Dr. Sidani at Northwest Cancer Centers, Dr. Shergill at University of Chicago Medicine, and Dr. Manz at Dana-Farber laid out for me. The infographic told me this stretch was coming. Knowing it was coming does not make it easier, but it does make me feel less crazy when it shows up exactly on schedule.

More soon. Saturday's story is on deck.