Death and all of his friends

           So, it's been a while since my last blog entry. I have felt amazing. Physically and emotionally. Of course the weeks leading up to a scan and scan results are a different story.

           So since our last scans I have had brain radiation and we began the 4 sessions of Yervoy- another kind of immunotherapy. 4 sessions and done. That's it. Very little side effects except I can outrun any Redskins or Jaguar wr if I feel the urge to go #2 coming on. Very short window of time. Moving on...Radiation left my face swollen and seemingly sunburnt (ironic). Head peeled...the whole 9. They said a common side effect of whole brain radiation is short term memory loss. Memory has never been a strength of mine, so now I have another card I can flash when I forget Karen's birthday. Around the time the new school year started most of the side effects had gone their way and left me feeling pretty close to normal again. My energy level is incredible. I can play with Harper and read to Karen at night when it's their bedtime. I can contribute around the house when it comes to the standard things that make a household run. Funny thing is that I have all this energy, but I don't eat anything. Fresh out of the shower I weigh 210. Most I've ever weighed is 310. So needless to say, I look amazing. You're welcome.

       Let's get morbid. I told Karen a long time ago...that I wanted the song "Death and all of his friends" by Coldplay played at my funeral. Then a while after I was diagnosed I changed my mind...afraid that if I started that kind of unnecessary planning then I must be encouraging the cancer to do it's job soon and proper. So that was tossed out. Anytime we are nearing scans, all the fears and thoughts that accompany hearing the word cancer coming rushing back into your brain. I mean, it's not like it ever, for one minute leaves my thoughts, but the immediacy and realness of our current situation rushes back into our lives.
   
         I had a random playlist running at work one day during the last 3 weeks. I'm sitting at my desk working with my headphones on and Death and all of his friends came on. I paused from what I was working on and listened to the song. It's my favorite Coldplay song, so a pause for a listen is justified, but this time I was trying to remember why I had wanted it played on my funeral. I remembered it was just the perfect combination of lyrics and music and how it applied the life Karen and I were living. The beginning of the song is very dream like. Starting out with just a piano, vocals, and the lyrics, "All winter we got carried away, over on the rooftops, let's get married." It just seemed to capture how I remember that time in our lives. Then the lyrics begin talking about patience and trying...a common theme in our lives since cancer dropped by. Then the song takes a different direction with the drums escorting in a more upbeat tempo and melody. I suppose back then I envisioned at the funeral pictures of our lives together flashing at this point with that part of the song as the backdrop. The lyrics then are, "No I don't want to battle from beginning to end, I don't want a cycle of recycled revenge. I don't want to follow Death and all of his friends." Now for me, the first bit about the battle was true. I didn't and don't want my life to just be about a battle with cancer. I want it to be life and fighting cancer is like brushing my teeth. Rarely happens, but is necessary to please others. The second part about recycled revenge- I applied this to how I never want to be bitter about what is happening to me...us. The final part " I don't want to follow Death and all of his friends"...well, obviously that's me not wanting to die, but also not wanting to live expecting too.

           Well, with our recent bit of good news, I think about the slide show of pictures that are to plug into that slide show. But now with pictures that have yet to be taken. A LOT of pictures. Anyway, hope that wasn't too morbid. The thought of death lingering leaves you thinking of things you want to control. I did want to control that...briefly. Now I just want to focus on life and making moments that are worthy of a slide show that reflects a life well lived with those I love.

Here is a live performance of the song if you would like to take a look.

         So the Newton family is pretty excited for: Fall, random trips, Halloween, Thanksgiving, football (even though the Skins and Jags haven't made it very enjoyable to watch), Christmas, New Years, time with friends and family, Harper's 3rd birthday, and giving this center of our universe back rubs before sending her off to sleep to charge her batteries so she can drain them on another day with her mom and dad.

          

Love all of you and looking forward to spending loads of worry free time with you. No wait I don't love Victor Simon. 

Thank you for ALL the support, love, and prayers.

