How do you write about the hardest week of your life?
I don't know. I guess you just write.
I want you to imagine the person who you ALWAYS go to when you need help. The person who can make you laugh harder than anyone else. The person who you call your rock. For some of you that may be a parent, a sibling, a significant other, a friend....for me, it's my dad. Now imagine that one day, that person just....well... I don't know how to describe it. Imagine they are physically in front of you, but mentally, they can't talk to you or look at you. They are just....there. But not really there.
It all started last Wednesday. After my dad's weekly doctor appointment, my sister talked with my mom and I about how concerned she was about him. He was expressing some serious confusion. He asked her multiple times why they were there, he couldn't recall that my brother had just been in town, and he couldn't remember that he was supposed to be coming to the Notre Dame game that weekend.
That night, I went over and made dinner for my parents and my mom and I witnessed the confusion, plus repetitive behavior (such as checking the clock, going to the closet and turning on the light and coming back, etc.). We became more and more concerned throughout the night.
The next morning, my dad woke up and said he had a nightmare. He couldn't recall what it was about. The confusion was still present, and he was pacing. We called our doctors, and eventually brought him into the hospital.
And that's where the roller coaster ride really began.
We all assumed that perhaps there was more swelling in his brain from the radiation. So we agreed to increase the steroids. But we saw no improvement. We had to wait three painful days for an MRI....and those days, plus the ones to come, were absolutely terrible. We would get moments of lucidity, where he would know who we were and why he was in there. But we would quickly lose him again, and he would be confused....or repeating what we were saying...or the WORST, he would go into an unresponsive state where we wouldn't get any eye contact. Those were the most painful moments.
It was as if we had lost him. Although he was there physically, he was mentally gone.
We began the test, trying to find the cause of this. MRI? Clear. Swelling was done (almost gone, actually). No new tumors...no tumor growth. That's GREAT, but still leaves us in the unknown.
EEG? Clear. No seizure activity. Which was a bit troubling only because my mom and I personally witnessed at least two seizures prior to the EEG.
Spinal tap test? Clear. No cancer in the spinal fluid. That was my biggest fear, because that type of cancer is very difficult to treat.
So that leaves us back to square one. What is happening?
We HAVE noticed that as he has weened off the steroids, we see SLIGHT improvements. And I do mean slight. Like, today my mom and I had an hour or so of lucidity with him. He was still somewhat confused, but he at least knew who we were, he looked us in the eye, he cried, he told us how scary this has been. Another sign of improvement is that he ate lunch today, and he hasn't eaten in three or four days. Another sign was that even though he wasn't quite as lucid at one point, he did look at my sister and said "how are you, Mo?". HUGE difference from his either catatonic or repetitive phases when he wouldn't look at us.
But we still don't know what the root cause of all this could be. There are theories of steroid psychosis, psychological issues, etc...but we don't have a firm answer. And that, my friends, is terrifying.
Each day has been an adventure. We are never sure what we will see when we walk in the hospital room. Will he look at us? Will he just repeat what we say, or will he come up with his own sentences? Will he have a seizure? Will he talk at all? It's always a surprise. And it's always hard. Especially in those small moments where we have the lucidity, and then we quickly lose it again. We have hope, and then that hope is very quickly replaced with fear.
So many people have asked us how we are holding up. I can't even answer that. When I'm at the hospital, I'm either working (my job has allowed me to work remotely) and trying to pull my dad back out of this state or crying or asking questions or hugging my mom . When I am at home I am feeling guilty for not being there, anxious about what could be happening at that very moment that we are missing. I have turned to Google, which is super dangerous. But I can't help it. I want to know what this is, and I want my Daddy back.
This week has been, without a doubt, the worst week of my life. We have gone through every stage of grief- not because he has died, because I firmly believe whatever THIS is is not going to kill him, but because we keep "losing" him mentally. I have cried more than I ever have in my life. I have punched walls, kicked chairs, hugged more people than ever before.
When my dad was first diagnosed with cancer, it was scary- but he was still here mentally. In fact, he held all of us together. He was the strong one. He made jokes, he was ready to fight, he was the same dad I've always known. This, though, this is so much different. This is hell.
I cannot express how grateful I am for the incredible support, prayers, and love that has surrounded myself, my mom, my sister and my brother this week. We appreciate it more than you will ever know. Some of our dear old friends, along with the St. Hugo Community, have embraced us and delivered meals, cards, and have said many, many prayers.
Next week I have to get back to work. I pushed all my meetings last week to next week, hoping this would all be over. I can't reschedule them again- I have to just power through it as best I can without feeling guilty. But damn, will I be praying and hoping for a change.
Our biggest fear is that he will stay like this forever. I can't let that happen. My dad is only 60 years old.....and he is one of God's most special children with his gentleness, kindness, and genuine concern for others. It's not time for him to shut down yet. He's got a lot of people to meet and to inspire. We need him to keep going, just the way we know how. We need him to come back fighting.
I just want my dad back.