I Am Cancer
I started out with cancer at the same time as the first time I fell in love as an adult, and it happened the same way too- slowly and then all at once. (#5) The first few days were the scariest I had ever experienced, and they gave way to hope and bargaining. Surely this cannot be real life, surely this will pass quickly, surely I am not the healthiest person but I have not been a terrible person and this was found early enough.....right? I will do what the doctors tell me to and everything will be ok...it has to be ok. It HAS to be. I am only 28.....I have three kids.....I just fell in love. It can't all be over this soon. I have to have a chance at real love I just have to.
None of those pleas mattered. Because cancer is a bully that just laughs at our pathetic little attempts to fight it. You don't always get what you want. In fact, there are some of us that will never see our dreams and hopes come to fruition. We will pass away with unrealization, unfulfillment and hurt filling our hearts because simply, love took too long to come into our lives or never came into it at all. Or maybe, like me, it came and it left but cancer stayed behind to remind me of that.
I am still not sure of what I believe in, although at this late stage I am clinging to anything that I can believe in. I desperately want to know that my soul will go somewhere else and that when I close my eyes and my last breath (the ones that I fight so hard to breathe in most days) is taken from me, all there will be left of me will not be this body that hated me so much for so long. So maybe I am finally considering the option that there is a God. But I am struggling with this for a lot of reasons, most of all that why would He (or she) want my children to have suffered the way they have for my pain, my problems?
I have read that the darkest days The Lord is supposed to put the best people into your life? I have spent the last 931 days learning that is not the truth, even though I feel I had already learned that lesson well in a lifetime of hardships before the past three years.
Everyone says to have faith but I think my faith has been misplaced. I think faith usually is. I put my faith into places that did not provide me with what I so fiercely needed.
"Left on the shore with the waves washing over me, unable to drown."
You eventually figure out that no one is there for you anymore. People try to be nice, they say they want to be there, but they really just want to feel better about themselves and for you to just stay away from them so that you don't remind them of what could happen to them. They say that they want to help you through your cancer- what they don't bother to realize is that there is no THROUGH.
I hate that people try to build you up. They tell you to be strong, to fight, that you will get through it. To live life, to just be this or that, to just be happy. They can tell you that you aren't cancer, but of course you are. Your cancer is you and you are it. What are cells and tumors? They are the inside of your own body, your own tissues. They tell you to take some medicine, as if that will make your pain go away and make them more comfortable in your presence. If only a pill could make pain go away. All it can do is distance you from the pain a little bit until it catches up to you again, too soon. The thought of food most days making you so nauseous but it is easier to eat when you are around people than to listen to them ask if you are hungry or ask why you are not hungry or push you to eat. But they don't know. They. Just. Don't. Know.
The truth is that illness repulses people, even people who say they love you. People don't want to be with someone who is sick. People want to be "happy" and when you challenge their idea of happiness, they can't figure out another way to find it. Not with you anyhow. The worst thing is when someone who can look at you and say they love you can hurt you so badly in the same breath, that person can tell you to just be happy. As if maybe it is just that easy, as if maybe "living life" is just that easy. But you slowly come to realize that you the way you are isn't enough and that maybe if you hadn't been sick. Maybe if you had gotten better sooner. Maybe if you didn't spend so much time sleeping. Maybe if the roles had been reversed. Maybe if you were just a different person to begin with. Maybe if they loved you without condition. Maybe maybe maybe. (#6)
There are two worlds of people. The normal people. And the sick people. I've been reading cancer book after cancer story after cancer book and I have to ask myself why now, why after 961 days am I so obsessed with cancer and dying? Is it because before even though I was fighting alone at least I had something else in my life to put my focus into, something else that at times made me fulfilled? Is it because even though I've been told about dying before, this time I feel it more than the words resonated? Can you feel something so much? My best friend did. She knew it and her husband was so attuned to her and her body that he felt it too when those last few days finally came. I know I am not alone in this, even if I am alone physically and emotionally. Most have all been here. We have all been told that our journey will end or when it will. It's just different this time.
I keep watching the kids, and how free and uninhibited they are. How freely they just smile and laugh, and I try to think but I can't remember a time recently when I smiled without trying to, when I felt safe, when I felt loved. I remember when they were little, when I was strong enough to do things like walk up a flight of stairs without stopping, and clean the house without feeling dizzy, when I could lift my little kids. I would lift them up and play airplane like all mommies do with their babies, and sometimes I would toss them up in the air and catch them, and they would giggle and laugh so hard. They were so happy, and always sure that I would catch them, always so safe. I wonder what it must feel like to feel that safe, to know that when you are in free fall, someone is going to be underneath you to catch you.