Brian

HTTR

           
               

           Well, as many of you know, we had our last day of whole brain radiation. For me, this kind of therapy was similar to chemo in that you feel the impact of it before you are out of the building. But the fatigue was honestly the worst part. You honestly feel like you've just woken up from a nap all day long. There were a few other side effects, but nothing serious enough to mention. So fifteen sessions. It felt like an eternity, but as my pastor (Larry "OML" Yarborough) points out that many of us point out that it is bad as it's gonna get. When through all this i've learned (as he followed up with) that basically it isn't supposed to be like this, and that big picture only gets better. Big picture is all I try to focus on. Focusing on the big makes the little a little easier to tolerate. And of course, as I'm walking out a woman told Karen that the man going into the room as I left was scheduled for 45 days straight...going in for day 5. Always, no matter the situation, someone has it worse than you. Keeping that perspective has helped me find a place of peace, no matter the news. Which strange enough brings me to a confusing blog.
                So the other day I was listening to the radio and they were talking about the first game of the NFL season was within weeks. It was a preseason game, but it was football none the less. It immediately took me back to early January. I was laying in bed on the floor of the neurounit at UF Health downtown. Karen and I were in the room. I was laying on the bed. The neurosurgeon who was sitting across from me and said to quit my job and enjoy the weeks or couple of months I had left. The cancer in the brain had spread, and rapidly. "With a vengeance" to be exact." I was silent as they left, then Karen and I both had our moment and I was moved to another room where Greg Rowe was waiting for me. On Greg, came out about all the life stories, hopes, dreams I have experienced or wanted to were on the tip of my tongue and needed to be said i immediately---now that my perception of time was thrown out and needed to be learned again and quick. So first, of course, I go over Harper and Karen with him. Then, while I had a pause between talking and crying. There was a little quiet. I looked up and the tv was on and it was the end of the NFL football season ESPN was showing highlights of the Redskins game. If you know me, you know my roots as a fan of the Redskins runs pretty far into the earth. It hit me that with the news that I had just received that I would never see another Redskin game. I told Greg that and felt stupid as it came off my tongue. But it felt heavy at the moment. It was a part of the everyday that has been a part of my life as long as my dad could communicate with me.

 It recently amazed me when I heard the advertisement announcing the start of the new season. I didn't hear the details of the announcement, all I heard was almost 8 months ago I was supposed to not exist here anymore. Cease to be on this planet. Losing the loves/lives in my life. Not seeing the Skins punish me with another drama filled season. James Newton died the year the last time the Redskins won the Super Bowl. If I can live to see them win a superbowl, then I think I have a long ways to go on Earth. I'll take 50 superbowl appearances but not a win until the year i'm out of here. The victory would be a great way to cap of a wonderful life with Cancer treatment being an afterthought but everything else cancer brought being one of the best things I have ever had happen to me. It's strengthened my love for others with a perspective on life that I only want to share with others. I need at least 50 years to communicate that love and perspective to others. ; )

"Many times I've been alone and many times I've cried any way you'll never know the many ways I've tried"- Beatles  


With love,

Brian




                   

