“I’m dying!?! Wait, is he sure its brain cancer? Is there anything else it could be? I need to see for myself. OK, time to get on WebMD. What symptoms should I have? What symptoms am I displaying? Heck is there even enough symptoms to be sure I have it and not something else?” These are all things that I need the answers to before I can count on the doctor telling me anything viably true. I’m not unfamiliar with the capabilities of doctors making misdiagnoses. “OK, let’s see, if I have fewer than 50% of the symptoms, it’s time to visit a second opinion. Heck, even if I only have 50%, I’m going anyway. Anymore than that; I’ve got to think.”
After spending the rest of the afternoon reading, understanding the causes, the treatments, and the likely side effects of treatment or no treatment, I decide on comfort care. I’ve never liked pain, at least not inflicted by outside forces. I have always had an amazing pain tolerance to my own bodies pain, just not to needles or treatments delivered by doctors unless I’m put under. The treatments the doctors are offering are going to just be too much for me. I mean a chance for survival is a nice thought. But even if I recovered from this, the pain I would go through would likely still leave me debilitated because of the RSD. Not to mention what it would put my children through, my loved ones. I just don’t feel that the chance of recovery from this outweighs what I’m likely going to have to relive daily if the cancer doesn’t get me.
I spend the next few hours thinking, “How am I going to tell Joe?” I get to thinking of how he has dealt with others deaths. At first he did so well, and the depths to which he feels the sorrow of their being gone. Heck, we have spent hours we discussing death, and what happens, and even my own death. I choose to go somewhere special, somewhere we some great times and give him a way to try and enjoy this. When I was pregnant I used to go to the park where his dad takes him now regularly in his home town, but unfortunately I can’t handle the drive anymore because of the pain. So I decide to go to the park here in Cedar Falls on Franklin. He loved the one just north of Main and First Streets, but the floods of 2008 really did it in. For Joe’s sake, I ask his dad to come down to help Joe through this with me, because with me gone, Joe is going to depend on him a lot more now.
I break it to Joe gently asking him if he remembers swinging with me and I tell him about what I did that fall before he was born. I talk about how we all are born and remind him that we all die. That is when I let him know that the doctors feel that I am going to be leaving him soon and that I want to spend extra time with him doing things he enjoys, like when I went swinging with him all those years go before he was even born. Dave’s trying to soak it in. He has known that with my RSD so much has happened to stop my ability from doing things, but it really hasn’t him that soon Joe will be in his care for the rest of his adolescent and teen life. My being able to be alive was the last thing he thought RSD would stop me from doing.
I express to Joe that as I get sicker, dependant on how his dad feels, any schooling he needs to do might be best done at his dads. I want to see him every waking hour I can but he knows that we all have to make our mark in history and life, and it’s much easier to do that if we are educated. But I make it very clear that if he wants to stay with me, he must promise me to do his homework and not try to take care of me all the time because there will be people to help with that.
I also take this time to explain that my body won’t always look like I do now. I will get tired more often, my skin’s color will most likely change, and I will still hurt, maybe even more so. But no matter what I am still myself inside, even if my body limits me.
Many times Joe and I have discussed that life only ends when we let it, and that as long as he loves me, then I will live forever. In the past, I have known some very vivacious elderly and some very dead youth. Our family and our friends keep us alive as long as they remember what we taught them and gave them throughout the time they spend with us. It would be now that I would finally become more honest about what I believe, because what do I have to worry about, someone killing me for being too outspoken?
Personally, what little faith I have has led me on a path to learn about belief and religions in general, to try and find answers according to whatever omnipotent being there might be and to live life that way. One of those things I have come to believe that the way we are, we act, we think is bound to the soul/spirit. And one of my greatest fears is of being trapped, my spirit bound to my body in which I could no longer do the one thing I live for. I desire to bring a genuine smile to someone’s face every day. Being in a place where I could not interact with others; that would be worse than any torture hell could devise.
After telling Joe, I break the news to my father and mother; they try handle it as best they can, but I can tell it hurts them deeply, especially my mother. I let them choose to break news to the rest my family, I let my brother and close friends know. It is these people whom have been there through the rough times, standing by me through the pain of the RSD, that I owe them the information in person. So I ask them to come over for dinner to discuss the philosophy of life for an opening break it to them. For those at a distance, I attempt to at least do it over the phone so I could comfort them in some small way.
Time moves along and I start to become weary of life, the pain would steepen, amplified by the RSD. At points I feel life is worth living and again consider suicide again or even assisted suicide. As I have so many times before, considered them both for present and future means, I remember that even if we don’t enjoy my life, we are going to die, so why rush fate. Even now I still believe everything has a reason it happens, even if it doesn’t make any sense now, those events have a place in history, unknown to future generations or not.
I try to keep a diary from the day of diagnosis till my death of the love, the joys, the pains, and the tears. I want my family to know the depths I love them and this book gives that to them. I have already “died” once, the second time around isn’t so scary.