u/ShartFlex

I just wanted to share bit of our journey. I know I was scrambling for information when she was first diagnosed at 40 years old in December of 2019, and I remember being terrified and scouring the internet for months. My wife was MGMT methylation-positive, IDH wildtype. Over the years she had 5 or 6 recurrences. Total of 4 craniotomies, 2 clinical trials, 2 radiation regimens. She took Temodar for the initial SoC for around 8 months. After that she took an NTRK inhibitor (larotrectinib) for a super rare gene mutation that is present in a very small number of gliomas. She took a metronomic dosage of Temodar again starting in 2024 that kept everything in check for around 1.5 years. She lost some peripheral vision and had a lot of mobility issues that last couple years but she always kept going. Not a single impact to her cognition right up until the last month in hospice. I am so grateful to her doctors and all the people that helped her last so long, to have the chance to get to know her kids and for them get to know their mom before she left us. Melissa never gave up and her glass was always half full. I know it's easier said than done, but if you are in Melissa's shoes or you are a caretaker for a Melissa of your own. . .Don't give up. Keep on living as best you can. Don't let your cancer define you. Don't let it change who you are.

My wife was diagnosed with brain cancer at the end of 2019 at age 40 and she lost her battle at the end of June, just a few weeks ago. So I spent over 6 years knowing how this was likely going to play out.

But I can't help but wonder, maybe if someone has been in a similar situation. . .I feel like when talking to people they expect me to be all fucked up right now. I'm sad, there's a sadness from the permanence of my wife being gone that's going to be with me a long time, probably forever. I have emotional moments- waves almost- and cry at least once a day, often more. But I feel like in a way I already went through a lot of stages of grief while she was still here. My wife and I even talked about this- like I had deep philosophical discussions with the very person who died about her death before it happened. I experienced all of the anger, the grief, just a lot of the emotions that people don't usually experience until after their loved one is actually gone. She helped me through it, she helped me to become a better man and be able to survive the end. And people that have experienced the loss of a loved one tell me it's coming- it already came. Years ago. I was fucked up for years, as my wife would attest. I'm just curious if anyone knows what I am talking about. I had this discussion with a coworker about what would be worse, having 6 years to live with someone that was likely going to die from their diagnosis, or ripping off the bandaid and having it happen all at once as my coworker experienced with the loss of her husband. As difficult as the last 6 years were, I don't think I would have traded it for anything.

**edit to add- I just wanted to say thank you to each and every person who took the time to reply. I read every word in every response and it’s really been helpful to understand that I am having some of the same thoughts and worries and feelings that many others have had. That even though we didn’t all have the same circumstances on our journey, we’ve all been through some shit, and we all have a void in our lives now that many of us are still working through. I definitely feel a little less alone in all this than I did this morning. Thank you and I hope you all continue to heal.