I’ve never been to a therapist/psychologist/psychiatrist; I’ve lived a pretty straightforward life without any trauma that has caused me to seek mental health guidance. BOOM. You have stage IV cancer. You should probably go talk to someone about what you are going through…

One of the benefits of being a patient at The Lineberger Comprehensive Cancer Center at UNC is having access to an incredible team of doctors. These doctors are more than oncologists; there are doctors that specialize in every part of the body so patients can get the best care possible while getting treated for their disease. And one of those “body parts” the team focuses on here is mental health. My primary oncologist referred me to a psychologist who he thought was a perfect fit for me: Justin Yopp. A super intelligent man that can unfortunately relate to me – he has kids and is a widower due to losing his wife to cancer. He’s written books and even has hosted a Ted Talk on grief. I first met Justin about four weeks ago while I was receiving an infusion of one of my trial drugs. We had a great talk, told Ann and I we were on a great path with our kids, and we were managing the situation very well. But warned there would be tough times ahead, and he is here to help guide us through those times. We set up a follow-up appointment for March 16th, the day after I would have had my progression scans we could discuss what was going on with my disease, treatment plan, and my mental situation.

But enough about my time spent with my therapist, you are here to read about the cancer updates. So let’s get to that!

I laid in bed last night thinking about the telenovela I was going to write to all of you about what a crazy two weeks it has been since I last gave you an update. I like to write metaphorically, or tie into current events, or relate to a joke. I had some great ideas. I have a lot to say, and I wanted to find the best way to wrap you into my story to give you the news.

We took the kids to Disney World for a blowout weekend of family fun two weekends ago. It was amazing. It’s part of my update, but more importantly I was going to use my experience there as a long-ass metaphor of how a journey through the Magic Kingdom is like battling cancer. I was going to rope-a-dope you along in Disney lore and relate to all of the stuff I have been going through, but didn’t think it would get the point across.

Next idea, maybe write a post related to current events. I like that idea. March Madness has been canceled! Well shit, I didn’t get the memo, because my March has had a quite a lot of madness this year. But I didn’t think it would get the point across. Plus we are all still a little hurt no brackets are being filled out and I didn’t want to bring anyone down.

Last idea was I could play the “woe is me” card for all of you parents complaining about being stuck with your kids at home while on COVID19 quarantine. A quirky post about how lucky you are to be with your kids (you are) while I’m stuck at UNC without my kids. It was going to a slightly sappy post about what cancer takes from you and how fortunate all of you are to have this opportunity so don’t waste it. But I didn’t want to go down that road and get over emotionally and get everyone upset.

Then I thought back to a call I got: “Hey it’s Justin Yopp. I am being forced to cancel your therapy session on Monday because UNC Healthcare is canceling all face-to-face meetings with our department due to COVID19. Let’s communicate via email and set up a phone call.”

The Therapist.

He called me last Friday. Had to leave a voicemail. I wasn’t taking calls Friday. I think I was only awake maybe four hours last Friday. I was in mental and physical pain. Cancer was kicking my ass. I missed Lucas’ birthday party because I was so weak I couldn’t get out of bed. Solid effort Ben, way to be there for the family. It took me four days to text Justin back. The man I needed to talk to the most to get my ass out of bed and straighten me out mentally. Four days. Four days too long.

Yesterday I wrote him an email. A man I have only met for one hour and only talked to once in my life. I gave him a super long, super detailed description of what has happened since we last met with my disease and my treatment. Then it just happened. I poured my fucking heart out to him to let him know that this disease just fucking sucks. I told him things that I’m not even necessarily comfortable telling my wife on where my emotions are/were, but Ann and I had a good conversation yesterday and she knows the pain I’m going through because she witnesses daily. Justin doesn’t. So I had to let him know. And boy did it feel good. I finally communicated with someone how terrible I feel some days. How hard it is keep a smile when all you want to do is hide. How hard it is to be a father, husband, brother, friend, cousin, neighbor and answer all of the same questions over and over again until you just don’t want to talk. How hard it is to fight when the opponent keeps hitting you below the belt. And how easy it would be to just throw in the towel. I will admit, I shut down last week. And to anyone this affected, I’m sorry. The disease won a round. And now we fight back.

So where is the cancer update you have been promising us Ben? I’m getting there. Cool your jets.

