Chapter 1- Diagnosed

We don't want to forget what we survived. Tim wanted to document and write this story together. This is our journey with Stage 4 Colon Cancer. I do not have a medical degree or background, I am just a wife that advocated for her husband. Happy to be a resource to anyone in the fight.  This timeline will be part of a book I am writing on Advocacy. Tim and I swap off writing each paragraph and it's pretty obvious, starting with Tim. XO

My family and I went to a ski condo on the east coast at Beech Mountain with our friends for New Years Eve.  The plan was to spend a day or so skiing and then ring in 2022 with a good view and good friends.  Obviously life doesn't always go to plan and while we were at the mountains, I had what I believed to be food poisoning.  I spent hours in a ball throwing up in the upstairs bathroom and for a day and a half and just felt terrible. So much time was spent in the bed feeling like crap, but then, nothing.  I slowly pulled out of a hole and eventually felt fine.  Even had a bourbon with Thatcher before we left and life ensued as usual.  Just a weird experience, I never had food poisoning before.  We packed and up and then just headed home to start the year.

Between myself and Stephanie sharing 29 years of experience in motherhood and decades of being wives, we immediately knew it was not food poisoning since everyone had eaten the same things. We laughed about the time we thought Thatcher had "man flu", but turns out he had shattered his heel... whoops. We red flagged this incidence as odd because Tim does not ever get sick and wished for better days ahead in this fresh new year. As soon as we got home, I rang in my 40th birthday with Covid. I had a pretty bad case and was down for 2 weeks. Since Tim had been sick, I quarantined so everyone else would stay well starting the school year back. I did not feel like celebrating and was desperately getting well for a once a year logistics meeting I help pull off in Las Vegas for some family.

This was a little bit of a rough start to the year, but whatever.  Just keep moving, just keep looking forward and then you eventually forget the little snags life throws at you.  We got home from the mountains and just resumed the hustle of our life.  Over the years, if you asked me what are 'hobbies' I do or what do I do for fun, it really depends when you ask me that question.  I have MANY.  Everything can grab my attention to a degree.  But the one thing that has remained consistent is I love working on my home. And not in a little, I built a garden box type way.  Kind of a 'I should have pulled permit for that' kind of way, but too late now so oh well.  My first project of 2022 was to start building our deck, which the size and scope slightly got out of hand, but just say yes, start the project, and figure out the details later.  I felt good.  I was feeling good and had big plans for the year.  A few weeks roll by and a crazy thing happens.  My food poisoning bug hits again.  This time, its was proceeded by a really stressful conversation.  As I am walking back to the parking lot, my stomach just goes upside down.  Again, I'm down for a day and a half and I'm fine.  Maybe its stress or maybe its food issues, didn't really think twice about it.  Literally, life goes back to normal.  I'm exercising, I'm having great rhythm of waking up and reading, and not just stupid political fiction thrillers, actual leadership books.  This is still a good year.  

I am off to Vegas and things are still weird. Weird start to the year, weird birthday, lots of weird. Tim also had another weird round of stomach pains he mentioned and had gone down again right before I left. It seemed to be triggered by stress so I was now worried, but out of state. The crap always seems to hit the fan when I would leave to go out of town. In Vegas one year on this same event, I got the call from DFACS that we matched with Zach and when could we come meet him. So that was a fun phone call home to let Tim know we were getting another kid. I hadn't heard from Tim on this specific day and I was half way through the trip. He was sick for the 3rd time. My gut said it was time for action. So I pulled triggers again from Vegas. I had our neighbor and family, Michael, come pick him up and drive him to the ER. Kind of like a 'surprise' because I knew he wasn't going to comply. I then called his dad to come stay with the kids since I was with his mom on the female powerhouse logistics team run by his aunt. Tim's mom and Michael's mom are sisters and she is my partner while on these trips. I grabbed her hand and said, "Mary Kay, Michael is driving Tim to the ER, its time to pray."

