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