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End of my Fifth Cycle of Chemo... a Mixed Bag of Emotions

Writer's picture: johnvsgbmjohnvsgbm

I have finally finished my fifth cycle of Temozolomide (Temodal), the chemotherapy treatment for glioblastoma patients. Our standard treatment for glioblastoma started on November 29, 2023, with a full surgical resection. After healing, I underwent 30 fractions (30 days) of radiation therapy over six weeks, accompanied by weekly blood tests to ensure the treatment was being safely tolerated. During this time, I also took Temozolomide for 42 days, followed by a small break, and then six-monthly cycles of five days on and 21 days off, at four times the normal dose. Additionally, I have been wearing the Optune device, which I will continue using for 18 months or possibly longer, depending on tumor growth.


Now, I am in the fifth cycle of this final phase, still wearing my Optune device. I get MRIs every three months to watch for any growth or tumor progression, and thankfully, there has been none so far.


Every experience with chemotherapy is different. I dreaded going through chemo, thinking I was going to die or vomit every night. I wish someone had told me at the beginning that everyone's journey is different. Luckily, I never got sick, except for once when I forgot to take my anti-nausea pills. My main issue with the entire treatment has been extreme fatigue, and even now, I am always so tired.


I wanted to give a little backstory before diving into the heart of this post. I am scared—really scared—to stop treatment. Although I will not be entirely stopping treatment since I will still be on the Optune device, I only have one cycle of chemo left with no recurrence. I fear that once I stop, my tumor will magically grow back overnight. I know it sounds silly, but it is my biggest fear. I use Optune every day, all day, and I know it helps keep the tumor at bay, but it does not alleviate this aching feeling I have about the end of chemo.


So, what do I do? Well, first, worry is not a new emotion for me; I am a constant worrier. But being afraid—really afraid—that's new. What I have found that works is praying a lot and trying to find comfort in believing there is something out there beyond just nothingness. I used to be one of those people who would think, "Oh no, is he going to start talking about God?" But hear me out—it does not necessarily have to mean God, just your higher power, whatever brings you comfort. For me, that is more of a god form than anything else.. Stay hopeful and keep fighting. We are not alone in this journey, and there's strength in knowing we are supported by something greater than ourselves.


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