You were.

         When I daydream (which is often) it's not usually about anything except Harper. I think about how tall she might be, how she is going to look in a few years, and usually what areas she is growing in...both physically and mentally. If how protective I feel is healthy for me or for her. 

          Because of cancer I have to check my daydreaming as to not go too far down the road. That's difficult and usually puts an end to the daydream. I look at women all around me and wonder what their lives were like growing up. Karen and I often watch the show Intervention. When we first started watching, we would always wait for what seemed to be the inevitable moment in the story when you hear about some kind of tragedy that occurred early in the life of the addict. Either they were abused in some way or a member of their immediate family died. Didn't happen in every show, but it absolutely happened in the majority of the lives of the addicts. Now when we watch the show I am left thinking that this could be Harper and am reminded of how this is just one of those things I can't control. I don't think it is likely because of the kind of mother Karen is and because of the village we have around us, but it still reaches deep in me and scares me to death. 

            My dad died when I was 17. We had a pretty rocky relationship. I was full of insecurity, anger, and an inability to work through it because of me having the maturity of a 14 year old. I easily could've run the addiction route. The tendency for addiction runs like wildfire in my family. I very easily could have become what Intervention's odds would have me be...but I didn't. Matured 14 years or so, the path of least resistance should've been laid out in front of me, but I was pulled in another direction. 

          I was part of a village of friends who kept me from drifting too far from the path that led me to the family I have today. Without my mother, my  friends, and their parents I most likely would've ended up the predictable statistic.

          I take peace in that nowadays. Believing that the village we have in place will pick up where I inevitably will leave off. That peace allows me to daydream a little further down the road. When I can have conversations with Harper where she knows that I've lived a full life. I've loved and been loved more than I need for this lifetime. I've seen some of the most beautiful places on earth and have found myself through my relationships with those I love. 

           I remember watching Forrest Gump when I was around 29? (Not for the first time). There is a scene at the end where Forrest is recapping a few of the moments of his life that seemed to mean the most to him to the love of his life, Jenny.  Most of them were really amazing moments he spent alone in nature. You may remember Jenny saying "I wish I could've been there with you." He replied to her, "you were." It really made me want to see the world.

           I spent a few years plugging in hiking trips when I could. I want to be able to have those conversations with Harper. I want her to know that if she is able to travel to those places and beyond, that I'll be with her too. Physically or not. 

With love,

Brian

The Rising Tide

        So I woke up this morning and part of my morning routine is checking Facebook while I sit down in a little room all by myself. It's a little room with one seat and some soft paper rolled up on a piece of cardboard within reach. While checking my Facebook account, I scrolled down and came across a picture that was posted by one of my favorite people in the world. Here is the picture:

 

            I don't know that I know many people like her. She and her son Zak create their own happiness in a way that is obvious to others. A way that is infectious to those they are around. It's a pretty amazing thing to see people respond to adversity in a way that almost makes you want things not to go your way.

           The other day I was limping because of some pain in my left leg. Nothing new there. There was some cancer in there a while back that was radiated. This past month I got my first in a series of injections that are aimed at bone regeneration. I don't know the extent to which the cancer ate away at the femur, but it still hurts. It has some good days and some that aren't so good. I'm not sure how many more months the injections will continue, but I am sure it won't be taken care of before my next injection. The point is, later in that same day, I was sitting down thinking about the leg and I started to make a mental list of all the things that have lingered on and flare up from time to time. It actually surprised me when I thought of how many things there were. I really don't want you to think of this as some way of getting sympathy or anything along those lines. What I am trying to get at is that I don't wake up or go to bed upset about these things. I don't wake up counting all the things that are causing pain or that I am dreading about the day. 

         Before cancer, when I would roll out of bed, the list of things that I was dreading about the day was much longer than the list of things I dread about the day now that I have cancer. It's not because traffic sucks less with cancer. It's because all I want out of life is to be with my family. To spend time with my girls. When you can wake up, roll out of bed and start your day and end your day with what makes you want to live, there isn't very much that really can get you out of that place. I had a brief time back in 2014 when I had cancer, but didn't know it, and had the life that I have now with Karen and Harper. I appreciated my life and the new perspective that Harper had brought to my marriage, but when I got up in the morning and went to bed at night, what happened in between played a much larger role in determining the feeling I had waking up and going to bed. 