For what its worth, I'm not one of those guys that is just belligerent and overly macho to the point where I wont see a doctor.  I take medicine and  I actively make fun of those people that ignore some terrible injury or sickness and say everything is fine.  Jen likes to put me in that camp, but she's wrong.  And so yes, I had yet another 'episode' while Jen is gone.  This one seems a little more serious.  I remember being on the bathroom floor just on the struggle bus because I couldn't get very far from the toilet because nothing was staying down.  And so, my cousin Michael just 'randomly' shows up and says we are going to the ER. Fine. I'll go.

Exactly my point, I am not wrong Tim, I had you hijacked and bodysnatched to get you to the hospital. We were still in "patient only" Covid times so Tim was by himself and my sister was on speaker phone with him interpreting doctor information.... or lack thereof. I knew two things that night. We were never going back to that hospital and I immediately scheduled him for a colonoscopy. They had seen "inflammation" in his GI track, later we would show MDAnderson the disk and they would say, "Oh its clear as day, here's a 7cm mass right here on the scan they missed." It didn't matter because we would discover this mass a week later at his colonoscopy and I was on a warpath to get information.

So Jen, aka, Junior Holy Spirit, likes to make things happen in mysterious ways when she wants things to happen.  I didn't feel like i really had an option of going to the ER that day.  All the way from Vegas, she orchestrated my little visit.  The doctors did some blood work and labs.  They even did a CT scan that apparently showed some inflammation, but nothing more.  I'm not sure if anyone else has had this same experience, but when you go the the ER or any doctor really, there ends up being no conclusive reason as to what you have.  They say it could be this or it could be that, we are just not really sure.  Here are some fluids, some pain meds and perhaps you follow up with someone else.  Whatever.  I'm fine. I'm going back home. 

Little did Tim know, I was coming in hot off the plane and Covid seemed like a distant memory. I was fueled by adrenaline and anger. I have had many jokes this year how sometimes all you need to win a fight is caffeine and anger. I was angry our year was already a mess. This was 40. I was angry he was sick. I was angry I missed a leadership exchange when I was out of town. Good thing I was tossing off hats and finishing my logistics job because there was only one hat I was going to be wearing for a long time, Health Logistics Manager. That is what Tim started introducing me as at all his appointments. I would normally have to expound and say, "Hi, I'm Jen. I'm also his wife. I'm also recording all of this as we move through this appointment and get some questions answered." Nothing like getting just the facts mam when you go on the record. We followed up with a GI specialist and the colonoscopy was scheduled.

Oh yeah!  I forgot.  In November I literally turned 40 and all this crappy health stuff happened.  I keep telling people to not turn forty.  Its a terrible idea.  So far, being forty has not been a great experience.  And sadly yes....  I started calling Jen my personal health logistics manager.  I'm not entirely sure if thats a real job, but it should be.  I would imagine that it would have taken a decent more time before I would have gone to that initial ER visit.  I think she even told to me record what that ER doctor said.  Perhaps I'm a little defensive in some areas, but she definitely pulled the rip cord way before I would have. 
      Because she loves me and cares for me, Jen inserted herself into the health logistics manager role.  I did not ask her to do this, she just did.  At he same time, I need everyone to know this, I really don't fall into the stereotypical helpless male role.  I can cook pretty darn good, (thanks dad) I do dishes and absolutely am a pretty good co-parent.  The point is, for whatever reason, being an independent, non-helpless guy,  I absolutely took a back seat when it came to managing the tidal wave of doctors appointments that were coming.  