I'll Swallow Poison, Until I Grow Immune

          I've always loved that Pearl Jam lyric in the subject. Never did I think it would be so applicable to me as it is today. Especially since I have grown immune to this particular batch of chemo.
          I'll spend the second paragraph catching up those who are new to this blog and thought I only had a blog focusing on crocheting covers for school books that resemble the driftwood that Rose hoarded from Jack as she promised to never let go, but then breaks his frozen solid fingers off to let him sink to the bottom of the north atlantic.          
           Back in November of '15, we were fresh into the first form of immunotherapy that I would be treated with. We were pushed by some girl to get my brain scanned because at the time we were not aware that melanoma gets it's passport stamped in different places in your body than sarcoma does. Sure enough, the ct scan revealed we had a "tiny" mass in my brain. The plan was for us to radiate the mass as it's small size fell into the range for a mass in the brain to be radiated, but before they could proceed down that road they needed to do an MRI on the brain to get the exact parameters of the tumor. Sure enough, the morning we go in to review the results of the scan, they tell us that the mass had grown rapidly and that radiation wasn't an option anymore. Surgery was the only option on the table. The rest of that chapter was dramatically poured out by Karen and me in our blogs, as well as pictures/comments on Facebook.
            Fast forward to last week, Wednesday morning. We had an appointment early in the morning with our oncologist. He was to review the results of the ct scan I had the previous week, with us. News wasn't good up front. The cancer had spread, but only to one part-the brain. I mean, we already had stuff going on in the brain but this was new. The other masses in the body weren't responding in the shrinking sense to the chemo pills anymore, and some were even growing. The one in the brain was tiny- 4mm. But if you see paragraph two (just one above this one, Vic) You will recall that we've heard tiny before, only to be thrown upside down later. So the immediate plan was to stop my chemo pills and move on to immunotherapy. Not the kind I was on before (Obdivo), but Yervoy. I got my first infusion this past Friday. The only side effects are you sometimes feel you have eaten 5 bowls of Raisin Bran substituting the milk for Sunny D...and I thought after cancer in the thigh my running days were over. So, after my first infusion of Yervoy I went to another part of the hospital to get an MRI on the brain. Fast forward to Monday morning of this week. Karen and I wake up and are getting ready for our day. Mine, to change the world of Deaf education. Karen's to make sure that there isn't any drama in the lives of countless housewives in Orange County, Beverly Hills, New York, and other areas. Bless her heart. We are going about our business when we get a phone call asking us to come in so we can review the results of the MRI. We get nervous. The feelings of that rug about to be yanked out from under us like before came flooding back. We go in. The MRI looks great. One of the craziest she says she has seen, but great. We decided on whole brain radiation. Meaning, the radiation will kill all the microscopic cancer in the brain that will not show up on a scan. I'm for it. You only get one shot with whole brain radiation, so I want to get on with it. Permanent side effects: Short term memory loss, foggy memory episodes, a struggle to do computations in my head without writing things down, and a tendency to forget to wash my hands after a violent #2. We rescan in 15 weeks.
               I'm in a good mood...better than as of late. There isn't definitive proof the diet is working, or that the chemo or obdivo were responsible for the early success with the tumors, but I'm sticking with the diet because it doesn't make sense to stop something that is amazing for your overall health if you can get to that mental place to do it. I'm all on board for immunotherapy. I have a massive crush on Sean Parker. Google what he's doing with immunotherapy and you might just crush a little on him too. As I've said in a previous posting, "with cancer, there is no good news, just bad news postponed". Well, I'm all in with immunotherapy postponing that bad news indefinitely. I'm not optimistic that Yervoy will cure me, but I'm optimistic that is will postpone bad news until something else can.
               So, the night that we found out that my therapy was going to be changing from chemo back over to immunotherapy, specifically, Yervoy, we went over to the Inksmith and Rogers...again. I decided I would really like to get a tattoo of the symbol for Memorial Sloan Kettering. The first and only hospital that said they would take on my case when no one in Florida would operate on me. They removed the first mass we found under my arm. Gave me my functionality back. They are also one of the leading hospitals in the country for developing immunotherapy treatments. They played a huge role in the development of Yervoy. So I thought to myself, "Sloan is putting stuff under my skin. I might as well have them ON my skin."

             The symbol was developed in the 1800's I think. The three bars running through the arrow perpendicularly each have their own meaning: Training, Teaching, and Research. The arrow represents the upward progress in conquering cancer. So now, Sloan, all of you, and I are in this together in my heart and skin. Well, I guess you guys can just stay in the heart. 

"I'll Swallow Poison, Until I Grow Immune" -Eddie Vedder

With Love,

Brian

Easy for you to say...

            I remember the day Harper was born pretty vividly. More specifically, I remember all the feelings that raced through me once Karen was admitted to the hospital. Karen was much stronger than I thought she would be. Handled the pain and uncertainty better than I recall seeing anyone on one of those shows on tv I had seen before. I stood next to the midwife and across from Suzy and while my eyes processed everything that was happening, I was still processing what it all meant...at a pretty rapid rate. Before I knew it, Harper was out of her 9 month timeshare, wrapped in a blanket, and I'm holding her.

