It has been difficult as of late. I’ve been writing but not here. Writing letters to my son, wishes for “if and only if” the time comes, letters to my husband, journals about my hopes for Milo. So, yes I’ve been writing. When the pain comes, doubt filters into my mind. So, I wonder if it is the end to my story nearing, the devil on my shoulder telling me to be angry, or just the damn radiation that is doing in my spirit. I hadn’t read much about how awful the radiation feels, except for the skin issues. The ironic part is that my skin is fine. Perhaps, it is the strength of the olive skin, the olive oil of which my mother swears keeps her youthful. My experience I guess, much like this whole cancer approach my body has taken, is a little bit different. Exhaustion doesn’t seem to be a strong enough word to describe the level of tired I feel. I cry a lot, and am in pain. I feel as if my insides are burning. I can hardly read my son his night night book because I am more tired than he is by 7pm. When my pain meds wear off, I have severe sadness, no energy, fevers and I can’t eat. I’m thinking this is the sad portion of my story yet the devil on my shoulder tells me it’s never ending.
My intentions are not to give up but the realities of my situation seem to be closing in and I do not want my son to see me so weak and tethered to the bed. I see Hank, my doctor, on Wednesday to discuss new options. Thankfully, the big brains are back in my corner as soon as they heard the ‘a-fortune-for’ drug is only working in some areas. There is hope, life isn’t perfect and things take time. I am grateful for all measures that are taken to sustain me, yet I want to live fully. I want to be able to walk the block to Healeo http://www.healeo.com/default.asp for my juices, have some energy to celebrate my husbands upcoming birthday, take better photos. I feel as if every time I write or speak of my hope it gets kicked to the curb. Shortly after I wrote, Such is Life, https://keepthecalm.wordpress.com/2012/11/08/such-is-life/ my life started to become more difficult to live. This is what makes me sad. With all of this calm fighting and staying the course, have I used up all of my energy? Slow and steady wins the race, and yet at a snail’s pace I barely make it around each corner these days. I won’t let my life come to this, I’m going to cross that finish line one way or another and make it to an age that my son will remember me, and remember me happy. We can create a full life, make it through unremarkable troubles, heartaches, and pain, and yet still have learned and enjoyed each passage. The sad passages give me the courage to move through the painful ones, and embrace the beautiful times. Gratitude always, I try.
At one point during this cancer battle, someone said to me that it is not uncommon for cancer patients to feel entitled. I balked and was angry at this statement and message. I don’t believe I have had an entitled day in my life. Have I said “I don’t deserve this”, why yes, but does this make me entitled? I’ve worked hard to be a loyal, honest and graceful woman. So, no, I don’t believe those of us going through cancer are, or feel entitled. We get to use the cancer card for sure, much like a handicap pass, or like the pregnant or old lady on the subway…I should get a seat before a healthy young person tweeting their complaints for the day. What I do seem to take issue with as a cancer patient are the people on the outside who have zero presence of the journey I am taking, those who are not mindful and undermine my decisions. The people that bitch every day on FB or Twitter about traffic or the weather, as if cold rain or snow in winter should be surprising, or the traffic on the LIE in NY at rush hour is a shocker. These things annoy the heck out of me. Should I waste my energy thinking of it, no, but it brings out the anger of which I must feel for my diagnosis. I have a new appreciation for the action of complaining. I have new advice to those experiencing cancer as a bystander to a loved one. Shut the fuck up. If you are not a close friend, don’t bitch to me about anything, at all. I have unbearable pain to shoulder and just enough energy to pretend I feel okay to my kid. I’m over listening to you people talking about your boss, the cold snap, or election results. Accept what is in front of you and take it like a man/woman. We all have a sad passage hiding within our stories, must we simplify them with the baseness of social media venting?Teaching courage and gratitude might be a better outlet. I request you fight for it, feel it and let go of the mundane blues. Perhaps this is me feeling entitled that some of you should change because of my journey. I am not sure, but with gratitude I try…can you?