From The Heart

I have thought long and hard about the cancer update I’m going to give you below. I have written, and rewritten, an update at least 10 times. I keep deleting them because I get too cute, or the metaphor runs too long, or I beat around the bush, or make too much puffery of the fact this is a horrid disease. So the post below is from the heart. It is me letting you know where I am in in life, the hand that has been dealt, and how we are handling it. There will be hundred and one ways for you to respond; and I will not accept any response that begins with “I’m sorry;” that is not in this Thunderous Herd’s vocabulary. Read on. Feel the Thunder…

In January of 2020 I was diagnosed with an extremely rare and aggressive cancer called NUT Carcinoma. The disease affects less than 300 people worldwide each year. There is no known cure, and there is no clear treatment path. My oncologist and I never talked about how long I have to live; but if you use Google it is going to tell you average life span after diagnosis is six to nine months. I have gone through five different forms of cancer treatment, and I am now moving onto my sixth in the form of an aggressive chemo.

Now I’m neither a calendar expert, nor do I work Time Variance Authority tracking down Loki. But I do know that we are way past six to nine months from January of 2020. To be exact we are almost eighteen months past January of 2020. Feel the Fucking Thunder! What does this all mean? It means we are WINNING in a battle that will eventually defeat us all. I can literally feel your Thunder.

I know what you are thinking right now. “Holy shit, I’m so sorry!” But please remember, we are a group of empathetic Thunder herders. “I’m sorry” is not in our vocabulary. I know you’re sorry…we are all sorry. Cancer sucks. It sucks really fucking hard and we are all sorry it is on this earth, and sorry that it is in my body, but I will NOT let it define my life and our relationship. I’m sorry, but I’m just not going to let that happen (see what I did there, tricky, right?)

So where do we stand?

I have numerous tumors in my lungs that are not responding to treatment. The clinical trial at Memorial Sloan Kettering was a dud. I entered another trial with my doctor at UNC that did not work either. Two strikes. We aren’t striking out a third time, so it is back to chemo. Hold that thought for a minute.

The past six months of non-chemo life have been a glorious holistic fight against cancer. Without poison running through my veins I have lived the shit out of some life. Disney World with the kids, Colorado to ride the Colorado Trail on the mountain bike, a HUGE trip out west to visit ALL the national parks, cold beers with friends, the list can go on and on about how we were beating cancer on how living the “best life” is the best way to beat this disease. We are going to continue to find holistic ways to get wins; we are off on another bucket list trip in a couple weeks, albeit much smaller in scale still a way for us to get a win against cancer.

What does all this mean? This means I need Thunder. I need you to reach down and find the biggest Thunder you can find and unleash like you were Thor himself. I have started a new chemo regiment called C.A.V. (includes a drug called the “red devil,” sounds fun doesn’t it?) at UNC. I will be getting drugs administered every 21 days for four to six cycles. This treatment is much more toxic than my previous, and will inflect much pain upon me. It will not hold me back from being a dad, husband, brother, son, friend, cyclist, Thunder enthusiast; but it may slow me down. I had a port placed last Tuesday (remember the red devil, he can only go in a port, no veins, eats them alive) and I began my new treatment last Wednesday. Life has been moving a little slow since then, the fatigue is REAL! But I was able to get out for a short bike ride yesterday and managed to sneak in a beer last night for Father’s Day.

But wait, I thought you only had six to nine months to live?

Ah, you are a smart one; you got stuck on the fact that we are beating the odds. Those are just numbers. No one went and asked Google how long does Ben Brown have to live fighting against NUT Carcinoma because no one has ever witnessed me fight this fucking disease. And if they did ask Google, the mighty bot it is would not know how to answer because I have all of you as part of my team. You can’t measure Thunder when looking at the odds.

There is no timeline on my life. I’m going to fight, and beat, this disease daily with how I live my life. Ann and I will continue to push forward with treatment; we will also continue to push forward with living life. I’m still relatively very “healthy.” Yes I’m suffering from side effects from cancer, and yes I’m suffering from side effects of chemo; but that isn’t stopping us from beating this disease by how we live. Plan to see my family and I out in the community, see me on the bike path or at one of the local trails. Hell, you may even get lucky and see me drinking a hazy IPA on your front porch one day. I guess what I’m trying to tell you is that we aren’t going to let NUT Carcinoma hold any of us back. And I need all of you on board for that.

I know I’m going to get a lot of “what can I do to help?” and “can I come visit?” or “do you want to grab a beer?” or “do you want to go for a ride.”

From the heart: Yes. I would love to see all of you and spend time with all of you, but the timing has to be right. We’ll figure it out as the time goes on and we’ll all get together.

But what I need now is just you being the you have been the past 18 months. Bring the Thunder every day. All day. And never, ever be sorry for being a kick ass friend. And I mean that, from the heart.

Feel. The. Thunder.