              I am not a lot of things, but I am honest. The bond wasn't immediate for me as I had anticipated it being. But what was immediate was that I wanted to protect her from everything I knew to be wrong with the world out there. Including myself. All of the faults in me both instilled in my by nurture and nature. As a child, I made myself a number of promises that I would keep for my future children. Most of them came from my experiences with my own father. Most members of my family will not care for me posting this publicly, in part because they don't know it to be truth themselves, and also because it's maybe supposed to be kept in the family nest...but at this point in my life I'm not overly concerned about secrets.              
                  My father was a man who struggled with the cards he had been dealt. To help him with that struggle he used the bottle to postpone working through many of those issues. He was a mean drunk when he was drunk, and sadly to say, I don't remember a great deal of time when I was able to distinguish between sober James and buzzed/drunk James. He was often verbally and very rarely physically abusive. I learned a great deal early on from those experiences. From the time I was in the 5th grade I had decided I wanted nothing to do with him. My relationship with him left me with a very warped and ever-changing perspective on alcohol. Going from never drinking for long stretches to maybe drinking too much at times. No matter which direction I stumbled towards, I never wavered from a promise I made to my future (Harper). She would never not know me. Alcohol would never mask who I am. She will never see me drunk. The unpredictability that comes with not recognizing the stability that so many kids need from their parents at an early age is a frightening thing. At least it was for me. The thing that is crazy is that if my father were alive today, I believe he would be better at being a grandparent than any of the 3 currently alive. In no way is that a knock on those around today, but I am my father's son. I know that without a doubt that his genes run deep in me. So, of course, if he were alive, and he had fixed certain things he struggled with, then of course...if we are exactly alike, then he would be amazing with Harper. I'm not saying I'm amazing with her, I'm just saying he would love her beyond the love he has for his own life.

            As I said, many people who read this and knew my father may not care for my shared perspectives. I mentioned in previous blogs that my relationship with my father is still alive through things I continue to learn about him to this day. If i'm going to be honest about the present, I'm going to be honest about the past. So, as I said, I was acutely aware of the protective instincts I had for Harper on the day she was born. Most was focused on the external environment, but as I just mentioned some was internal from things I had picked up along the way. I wasn't always the best communicator growing up in a home I shared with a father I wanted nothing to do with. I told Karen early on in our relationship that if I begin yelling or doing something that is perceived as yelling, then I would like to be able to walk away for a while. Not always the easiest thing to do in the middle of a heated topic. But I never want her or Harper to be the recipients of that picked up/learned habit.
               I love my father. I don't fully understand him, and never will. I know he most likely had good intentions for me, for most of my life, but will never know for sure. As I said, my relationship with him is still evolving with things I hear from others about his own youth and what shaped him. It helps me get an outsiders look into the things that may have shaped him. This brings me to cancer. One thing I have learned through all of this is that not one person knows what you are going through. I don't mean this as a sympathy call. I don't mean to serve any other purpose than to explain something that truly has been a massive revelation to me as of late. If I had a twin, grew up as I did, got the same cancer I have, had a baby in the same time frame I did, HE would have no clue what it is like. I honestly cannot communicate how it has blown me away to really understand this. You look around and think you can relate to people on topics like this, but in the end, there is a wall you run into. Unless that person has taken every step you have in your shoes, it's impossible.
              If you have known me since my mid 20's you probably would agree that I have been what some might call a "Sun Trump" (getting rid of using the term Nazi and using the closest term I can use for today's generation to understand). I would never go to the beach or pool. It's beyond ironic that I came down with stage 4 melanoma, but I did. It's in the genes or it's in the amount of time I spent outdoors as a kid living in Florida. Either way, I got it....and guess what? Because of Harper's genetic relationship to me, she has an increased chance of getting it. It's not a large increase in chance, but it's there, and I got it without the increase. And that makes this overly protective dad want to burst from anger that is rooted in the responsibility  that I gave her that increase. So, it's been a struggle for me to want to have her in the sun as much as other kids in the state of Florida. There is no right or wrong approach to finding a balance for her, because everyone is going to have their approach to handling it and understanding it. I just have to lean on the fact that not one person will understand the life I have lived that has made me who I am and the protection I was to wrap around my daughter. And they shouldn't understand my perspective anymore than I should understand their perspective. It's just difficult to have a potentially fatal disease, and know that because of the genes that I have passed onto her, that she has an increased chance of getting it. Leaning on the idea that no one can possibly understand each others perspective completely really removes the burden off my shoulders of trying to convince people of who is right or wrong. There really is a peace about learning that each of us having a "journey" that is specifically designed for us that maybe is so unique and special that you cannot have advice or counsel from anyone because you are making your own trail.

We have scans tomorrow morning. Results on the 15th. Prayers are more than welcome.


