Fight For Ben

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WOW is Me

Life doesn’t always go as planned; I’ve definitely learned that in my 40 years rotating around the sun. However, when a doctor tells you that you have cancer, life really doesn’t go as planned.

Woe is me.

When Dr. Weiss asked if I were depressed at this week’s meeting I responded with the normal “cancer sucks,” but I couldn’t be any happier with life. According to the good Doc this isn’t clinical depression. It is “adjustment syndrome.” How do you adjust to having a disease inside of you that you can’t control and doctors are scrambling to find answers? We adjusted how we live. We adjusted how we communicate. We have adjusted how we sleep. We have adjusted every aspect of our life. Cancer sucks.

Woe is me.

Now that you all know about my NUT Carcinoma diagnosis, we all know what an uphill battle this “adjustment” is going to be. It is a disease that is relentless in its quest to make that adjustment period uncomfortable, painful, and filled with voids of uncertainty. We are all left looking for answers that apparently we cannot find.

Woe is we.

I have been through six different types of treatment for my cancer. More than half failed to even shrink a tumor by a millimeter. We are still looking for the answer to crack the code on NUT Carcinoma. I’m on my seventh treatment plan now. A chemo cocktail so potent the maximum amount of cycles I will be allowed to receive is six, even if the drugs are working.

Woe is me.

I have hit the lowest of lows in the past 19 months. I have cried in the arms of Ann; I have cried in the clutches of my mother; I have crumbled into the arms of my best friends; I have emptied my emotions with my brother and sister; I have fallen to my knees before God. But what I have learned is these are not low spots in my treatment or life. These are the highest of highs. You are there to pick me up. You are there to carry and guide me through this transition. You Feel The Thunder. You roar like the lion when I purr like the cat.

WOW is me.

I am forever grateful for everything anyone reading this has done for me or my family the past year and a half. You are true cancer warriors. The outpouring of love and generosity has been amazing. You are my Thundering Herd.

WOW is me.

I received disease progression scans on Tuesday 7/27 at UNC with Dr. Weiss. At this point I have received two rounds of the chemo regiment C.A.V. I haven’t been on a chemo treatment that did anything positive since December of 2020; so going on 7 months of nothing working. CT Scan at 7am, blood work at 8am, meeting with Dr. Weiss at 9am with the results.

SHRINKAGE.

WOW is ME.

For the first time in seven months we get positive results. Sinus tumor remains in remission. Lung tumors have shrunk in the range of 20-30% for the larger tumors, and some of the small ones have decided to disappear. Other tumors linger. But we have shrinkage. This is a giant step forward in preserving life, love, and Thunder.

WOW is ME.

Where do we from here? I received my third round of C.A.V. after the good news. I will go back on 8/17 for my fourth round. I will then be scanned again on 9/7 again for progression scans. If the chemo is still doing its job we will continue on two more rounds. If its not doing its job, we will move onto another treatment option. We are still looking for that miracle. Still looking for the answer to the NUT Carcinoma puzzle. Don’t let down your guard now. The Thunder must continue.

Thank you all for being part of this journey. All I can says is “Wow” I am so damn lucky to have you as friends and family.

WOW IS WE.

Feel The Thunder.