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