Svo Hljótt...

           Gonna be a little graphic in the first two paragraphs, so if you would like to continue reading and have a stomach that doesn't mix well with lightly graphic content, you might want to skip past the first two paragraphs. So the past three weeks weren't the best. I had what felt like the flu for most of that time. Had a cough that was pretty relentless-without much regard for time of day. Eyes were crusted shut every morning for a week or so of it. Ears and nose were stuffed...then the nose began running. Had night chills. Fever was present for most of it, but really saved it's best for the beginning of the third week. Monday morning, I woke, went to the doctor. They took my temp and it was 98.2. The PA said, "Well, why are you here again?"-joking, of course. During my office visit, I started to shiver. I felt a night chill coming on. Luckily I was at the end of my appointment, so I made my way downstairs to a restroom. Felt a strong need to be sick, so I was for a little bit.
        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.

I lean against you, in calm everything stood still, and you, you sang to me so quietly- Jónsi


With love,

Brian

Every moment was so precious.

       So two days ago, I had to get an echo-cardiogram done on my heart. It's standard procedure to get them every so often when you are on certain kinds of chemo. I walk into the curtained enclosed room and give the standard apology to both women for the torso I'm about to unveil. I lay down on my side on the hospital bed while the two nurses begin prepping for the procedure. One turns down the lights and the other sits at the computer next to the bed prepping the gel they use on your chest to get the images of your heart. They begin by asking me a series of questions that are required to be answered before beginning; and end up discussing the details of my condition that are not required. We talk about the misdiagnosis, the effects of chemo, and Harper. Not long into the details the woman operating the machine asks that we stop the conversation so she can listen to what she is looking at on the screen. I stop talking and close my eyes. I lay there for a few seconds before I start to hear my heartbeat. Laying on the hospital bed on my side, mentally being taken back to the time of doctor appointments where we were able to listen to Harper's heart beating. It immediately takes me back to when Karen and I would go for pregnancy checkups. I just laid there in the dark, thinking about how different things were then, and listening to every beat and feeling the weight that every beat carried along with it. I hated the nerve-wracking feeling that came with waiting for the midwife to find the heartbeat. There was nothing like when they found it and there was a calm that came over all of us. After a few minutes, I then stopped remembering and was back in the present hooked up for an echo-cardiogram-still rooting for same strong heartbeat that we heard with Harper.
         I'm a sucker for vulnerability. Watching Harper lay in bed at night as Karen and I sing her to sleep still is the best, but hardest part of the day for me. She lays there in her footsie pj's, holding her stuffed animal, as she is covered up by a little blanket. She looks up at both of us as we sing her to sleep. Her eyes are tired as she watches us. They are ready to close with ease because of the trust that she looks at us with. The trust that in her crib, with all of the items we and loved ones have surrounded her with things that give her the security that a baby needs to be able to close their eyes and go to sleep.

            Over the last two years I've become an expert at crying. If I'm honest, before Harper and cancer, I probably cried one or two times a year. I realize now how unhealthy that was. Now, well, I don't count anymore, but me crying happens more than Karen shaves her toes (which isn't often...so that's a bad example). So with this expertise in the area I am able to control how I cry. It's not some sloppy affair that would normally accompany a once a year downpour. I was able to lay there on my side, with my eyes closed, and quietly have a moment. It wasn't a moment that required a "there, there" from someone. It was quiet and quick and the nurses didn't even notice. I don't share this for the sake of sharing something dramatic for a blog entry. It was a moment that would've happened whether or not I was with or without cancer...the result of perspective formed over the last couple of years. Maybe it's because of the sound of a heartbeat reminds me of how fragile the life of my daughter is, mine is, or anyone's is...or maybe it's because of the time in my life when we had Harper only to focus on. When her heartbeat was the only one we had to worry about.
         I'm thankful for these moments. I'm thankful that I don't cry just once or twice a year. I never spoke with my father about those sorts of things. I doubt many men do. Like many who die unexpectedly, I'm sure my father was left with a list of things that he wishes he would have said to others prior to his death. Part of why I think cancer has been a blessing is that the threat of death forces you to wrestle with the mental/emotional items that you likely would not if not face to face with it.  It's a real juggling act to make sure that I am doing what I need to do to function each day, while making sure you make the most of your time with those around you. I think that each day everyone struggles with that balance to some degree. They may not feel the urgency that some of us do, but on some level, maybe we all should love our families/friends with a little more urgency. I am blessed enough to have cancer and all the time it can afford me. There's not a minute that I would want to spend apart from this one.