          When you get the news that you are going to have cancer the rest of your life, there is a lot of it that is processable and a lot that is not. The parts that you are able to process are typically pretty easy to deal with. They aren't without a wide range of emotions, but it serves to really shift your focus directly on what drives you. The things you can control. With cancer, you can't control much, but you can control how you approach each day. I can choose to be happy with a lot less resistance than I have experienced prior to all the lessons cancer has brought our way. I've learned so much about what I can do without as long as I have what I need. Which surprisingly enough isn't very much. Just two girls who look a lot alike.

"we will ride the rising tide"- Jeremy Enigk

With love,

Brian

        

Love Actually

              The movie, "Love Actually" was on today. Of course today is Valentine's Day, so it made sense and I watched most of it. At the end, Hugh Grant closes the movie out by saying that despite what you might feel on a daily basis, if you look around, you will see that love actually is all around. Picture it, St. Augustine, 27 hours ago. Last night a group of "friends" put together a get together for me and my family/friends. I was first told about this get together not long after we were released from the hospital in January. The idea was to get together for....well, I don't really know. At the time I learned of the party, the news from the doctors was pretty bleak and left us planning for a very uncertain future. Then last week we meet with our oncologist and learn that the new chemo is working very well.
               I'm not good at parties. Never have been. Even with a few drinks in me, spiked from girls trying to take advantage of my innocence. I'm terrible at surface conversation. Last night there were so many people in one room who I want to talk with, but for sure not enough time to talk with each of them beyond a surface level type conversation. Karen and I were both pretty overwhelmed with what was done in preparation for the event and with the turnout of people for it. The White Room, where we celebrated our marriage hosted this event. It was fully catered with an open bar, foods of all kinds, and decorated with amazing Redskin decor. The photographers we have loved since our wedding who were responsible for our wedding and photographing our family growing since then Jenn Guthrie and Brent Culbertson were there capturing every moment of the evening. Both the White Room and Brent and Jenn provided us with this evening free of charge. Just overwhelming. I mean, who does this kind of thing? Simply overwhelming. Then, Mary, Katie, and Gayle spent entirely too much of their lives/energy putting it all together. If they aren't careful I'm going to attempt to find words to tell them how much I love them.  In addition, I know a lot of people had to change/juggle their schedules to spend some time there. It really meant a lot to both of us.
              As I just mentioned, I'm not good at parties. There was a particularly strange feeling that made me a little more awkward than usual at this party. I think it was because the original reason for setting up this party was because the immediate future was uncertain and we wanted to gather loved ones to just have some time together. Now, with the immediate future appearing to be a little more certain with the cancer in my body (from the neck down) shrinking, the party seemed to take on a new meaning. I brought that up during the party and a few people said, "it's a celebration of life" (or something very similar to that). It was amazing to look around the room and take everything in, or try to...but the feeling that this party could have a very different feel to it if the news from the doctor last week had been different. It was a very strong reminder that the incredible feeling that we've been walking around with is very fragile. While things are good at the moment, one meeting with the doctor could change everything.
              I think most people were having a good time. I was trying to overcome the fact that I am terrible with surface conversation and avoid thinking about how different the evening could have been if the doctors visit had gone differently. There honestly wasn't a minute when I wasn't engaged in conversation with someone. How many people can say they've had an event put together for them with a room filled with most of your closest friends/loved ones and it wasn't their birthday or a wedding or for something specific? One of my closest friends, Trey recently said, "Why aren't we doing this kind of thing every year?" He was referring to the house we got in the mountains, but the same thought applies to get togethers like this. Why don't people do that? Why does it take something like cancer to pull people together? Not at all talking about my situation, but most people only communicate what they feel about the people they love at that person's funeral. Last night was a prime example of that. I look around and I see all of my worlds colliding. Groups of my friends who really, prior to cancer coming into the picture hadn't met outside of my wedding. I loved seeing the people closest to me, who previously didn't have a relationship independent of their relationship with me, sharing inside jokes and interacting without me there. Relationships are growing. People are communicating with me and I with them about what we mean to each other. I hope that unlike cancer, there is an infectiousness. An infectiousness that prompts others to communicate the unspoken things we all feel, but without anyone actually having the disease.

Thank you, cancer...the great facilitator of communication. 
           
With love,

Brian

My Wife's Reality...TV Show Problem.