I think everyone needs an advocate in a crisis. You can't physically be down and mentally start fighting battles. Tim was not in a great spot so I wanted him to just rest and get ready for the onslaught of appointments that we didn't even know was about to hit us. I dropped him off at the door for his colonoscopy in about a weeks turnaround from Vegas, and again with Covid protocol, could not go inside. Instead of sitting in my car going insane, I decided to go get a drive-through coffee and go back home and let the dogs out to kill time. They said this could take a couple of hours because they were behind. I remember where I was. I was standing at our back door watching our dogs in the yard and my phone rang. All I heard was sobbing on the other end, the doctor could barely get words out. "It's bad, it's really bad. There is a mass, we couldn't finish the scope. He needs surgery and to get this out as soon as possible, its blocking his GI track." I dropped to the floor. All the blood seemed to leave my body and I was weak. I couldn't walk, let alone drive. I called my mom and I don't know where she was, but she appeared within minutes and drove me right back to Tim. We waited in the car for him and he finally came out, huge smile, definitely drugged and no idea how his scan went. He was obviously confused at why I was distraught and why my mom was driving me and I'm direct so I just let it all out and said, "Tim you have a mass, its blocking the whole GI, they took a biopsy and we won't know for a few days, but they've called a GI surgeon because this has to come out immediately." In true fashion, I believe his response was something along the lines of, "I actually feel pretty great right now and would really like some pancakes or something."

I might have said that, I vaguely remember that. Much of this story will be Jen jogging my memory or me looking at her as we write this and me saying, "did I really say that or did that really happen?"  Well, turns out as you turn 40, maybe you should get a colonoscopy.  Since my buddy Alan had seen this same doctor before, he and I kept joking about the doctor that was going to do the procedure. She looked like a beautiful TV doctor who happened to do colonoscopies.  Neither of us got her number by the way. Honestly, I only kind of remember seeing her once in a previous appointment and then another time right before they knocked me out I said "Yall have fun" and I was out.  However, one of the things that struck me was when Jen told me my doctor called her crying to tell her that it all looked bad.  Seriously, who does that??  You are not allowed to be a doctor that sees human patients if you are not able to deliver difficult news to your loved ones.  What a great way to freak the crap out of your family.  I'm still moderately pissed about that.

Actually Tim, the age they say to get a colonoscopy is 45 or if you have symptoms. I wish everyone could start getting screened at 30, really. I also have looked into full body scanners to just start running them on everyone I know. I know there can be blood testing markers, but preventative screening could save a lot of lives for what my 2 cents are worth. Biopsy comes back clear, but with an asterisk.... they couldn't get a good sample. Off to surgery we go, regardless of what it is, it has to come out or he will continue to throw up because it's a blockage. All these doctors are networked and I like the GI surgeon so one week later, surgery is on. This is when Tim's diet becomes limited, lots of broth from my friend and Chef Dana. So much broth, we again made jokes we were running a brothel. My friends kept my spirits up, head high, and aggressively checked in on me. He had to eat limited since it was blocking everything almost completely so he could get some type of food through. Surgery day... guess what? They allowed one person to be in the waiting room. Finally! But, just me. I thought I would be ok. I had prayer happening everywhere. Lots of texts. Friends in Florida texting from a retreat. A close childhood friend, Katie, basically circling Marietta. Circles of small groups I didn't even know all linked to the family praying. I stopped getting updates, the nurses line went silent. I saw peoples status move to post op. Tim's bubble was not moving. Surgery was going way too long. I was starting to pace in a waiting room where they didn't allow pacing because you had to stay on your "X" that was social distanced from the other "X's". I look up and see Tim's surgeon. This was odd. No one else's surgeon was coming to the waiting room. "Mrs. Willis, can you come with me?" I remember walking, but I don't remember where we went. He jiggled a few doorknobs and rooms were locked so he sat in the middle of a hallway. "Mrs. Willis can you sit down with me?" He was kind, gentle, you could tell he loved his patients.  He started drawing a picture and everything I tried to look at was blurry. "Mrs. Willis your husband has Stage 4 Colon Cancer, here is where it has spread to." I still have his drawing, but I stopped watching him draw. I didn't record that conversation. I sat in the floor looking at my 200 unread text messages all asking, "Any updates on Tim?"