is may be the hardest thing I’ve ever had to write.
People have asked so many questions about Trey. And most of what we told people was that he had colon cancer and left it there. Yes, he did have cancer in his colon...it’s a lot to explain.
As you have read - We found out we had to get to an oncologist on a Friday night-August 10, 2018 - in the emergency room.
Trey wanted no one to know we were going to the hospital
- I just now realized that runs in the family...We were working on a Saturday years ago-about to head to see a movie that I had already bought tickets for, and Trey asked me to call his dad for something...Talking to Tommy and he casually says well we are here at the hospital getting Brenda looked over....WHAT? Told Trey, we were gone in like 5 minutes. I called Jennifer, and asked if she could use the tickets, Trey was livid...
But, here we were years later and the first thing he says is ‘Don’t worry anyone’ the very first thing they said when we got there is they were going to be scanning his gallbladder. I sat in the waiting room, and we all know how well I handle pressure...not well.
I called Brenda, told her we were there, and they were looking at Treys gallbladder-I’d let her know if they were going to do surgery.
I was in a panic, I didn’t know ‘anything about birthin no babies’. I remember trying to give them all of Treys information, and giving them my insurance card three times - and trying to pay with my Lowe’s card. I was a mess. I had to go back and get Treys wallet to get his card. He was just fine as can be. Talking to everyone, asking about their day, and apologizing he had to be there.
Needless to say no surgery happened. I told Trey on the way out that I had called his mom, and he needed to call her back, cause I sure as shit wasn’t talking to no one. He was mad, and I don’t have a clue what he said. Probably(in my best carol burnett voice as Eunice on mamas family) “oh no ma’am. Thomas just panics. Don’t you worry yourself...they just gave me some pain meds and now you go on back to bed...”
Trey never wanted to cause worry, or make waves - especially in that way. Ever.
Trey was diagnosed with Colon Cancer, with a NeuroEndocrine differentiation...look that one up...don’t. It’s so confusing, and a total mess. It’s a cancer that like 1 in 100,000 people get, and then like only 1/3 of that 1/100,000 people have what is called a low grade NET(neuroendocrine tumor) tumor....I think. Anyhow, it’s a very uncommon tumor. It’s called carcinoid NET. There are many many many MANY types of this NET stuff. And as Trey said...he hit the jackpot. Trey had a very very slow growing Carcinoid NET tumor. It took the drs probably a year to find where it was. For the longest time all we knew what colon cancer with a NET differentiation.
Forgive me, it was his colon, liver, and POSSIBLY in the lymph system...he was stage 4 from the very beginning. That was the hardest thing to hear. The absolute worst.
I think I lost it pretty quick, Trey did not. I think that’s when he said he had hit the jackpot, and I know he said ‘go big or go home’. He said he had one question, and that was life expectancy. At that-he did shed tears. And Dr Orcutt said his goal was 5-10 years.
Trey said great, let’s shoot for 15.
There are always disclaimers, and there was a big one, or two. Dr Orcutt explained that ALL therapy was palliative(a word I have grown to hate), not curative. Every single time a new therapy started there was always that page that had to be signed...And Trey had SO many different therapies. A lot.
The biggest disclaimer was that Trey had the slow growing kind of NET. That also meant it would be harder to hit, and if it ever ‘turned on’ there would be no stopping it.
After his first treatment cycle (I’m totally spelling these wrong, but I don’t care ‘eutopiside’ and ‘carboplatin’ we re- biopsied, and the NET differentiation didn’t show up...so Maybe, just maybe that first reading was wrong. This is when things got a little weird. Treat for basic colon cancer, or stick with the plan for NET?
I personally was like whichever is the more aggressive approach go for it, where do I sign the papers? ***it was always my thought that they didn’t know Trey, and stage 4 didn’t mean diddly squat, he was going to beat this. At every single drs appointment I did not hold back, whatever was the hardest, most aggressive thing - do it.
I would basically yell at Trey when he would say ‘oh but the side effects’(turning red, losing his hair, throwing up)...”I don’t care if you are a bald sea sick lobster for a year-if it helps you are doing it”. After course, after course of treatments I didn’t care. I kept telling him Trey six months of ‘hell’ is nothing. You are doing it.
He never wanted to be a burden, he never wanted his routine to change. He wanted to be able to go to the movies, and be a person. He never wanted to be strapped to the bed, or in the bathroom puking.
I don’t even know how many times he told me that he would understand if I needed to leave. That was always a pleasant conversation...no one has EVER seen my eyes roll so hard.
‘Oh yeah Trey that’s brilliant. I’m just gonna walk away here, that wouldn’t bother me at all. Who’s gonna take care of you? Who’s gonna kick your ass out of bed everyday? Who’s gonna tell you how it’s done?’
We would fight over it until he would laugh, and say ‘it’s always gotta be your way...Everyone’s always saying how ‘nice, and quiet’ Thomas is...they don’t have a clue.’
I am nice, and quiet...but shits gotta get done...and the nice stops. Real quick.
Surgery was never an option because of the spread of cancer. They could only do one surgery at a time, before and after surgery there was no treatment. So for at least 6 months nothing. That wasn’t an option anyone wanted to take.
We were going through treatments and me being me I’d go into every appointment with a list of possible things I found on the Internet. Even though I was told to stay away from the internet. The drs always listened to me, and everything I would suggest they would tell me why that wouldn’t work...in detail. Down to the DNA testing that we had had done on Trey tumor. It was endless, and I never stopped looking. I didn’t want to run out of options. I was in constant fear of that.
Trey was always the trooper, and always glad to see everyone. Never complained.
Sorry this is long.
At Treys third restaging, which would have been at just a little over a year the NET thing showed up again. The dr described that in the previous biopsy they could have pulled a sample from the one spot that had no NET cells. So it was good that we had continued with NET treatment. Time for a ton of scans.