                  Last night Karen and I were laying in bed. We have an agreement that I think we are both very happy with. During football season, if there is a game on that I want to watch, I get the remote. The rest of the year, the remote is hers. Her taste in television is mostly "reality".  While the remote is hers, she does allow me to offer up preferences for which shows out of her selected recordings and which shows I would prefer not to watch. If you must know, the shows I cannot watch are: Project Runway, So You Can Dance, and the show about Dance Moms. The rest, mostly aren't as bad as I thought they would be when I just knew them by title alone.
                 Before Karen, I rarely ever watched reality tv. She has recently started watching a new show called, "Newlyweds: The First Year". Last night she wanted to binge watch a few episodes of this show. The show follows like 4 or 5 couples and shows the highs and lows the couples experience during their first year of marriage. I don't like the show. While most of what these couples are arguing about are common fights that most couples experience, I don't feel like the personalities of most of these folks are like Karen and me. Not saying we are better or worse...just saying we are different and handle things differently than most of them do, most of the time. Where is this going...
                  Last night Karen and I got home late (9ish) from our friends house. It was about an hour after we normally put Harper down to bed. We enter the house, quickly move to Harper's room, and begin to dress her for sleep. We take off her party clothes and she's down to a diaper that needs changing. I'm kissing her face as Karen continues the changing process. I pull back and am just looking at the baby squirming on the changing table and Karen says, "She's got my veins." I look at Harper's belly, and I see some blue veins just beneath the surface of her skin. I start to think about the veins and how I want to hold and protect every vein in her little body.- I think about the movie "John Q" where the father is holding a hospital under the threat of his gun because he wants them to take one of the organs in his body vital to his survival and place it in his son's body to save his son's life-
                  I can't say I connected or appreciated that movie then in the same capacity that I do when I recall it now that I am a father. As I stare at her little body all I think about is how much I've learned can go wrong with the human body since being diagnosed. I have to immediately change my thinking. I do, but I  my leap from that train of thought to the next isn't very far. I'm back to just thinking about how much I love this little baby and how much I hate cancer and the thoughts that come with it. Part of what is so frustrating is that death by cancer is just so pointless. I think we all want something to come or grow from the lives we lead on this Earth and even further, in an ideal world, our deaths would even have some benefit to those left behind. Unfortunately, cancer rarely leaves those it strikes with that opportunity. There's no John Q moment that allows you to demonstrate just how much you love your family as much as you do. So you have the present. You have the time God has given you to communicate/demonstrate just how much you love them.
                As Karen and I made our way to bed, we lay down and I look over and see the veins in her forearm and think about how they are as visible (as she said) as Harper's are on her little belly. My girls have the same transparent skin. She turns on "Newlyweds: The First Year" and a woman begins talking about how her husband forgave her for backing out of a flight because she was afraid to fly. She continued on by saying that if he can forgive her for that they can get through anything. I turn and feel the 18 inch scar under my right arm, and the scar on my head that runs from ear to ear. I think about the last two years and the punishment that my body has been through and about how much emotional pain Karen has endured during that time. Not just the worry of becoming a single mother, living life on her own, but the pain that comes along with loving your spouse and watching them go through the stages that cancer can put you through. Then I think about how Harper hasn't had the father she deserves (that I want to be) over that period of time.  I then decide that the veins i've looked at this evening make it impossible for me to maintain interest or devote time (of which i'm not sure how much I have left) to a show where couples would understand if the other wants to end the marriage over the fear of flying. I ask Karen to change what we are watching. She does, without complaint or argument. I then grab hold of her veiny hand and fall asleep hoping that asking her to change the show is something we can overcome.

"Hold on to the thread, the currents will shift"-Eddie Vedder

With love,

Brian

These days...