One of the most recent books I have read says "pain demands to be felt" (see # and how true this is. It demands to be felt in every area, every day. Emotional, physical, mental. There is no escape from it. There is nothing to make it better.
Every time I get a new pain, or in a new place, I start picturing a tumor or the cancer cells metastasizing. In my mind I can see them growing bigger, moving into the spot where I feel the pain and I start panicking. It is a never ending, overwhelming fear. A fear that has become a reality several times. But the visions do not go away. Why can I picture this so vividly? It's like a black THING inside of me and I can see it moving, sinking it's claws into new areas, and like exhaling a cough, it can spread the cells anywhere it wants to. At this same time I am trying to deal with the endless frustration, anger, cloying fear that comes from not being able to speak, think, formulate thoughts, walk, take care of myself like an adult many days. I do not have help with these tasks and they are monumental. Insurmountable. I have been independent since I was a teenager and even before that I had to take care of things children shouldn't. Now some days I cannot manage a text message or an email. If I get into the bathtub I worry that I cannot get back out or worse I will have a seizure while in there and that will be the end of it for me. All around me I see women with loving partners, gentle hands that help care for them. (#3) Partners that will check up on them and if they did not get a response would notice their absence and what it may signify. I will pass away all alone and scared and no one will check on me for a day or more because maybe it will not be my day to have my kids, so I will not be noticed until it is. I don't regularly text back with many people. Me being sick is such a common occurrence that friends just assume I am sick and not talking. I do not have anyone that loves me enough to sleep next to me during the night,that would wake up when I struggle to breathe during the night, that will notice if I do not awaken one morning. This fear is oppressing me. I cannot breathe for it.
I did all of my fighting. I am tired of being strong for me. I have been strong for others but when I turned around, I realized that I did not have that for myself. I always had to be strong for myself. My mother always told me that and my father told me on very fateful night when I was ten years old, to just be a strong little girl. And it was echoed back at me again just last night, that I just need to take care of myself and rely on myself.
What others we love don't realize, and I have realized from speaking to so many who are sick is, we don't fight it for us. I didn't fight it for me. I fought for someone I love. I know I'm not valuable to anyone this way, not worthy of anyone's love this way but I wanted to believe it for a little while and I fought it for that reason. I wanted to stay for a little while. In the end it bought me some time, but it wasn't okay.
Maybe I just loved harder and more. Maybe that's the way it is for some of us and not for others. I tried to hold on to something that never would allow me to, that never wanted to be held or loved, and I can only love in this one way. I can only love with all and not part of me. I realize the spaces that time creates for us and that time is the one in charge.
The only two emotions that matter in this world are love and fear and we are ruled by them. We need to love and be loved in order to live each day and pass through life, but we are governed by fear. Today as in every day I am controlled by the lack of one in my life and too much of the other. I feel as though I have lived my whole life in fear.
I am cancer and cancer is me. PET scans, watching the areas light up, CAT scans, MRIs, CBC counts, cell counts, bleeding times, PICC lines, preventative care, diagnostic testing, bags of Zofran and Ativan, steroids, palliative chemo versus preventative, cancer marker tests, Cysplatin, 125 levels, biopsies, ANC's, the grade, my failing kidneys, the edema, the difficulty breathing that comes and goes and comes and goes. Carcinomas and abnormalities, radiation, chemotherapy, radiation, chemotherapy, surgery, surgery again. Having chemo brain, being doped up 24/7 so that the simplest task takes monumental effort to accomplish. The pain...so much pain. Pain everywhere. The mets. The constant taste of yucky pennies in my mouth. Blood in my ears and my mouth and my nose always. Never ever qualifying for trial. All of it to never ever hear NEC or remission, the two things I coveted so badly. One doctor wasn't giving me good answers so I switched to another doctor and I didn't get any better under that doctor and my partner kept saying "we" will get answers and "we" will get through this so I got a team of two doctors and a whole team of specialists and I am a team of one all by myself that got all of the answers facing the whole team. All of these things make up who I am now. For 961 days. Yes I am a mother too. Yes I used to be a woman too. Yes on some days I am even more but no matter what, every single day, I am cancer and cancer is me. All of these terms make up the "cocktail" of my body now. Along with the onnipresent fear, anxiety, failure to measure up.
Writing a blog is easier than trying to talk to someone. In order to have ever made anyone understand it was clench your teeth, wrap your arms around yourself, look up at the ceiling. Hold your own hands. The one you love (in other peoples cases the ONES they love, but this is my blog after all and that is just not my life or how it was made to go for me, so bear with me here) should understand you better than anyone else. They don't have to live with it all as long, or as much. (#9) So why can't they just be ok for a little while? Their end is in sight. Life will go on for them. They will have more chances, more love, more happiness, more life, more light at the end of their tunnel. For us, the electric company of life has sent the bills and they are far overdue.