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

My Girls

     This blog entry touches on more who I have been over the last year and a half than any other. Whether or not I've been obvious about it or not, I don't know.

            As I mentioned in a previous blog, I've had active cancer in my body since Harper was born. Now, I may not have been aware of it until some time after her birth, but it's been present. Experiencing both cancer and being a father simultaneously has made me more aware of what direction my life has been and is going and how effective I have been at following that path. Karen and I had no idea how much Harper would have to rely on her for everything and how much I would have to rely on Karen for to be a single mother, but also to be everything else for the family.

           In retrospect, I've always loved life. The happiness, the pain, and the people who brought both to my life. Not to sound deep like I should have a "coexist" sticker on my car, but I've appreciated everyone I've grown with or through. I may not like all of them, but I have appreciated them. It took me reaching a certain age to learn to appreciate the bad as much as the good that comes my way. Having Harper with Karen was something I never could have prepared for. Watching her lay in her swaddle, I just felt overwhelmed by her vulnerability. I would do anything to preserve that. In the process I realized how vulnerable it left me. I've always been afraid of being vulnerable. I think most are, but with Harper, I've never been so proud to be vulnerable in her. Putting all that she needs in front of anything I need, am, or pretend to be. She is the great equalizer. When Karen and I sing her to sleep, it's the hardest time of the day for me as it forces me to see her vulnerability and I am reminded that I have to look at her in that vulnerable state, aware that cancer may keep me from protecting that for as long as I want to. Adam Duritz wrote a lyric about being a father to a daughter that really captures the indescribable feeling of the unexpected love between a parent and a child. He wrote, "every time she sneezes I believe it's love and oh lord, I'm not ready for this sort of thing". He wasn't and I'm not. So much love that you wonder if a lifetime is enough time to reflect what you feel towards your child in a way that they will understand and remember. One of the most difficult things I've had to come to terms with is that Harper, if cancer wins in the early rounds, will not remember me through her own memories. She will have to rely on pictures, videos, and stories of her father from those i love and who knew me best. Selfishly I want her to remember me because I want her to know she was/is loved by me more than she'll ever be loved by anyone else. True or not I want her to know it. Unselfishly, I just want her to know she was loved so that she will grow up to be a well balanced human being. Not ever feeling different and that somehow I am reflected in some way in her interactions with others.     
              It's been a difficult balance trying to prepare for the worst while praying/hoping for the best...and not reflecting the fear I have of not making her life all I want it to be when I'm with her. Just watching her in all her innocence and life yet to be lived makes thinking about tomorrow with an emotionless face near impossible. She gives ample courage to any aspect involving our fight with cancer. She is our reason for "fighting" but also why the fight is so scary when I feel I have so little control over the outcome.
So we focus on today and tomorrow. Anything thinking past that is done with hope and is only out of necessity.

"And every word is nonsense but I understand and and
oh lord. I m not ready for this sort of thing." Adam Duritz

With love,

Brian

I know what chemo is...now.

