One Year Ago: The Clinical Trial

May 29th. I remember the day Jason started the clinical trial so vividly. I recall a lot about this time last year pretty vividly. It held a lot of hope. But it also held a lot of fear. I can tell you this, I never expected Jason to be dead 3 months later from the start of the clinical trial. I remember after Jason died someone said to me something like, well he was on a clinical trial so surely you knew the end was coming. No. Wrong. People say the dumbest shit. People also don’t understand cancer. I mean that seriously. I didn’t know much about cancer until Jason was diagnosed and through 18 months of aggressive colon cancer (not a normally aggressive cancer, by the way) I learned about cancer, Jason’s cancer, like drinking from a fire hose. No ones experience is the same. I think often about how many people like to say “well my so and so had colon cancer and they are fine” like that’s some sort of help to me. Or people who often wanted to give advice about the type of cancer someone has because they knew someone who went through something similar. It doesn’t work that way. There are so many factors to cancer that fall under the general terms of a specific type of cancer. If everyone’s cancer was the same, people likely wouldn’t be dying from cancer, because they would sure know more about how to cure it. I want to continue to bring awareness to what this was like. Because it was hard. You actually have to be relatively “healthy” to be on a clinical trial. So no, to the lady who ran her mouth at me for being surprised my husband was dead, Jason had strong blood work, and many other factors deeming him healthy enough to be apart of a clinical trial. I remember the day we sat on a video call with the trial doctor to learn more about the trial. This had to be the end of April. He was excited. Jason was the perfect candidate. I have the entire call recorded, which, honestly, if you are in the depths of health stuff, I do actually recommend. It is information overload and it never hurts to have that information to revisit. He says Jason is the perfect candidate and they have been searching since January, when the trial opened, for someone with his genetics. Many times, other members of the trial team talked about how there were so many genetics to Jason’s cancer that if this trial didn’t work that there would be many other options for him to try.

Jason was supposed to begin the trial in early May. It was a lot upfront. We went and did the orientation at the clinic, saw where we would be. They did a lot of bloodwork, again to confirm he qualifies to start the trial. We learned about the schedule. Jasons trial was a phase 1 trial. Meaning this is the first time the drug was being tested on humans. He was going to be the first person starting a specific dose of the drug. He was either the 4th or 5th person in the world to start the drug. Because he was the first person on the dose, they were going to put us up in a hotel room the night after they gave him the first dose, something about needing to be in a certain radius of the clinic. We were all situated to start, allh is bloodwork was great, and then they bumped us. Something about someone else starting that day and he could not start the same day as another person. Frustrating. Incredibly. All you want is for your person to get the treatment, that at this point in time you are thinking is going to save his life. I remember he got off the phone and you could just see the defeat in his face. I cried, I am sure. I hugged him. We would start one week later. Except one week later, Jason goes in for bloodwork and his liver enzymes have spiked. It is unclear why. But his liver enzymes have to be in a specific range due to the way the liver is involved in processing this specific drug. This was Friday, they keep us on the books for a Monday start. We go in, get situated and hope that the liver enzymes will be better. They improve, slightly, but the trial sponsor (different than the trial doctor locally) says no dice. So we leave the clinic defeated. It is the most painful experience. It continues to be the cancer rollercoaster of crushing hope and defeat. This delays the start of the trial until May 29th. On May 29th Jason will finally start the trial drug. A drug that is given orally 2x a day. I will cry tears of relief when the doctor comes in a tells us the start is a go. Thank God. Thank you God, please just save Jason. That is all I prayed for, over and over, begging for Jason to be ok. We spent 10 hours the first day in the clinic. A blood draw every hour. Limits and rules to when Jason could eat. Me I worked from the clinic, in-between conversations with nurses while Jason rested. We were confined in a little room with a chair and a hospital bed. We of course could leave, but there wasn’t really many places to go. Our favorite nurse was Natalia. She was cheery and kind and social. Jason, of course, was always kind to everyone and I think through all this I was always in awe with the way he made people smile, despite the circumstances. I remember one day he looked at me and said it’s not fair. Everyone else at this clinic is easily in their 60’s or 70’s. He was right. This was the furthest thing from fair, and he was absolutely the youngest patient by 20+ years. That in itself is frustrating. It fucking sucks. No one deserves this, but why the 37 year old, just looking to start his life? I could tell this bothered him, a lot. Rightly so of course. It bothered me too, always. In most every situation we were most always the youngest people in the room. Cancer fucking sucks. Cancer in your 30’s or under, sucks more. The system is not set up for people our age. That was made clear time and time again. We encountered this multiple times, but when it was most clear was when we would ask about conceiving while on treatment. I remember when the trial doctor said that typically isn’t a question he’s asked when people come on trial because they are past that point in their lives. Well fucking lucky them then! Huh! Seriously though. You will never convince me that cancer when you are younger is not just 1 million times worse than if you get it when you are old.

