Friday, April 6, 2012

April 6, 2012

I started back to work this week. It was infinitely better than I expected. Not that I wasn’t excited to see my MMG family or thankful to have such a wonderful job to go back to, but I thought it would be more difficult to make the switch back to “normal.” Thankfully, we are so busy that I had to jump right back in and it was eerily like I had never left. I’m only back three days a week for the first few months, so that is making the transition easier.  We are slowly, slowly regaining more pieces of our former selves – allowing life to take center stage while cancer waits in the wings. Sorry cancer, you’ve become too weak to perform, life is taking your role now. And so we exist each day: doing chores, making dinner, committing to events in the future. Every part of our former daily routines that used to feel like such a bother, are the exact things that remind us we are alive – that we are back – that we finally have the freedom to worry about things that have no bearing on life-or-death outcomes. The Spring sun shines brightly, offering new beginnings and promising renewed opportunities. And for that I am thankful.

In the act of “returning” it seems almost like the cancer never happened. It is a surreal memory mixed with new self-identification mixed with a hazy understanding that it might not be over. I don’t know where I am. I don’t know who I am. I am walking a tightrope, standing in the middle, not looking forward and not looking back. Over one edge is the painful memory, which is not really a memory but more of a permanent piece of my being, of the horrific-ness of the past 18 months. Over the other edge is a crushing pressure to live all of the lessons I’ve learned, to wake up thankful every morning, to exhibit nothing but love and grace. I am stuck here in this middle place. And I am terrified. I am terrified of never being able to move forward. I am terrified of moving forward too quickly and losing all of the lessons I have learned. I am terrified that I won’t be able to become the person I want to be – that I will never be the friend, daughter, wife, mother that I’ve promised to become. It is like I have broken free of captivity but am forced to carry my captor with me everywhere I go. And feeling this way makes me feel a guilt that crushes my soul. How dare I feel anything but an overwhelming sense of gratitude and love? What right do I have to experience any negative emotion at all when I am, so far, being given the ultimate gift of a second chance? Every time I feel sad or scared or angry, I feel like I am looking my fellow warriors in the eyes and slapping them right across the face. My treatment is working. All of our wishes are being granted. I am experiencing the results that every patient hopes for and I am not appreciating it enough. I am teetering on the edge between life and death, while simultaneously struggling to remember that it is even part of our lives. It is like I am caught in a dream where I can’t run. I know where I want to go and I cannot get there no matter how hard I try. I am constantly, every second, trying to define my new self. I scrutinize every one of my actions, thoughts, emotions, to determine how it fits my survivor self. Everything is the wrong size. Everything needs to be tailored. I am exhausted. And even just writing this makes me hate myself.  

But this is the truth. This is what it is. Death has tapped my on the shoulder and I cannot shake his icy touch. He is one step behind me at all times, reminding me that no matter how “back-to-normal” my life may seem, I have forever relinquished control.  I cannot run; he clings to my legs. I can only stand my ground and fight. Fight for myself and for all of my cancer brothers and sisters.  Fight for the researchers who are devoting their lives to finding us a cure. Fight for the all of the loved ones of people with cancer who stand by us every day, experiencing just as much if not even more pain and emotional trauma than we do. The desire to lash out, to take action, to scream from the mountain top boils just under my skin, making me restless like a caged animal. I am an amateur in this ring. I need someone to train me, to tell me what to do. How can I fight? What can I do? Yes, I can remind people to use sunscreen, and I can blog about the importance of clinical trials, and I can support the banning of tanning beds, and I can tell everyone I know about the amazing treatment opportunities at NCI. But I need something bigger than that. I need a louder voice. I need to be doing every possible thing I can or I will break. That is not a metaphor. This need is so overwhelming that it is threatening to drown me. I have this fight in me; I just need the chance to unleash it. I will find a way. I have to find a way. I have a debt to repay and the rest of my life to do it. And for that, I am thankful.

