I realized just how much I've changed over the past year and a half as I left the restroom and made my way to the car. I was walking and started to feel sick again. Instead of rushing back to the restroom, I just began throwing up to my side on the grass as I was walking. This is something I never would have done in the past. I was still shaking as I made my way to the car. I just wanted to get in the car, out of the 75 degree temp outside that was freezing. So being sick in public took a backseat to getting in the car and turning on the heat. I turned on the heat, full blast. Kept it going with the vents aimed right at me the entire 40 min drive back to our house in St. Augustine. The rest of the day my temperature never dropped under 103.
So my oncologist decided that there were likely 3 things my symptoms could be the result of: 1. My cancer is spreading/growing. 2. One of my chemo pills could be causing my cough and fever. 3. It could be a virus they haven't pegged yet. So he called for me to have the CT scan that I had scheduled for the end of March up to last Friday. He wanted to check to make sure the cancer wasn't spreading and was still responding to the meds. Thankfully, we were blessed with great news again. The cancer has continued to shrink and is not likely the cause of my 3 weeks of symptoms. I've stopped taking the chemo pill as of Friday night. This is in an attempt to figure out if the chemo pill is responsible. So far this weekend, my fever was either non existent or low grade. It sounds likely that the pill is the culprit, but we won't know for sure for a little bit.
The past 3 weeks I missed a lot of work, and was unable to do much of anything around the house. Karen's mother had to come up and help out as did many of our friends during that stretch. My situation once again causes others to change the course of their daily lives to help out me and my family. This sort of information isn't new to share. It's mostly the same sort of thing that we put out there every so often because every time we experience illness we are reminded of just how much love and support we have. When people aren't around, it's just me, Karen, and Harper. During times when I feel healthier than the norm, I am able to help out around the house more, I can be more of a real father to Harper, and I can feel like a normal, productive, human being. Unfortunately, that isn't the norm. Most of the past, almost 2 years, I have spent my time recovering from a cycle of chemo, an illness like we just got through, or surgery. So that typically means, I sleep a lot in bed or I'm laying on the couch watching life move on.
It's easy to hate yourself during one of the sick/recovery stretches you go through. Not trying to be dramatic, but that's really how you feel at times. Anytime I've brought that subject up with anyone, the response is the same, "It's not your fault you have cancer." Of course I appreciate the support, but there is nothing that would make me feel different than I do during those stretches. When you are on the inside of all that we experience, you understand everything that is going on around you. You are physically sick, but mentally, you are fully aware of all that is going on around you to make life continue on without your contribution. You spend most all of your life learning how to develop a work ethic and learn how to produce the results you want and kind of effort goes in to achieving those results. Then you just have to set all that aside and be the person you never wanted to be. You hate yourself as a husband, because your wife is functioning as a single mother essentially, and you have to fight yourself from letting yourself think that this might be how it would look if cancer wins out. It's like watching your life through a window. You watch everything happening that you should be involved in, but can't. You can see how your lack of involvement impacts everyone in your life, and there is nothing you can do about it. You hate yourself as a father because your daughter can't express it exactly, but she wants and needs you in her life as any other 2 year old would. So you see the distance between you and her grow everyday you are not capable of being the father you want to be. I'm good with my daughter rejecting me because I'm a jerk, but it's extremely difficult to swallow when I feel distance from your daughter because I'm not physically able to keep up with her. Then when you feel better, you want to cram, however many days/weeks you weren't yourself into the first day you feel better and she is, well, a 2 year old and doesn't know how to take you because you aren't the person she has come to know. You feel the pressure because you don't know how much time you will feel this good, so you want to spend all your time with her. Then you feel bad because she rejects you because you've been an absentee father and you know it, so you want to do whatever you can to make it up to her, so you say, "Ok, I can play the patient game." Then you remember that you don't know how much time you have...period. Pressure. The point is, she is two. It's never her fault. But it's cyclical and you are the reason things aren't right in her eyes. Cancer? What is cancer to a two year old? You're laying on the couch, she's playing on her toy horse. Your fault. She's playing with play dough, you are laying on the couch. Your fault. She wants to go outside and play with chalk, you are in bed. Your fault. It's always your fault when your child has expectations of you that she/he should have and you aren't providing them for them when they are at an age when you can't explain the situation to them. Is it my fault really? No. It's cancer. It's life. But that's not what matters. What matters are her feelings and how she perceives things. Hating cancer gets me nowhere. Hating myself in some ways helps motivate me to push myself to be a better me. Please don't read this and think I walk around hating myself. Most everyday I'm extremely happy and feel beyond blessed for the life and love I have. Darker moments come from during couch time.
I remember when we were sitting in the neuro unit at UF Health and the brain surgeon said to Karen and me that he wasn't sure how much time we had left, but he knew it wasn't as long as it was right after the exam that followed the surgery. Right then there were people saying, "you gotta see this...you gotta do that!" Not once did I say to myself, "Yeah, that sounds good." All that I want to see or do in my life I want to do with my family. I want to go to Target and be told it's my turn to push the cart with my daughter in it and have her give me the stink eye when I tell her to sit down. I want to watch Peppa Pig with my girls and make pig sounds with a British accent. I want to drive my daughter to school and start to sing along to the Frozen soundtrack and be told, "NO DADDY!" by the 2 year old vocal coach sitting in her pink throne in the backseat. I want to nap with my family and have someone (wife or dogs) snore louder than my daughter. Before when I wanted to travel the world and see things; I was looking for something to experience and remember the rest of my life. Now all I want to see is life from anywhere but the living room couch, while holding my wife's hand as we see the world through the eyes of our daughter.
With love,
Brian
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