Easy for you to say, your heart has never been broken....not yet, not yet - Dave Grohl

With love,

Brian

Our Endless Numbered Days

                I've officially been "ketogenic" for almost 6 weeks. I can still say it has not been as much of a challenge giving up the food as it has been just planning meals ahead and reading nutrition labels and the words that are in small print around them. In this month I've lost 24 lbs. It's nice not feeling the struggle between my stomach and my pants all day, but eventually the weight loss isn't going to be fun. I'm going to be very thin. I'm allowed to eat up to 2,400 calories a day on the diet; but that is a difficult task when you can't eat carbs, sugar, and you have to keep your proteins low as well.
                With that all being said, I still feel great, both physically and mentally. I look at the stinker in the picture above and still feel that my only purpose on this Earth is to give her everything I have. Whatever I have learned, whatever I have accumulated in this life, and of course model love to her mother as I want her to expect when she is loved one day- all have to be communicated to her from me. Whether I am in a great mood or am "taking a deeper look at my circumstances", this usually is what drives my thinking. The mood, as I mentioned before has been consistently positive and optimistic as of late.
                A few weeks back there were a couple of articles that I read about immunotherapy. One article was focused on the charitable/investigative work of Sean Parker (co-founder of Napster and I think the president of Facebook). So the guy is a billionaire. He has started the Sean Parker Institute, which sole focus is Immunotherapy. Apparently, he is fascinated by it. Weird, because so am I, dude. He's invested hundreds of millions of dollars into investigating this form of treatment. He invited the top 6 centers for research on Immuno to come and be a part of a collaborative effort to better understand the treatment. The key to unlocking the vault with the hundreds of millions of dollars? Share what each of them already know. Apparently, the medical profession isn't always keen on keeping each other appraised of the findings they come across. So Sean is attempting to bridge the gap and see how much quicker new therapies can be developed, tested, and approved. All because Immunotherapy fascinated him. I don't know anymore about him...but if this were all I were to ever learn about him, this is what I desire to be. He knows his platform. He's taking what everyone wants (large sums of money) and using it to find a cure for something no one wants (kooties/cancer). I hope that one day I am able to have something within me so unique that I can use to help others in the selfless manner he is. Not because it will get me any sort of fame or notoriety, but because I would like to think that it would be helping one person (or possibly millions with with a daughter like the one in the picture above who want nothing cash can buy, but only to see her grow by my side.
             The second article was about a large convention that took place where loads of scientists, oncologists, doctors, and clowns gathered (clowns were in the wrong building...embarrassing for a clown). They gathered to discuss the latest and greatest in cancer research via immunotherapy. Oncologists were quoted saying, "We haven't seen this sort of breakthrough in cancer research in decades!" and "Immunotherapy is doubling the survival rate of many of our cancer patients".
             Both of these articles put me on a high and floaty cloud that keeps me well above reality. I'm able to focus on living my everyday life without the distraction of kooties. However, this is cancer, and it's not incredibly difficult to be brought back down to the ground if you allow it. Even when things seem to be at their best, the best they've been in quite some time, the mental shift that takes you quickly back to the heavier places you try to avoid is always present. Back to the old familiar questions and uncertainties. My oncologist mentioned today that if we were to have started treating me 5 years ago that I wouldn't be sitting with him a year and a half into treatment. Humbling.
             I'm still continuing to do my part with diet (and soon exercise), while still hoping to read some new news about some immunotherapy breakthrough. I will continue to try to stay above the confusion that is kooties and just maintain who I am for my family.

                       I think I can honestly say that I've never been proud of much of anything i've done with my life. By the perspective of an average Joe, I suppose one could say I've done some things in my life that I can be proud of. People often tell me how well I handle this cancer stuff. Now, I honestly can say that I don't know how I am still here in the good condition that I am in. So, to those folks, I say thank you and act like I know what they are talking about. I appreciate the support, but I seriously doubt anyone would handle what I am experiencing any differently. Going back to my childhood all the way to my adult years, all the things I really wanted to be good at: Playing football, basketball, tag, being good at taking showers (especially after days when i've wiped), being a good skateboarder, and a good student, then a good teacher. All of these things I enjoyed pursuing, but I never felt I was the person I was supposed to be through those pursuits. At some point during all of them I could pinpoint what it was specifically that kept me from being exactly what I wanted to be in that area. That specific thing that kept me from feeling proud of what I had already accomplished.
              When Harper was born, I was still as uncertain of myself as I was all the years I failed at being what I wanted to be proud of myself for. As Harper grew, I began to love her more than I could ever have loved myself through all of my failures or successes. I was/am proud of her for all that she has done and has yet to do. The trouble is, in my shoes, I don't know when what I am watching her do is going to be the last time that happens. But it is a relief to know that I have one thing in my life that I am proud of....and the weird thing is, is that unlike things I worked to be proud of when I was younger, I don't have to work at her being a better her...and she's got nothing to prove. Nothing to do to earn that love and pride I feel for her. It will continue on beyond the length of my life and stay in her throughout hers. I wasn't born to be a football player for the Redskins. I wasn't born to teach. I wasn't born to do my current job. I was born to be a father. Harper's father. For the rest of her life.

