Eight Months. I need Jason

The eighth month mark approaches. In two days it will be April 17th, eight months since Jason took his last breaths. One year ago our worlds were spinning. We had finally learned that the immunotherapy, that was working SO well to kill Jason’s cancer, was no longer working. The slow burn of is it working, is it not, to get to this decision was yet another painful roller coaster of hope and defeat. It was a whirlwind of change in the course of a few weeks. At the beginning of April Jason’s CEA went up again. He received treatment that day but another scan was scheduled for the following week. That scan showed two new lymph nodes near Jason’s groin. It was uncertain at the time if the lymph nodes were cancer or a flare, caused by the immunotherapy working. So we waited another week. We were sitting at the infusion lab waiting for Jason’s appointment, and Dr Lentz called him. Jason just stood up. He said my numbers doubled, we are not doing treatment today. So we left. It felt so confusing. What are we doing then? What is the plan? What is happening? There was so much going on. It makes my head spin thinking about it. Thinking about Jason and myself just trying to hold on. The next steps were to find another treatment. It was between Chemotherapy and a clinical trial. Chemo was a backup option, because it was already the third line of defensive therapy for Jason, and as I understand it, not likely to be successful given Jason’s cancer DNA and history with the first line of defense chemo. At this point in time we were looking to find Jason a clinical trial. Jason’s team at Anschutz was working with Sarah Cannon, we were waiting. Dr Lentz was suggesting chemo be done as a bridge if the trial was going to take a while to start. We thought we’d start the trial in early May. That didn’t happen. I often wonder what could be different if Jason has received that Chemo as a bridge to stall things. Would’ve it worked? Would’ve the trial then worked? Why didn’t it work? I remember Jasons CEA went down slightly the following appointment, the one I talk about below. I struggle to not ask why. Why did it go down? Why did no one talk more about this?
I have so many questions why.

It was almost exactly this time last year (I think April 23rd) we sat in Dr. Lentz’s office and he asked Jason if Jason wanted to hear the statistics of where we were at. This is the first time anyone had approached this conversation. Jason’s cancer had now show signs of growth in his groin. This was the first real definitive sign of growth outside of his abdomen. Previously, in October, there was something possible by his clavicle, but that was not definitive, or at least that’s how I understood it. Dr. Lentz said to Jason that from this point on, on average people have 1-2 years to live. He said that is an average. You could live more, you could live less. He talked about great hope in the clinical trial for Jason. He said there is a lot of new medicine for people like you, I have hope. The thing you come to know about oncologists is that they don’t talk about hope and positive unless they really mean it. They are not there to make you feel good, or sugar coat it. If someone tells you there is hope, you believe them. You believe them for yourself and you believe them for the fact that you know, they are not in the business of hope. I remember sitting there crying. Jason was quiet. Dr Lentz got me a box of tissues and I just squeezed Jason’s hand.

April was a doozy last year in a lot of ways. We were also fighting a denial of Long term disability for Jason, trying to find ways to keep him under his company’s umbrella as his Paid Family Leave was about to end. My company was letting people go, a lot of change was happening in my own workplace, and truthfully I paid little attention to it. I was living my own hell. All I was focused on was trying to help Jason. We were having massive issues with Jason’s parents. The worst it had ever been. It got to the point where Jason made the decision to block them, because they were not able to respect his boundaries he was trying to set. A decision that was supported in therapy with his palliative care team. He asked that I block them too. Which I did. It brought a lot of peace for a very short period of time. But as Jason’s cancer changed or things got harder, delays in the clinical trial, treatment changes, etc. He slowly let them back in, hoping they would change. Spoiler alert, they didn’t. They only got worse. They blamed me for Jason’s “lack of communication” or stated that “his wife”, yes not even using my name, was inclined to respond to them when he wouldn’t. Even though he told them both very clearly that he was blocking them and he asked me to as well, and asked them to stay away from me and my mom, as between the two of us we already had enough stress on our plates trying to help save him. Through it all I can tell you one thing I know to be true, they didn’t seem to care about me. I would beg to say they likely never did. But it became apparent in the way the only time they’d speak to me was when they needed something from Jason and he wasn’t responding. I was never asked “how are you, Lauren”, it was usually only “we need an update on Jason.” These texts would, of course, come at a bad time, in the middle of my work day, derail a weekend. It all became a demand and a lot for me to hold on top of everything else. It was all too much. There was so much going on and also not enough all at once. For every single day that Jason didn’t get treatment it felt like the cancer was just growing. Of course I don’t actually know if that was true or not, as scans remained relatively stable from mid April to May to June.

The day we learned that Jason’s cancer was progressing on the immunotherapy I called the GYN and made an appointment to remove my IUD. I asked for the soonest available appointment, I didn’t care who was going to do it. Jason and I really wanted to start a family. It had been our plan to start trying in January of 2025. That was our discussion post chemotherapy and the wedding. Though, Jason really wanted to be a dad immediately. He would’ve started trying on the honeymoon. Heck, he would’ve broken the mold and started trying whenever, to be honest. I have so much in my heart and mind on this topic. I think it’s important it’s another post. We wanted a family so badly. But the restrictions of natural conception with all the drugs he had been taking was hard to manage. During Chemo it was a hard no to any type of conception. Immunotherapy was different, no one had an answer. It was too new of a drug, and the people receiving it are not trying to conceive. They are all older. It was no reassuring, the uncertainty around it all. On top of everything we were navigating, this was just another added, and very painful layer of cancer. In short, as soon as I heard Jason may go on chemo again, my mind immediately thought we might not get this chance again.