After the first day, we would go back and forth to the clinic, Jason would go by himself too so that I could keep working. For blood draws, check ins. Sometimes just to take the pills in front of someone and they’d take his blood and he could then leave. The first 3 cycles were demanding. We were at the clinic for multiple 10 hour days, and Jason probably 3-4 times a week. There was a point when one of the trial doctors was checking in and he talked about his excitement in trying this drug, that for Jason it should work, it has shown them in all the test cases on rats that it works, so really there is no reason it shouldn’t work in humans.

I recall one day when Jason went for a biopsy after a few cycles, this was apart of what the sponsor needed. He had a lymph node rather close to his skin, so it was easy to do a biopsy. He came home and I met him in the garage and he said the doctor who did the biopsy said that the tumors look to be shrinking! He said they are so much smaller than when he did the first one. He sobbed into my arms and I sobbed with him. Thank God. Thank you, God. I love you Jason. This was in the middle of June. Two months later, my person would be dead.

So to the people who act confused when I say I wasn’t ready for Jason to die, screw you. Actually though. Seriously. Screw you. Cancer is a brutal fucking rollercoaster and Jason’s was the type where you held on for dear life while you hung upside-down. We put every hope we had in the clinical trial and not a single health professional in any of those rooms was saying Jason’s end was near. There was hope beyond hope, every reason that this drug should work for him. Every reason that he was the perfect candidate. This trial was made for someone like him. You have to cling onto hope, because why would you not be hopeful when that is what you are told? I hate when people make comments like that women did, implying that I was in denial or not thinking straight. I was none of those things. I was a 30 year old woman hopeful that this drug would work, and if it didn’t work, we would try the next one, just like the doctors all said. If there wasn’t another trial at Sarah Cannon, there would be one at Anschutz. Dr Lieu said it in July. We will find the next one. Until, rapidly, Jason’s health changed. It changed like a fucking wrecking ball and came in and ruined our lives. It gave us no chance to try what’s next. Some people get told they have weeks to months left to live and they get an entire year. That was not Jason. Jason and I didn’t sit down with a single doctor that said you have weeks left to live. That wasn’t our version of cancer. It wasn’t long and drawn out like it is in the movies or in peoples heads. I still have whiplash from how quickly everything changed. From thinking the trial was working to cancer progressing rapidly, only in a matter of days.

It haunts me.
It breaks me.
Still.
Almost one year later.
Because it was fucking brutal.
It will never be fair.

In a world of cancer, anyone with cancer is dealt a shitty hand, but Jason, somehow every single card was stacked against him.
I remember Dr Lieu’s words. “This is not your fault. You have fought so hard, You did everything Science had to offer.”

Why in a world where studies are progressing rapidly and people are surviving cancer was it not my husband?
Why was it not Jason who got lucky?
Why.
Why with the genetics in Jason’s bloodline, with those who have not done all the right prevention, all the right screening, the genetic testing. Why did it have to be Jason?

I am physically sick most days at the people in Jason’s family who, while he was still alive, told him this was his choice.
This is no ones choice.
It sure as hell wasn’t Jason’s.
To even allow those words to leave your mouth, to even think such a thing, you have to wrong in the head. Those conversations, the blame, it haunts me. Sickens me. Boils my blood.
Jason did not choose this.
Jason had no choice in the matter.
He fought like hell, he tried to live, he did everything in his power to beat cancer.

Why did it have to be Jason? Why was he the unlucky one?