Chapter 2

  One of the things I have learned after having cancer last year was that from the easiest things in life to some of the most difficult challenges all start by just showing up.  Just show up.  Want a new job, just show up for that interview.  Want to learn a new skill, just show up the class you signed up for.  Want to start going to church again... just show up.  And so, want to fight cancer?  Make sure you show up to surgery.  Jen and I woke up that morning, got the kids ready for school, made lunches, and told them that we were going to get whatever is inside of me out.  Jen dropped me off that morning while it was still dark.  I have a selfie of myself with my covid mask on, alone in the waiting room that I sent to Jen while I was waiting to be called back.  Just being dumb, but also a little nervous.  So many things of last year have blurred together and its hard to separate this pre-op with the 6 others that were going to follow.  The drugs they give you before you get formally knocked out are pretty legit.  You relax in a way that everything just is floating by.  It is at this point that I begin to lose solid memories of what happened.

As a mom, I've tried really hard to give our kids normalcy. After adopting Zach, structure, routines, and intentionality became major foundational blocks for our whole family. We had the framework, but a child with special needs requires a great system. I wanted that morning to be normal so the kids wouldn't freak out. We have always been straightforward with them and told them that Tim had a blockage and we were going to get it out. And when they had the same questions we did, I told them we didn't know, but would have answers soon. It's difficult with older children and you owe them honesty. We found being direct helped them come to us with questions, not go to the internet. I think I waited in Wellstar that day for 6-8 hours. After the surgeon gave me the diagnosis, he told me he would call when Tim got settled into his post-op room. I was way overdue with some phone calls. I walked outside to finally take a deep breath and I went and sat in my car. The first call was to his parents, second was to mine, and then I sent out a few texts until I could get the bandwidth to have another conversation. Tim's parents were immediately positive that Tim was going to beat this and were they really sure this is what it was. I get that because our defense is, this must be wrong, surely its not Stage IV. My parents were very quiet. With virtually no information about treatment or a plan, it was difficult to tell them all this very heavy news. Especially when Stage 4C cancer is the last stage you can have. I just wanted to tell them and hang up because I couldn't answer any of their questions. Within minutes, my friend Katie showed up and my sister had somehow also gotten herself on the hospital floor where Tim was going to be taken to. She was already talking to nurses, getting permission for our kids to come up, and rattling off how we were going to get this done. Katie started talking to me about chemo, surgery, doctors, where to go, where not to go, and how she had helped her husband beat his aggressive cancer over and over and that it was time to be the bulldog. It was immediately easier to divert all of my attention to a plan, the fight, next steps. YES, lets fight this and not dwell here. Let's blow up the phones and not think about how in the literal hell did Tim have so much cancer inside his body. He's the healthiest person in our family. Active, slim and muscular, eats healthy, great routines, exercises, and running a company while ongoing construction. How could he be sick? When did this happen? What red flags did we miss? There were no logical answers. This was a complete punch in the gut and while we were all saving Tim.... I remembered Tim didn't even know he had cancer. I decided when he was coherent enough to have a conversation and ask, I would tell him. They told me a team would be in at 6am to meet with him and I didn't want him ambushed. I was finally taken to his room and he immediately asked, "What was it?" I knew he heard me, but had no idea the full weight because he didn't seem to really hear it. He was on so many drugs. He told me he felt great and was going to go back to sleep. And in that moment I knew I wasn't going to sleep for a very long time and the war was on. 

The very next thing I remember is that I'm in a dark room and I see Jen's parents by the door sneaking a look at me.  I'm in and out, but honestly, I remember so little.  Based off what Jen told me, I barely remember her coming in and telling me I have cancer.  It is interesting that I do remember the doctor coming in and talking to us about my new condition.  I remember not having a lot of emotions, I wasn't really even sad or scared.  My mind never even entertained the idea that I could die.  Other than flashes of cognizant memory, I would go back to the haze.  I even forgot I was in the hospital for days.  I couldn't tell you how many people visited, and which family members stopped in.   However,  I do remember our good friend Maggie came by and I thought it would be really funny if someone brought be the loneliest, saddest single balloon that was half deflated and tied it to my bed.  All these other people had huge balloon bouquets and flowers, and then you come to my room and I have this dumb thing tied to my bed.  It was stupid, but really funny at the same time. As we are writing this, I am reading back through Jens comments above and even my pictures in my phone to jog my memory.  The hospital stay was a blurr, but one of the things that jogged my memory is seeing pictures of my incomplete deck on my house when I came back home.  I worked so hard to get it finished before everything, but no such luck.  And so, during my recovery, I was told I was only allowed to lift objects under 10 pounds.  Well, I learned that my impact drill weights less than 10 lb's.  So does a pressure treated 2x4.  I literally weighed a 2x4 on a scale so when Jen would inevitably yell at me for doing more than I should be doing I could say that I'm allowed to because its less than 10lbs.  So there.  Some days, I would literally only put in like 4 screws or cut and install one board.  My kids would set up my miter saw and pick up heavier boards and put them in place.  But we never stopped moving that ball forward.  Not sure if it was symbolic to me or why I kept pushing this project forward.  Perhaps I kind of saw this as regardless what was going on, we were going to keep pushing life forward even if it was one board and one screw at a time.