April last year was a different kind of hell. It was confusing, terrifying, and it was hard. It was more than hard. I think about the days that we would leave Anschutz with bad news or no treatment. The car rides home would be quiet. We would listen to our songs, and I think about the tears we both cried. We’d come home and I would get Nora out and Jason would ask if he could go for a drive. He tried to clear his head that way. I think about how much he probably didn’t say that he was feeling. Not that he was intentionally trying to keep me out, that’s just who he was. We never really talked much about the conversation with Dr Lentz about 1-2 years left to live and what that meant. We were so focused on the trial and getting him to the next treatment. So focused on trying to save him. We were trying to survive. At that point in time Jason did switch his mindset a little bit, we talked about needing to write a will (which never ended up happening). He was focused on making sure his assets were in order. Which I appreciate and which is not an easy task to come to terms with. We talked about the “fuck it” button, but we didn’t think we were there yet. We thought there was so much more hope and some much more to come. We were still planning that Jason would remain relatively healthy through the next months. Through it all, Jason’s focus was me. He was just so worried about me. That was what was the most apparent. “I just need Lauren to be Ok”.

My mind and body count the months from August 17th. This is a hard line in the sand for me. When life became totally broken. Though, there is a lot of broken ahead of this date, a lot of hell that consumes me. Nothing, especially in the last few months of Jason’s life was normal. Nothing was normal in the real sense of normal for a 30-something newly married couple in October of 2024 when Jason’s cancer reoccured. Nothing was normal for a 30-something newly engaged couple in February of 2024 when Jason was diagnosed with cancer. It feels so hard to accept that normal hasn’t really existed in my world for over 2 years now. My mind is doing a great job right now of blocking out the good that happened in that period of time and focusing on the bad. I think, trying to process the bad? It feels all consuming and it has me reaching for what life was like when things were good. It has me questioning how a normal evening went, what a good day felt like. It feels so fucking far away sometimes. My mind and heart are grasping to feel close to something good. I know in my heart there was a lot of good, because life with Jason was good. But it also wasn’t all good. Because cancer is fucking hard. The adrenaline we were running on for 18 months was more than I think most people can understand. It just took so damn much. I hate seeing it that way. But Jason’s death was not only when life became totally broken, it was when Jason’s cancer journey ended. When the rush to save him, the energy to survive, the clinging to hope, it all came to a crashing halt. There are no more doctor’s appointments, no more hospitals, no more conversations about prescriptions, planning every single detail around treatment. The all consuming that was cancer ended. It was just that, it was all my energy and all my time. Along with Jason, it is all gone. And somehow life then just becomes “normal”, mundane, none of these things. But it is missing the most important piece, that is a piece of me. That piece is Jason. He is the piece I need to be ok. I need him to feel safe, to feel seen, to feel loved. To feel normal. Because even when life was anything but normal, I somehow felt ok when Jason was by my side. He was the good, the beauty, the joy that lived next to cancer. He made every hospital visit, every long Friday in the infusion lab worth it. It never crossed my mind to be anywhere else, because I was with him.

All of the things that made our lives stressful are gone. Cancer is gone. But it sits in the background because it took everything from me. It took Jason. Life has returned to this version of “normal” in a way, the one that the 30-something newly married couple should’ve had. The one where all I have on my plate is to go to work, make plans with friends, walk the dog, travel, spend time with family and friends. Think forward. When Jason was sick, we had none of that. We woke up simply trying to survive, fight cancer, and if we were lucky, find a way to squeeze in the simplicity’s that should’ve made life normal. This is its own type of whiplash, trauma. All of a sudden I have all this time. But I don’t have Jason.

I am realizing that none of this, life, is about any of those normal things that I so desperately longed for while we were fighting for his life. It is about the people. In my case, my person. Jason. I didn’t need life to be normal for it to be good. I needed Jason.

Life was hell and it was still good, far better than it is now, because I had Jason.

I need Jason. I need Jason now more than ever. I need him to tell me everything is going to be ok. To hold me when I’m crying. To just hold me at all. To make me smile and laugh, even when my world is breaking. I need him. I need Jason on the good days to share in joy with. I need to tell him about my day at work. I need to tell him about my project coming to an end. I need him to plan what’s next. I need him by my side to watch HGTV and critique the designs. I need him to watch sports with, to talk about what’s happening. I need him sitting next to me and Nora on the couch, to say nothing, just to simply be here with us. I need him for when I don’t want to eat leftovers to drive with me to get take out and to hold my hand in the car. I need to text him during the day just because. I need to see his name across my phone checking in. I need to talk to him about what’s for dinner.

I don’t just want those things, I need them. Because they made up my entire life and my entire world. Every second of my reality. My sense of what life was and should be. My place of safety and calm. My future and everything it was supposed to be. I need Jason in every aspect of life, because he wasn’t just my husband, he was my best friend, he was my life, and everything in my life made sense because of him.

I think about what Jason needed at the end of his life, “I just need Lauren to be ok.”, and I still don’t know how to be ok in a world without him.