So the final day in the mountain house was great. We watched the Super Bowl in a theater-like room. All hands were on deck to make loads of great food to eat during the game. I am so thankful that we were able to get away to a location like that. It served to really distract me and Karen from focusing on the scan that awaited us when we returned home.
         Today we took the baby to her school, ran some errands, and then we drove up to Jacksonville to get the scan taken care of at 1:45. The scan was complete in under 15 minutes and once we were back in the car the waiting, as anticipated, settled in. We have an appointment at 8:30 tomorrow morning to review the results. As we drove home to pick up Harper the anxious feelings that we have unfortunately become familiar with over the past two years creeped back in far too quickly and too easily. Just the thought that others would know the results before I did bothered me. That I would have to wait like 16 hours to get the results. Typically, when we are waiting to hear the news, as soon as the wait begins I start to over-analyze every word, facial expression, and tone that people communicate with me use. It goes into hyper-drive when we step foot in the doctors office.
          We picked up the baby on the way home. When we got home I went out into the backyard to pick up some trash that had flown in via the strong winds we had earlier. When I came back in the house, Karen was sobbing. Feeling panicked I asked her what was wrong (assuming it was just another dip into a valley) and she said, "They've all shrunk....BIGTIME". I didn't understand what she was saying at first. So I asked her to clarify. She did, "All of the cancer in your body has shrunk...BIGTIME". I understood, but did was not process the information as real. It took a few minutes of Karen crying and reading off the text from our oncologist. He basically said that the cancer that was widespread was responding very well to the chemo pills I have been on. It was working..."BIGTIME". We lost it, together. It felt surreal for about an hour. The same intensity that came with the conversation we had about a month ago with the neurosurgeons at UF came with the news we got today- It's just that the news today, while it brought tears as well, was filled with euphoria.
          The fear that had been present in all of our thoughts was replaced with hope and excitement. I should be clear...we have not scanned the brain. We do not know what is going on up there except I am still smarter than most of you. It's responsible to remember that chemo does not travel to the brain, so it's likely that there hasn't been much change for the better up there...but no new symptoms, likely is better news than news that accompanies new symptoms. We are super excited about the news, but we have to temper the news with a reminder that the cancer is still in my body and brain. It is responding very well to the treatment, but it isn't gone completely. We still have to meet with our oncologist tomorrow morning to go over everything. One thing I want to ask is whether or not he feels the cancer responded to the chemo or the immunotherapy we started back after brain surgery. We will get the answer to that and have a plan as to what we are going to treat next and what will we treat it with.
        So tonight and for the immediate future, me and my girls will enjoy our life together...with a little more hope and a little less fear. John Wayne once said, "Tomorrow is the most important thing in life. Comes into us at midnight very clean. It's perfect when it arrives and it puts itself in our hands. It hopes we've learned something from yesterday." We certainly learned a lot today.

"There's no need to hide...We're safe tonight"- Eddie Vedder,

With love,

Brian

Ride the lightning

            Last week, Karen, Harper and I hit the road and drove up to a house in the mountains of north Georgia. The house was in a small town called,  "Blue Ridge". It was a pretty long drive, but for me, the mountains are what the beach is to many Floridians. The trip was initially supposed to be my Christmas gift and was only supposed to be Karen, Harper, and me. After some conversation we decided it would make the most sense to include a few others on this trip. So Karen contacted a few people, and we ended up with about 32 people either staying or visiting the house we were staying in. It really was just a great excuse to get a lot of people we love or find attractive together to have a good time and forget about the last month for a few days. The house was not capable of holding everyone we would have wanted to be a part of this (landlord insurance policy), but we really tried to get as many people in there as we could without breaking house law. People came and went in waves- which worked out well for numbers. Some folks there I have known since I was a student in middle school and some others were there I have known since I was a teacher in middle school.
             You may remember a post I placed on Facebook a few weeks ago. It was of me and my friend Zak getting a lyric from a Pearl Jam song tattooed on our forearms. The lyric was split in half. The first half was on my arm and the second on his. Karen and I were getting tattoos that matched that day. When I arrived at the tattoo shop, I decided I wanted to get a third tattoo. I wanted to get a lightning bolt on my wrist. The placement was going to be in front of the lyric I was having inked as well. When the two were complete Zak, Karen, and my friend Jessica all thought that the lightning bolt was supposed to be a part of the lyric, so Zak ended up getting a lightning bolt as well to bookend the lyric. Karen handled her tattoo like a champ. I wish I could say I did. I was able to maintain a pretty good poker face during the process, but if i'm honest, the process was much more painful than I anticipated. Going in, I thought, "I have an 18 inch scar under my right arm from the mass removed this past August. I had my skull sawed open and then stapled shut. Trey has given me more purple nurples than I can count". Despite this resume of pain, the tattooing ended up being an experience I would have preferred to have been medicated for. So the message here is that if you have survived the inking process, you are certainly able to endure the pain of skull splitting. After Zak, Karen and I were complete my friend Jessica decided that she would go ahead and get the bolt tattoo on her wrist as well. It was really a shock. She isn't really the sort to take ink on a whim (obviously, neither am I) so I was really excited and touched that she wanted to do so.
           I should probably share the reason for the lightning bolt with you, so I will. In October of 2014 when we were diagnosed and I ended up finding myself with a lot of time on my hands at home. Resting while the chemo worked it's way through my system, declaring war on my sarcoma. Turned out it invaded the wrong country---sarcoma had nothing to do with this. Melanoma was the target we were needed to search for. Anyway, I had time on my hands. I found myself laying on the couch listening to a lot of songs from my high school years through YouTube. Pearl Jam happened to be one of them. Often, I would set the computer aside and read a book (yeah right)....I'd watch tv or nap. As YouTube does, it plays the video you select, but often the next song it plays is a song that is often one that sounds like or is somehow connected to the song you just listened to. One of the bands that surfaced on the playlist was Foo Fighters. A band that I gave the first album a listen to, then moved on and didn't give them a second thought....until now. Their lyrics were really connecting to what I perceived my situation to be. Odds stacked against you...passion for life, recently realized in a way it never had been before..."never surrendering". So I began to listen and then I began to look up shirts/artwork from both Pearl Jam and Foo Fighters. A common theme both bands shared was their use of lightning bolts. I decided I wanted to see a lightning bolt on myself every day of my life, to remind me that there is no such thing as odds when it comes to an individual's own emotional and physical battle with a disease. That there were other people out there that believed in never surrendering to something that can leave you feeling as if it is winning everyday because surrendering would mean that what I want to live for isn't worth fighting for. My girls will never see the white flag in my eyes.
            So, now you have some background...back to the mountain house. Over the course of our stay in the house it was SLOWLY revealed to me that 14 adults ended up getting the bolt tattoo on some place of their body. Many went with the wrist. Some went with the bicep. Others went with the side of their ribs. It was such a unifying experience. An overwhelming display of support that I never expected, nor would I ever ask someone to do. Please do not think that this is my way of encouraging anyone to run out and join the club. This is just me telling a story of how people I love came together and found a way to show (in a permanent way) their support for me and my family. Whether I'm here to see it wrinkled and faded when they are 80 years old or I'm not but my wife and daughter are,  it's something that will always reflect the unifying experience that comes from people wanting to show yet another way that they have love for me and my family. That they, along with me and my family will never surrender and will ride the lightning together, forever.