Right before I took Tim home, I think we stayed around 5 days, I got a phone call from a long time friend named Ashley. It was a rare moment when I could talk so I answered. She was exactly who I needed to talk to in that moment and here's why. I had spent all day at the hospital on the phones. Tim needed a very specialized plan for where his cancer had gone to treat it. It had basically been let loose everywhere in his abdomen and had planted and started growing. He needed aggressive and immediate treatment, but Emory could not see him until 8-12 weeks. Emory had been bought, there was a high G.I. Department turnover, and they understood the severity of my situation, but that was the deal. I was also frustrated because since he had a massive surgery and 30 staples down the front, the earliest I was told that he could be seen was 4 weeks due to recovery. No way I was waiting until 8-12, we were going somewhere at the 4 week mark. So, my phone rings and I talk to Ashley. Her dad is a doctor in Corpus Christi, Texas and her parents are the best people you know. She said, Doc says get on a plane and go to MDAnderson immediately, he has a connection with a board member and she's going to call you. I am speechless. Still trying to process Tim got sick, surgery, cancer, and now Texas. Things were starting to get overwhelming. I tell her he has a minimum of 4 weeks and she said then get out there at 4 weeks and 1 day. I finished packing up our room trying to figure out how we were going to drop everything and go be in Texas logistically. Waves of complete anxiety would come over me and there was no end in sight. We were in a crisis. We had a business that was about to hit its busiest season of the year, 3 teenagers with very busy schedules and not to mention the one with special needs that requires a lot. How in the world were we going to do this. I felt chest pain at times and was doing everything I could and it wasn't enough, I knew I needed medicine. All I have ever taken medication-wise is my daily thyroid medication, no other experience, but my doctor decides to call in Xanax and I'm sure I wasn't listening and so all I heard was "Take as needed." What I needed was this higher dose every day so I completely never asked or thought it would be a problem. I am embarrassed that I had no idea, but also maybe glad I didn't even know you aren't supposed to take it like that. I genuinely felt every day in the beginning like I was drowning and had to make huge medical decisions for my husband while caring for him and running our life. One morning, I pulled in the driveway and never got out of the car. I spoke to a good friend, Dan, who educated me on basically the entire healthcare system and how to play this. People like Dan were so generous with their time to just talk to me, just listen, and provide whatever answers or direction they could.  When you have cancer, you aren't talking about deductibles anymore, this is next level.  I spent 7 days straight on the phone when we got home and through that initial contact from my friend, I got records transferred, insurance to cover it, flights, hotels, appointments booked, and Tim was accepted into MDAnderson at the 4 week and 1 day mark. Wheels up. 

My sense of urgency and Jen's sense of urgency seemed to be at different places.  She absolutely allowed me to focus on recovering and to help keep our company going.  But she saw the whole chess board, thinking many moves out.  Many appointments were made that I knew nothing of.  She went into a go-mode that I have not seen before, and that is saying a lot! I did not however, realize either the impact or that she was taking Xanax every day, but she most certainly was triaging our situation.  I'd come in our bedroom after several hours and saw calendars, notebooks and insurance paperwork everywhere.  At the least, I knew that our locally available medical resources were not going to cut it and we would be going on a trip.  After hearing the news, a long time friend and mentor called and said, "I'm not sure if you need a plane ticket or money or whatever, but I don't have a lot of friends and I'm not planning on losing one to to cancer.  You need to leave Atlanta and head to MD Anderson in Houston and start there."   Thanks Jim.  That was well received.

Our kids took the news as best as they could. We told them it was cancer, but we were going to seek out the best treatment in the country and beat this. For the days that followed the hospital, there were many difficult questions and scenarios we faced trying to communicate with our loved ones and have our affairs in order as we started to digest our future and possible outcomes. Numb is the best word we can use to describe where we were and having to deal with the whirlwind of emotions around us was very hard. The week in the hospital was our 18th wedding anniversary and we were supposed to be trekking Machu Picchu. Oh, how our plans can change on a dime. It was a whiplash of a situation and I remember waking up every day and asking God to miraculously work through me and to do whatever it would take for my husband to live. This was definitely not what our anniversary was supposed to look like.

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?"