Today I am thankful to rejoin my wonderful MMG family; I am thankful for all of the amazing warriors we have had the opportunity to meet through this journey; I am thankful for the IL-12 treatment that is curing me and will no doubt cure our new friend, Angela, as well – stay strong sister we are with you; I am thankful for every comment posted to this blog – if anyone has any questions for me or wants to get in touch one-on-one please feel free to email me at melanomamomjg@yahoo.com, sometimes I am unable to reply to posts asking for my assistance due to the nature of the blog; I am thankful for our amazing friends and family; and as always, I am thankful for my fabulous husband, Jeff, and our perfect baby Kai. I hope that you too learn to fight, little one, but I will do everything within my power to keep you out of the ring.

7 comments:

  1. Good luck Jamie. You provide a lot of hope to many. Thank you.

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  2. Thank you. You give me hope.Cancer has taken too many loved ones and I now look at blogs to give me hope.Like other diseases,it can't take everyone.Thank you for keeping the blog updated.

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  3. Love your blog as always!
    You are such an inspiration and it wounds like you're brand new now ... but remember it's all you girl... just you ... just be you!
    I hope you find a way to relax after the life-twister-storm you have been through.
    Sorry I missed your official MMG reentry last week. Hope to see you soon.
    Jacquie

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  4. Jamie, Jamie, Jamie- Sister Friend- STOP being so hard on yourself. You just came back from an incredibly exhausting battle. And you are victorious! You deserve to relax. Enjoy LIFE- live it- appreciate the tiny little things that might have passed you by before the battle began. Cuddle Kai- take the time to take pictures of him, spend quality time with him- before you know it he will be turning 5 and starting kindergarten in the Fall (trust me- I'm there now and I have no idea where the time went). Everyone is overjoyed to celebrate with you and have you back. We don't expect you to change the world right away. Although, you already have. Take baby steps for now, until you can decide what it is you want to do. But, know this- you can do ANYTHING. You are an amazing, strong, incredible woman, wife, mother, sister-friend, human being. And no matter what you decide to do in life- you have a HUGE group of people who love and support you and will be right there by your side to help, just say the word. You have to know that you don't owe anyone anything. Everyone did what they did for you because they wanted to. To help you, to support you, to fight alongside of you. And because of what you endured- all that pain, discomfort, the horror of it all, others will be healed. So, please, cut yourself some slack, give yourself a break- you’re allowed to be frustrated. You’re allowed to be mad, scared, even bored, just be. Be you, be alive, be, we’ve all been praying for this moment. For you to be able to be alive and back with us. No one can understand what you are going through but you, I know that but, just remember that I love you and I’m so glad to have you back. I’m so happy for you and Jeff and Kai. And for us, all of your friends and family that get to be with you. Love you Sister!
    -Donna

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  5. Don't know if you read "Our Town" at Wilson, but if you did, you should recognize Emily's question to the Stage Manager: "Do any human beings ever realize life while they live it?--every, every minute?" "No," replies the Stage Manager; then, "the saints and poets, maybe--they do some." Your brush with mortality has made you realize life, and it is a heavy burden. Sure, you feel the overwhelming need to be grateful and happy all the time--but you're still human, and you probably can't do that every, every minute. Donna's right--you're allowed to be human. In fact, I think it's required. But the chance to be oblivious to life is gone forever. You are probably going to have to live with the notion that you can never pay back the gift you have been given, and in that understanding, you remind all of us that neither can we. Now learn to knit!!!

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  6. Fellow warriors would not be hurt by these feelings. I am sure they can all relate (I certainly can). Your blog is beautifully written. I am so happy for you the treatments are working, I am so sorry you have been in the battle. Best of luck to you.

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  7. As I sit here beside my husband's bed (at UVA, following our discovered recurrence biopsy at the NCI/NIH) following his 5th dose of IL-2 in our second week of this first cycle, your words give me such great hope....and how I can appreciate the candor and feelings you've articulated so poignantly.

    Wishing you ever-growing peace, ever-growing health and MELANOMA FREE living....for many, many years to come. (and remaining faithful we too will experience the same.)

    THANK YOU, for this and for all your open expression...and for your example of VICTORY!

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