NED. I am so sick of those letters, and the words they stand for: No Evidence of Disease. That is the best I can hope for with renal cell carcinoma is NED. It is not curable, you just go into a state where no metastases are seen, where it looks like the cancer is all gone.

Everything hinges on that. My gastric bypass (yes, I am working toward that, no that doesn’t mean I am any less for fat acceptance, it just means, *I* need the help to lose weight to make handling my cancer easier), my hernia surgery as I have multiple small hernias on my incision line. And, right now the best we can do is wait until I am NED, and lose some weight to make the surgery easier on me. Or when I have my fat ass surgery they may be willing to put in the mesh then.

Unfortunately, I will have to have mesh on the entire length of my nephrectomy incision as it is very likely to come back time and time again, as it was a very invasive surgery that cut through all the muscles that wrap around your torso. The incision was measured and it is actually 16 inches, not 15.5. Now, hold a ruler to your stomach. From your belly button up, then add 1/3 more of that ruler. That is how long this damn thing is.

Now, I don’t give a damn what it looks like. I am not vain enough to care that I have a line down my stomach. That scar saved my life. I am lucky, my cancer was caught while it was just under stage 2. 1/10 of a centimeter more of growth and would be considered stage 2, instead of 1. That may not seem like much but that helps me mentally at least. And I need that little bit of hope.

My family and friends don’t seem to understand what is going through my head with all of this, or the fact that I am not cured just because my kidney is gone. I will always have RCC as part of my life. Unless they come up with a definitive cure it is there. And, honestly? Drug companies are more likely to come up with long term, prolonging drugs more than cures. Cures are one time money coming in, treatment is multiple times of money pouring in. The ‘treatments’ for kidney cancer are insanely expensive, and pretty much are more hopes and prayers that anything else.

I know this. That hangs over my head every single day. If one or two cancer cells escaped prior to my nephrectomy, they’ll attach somewhere and grow. Then it is a race to try and keep them from enlarging.

Sigh, this is depressing enough. I’m off to finish my drink (at Panera Bread) and go change for the dinner theater we are going to. Have a good one.

1 thought on “NED

  1. Sweetie, I know it isn’t much, or anything at all, but I just wanted you to know that you are on my mind and in my prayers and I sincerely hope you have a good day today, and can find a little bit of peace in it.

    There is no way your family or friends can possibly understand the fears, frustrations and anger you’re going through, nor how living day in day out like that disrupts your life, right down to the second sometimes. You are right. Sometimes all a person can do is find those pockets of serenity and hold onto them and cherish them. I suspect you are able to do that more skillfully than the average person. Circumstances like that kind of force that perspective on you.

    At any rate, be well, and enjoy the promise of today.

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