 

  

 "Now the sky could be blue, I don't mind. Without you it's a waste of time."- Chris Martin

With Love,

Brian

Still Fighting It

              I think I can say with confidence and some regret that I was a spoiled child for much of my upbringing. I was born an only child- son of a Navy man and an English woman. We moved around for most of the first ten years of my life. We tried life over in England during my 7th grade year, and before my dad could tie up loose ends in the states, it was decided that we would return back to Florida to continue our life in Jacksonville. I was indifferent about the decision at the time. I liked being the odd kid from the US while I was in school over there, but I also missed my friends back home.
              My father's life ended when I was 17, a senior in High School. His passing was abrupt. Heart attack in the middle of the day. No goodbyes. Not to his family or the people around him when it happened. It was quick. His tongue had swollen, leaving no breath to pass through his mouth to say any final words. During the time of his passing, our relationship was near the bottom of another one of the valleys in our relationship. Without going into too much detail, he had some drinking problems that drastically changed my opinion of him when I was in elementary school. The relationship never really recovered and then on December 3rd of 1992, the day before his birthday, he died.
            It took me a long time to mourn him. If I was honest to people back then about it (and I wasn't for the most part), the stress in my life had dropped considerably since he passed. I felt bad for those around me who missed him, but I wasn't one of those people. I would simply reflect on the reasons I did not like him and resented him growing up. That seemed to move me past any sort of grieving I might experience. I think part of why I was so confident as to why I was justified in my position was that our relationship was the way it was because of him and his drinking. I still believe that to this day. The thing is though, if you live long enough, you tend to find that life can be difficult...and not just for you. I think I have learned more about my father since his death than I did while he was alive. I learned a great deal about the life he had before he became, "James Newton, Father".
           

                                                 My dad and I, sledding in Rhode Island

        When I met Karen and we started dating, she met my mother and step-father not long after. My mother is half of who I am. So, as with most people, you want anyone you might end up with to meet your family. While my mother is half of who I am, I don't think anyone would tell you that the personality you see from me in public is very much like hers. We are alike in many ways, just not in this area. I, like it or not (and am reminded often by the remaining family that knew my father) have his personality. The relationships I have with those around me are guided by much of the personality that I inherited from him. I am thankful, but jealous at times when Harper is around Karen's parents. Harper is seeing who her mother is through these two people. As I am able to see both of Karen's parents in Karen, I am certain Harper is able to see the similar traits as well.
           When Harper was born, I was overwhelmed. Not sure I can explain each feeling that was present at that time, but I remember holding her, looking at Karen and feeling the excitement of going to get the rest of the family to come in and meet her. Seeing their reactions was something I was really looking forward to. That was one of the first times I can say I really missed my father. He was supposed to be there for that. He was supposed to love Harper more than he loved me.

            That has been part of what is difficult about this cancer thing. Harper will always have pictures, videos, stories, and such to plug in holes of the story she is making out of me. But my personality? That's something that is harder to come by. Either directly from the encounters she might remember from me. Then if not me, it should be my father. But as life would present this situation, we both may not be here to leave that mark on her life.

             I guess what I am saying is that relationships with those who have passed are still relationships. As I mentioned, I've learned more about my dad since he died, than while he was alive. And in doing so, It changes the way I view the man he was then, and now. So in a sense, he is still alive. He is changing in my perception, which in many ways, changes me. I think every parent wants a chance to tell their story or to their children. This verse from a Ben Folds song seemed applicable: "Good morning, son
In twenty years from now
Maybe we'll both sit down and have a few beers
And I can tell you 'bout today
And how I picked you up and everything changed
It was pain
Sunny days and rain
I knew you'd feel the same things"

            I'm thankful for the person I've been able to become because of many of the good and bad things I saw my father experience. I'm thankful that I see him in me. I'm thankful that I'm not handcuffed by many of the things in life that held him back from being the person I believe he could've been. I'm sad that we never had that conversation of reflection as adults. I'm thankful that my life wasn't taken in a split second where I would've left things unsaid to Harper. Regardless of how long my life will be, if I need to savor every drop of this imaginary tea. Cancer's gift for the day is the time it has given me, that a heart attack did not give my dad to have his drink with me, and his granddaughter.

 "I picked you up and everything changed" - Ben Folds

With love,

Brian