"I'll ride the wave where it takes me" -Eddie Vedder

With love,

Brian

          

There is a river i've found...

          So, a bit of continuation from yesterday's blog...
           I have to admit that I have struggled (and would guess many of you have) with control in the relationships we have had. Whether we are going all the way back to learning to share a toy in kindergarten to adult relationships where we just appreciate the person you are with without trying to force your opinions on them. It's a growing process. I think most parents want to protect their child from everything out there. I'm told that eventually you have to learn to let go because you have to let them figure some things out themselves, and that you cannot be there for every single situation. Part of the struggle for me is knowing that my time, most likely, is going to be cut shorter than most parents. So I have to accept the fact that I am going to have to let go all at once and trust that what is left in place will suffice. I've wrestled with this since the better part of the last year. What will Harper's environment be like? Is the neighborhood safe enough for my girls? Will Harper's life feel empty as a result of being raised by a single parent? What I can control out of this is something that you can't walk down to the bank or store and make a transaction to fix. It's not something that I could go out and set in place in a day, week, or month. The peace that comes to me is the realization that over the 40 years I have lived, my life has been filled with some pretty amazing people. I don't know that friends is a fair label. The people in my life have been present because: 1. I aspire to be like them. 2. They are either hoping to get something out of my presence in their lives, or they think this education thing really is a front for me creating meth out of an RV and want in on the action. Well, I am an educator. I am bald, with facial hair. I have cancer. I love breaking bad, but I have no experience in chemistry. So, my point is that I've always believed that the people in my life are as good as I believed they are, but these recent events only further support my faith in them. 
         If I knew the future AND If I could go back in time, I don't think I could have surrounded myself with a better group of people to be in my daughters life, should something happen to me. That's kind of the  hope, right? That the people you choose to be around have like character to yourself and that will reflect who you are to your daughter. If she can't know me intimately by my physical presence being with her, then she can know me by the people I choose to be like, myself. Each person has some sort of trait that I want to display in myself, but I'm sure I don't do so on the same plane that they do. It's my hope that through these people, that she sees who I wanted to be like myself and that will in some way influence her own development. I often wonder if some people who may be in shoes like mine and do not have the peace of knowing that their lifetime investments in others is paying off in the best way it can.... Supporting the growth of the love of your life. In a world where I've fought the need to control what's close to me for most of my life, it's a comfort I cannot buy or acquire at 40 to know that the people I love the most will protect the hearts and shape the  lives of my wife and daughter by reflecting the life/love that we have shared over the years.

"I had to be what never was"- Dave Grohl

With love,

Brian