It was a year ago this week that I pumped the last few ounces of this crap into my veins. I wondered how I would feel a year later. Would I regret my decision? Would it make we wonder how tough I was? What did it say about me that I quit just past ¼ of the way through my supposed year long treatment regimen? Well a year later I really don’t have any answers but I don’t seem to be asking the questions near as often. I guess that is progress. A year later I physically feel so much better. But mentally I hadn’t really realized how far I had slipped. I still have short term memory loss and at times will see people I recognize and know that I know but their names just don’t come to me . I recently had to get a copy of my chart from my oncologist (more on this later) and in reading his notes I can read that he noticed it. He was mentioning it way before I had called it quits. I am sure my friends and family saw it but there was nothing they could do. As I posted in my original post the week I quit treatments (http://onemansjourneywithmelanoma.blogspot.com/2011/05/no-mas.html) I do not regret starting interferon, nor do I regret quitting. I just couldn’t do any more. I felt like I had fallen off a cliff and no matter what I couldn’t seem to get back above ground. In hindsight I realize the problem is I let myself get bad enough I fell off the cliff to begin with. I don’t see any reason to look back when the future is scary enough for melanoma patients. I am sure if some day my scans no longer show me to be NED I will wonder what if I had taken one more month, one more week, maybe just one more treatment…….. Where would it end? We will worry about that day if and when it comes.
While waiting to testify before the house subcommittee on health care issues in Missouri I met two very nice doctors. One is the dean of the school of dermatology at MU and the other was one of her former students. When I told them both about my case and that I had taken just under 5 months of interferon treatments they both suggest I go to see an oncologist that was affiliated with MU who was doing treatments and trials the same as MD Anderson and was achieving great results. I flip flopped back and forth about going to see him for a month and finally at the encouragement of my older sister made an appointment to go and see him. To make a long story short he didn’t recommend I do anything different than I was doing but was kind enough to take almost an hour to talk to me which I really appreciated. A very nice man and it gives me something to consider should the beast return. I absolutely didn’t consider it a waste of time. I thought to myself on the drive back home that I was just attention seeking. I hadn’t seen my own oncologist for 90 days and was having oncologist withdraw or something. Oh, so that is why I asked my current oncologist for a copy of my own chart. Curious does anybody else keep a copy of their own chart? I had about a 60% copy and wanted the complete story. It actually was enlightening and pointed out another flaw in my approach to this battle. Once the girlfriend and I were no more I went to all my Dr appointments alone and to be honest I don’t remember most of them. Reading his notes was like reading about somebody I didn’t know. I really like Dr. D and am always afraid he is going to retire one of these days. I was an amazing stroke of luck that I ended up sitting in his office in September 2010. As a side note the Missouri House did recommend that they pass HB1475 when it comes to a vote before the full house so restrictions on teens being able to tan in Missouri are a step closer This bill basically made it this far last year so maybe this is the year it makes it through the senate and we get to see if Governor Nixon will sign it into law or not.
One of the greatest things to come out of this experience is the people I have met along the way. I have met so many brave and courageous people who are on some version of the same journey as me. I don’t always post on Facebook or on your blogs but I follow so many. You inspire me and give me strength when I need it. Days like today are a little rougher than others as I see another warrior has been called home. Another family says goodbye to their daughter, wife, mother, and friend. We fight on my friends and live for the moment. I still plan to live another 40+ years but none of us are guaranteed anything. This is also the one year anniversary of me publishing my blog for the first time. I can still remember the sick feeling I had in my stomach when I hit publish the first time. It is funny the things I found scary. I am spending two weeks in California for work so this weekend finds me in Victorville, CA. Vegas is about 2 ½ hours one way, San Diego is 2 hours the other way. Not sure what I am going to do yet. I may even just stay here. Lots of mountains and I am sure I can find a place to go for a good hike.
Paul
