Writer’s Block
I get a lot of compliments on my writing and writing style. I feel pressure to not let you down. I don’t want to make a shitty post that doesn’t feel the thunder; a post that brings content, but doesn’t bring meaning. If that is what I’m going for I might was well post a bulleted TPS Report (sorry family that I did send that out to in last week’s email) and we can have a zoom with a Power Point presentation. That is not what we are going for here.
Each day for the past week I have opened my computer and stared at a blank word document. I have had full intentions of writing a new blog post letting you know about all of my most recent updates and trip to see Dr. Weiss. I put my fingers on the keyboard, but they don’t move. My brain wonders; I more than likely drift off to a happy memory. I refocus on the task in front of me, but nothing. Writer’s Block. I start and stop for a couple hours, then end up deleting anything that I did because it just wasn’t good enough.
Why so much pressure to perform? Because what I’m telling you is going to upset you, because it sure as hell upset me. And I want you to take the best possible message away from what you are reading, and find a way to turn it into the largest thunderbolt you can find.
Fight for Ben. Feel the Thunder. This is the Way. All mottos we have been living by since my cancer journey started 21 months ago. 21 months of ups and downs. 21 months of wins and losses. 21 months of the most courageous support group one could ask for. 21 months of love and happiness I didn’t think I was going to get when I heard the words “you have cancer.” 21 months of hope that we were going to beat one of the rarest cancers around. 21 months to wait and hear “this is very, very bad. It has spread to your brain, spinal column, and cerebral spinal fluid.” 21 months to be in utter shock all over again.
You read that right. I was informed last week my disease has aggressively metastasized to my brain, spinal column, and cerebral spinal fluid. Shock and anger were the first emotions. How could this be? I just got a scan saying the disease was stable in my lungs and sinus; and now you are telling me it is in my central nervous system?
I have developed leptomeningeal disease; a rare type of cancer that forms in the cerebral spinal fluid that flows around the central nervous system allowing access to the brain and spinal cord/column. I have tumors at S1-coccyx (the literal pain in the ass from last update), between L4 and L5 in the spinal column, and two very small tumors on the right side of my brain. The science behind it is quite confusing, and I will let you do your own research, but what I have been found and told is cancer cells can hide in the spinal column/fluid and not be killed by chemo because the central nervous system won’t let chemo cross the blood-brain barrier. So, while we were busy kicking NUT Carcinoma’s ass and celebrating shrinkage and having BBQ with friends and drinking hazy IPAs in Colorado, and climbing Angel’s Landing these little cancer cells were hiding in my spine waiting for the perfect time to attack. And I guess that was sometime in the past couple weeks/months and we didn’t find out until my most recent scans.
Just like NUT Carcinoma, leptomeningeal disease is not a kind cancer. It is extremely aggressive and there is no known cure. This disease will ultimately kill me. Any treatment I receive moving forward will be palliative in nature to help me with pain and comfortably extend my life for as long as possible so I can enjoy time with my family and friends, to allow me to live the best life possible, and feel all of the thunder you have created around me.
On Tuesday 9/28 I will begin a 25-day radiation treatment that will treat my entire spinal column and brain. It is going to be a rough 25 days. The first five days will focus on the tumor in S1 to help alleviate the excruciating pain in the ass I am experiencing. The next 20 days we will zap the entire spinal column and brain with a lower dose radiation to try and kill any cancer cells that are in the cerebral fluid. The goal of this treatment is to get rid of pain and to extend my life. Anna, my sister, has done an amazing job of rallying my family together to make a travel and babysitting plan so that I can spend as much time at home with my family while still getting treatment at UNC. Most days we will be driving up and back with Ann or a family member.
The first thing you are going to say Is “what can I do to help?” I know I have shunned help throughout this journey; but now is the time that I’m going to welcome it with open arms. Anna has done an amazing job of organizing travel and babysitting the boys/dogs. There may be a couple days we need someone; I’ll send out a mass message when that time comes. We may need help with kids, we may need a hot meal, we may need a kid taken to a soccer game, we may need the dogs looked after (Jasper is a super star!), we may need a hug, and we may need a shoulder to cry on. Just ask. I’ll find a way to put your thunder to good use.
The best thing you can do right now is dig deep and find your thunder. Put it to good use by helping others and letting your loved ones know how much they mean to you. Life isn’t fair, and I keep getting kicked to the ground. But you better believe I keep getting back up because life is too awesome to not keep living. Until the day I am robbed of my last breath I will use my thunder to make my life and the life of my family and friends the best it can be. And you should do the same.
This is not the life we planned. But it is the life I am living. And I’m going to live it to the fullest until my last day.
Feel The Thunder.
Ben
