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