        Today we had bloodwork. It came back fine. The chemo pills that I am on do not impact my counts, which is great. I do, like with other chemos have to have an echo-cardiogram every so often to make sure it isn't damaging my heart more than people missing Jay Leno's comedy on Late Night.
         So when we  were first diagnosed with cancer, as many of you know, we were told that the cancer was a sarcoma. Which I had never heard of before. We were thinking it was isolated under my right arm, manifesting itself as a large mass. Very large and neglected...and again as many of you know the day we found out it was cancer, we found out it was in more than one place. It was on my adrenal glands. So about a month or so later we began an aggressive approach of treatment with chemo. Going into this, of course I was frightened of cancer and the mystery it brings to each it infests...but I was different. Not because I thought I was going to beat it or die from it, but because one of my best friends had hodgkins when we were teenagers. We hung out a lot during his first bout with it. Watching him lay around, exhausted. Watching him get sick, often. Watching him lose his hair and his weight and his current way of life as he knew it. It totally threw his life off track. Witnessing all this and feeling very close to him left me with the arrogance that I had experienced cancer intimately enough to feel prepared for what to expect.
          I couldn't have been more wrong about what was to come. He, just in his first bout with the disease had it worse, I believe, than I had it for the first year of mine. The medicine they have to counter much of the nausea and many of the other side effects that comes along with the chemo did not exist 20 some years ago. I think what was most revealing during the chemo, for me was the constant. The constant, feeling of weakness, being out of breath, or mouth sores. The thing is, as close as I thought I was with my friend, I was, I think like most. When someone says, "Man, this hurts..." I thought about it for a minute, then I continued on with my normal thought processes. I spent a lot of time going back over the things he went through and processing what an ordeal he had to deal with. When you have it, it's not a thought. It's a continuation of the pain or whatever is wrong. The thoughts are never really cease. I guess for me, it was like having flu-like symptoms for 2 weeks of the month for almost a year. He, like me, had/has an amazing village of support. I can say he's been cancer free (for the most part) for over a decade. As I mentioned yesterday, I don't know that I will ever be 100% again. Even in all the best case scenarios. I look at him, and he wouldn't let you know it, but I think he probably feels the same about his physical condition. But what I've learned during this process is not just that I didn't know cancer, the side effects (both emotionally and physically) but  I was also being arrogant in assuming I did. I learned from him, by his actions, not advice or words, that cancer, as much as you may want people to understand what you are going through, is a private affair, that will be different for each and every individual going through it. He handled his pain with strength that I'm not sure I would have if I had not witnessed it in him prior to my diagnosis. We both were avid basketball players in our late teens. I dominated him (and his brothers) on the court before cancer. I think my diagnosis is just leveling the playing field for a rematch of the cancer battle-tested bodies we are both in now. I am pretty sure I'll win...again.
             I guess what I am saying is, don't feel sorry for anyone with cancer. Just respect what you don't know. I'll be right there with you with my respect for the uncertainty that anyone I meet is experiencing while fighting their individual battle.

"One of these days their bombs will drop and silence everything" -Dave Grohl...again

With love,

Brian

I'll talk here, so I don't have to.

           So, I've been meaning to keep a blog or some kind of journal along the way of this "journey" since diagnosis.  There have been more reasons to do so than not, but keeping a journal or blog of my thoughts on everything...well, it always left me with this image of someone reading this if cancer had won the battle- and I wasn't in a place where I wanted to move ahead with that. I've reached a place where I don't feel that way anymore, and I have felt stronger about posting this sort of thing over the past few, turbulent months. Part of this is therapeutic and part is to be informative. Karen and I were concerned that the recent posting on her blog may have left some feeling as if they have crossed some line or have said something offensive. I want to make sure that everyone understands that is not the case. We have just reached a place where maintaining optimism is of utmost importance for the normal function of our family. The best way for us to do so is to basically, well...not talk about it. We are in a holding pattern waiting for an upcoming scan in about 3 weeks or so. From there we will learn where we go from here. We do not want to be insensitive to the feelings of others, but at this time we really have to focus on the emotional well being of our family. This first entry will be going back to the beginning of all this.
           What has recently been a humbling thought is that I have not shared any time with Harper without having active cancer present in my body. Throughout this entire experience I have longed for the time when I can be the father I want to be to Harper....both physically and emotionally. Cancer has wrecked me in both areas. I have rarely had the energy to play with her on the level I want. There are times when I don't want to be alone with her because it is hard to contain my emotions and I don't want her to see that side of me so frequently. I don't want anyone to think that this is an occurrence that lingers over our house daily. For the most part I feel we are very happy and functioning very well with the assistance of our amazing village of support. I have come to accept that I may never function at the same physical level that I once did before all this mess. That doesn't bother me much as I have proven to most of you that I can or could dominate you in any sport you came to me with. Redirecting...As long as I can be everything Harper needs me to be, that's all I want.
            I'll continue to leap back in time with most postings, until I'm up to present day. You are likely to find that many of these postings are going to be laced or titled with lyrics of music that I find myself listening to lately during this "journey". I used to listen to music almost solely for creative lyrics and talented musicians. Now I find myself really listening to music/lyrics that connect directly with the circumstance we find ourselves in. The music isn't something that I would normally expect to find on my playlists, but it's been a great new chapter in my love for music. As Richard Ashcroft once said, "I need to hear some sounds that recognize the pain in me". Sounds dramatic. I'm not in pain, but optimistic music sure does help with whatever state of mind we find ourselves in.

"What if I say i'll never surrender?"-Dave Grohl

With love,

Brian