They found the ‘origin’ tumor. In the large intestine. They only found it because an area of his intestine had grown like 1mm. It was minimal.
I said ‘cut it out!’
That doesn’t fix anything.
***this is Thomas’ very elementary explanation of a VERY complicated thing.....Basically what a NET tumor(I know that’s redundant...but I can’t just say NET)does is create hormones that go into the endocrine system. These hormones are different *note differentiation* they carry the cancer cells, but they are dormant...and when those cells ‘turn on’ things go awry.
So that really explains a lot as to why did Treys cancer go unnoticed. Literally two weeks before the hospital visit he had had a physical. 100% tip top shape. He had a VERY small area in his colon that had basic colon cancer...so small that it didn’t show up in any blood work. The only way they found it was from the scan for his gallbladder, that and his shoulder pain, which turned out to be referred pain from his liver/intestine showing up in his shoulder.
All throughout treatment Treys bloodwork was perfect. His cancer numbers only went up a very few times. I honestly felt like we were winning. All of the restagings and lab work was good.
This is a good place for a brief, or not so brief intermission.
...some random pictures...
We were leaving for Christmas...Trey was excited about the RV. It was time for restaging...Trey asked to do it when we got back. It was scheduled for January 10th. A week later than it was supposed to be. Dr Orcutt said ‘oh it’s just a week. Enjoy your trip.’
We got back into Charleston just in time for that. Blood work totally clean. Everything looked great. We would get the results/plan next week.
Got the RV returned. Nice weekend at home. Monday I had the stroke.
The oncologist office called Trey on the 16th to schedule him to come in for his restaging appointment. He explained to them that it was not a good time, I was in ICU.
Could he please call them back.
Trey never called them back.
On the 17th Dr Orcutt called him and told him it was imperative he comes in ASAP. Trey told him what was going on, and he just couldn’t do anything right that second. He was very anxious and agitated at what to do. Dr Orcutt said to him ‘Trey if Thomas was awake at all right now he would tell you to get the bleep to the Dr., now I can see you today, Monday, and Tuesday in mt pleasant, or Wednesday in west Ashley. Which is it?’
At that point all Trey said is ‘I have to be here if he wakes up, and I need to see him go home’ they scheduled to meet Wednesday in west Ashley.
Trey went alone, April drove him.
Dr Orcutt told me that he couldn’t tell him anything over the phone, but that Trey knew. Trey had said ‘it’s turned on hasn’t it’
Trey left April In the car, and talked to the drs alone. It had turned on sometime in the past three months, there was no way to be certain. Trey didn’t want anyone to know. It was to be carry on like normal, whoever came to the office with him. And whatever he had to do to see me home, that’s what he wanted.
Dr Orcutt promised that they would do everything that they could, and that he needed to stay as calm as possible.
Trey rode with April down to get his blood drawn at St Francis after that. She knew nothing. Trey didn’t act any different. The only difference is he wanted McDonalds.
Trey always craved McDonald’s after bad news, or a really tough time. That’s the only time he ever wanted it.
Knowing that he held that in the entire time hurts. The amount of guilt that I feel for not being there for him during all of that is incredible. Out of every sorrow that I have over the stroke happening not being there for Trey overshadows everything.
Orcutt told me that he felt like Trey was about at the point where he was done with Chemo anyhow - just from their meeting on the 22nd. Trey had been on Two years straight of treatments, and he was tired. But, all he wanted was to see me walk again, and then get out of the hospital. He told Dr Orcutt that I had given up everything for the last two years taking care of him...He had to make sure I was going to be okay.
Now, Looking back on what I can remember in the hospital...I see it. When it was just Trey and I in the room, and I’d ask about treatments, or anything...it was immediately deflect, change subject, everything’s fine. Normal me would have said shut up, tell me. But I was not normal me. I was in such a mess, all I wanted was Trey there. And, if he wasn’t there I wanted to know where he was. Call Trey. Call Benton, benton will have to drive Trey. I lost it quite a few times, and now I feel so selfish.
Time was going so slow. I remember asking Brenda one day where Trey was 17,000 times. I didn’t care about anything else. I needed to know where he was.
I remember all the times he just wanted to sit in the chair next to me and hold my hand. I remember us both crying and him saying no matter what It would be okay. Everytime he would cry he would just say he was so proud of me, and to keep going. Everything’s going to be okay started as soon as I woke up, and one of the very last things he said to me.
Trey fought it all the way to the end.
The Monday after I got out of the hospital we went to see Dr Orcutt. Everyone was excited to see me, but the Dr...He said that as soon as he walked in the room, and saw me sitting there, clueless, that Trey needed to be admitted. He did not want me sitting at home with Trey - and anything happen. Still, I was clueless, Trey would meet with the drs way before I would get there. Trey wanted me gone - Not in the hospital. Being out of my mind I was like okay...I’m going to work. And I let myself believe everything was okay...Trey was just getting rehydrated.
I don’t even remember what it was. But something was said in the hospital...or a look on Treys face.
Something hit me.
And I knew.
I don’t remember anything after that. I think it was the day that I had gotten Treys glasses fixed. I was so proud of them. I was showing him - oblivious to what was going on. Trey had been in the room talking to His parents. I don’t know if I heard something. I don’t know. There was something, and I lost it. I think T&B were there. I don’t know for sure. I just know I couldn’t walk, I couldn’t stand...I was beyond upset, and I felt like everyone just wanted me to leave...for good reason...but, I know I started feeling like I was being pushed out.
Everything in my head had been through a blender. It had finally calmed down, and now it was like someone had hit pulsate. The next few weeks are a total and complete blur.
All I remember for absolutely certain is...
‘Everything’s gonna be okay’