With love,

Brian

Left the porch.

            Been a while since my last blog effort and a lot has changed I think, so here is another update. The last month is probably the best I have felt since starting any sort of treatment for cancer back in 2014. I feel great physically, which contributes quite a bit to me feeling better overall.
            About 3 weeks ago a friend of mine at work came up to me and discussed this kind of diet that he had been researching. He majored in chemistry in college and a good friend of his had gone through cancer and it prompted him to get back into his old roots and started digging around. To make a long story short, I have completely overhauled my diet. This diet has it's roots in what most would call a Ketogenic diet. Mine is fairly similar, but varies a bit because i'm using it to fight cancer. Most use it to lose weight or because they hate the taste of good food. The first day on the diet was a challenge, as you might expect. But I can honestly say that everyday since then I have felt amazing. It could be the diet, it could be the reduced amount of chemo I am on or a combination of the two. Who knows, but I feel great. Karen is so cute. She's been tempting me to come back to the darkside by putting pieces of oreo cookies in my toothbrush, putting cotton candy in my mouth while i'm sleeping, and shoving skittles in my mouth with her lips when we kiss goodnight. She's a real darlin.
           A group of us went to see Pearl Jam when they were in Jax last week. When Trey bought the tickets, we weren't sure I'd be here to see it. I have to say, our perspectives have shifted quite a bit since then. We are thinking longer term life than previously before. I must say it's odd when you take on that mental shift and you see people who you haven't really communicated that to. You sit there and you are like, "why is this person looking like they are about to cry or something?" Feelings are so appreciated and loved by me when others express them...please don't take what I am saying the wrong way. I'm just saying, it's almost like, "You didn't read the newspaper in my head? I'm feeling great about everything! So you should be too!". That's all. Pearl Jam was amazing. I don't think anyone expects anything less from them. I was at the show with some of my best friends who I listened to the same songs together with when we were 16 or 17 and Karen was yet to be born. Eddie was much younger as well.  That was pretty amazing.  I'll just say this...Eddie Vedder at 51 is in better shape than I was when I heard his music at 16 or 17. Man is amazing. So passionate. I couldn't get over his passion for what he does. There is so much meaning in his music. So much he is trying to communicate through his position. It really made me think about my own passion in life.
            I love my job, I love my Redskins, and I love Indian food...but none of them would I consider to be my passion. If you have read any of my blogs, it is probably pretty obvious to you what my passion is. My wife, Karen, and my stinky baby, Harper. I can see Eddie's intensity or passion in his music when I see his jugular when singing certain songs. Karen was on the lookout for it during the show. Some people/books have told me that finding your "strong reasons for living" can play a part in your recovery from things. Now, don't get me wrong, I love life. I have a great life with great people in it. But the fear that comes into my life with cancer doesn't really manifest itself until I think about my girls. Nothing gets my jugular like seeing them together sharing time, making memories, and giving me purpose.
             I've always said that I would do whatever it takes to live on and be a part of the lives of my girls. Up until recently, that's just going along with what the doctors have told me to do. The diet is a decision that I came to on my own. Giving up soda, sugar (same thing), and almost every food I love for the rest of my life. Every time I've tried to change up my diet it's always been comforting to know that I can always have a cheat day or something along those lines. Now, I never think about that sort of thing. Cheating on this diet, in my mind, takes away the first opportunity I have to control anything in this fight against cancer. And in MY mind it makes me feel as if I've fallen short on the first try at doing the first of the anything that I said I would do to be a part of their lives as long as I can. Let's see....eating food that makes you feel horrible anyway or watching this baby grow up to look as pretty as her momma one day.

As Eddie would say, "And the cross I'm bearing home ain't indicative of my place." My interpretation for my life? This sacrifice of food or anything for that matter is way easier than it seems when you have your "strong reason" to live. She's pretty strong alright. 

With love,

Brian

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

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