It came to me this afternoon; my experience with Justin and my raw emotions are what should drive this update. I seriously thought about just posting my email to him here for all of you to read. But there is way too much personal info that I can’t share with you (yet) that could potentially have you upset, mad, sad, or want to immediately find me and give me a hug (can’t do that until you change your clothes, wash your hands, and put on a mask). I urge all of you to be open in your life with the ones you love, no matter how hard it can get. Last week I found the breaking point, but I didn’t break. Truthfully I don’t know why. I was fragile, damaged, and the weakest I’ve ever been in my life. I should have fallen apart. But something kept me together. I have some ideas. Maybe it is all of you reading this. Maybe it is two beautiful boys I have at home. Mostly it is the wonderful woman sitting across from me right now reading a book (Hey Ann!). And the call from Justin on Friday when it hurt the most, to let me know there is always someone to help. The Therapist. Thank you for listening Justin.

Update time. Going to keep it simple as possible. Take notes, there is a quiz at the end. Ask any questions in the comments and I’ll try to give you the most truthful explanation I can.

• I was released from the clinical trial on Tuesday 3/3 because my body was attacking my eyes. I began treatment for my eyes, and It was determined I would stay on FDA approved immunotherapy until I was to get brain and body scans 3/15.

• We took the kids on a surprise trip to Disney World on 3/5-3/9. It was a super Magical experience with the boys and our friends The Fulks. We balled it out, did all of the cool stuff and splurged on a VIP Tour.

o The morning of the 5th while driving to the airport I realized I had double vision. Didn’t think much of it because of the eye issue I was having from the trial drug.

o After landing in Charlotte, double vision got worse. Sent email to Dr. Weiss and the ophthalmologist letting them know.

o Made it to Disney in time to spend a huge chunk of the day in a park, got call back from the ophthalmologist literally as we were walking into Magic Kingdom with her telling me I immediately needed to go to the ER.

o Told her to get up with Dr. Weiss, that wasn’t really an option for me.

o Email from Dr. Weiss telling me to enjoy my family time in Disney, and to come back to UNC immediately when I get home.

o Figured out if I blocked an eye off, I would see single. So I went over to Pirates of the Caribbean and bought an eye patch. Picture attached.

• Land back in Wilmington Sunday 3/8 at noon. Spend some time at home sleeping, then it was off to UNC.

• Brain MRI and full body CT scan were bumped up to Monday 3/9. Knocked those both out first thing in the morning. Headed back to hotel to get more sleep. Get a call from Dr. Weiss to come back to hospital to meet ASAP.

• Tumors are growing. Not a little bit like you want with immunotherapy, but at a rapid pace like they are pissed off. That’s why I have double vision. The sinus tumor is growing and pushing my optic nerves and pushing on my skull, which in return is pushing on my brain. Got to get that under control. The bad news is, Immuno didn't work.

• Solution: Three-week radiation treatment using IMRT radiation therapy on the sinus tumor. I’m at UNC Monday through Friday and home on the weekends. This should shrink the tumor and help with double vision and the continued sinus issues I’m having. My last radiation treatment will be April 1.

• What’s next? Chemotherapy starting April 7. Remember that little tidbit about my cancer having a genetic mutation? Yeah, that is going to throw a wrinkle into the chemo treatment. We are going to have to try cocktails and see if they work, make adjustments and keep trucking.

• Where am I now? In Chapel Hill through Friday, then home for the weekend, then back to CH Monday. I'm not in the hospital, I only go daily for radiation. Ann and I are quarantined in a VRBO.

• Can I visit you? Thanks to COVID19, the brief answer is NO. The hospital is on LOCKDOWN and I am considered a high risk for infection. I will be out and about when I can, but no visitors in the hospital or my home until the pandemic is under control.

• Where can I get one of those fly stickers? DM or text me what you want with your address. I’ll make it happen. You know shit is getting serious when stickers are getting made!

• Are you sure you are ok? Yes. I’m good. This disease sucks. It sucks for all us. But without you there is no me. Without you there is no fight. Without you there is no WE. And I don’t know if you know this yet or not but WE are going to beat the FUCK out of this disease.

Live it up friends and family. Fight like hell. Make sure we beat this disease every single day in how we live.

Love to you all.

Ben