I received my post surgical biopsy report yesterday and much to my surprise it was inconclusive. It stated that the specimen did not survive processing. Of course this was very disturbing to learn. I have since learned that this occurs for various reasons, not always within human control. I have to believe that my doctor’s initial observation of a herniated muscle causing the lump is correct. I just cannot subject myself to additional surgery right now, and continued surveillance will be vigilant of course. This is where my faith rubber hits the reality road, for sure!! My follow up appointment is in another week.
I’ve been trying to put into words where my mind is now, 2 1/2 years after a breast cancer diagnosis. You would think that by now I would have “moved on” or returned to life as it once was, “normal”. So why hasn’t that happened? I am often asked in my counseling work, how long it takes for life to feel normal again and I must say, I personally have not found that “place”. Sometimes you hear it referred to as “the NEW normal”, but that is kind of misleading because it doesn’t feel like it should feel and “normal” feels out of reach, somehow. Last week I laid in bed, ready to fall asleep but I wasn’t asleep yet. There in the dark of night, my mind wandered. I have no idea what brought on the thought, but there I was, in the operating room the morning of my breast surgery and it felt every bit as real as it did on that day. I had just been through a very painful, torturous node biopsy injection of dye, where I laid fully awake, with no anesthetic (that was the protocol at the time, believe it or not – not so anymore), and now here I was in the O.R. prep room having a nurse attempt for the third time to start an IV on me, yet blowing my veins out at every try. I was shaking in pain and fear. I could not believe that within just minutes I was going to be rolled into surgery where I was forever to be maimed. How could they not even get this simple step right? I remember the look that my husband gave them, “Enough you people. Can’t you see she has been put through hell already?” and within seconds they gave me an injection of a sedative. That was when tears began rolling down my cheeks to my pillow. I knew in that moment that I am experiencing post traumatic stress. I re-live the events of two years ago and they are clear as day in my memories. Why can’t I just say to myself that the cancer is gone and I can go back to my old life? Because no doctor will tell me that I am cancer free and no doctor will say that I have been cured. I can only liken it to what soldier must go through when he returns from war. His family is so happy he emerged alive and safe, but in his “world”, the world of war, terror reigns and fear is a familiar voice in the back of his mind whispering “watch out – I’m gonna get you!” It’s as if I’ve returned from my war, the war on cancer, with the enemy in my back pocket – just waiting for his chance to come back and attack. When you’ve been attacked once, you never let it go. You never forget. Ever on guard, always the strategist, aware on a daily basis of every possible change in your body, every ache, pain, – it changes you. Survivors told me this when I was first told that I had breast cancer, but I had no idea what that meant – it will change you. You’ll hear soldiers return from the Middle East and say the same thing. It changes you. How can it not? And those who have never been through an attack, can’t seem to understand, and with that the survivor feels a distance from even those whom she loves. No wonder military soldiers ask to be returned to their brothers in arms. Coming home is difficult. Re-joining society after an experience like this feels empty and foreign. Only other survivors seem to feel your pain and loss. When I was growing up, my father always answered our front door with his gun in his back pocket. It wasn’t as if we lived in a bad neighborhood. We didn’t. We were the upper middle class Americana, where kids played hide and seek until late at night in their yards, and we had annual Christmas potluck parties with all the neighbors. But our home had been broken into once by a burgler when we were away from home, and ever since that experience my dad has never let his guard down. Even now. Even forty years later he is aware that the enemy’s attack is just one broken window away from becoming … a bad reality. Isn’t that what terror is after all? The fear of a very bad reality.
“No evidence of disease, or NED, is the new ‘remission”. But there is no cure for cancer and a certain percentage of cancers will recur, and nobody really knows if it will happen to them. Statistics get thrown around, charts and studies would conclude that the odds are in my favor of remaining NED, but there are no guarantees as we would all hope for. Such a guarantee is just out of reach. If it were, then I could stop thinking about it on a daily basis and we could all just leave Cancerland behind us.
I woke up the other day and thought to myself, what if I just didn’t talk about breast cancer anymore. What if I stopped going to support groups, stopped visit the oncologist, stopped hanging out with fellow survivors for coffee and lunch dates, WHAT IF I JUST QUIT CANCER? Maybe THAT is what would get me to move further along up the road. I’ve learned of plenty of people who did just that. They never spoke of it again, and they went on in their lives and stopped identifying themselves as survivors. But then later in the week I was working the volunteer hotline and took a phone call from a woman who has stage 4 breast cancer which has spread to her bones. She really needed someone. I found it hard to relate to a lot of what she is going through, but then we found the common bond of our faith, and it was there that I realized my BEING here in Cancer is for women like her. Women who need a ray of hope. A hand of compassion. There is a sisterhood here that few can understand. I know that when I was in my darkest hour I needed the survivors whom I met and became my friends. I needed the help of those who had gone before me and came out the other side, happy and healthy. I needed them like others need me now and so I guess I won’t be “quiting” cancer anytime soon.
This was the word I received from my oncologist in a phone call today. Last week’s CT scan of my right lung noted no changes (or growth) to the nodule seen in March, and they want to re-scan it again in 6 months. An enlarged lymph node was noted as well. I guess I am suppose to feel relieved….”satisfied”….but somehow I feel, well, in limbo. Like I am waiting for a bomb to drop. They wouldn’t give me the “all clear”…And maybe this feeling comes from having been through cancer and having a bomb dropped on me once before, without warning, without symptoms, vulnerable and scared. A post traumatic stress disorder, of sorts. Always feeling like I must remain on guard. Always on watch. Terrified of it coming back again, terrified of it killing me. I’ve probably read w-a-y too many stories and heard far too many unfavorable outcomes, and so it’s easy to let myself fear the worst, but then I must remind myself that all too often its not the good outcome stories we hear about or the stories of triumph and survival, and I know there are far more of those than not . But for the time being I must be satisfied with this result and consider it as my doctor said, “good news”. 🙂 I am taking an oral anti-cancer drug now which is suppose to starve off any lingering cancer cells that might try to grow, and I take this drug for the next 5 years so I am doing everything within my power to stay cancer free. That is all I can do. “Give it up to God” what I can’t do, as my son says! Besides, there’s nothing telling us this that this nodule is cancerous, unless it starts to grow, and so that is what they keep checking.
This coming weekend that son, Keith, graduates from high school and leaves 2 days later to work at Young Life camp at US Army Camp Darby, Italy, on crew along with a couple hundred other staffers. We are busy getting him packed up and ready to be away for a month. Needless to say he is a wee bit excited!
Fathers Day orders poured in last week and I have been busily stamping up my projects and trying to stay afloat! This, plus making plans for Tim’s retirement and booking all of the details for our England/Ireland trip give me little time for fretting! Now to go to a cupcake!
Here is a great song about how I know one can get through trials of any kind. It is called “I Get On My Knees”. It’s called prayer…crying out to the heart of God…take a listen! If you can’t see the embed video, click here . “Cuz I’ve learned in laughter or in pain, how to SURVIVE! I get on my knees!”
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To view archived entries dating back to Sept. 2008, see the list at the right below the photos and links.