April 14

Baby Kai is 6 months old. He had his half birthday yesterday. We celebrated with sweet potatoes. It was quite a party.  He is getting so big.  It’s like he grows overnight and is bigger each morning. It’s so awesome to watch him learn about the world. He’s so observant; always watching and taking it all in. It’s just so crazy that this amazing little creature is something we created. That this developing little life is literally part of us. And even if genetics didn’t play a role, just watching a baby develop into a person must be the most incredible experience of all. When we came home from the Clinical Center on Monday, my mom, step-dad, and Kai were waiting for us on the front porch. And when we pulled up and got out of the car and Kai saw us, he gave us the most enormous smile of happiness and recognition. He was happy we were home. That smile is the most beautiful thing I have ever seen.

This week I’m just resting and recovering. I feel good, but am very tired. My fabulous Jeff and wonderful mom are doing just about everything that needs to be done. Jeff even cleaned and organized the bedroom, which was particularly great because I’m having some weird clutter complex right now where I have an uncontrollable need to get rid of or put away almost everything around the house.  To the point where I even had a nightmare that our house was so full of stuff that I couldn’t find my way out. My mom is taking the morning shift with Kai when he wakes up for the day, so that I can sleep in, which is fabulous. I’m not getting a whole lot of sleep right now. Other than being tired, the most difficult side effect of the IL-2 is the nightmares. They are not just normal bad dreams. IL-2 nightmares are multi-layered, complex, vividly realistic experiences of pure horror. For me, they mainly revolve around me being stuck in the house (which is not my house but rather a complex, never-ending labyrinth of rooms) trying to find my baby who is in terrible danger. And in these dreams, I dream that I wake up and then something even more horrible happens.  And then I wake up again, and again something happens. And I wake up and wake up again in these dreams to the point where I have no idea when I’m awake and when I’m dreaming even when I finally wake up for real. Trying to come out of the dreams is like trying to claw my way up from a pit of unconsciousness, and I wake up drained and exhausted. The dreams are so terrible that I am afraid to go to sleep at night. The doctors said this is a common side effect of the IL-2. I don’t know if it’s the mind reacting to the treatment along with the rest of the body, which would make sense; if the IL-2 is eliciting a full body response, then the mind should be involved too. Or maybe it’s a psychological response to the pain of the treatment and the fear of having cancer. Whatever it is, it is terrifying and I am scared all the time. I am scared that someone is going to break in and steal baby Kai. I lay awake for hours just listening to make sure I don’t hear anyone. I am scared that something is going to happen to Jeff every time he leaves the house. I am scared of going back to my “normal” life. I am scared that the next scan will show that the cancer has stopped responding to the IL-2. And I am scared that I will be scared for the rest of my life. When a runner pushes herself as hard as she can, runs as fast as she can and gives a race everything she has – sometimes she crosses the finish line and then throws up. I think that is what my mind is doing now. I have been focusing so hard to a positive outcome. On powering through to the cure. On undergoing the treatments with my whole body and soul. And now that we are almost across the finish line, all of the fear and worry and sadness that have been ignored are coming out full force so that they aren’t pent up forever. So maybe it’s healthy that it all comes out now. And I embrace a natural emotional response to a traumatic situation. And not even for one second do I lose sight of how extraordinarily lucky I am. And even in the most terrifying dead of night, I am so very thankful for the gift of this journey and the gift of my cure. I know this fear will pass, and only pure joy and gratitude will remain. I already have more love and goodness in my life than I ever would have dreamed. I am already happier than I ever thought possible. And for that, I am thankful.

Today I am thankful for the gorgeous weather; my mom for all of her help with Kai and everything else; the continued support of our neighbors and MMG family; the incredible experience of this multi-faceted journey; and, as always, my most wonderful husband Jeff who has given me the most wonderful life imaginable, and my most perfect baby Kai. I am forever in your debt for allowing me the sheer pleasure of knowing you.