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