Today marks a year since I started writing this blog. I made this blog with the intention of keeping everyone informed about my situation and hopefully give some insight into what it is like to go through this journey. While I haven’t kept up with writing as much as I hoped, I am happy I have created this platform to digest my thoughts and share them with others.
This past week I had my MRI and appointment with my oncologist, Dr. Wen. It was my first appointment since finishing treatment last month. The MRI showed that everything is “stable.” This means that there has been no change in the tumor’s size, so we can now transition from treatment to monitoring every 3 months.
“Stable” is an odd and emotionally conflicting word. It is not joyous like hearing the words “remission” or “cured,” but is more mundane…the status quo. Yet in my situation, and often in the world of brain tumors, “stable” is the most I can hope for. The past 8 months of chemotherapy was meant to stop any further growth of the tumor, and since my tumor is inoperable, keeping it dormant is the best case scenario.
This doesn’t mean that my MRI results are not worth being happy about. Over the past year I have immersed myself within the brain tumor community, and sadly some of those people have recently passed away. I recognize how lucky I am that my own circumstance is “stable,” and to not take that for granted.
I still have trouble though celebrating this moment. Given the slow-growing nature of my tumor, we wouldn’t expect to see any changes (good or bad) for another year or two, so maybe it is that uncertainty that bothers me. Perhaps the issue is that I know there will never truly be an end point to my journey where I can leave my cancer behind because the reality is that my brain cancer has turned into a lifelong illness…a chronic disease to be managed. This idea of “living” with brain cancer is something I hope to write more about in the future as I am unsure what that truly means both in the short and long-term.
What I am incredibly happy about is finally being done with treatment. After 6 weeks of a mix of proton radiation and chemo, followed by another 8 months of chemo, I am ready to regain control over my body and life. The past year of treatment was a lot harder than I expected, particularly the fatigue and weakness I experienced. I am looking forward to regaining my energy, and finally feeling like myself again. To start building back my strength and live a typical 24-year old life.
To be honest though, I am a bit worried about making this transition. Just a week after finishing my last cycle of chemo, I went abroad to Paris for the U.N. climate change negotiations. While I have a lot to say about the negotiations (…that’s for a different blog post), the experience was rather eye-opening on a different level, particularly related to how starkly different my life has been over the past year. It was the first time I was working a full schedule, and even the first time I went out at night dancing since I left Bali back in November, 2014.
In some ways over the past year, I have existed in a completely different world. Now that I am finally able to step out of that world, I am feeling a bit culture shocked. To be able to start focusing more on my future, to be able to start dating, to be able to get a job, to be able to go out at night, to be able to simply start working out again…those are just a few of the many things I look forward to. Yet even with the excitement of those possibilities it is pretty overwhelming, particularly as it exists under the umbrella of uncertainty.
But I am ready to start picking up the pieces. As I do this, I need to keep in mind that it will be an ongoing process. Even though my treatment is over, my life won’t immediately return to the way it was before, nor do I want it to. I have learned a lot over the past year (…too much to recount in this post), but one of the most important things I have taken from my experience is to embrace the moment I am in, and the people I am sharing it with.
So that is what I plan to do. While the uncertainty remains, I have the opportunity now to start putting my life back together however I want to. That is both exciting and incredibly nerve-wracking. The “stable” MRI is more the end of the beginning rather than the end, but I’ll continue to move forward. To move forward enjoying where I am even when it is often unclear where I am heading.
In the meantime, I want to thank everyone who has supported me from close or afar overt this past year. There are too many people to name in this post, but please know how appreciative I am for all of the support I have received that has helped me get through this first major step in what will be a long journey.
6 Replies to “Done with treatment, MRI is “stable”… so what’s next?”
Congratulations Jeremy! I wish you a future as amazing as you are!
Where can I find a group to join so I can talk to them I was diagnosed with GBM in December and having chemo and having them over rice yesterday was the first MRI they came back stable and I don’t know what all this means I’m very new to this stuff I pray for anybody going through this
Thanks for reaching out! Depending on where you are located, the hospital you are receiving treatment might have support groups available. I found the young adult group at Dana Farber to be very helpful in finding people who understood what I was growing through. I can resonate with your feeling after getting your MRI results back. Just because treatment might be done for now doesn’t mean the psycho-social challenges of cancer just stop. It’s really important to have people to talk with (groups, a therapist, family, friends, etc.). The fact that you already realize finding a group to talk with would be helpful is already an amazing first step. I’d be happy to chat with you more!
❤ ❤ ❤ let's talk soon plss
Just received results with my best friend and they told us his MRI is stable which made me google that and it brought me here. I pray you are still doing great. I am so scared every day that I will lose my favorite person in the world to brain cancer. And you are right. There is no remission. It’s living from mri to mri. Has any heard of Tocagen and had great results? I would love any feedback on the drug as that’s what my friend is on as well as any advice as far as being there for someone battling this and what I can do. Keeping you in my prayers Jeremy.
This is a rather old post. I am hoping your tumor still remains stable. My daughter is nearing the end of her chemo for astrocytoma. Chemo has been doing its best to kick
Her ass. She as well rec’d proton radiation in Philadelphia. Best wishes for you and 🙏🏽 You are a true warrior as my daughter is 💪🏽