Although I cannot let my disease define who I am, I must acknowledge how the disease becomes intertwined with my identity.

My brain cancer slowly grows and invades surrounding healthy tissues. The healthy tissues protect and bind nerve cells like glue by supporting a flow of electrical signals in the brain, and the glioma cells can clump and form a tumor. I know have two tumors: one located in my left parietal lobe which has impact my language center, and the second is in my corpus callosum which could impact the coordination between the two hemispheres.

To extend my life, I’ve endured several treatments and surgeries to remove and kill the malignant tumors. The aggressive treatments like radiation have caused chronic illnesses such as necrosis, nerve pain, chronic headaches and fatigue. During a past neuro-oncologist visit that sticks with me, we had a conversation about how radiation can age the healthy cells and slow the process of forming thoughts and comprehension.

Since I’ve had two radiation treatments in the same region within four years and along with the brain hemorrhage, I can feel like a much older human being from the neuro-fatigue. Sometimes, I imagine a traffic jam where vehicles are annoyingly honking out of frustration during construction or an accident: “pump the breaks and slow down; more time is needed to create a space for the traffic to flow.” Then how old I may feel can fluctuate considering I am young enough to recover which becomes a matter of pacing and patience. Eventually, I do have moments to feel rejuvenated once again.

Similarly, although my infusions (Avastin) to alleviate the swelling (edema) from the radiation injury has been effective, the treatment is not a permanent solution and has its own side effects: mostly additional fatigue along with body and joint aches. However, beforehand, there had to be a confirmation as to whether there are dead tissues becoming a nodule which can appear like a tumor or whether there is a recurrence with the true disease. For this, there is a perfusion MRI which measures the blood flow through tissues to determine which one to treat.

And fortunately, since my GammaTile operation back in 2021, the true disease has been stable in my left parietal lobe. I chose the aggressive approach with GammaTile because I had gotten sick from taking any chemotherapy treatment. The radiation has done its job; perhaps too well by overdoing it with the necrosis, but the risk gained more time to deter another chemotherapy treatment which are limited for me.

I’m currently on lomustine and procarbazine to stabilize my corpus callosum’s tumor. There are six cycles for each six weeks. I’m on cycle five and finished my lomustine last Monday. I’ll start two weeks of procarbazine on this coming Monday. And counting down, if all goes well, I might be able to complete the treatment in September.

The chemotherapy treatments can wreck my stomach, and with procarbazine, I also have to be mindful with tyramine because I can get hives if I consume too much (which I have; whoops). And there seems to be a cumulative properties for the chemo where this last lomustine hit me hard with the nausea and fatigue. Still, I managed to recover well enough to enjoy spending time with family throughout the week and weekend: Top Golf, walks and meals, and even enjoying an outside concert. This is where life continues to surprise me when I’m willing to surrender myself into all of life which is a practice in itself.

There are these paradoxes that I often need to address during recovery and healing. The logical part of me wants to jump into the treatment planning: “Tell me what I gotta do against the disease; I’ll do it. I want to live, after all.” Then there’s the emotional component where I can feel like I’m drowning in despair: “How can I move forward when everything feels miserably overwhelming?” And this is when the logic becomes illogical yet still seems reasonable: “I’ve harmed myself once again” or “I feel like I’m dying.” Or in other words, I can get lost in the grieving through existential crises or dread: “I cannot keep doing this to myself. There is too much pain.”

One approach is grounding myself into quality of life. Again, there is the disease, and there are the chronic illnesses. For me, I need to transition further towards giving more healing for the chronic illnesses. There is only so much that my body, mind, and soul can take until I break. The challenging part is bridging the three by building habitual behaviors by leading towards a sense of wholeness. We have this capability by training our self-awareness through practices that connect between our inner and outer worlds with rituals and routines. By that, giving space and time to reflect on oneself like journaling, then interacting outside intentionally which creates impacts for oneself and others like enjoying a concert.

Or what people often say, “Gotta take it day by day.” And the complicated part is: “what do you do about your day? And how are days leading you? How do you feel overall?”

This is where I’ll bring in, “everything happens for a reason.” It’s another platitude.

Perhaps checking in, emotionally, “how do you feel when someone gives you a platitude?” It’s a moment to self-reflect and ease into one’s self-awareness. “There’s no fucking reason for anyone to be given a brain tumor.” Which is a moment to deconstruct a platitude and introspect: “where is your anger right now?”

Because fuck this disease. However, there are emotional reasons, and there are logical reasons. And we do not have access to all reasons. I will never know the reason for my brain cancer. We can name it: “I have an anaplastic oligodendroglioma.” But we do not understand what causes it yet. However, we can give reasons from what we do know: “Living with brain cancer has shaped my identity.”

By that, “everything happens for a reason,” then gives a feeling of “surrendering into the unknown.” Perhaps I’ll learn in time or maybe I never will. The importance is acknowledging the meaning as we are meaning and patter seeking species.

This is where it gets especially tricky when conversation: tone. Again, that can impact what we’re feeling in the moment from a platitude. Is someone giving an impression to come in closer? Or are they brushing something off because they’d rather not get closer? Therefore, it’s a moment to check-in and ask oneself, “how am I feeling right now when someone has given me this platitude?”

With that in mind, for me at least, I’ve been dipping deeper into soul work: “giving into the suffering for a certain amount of time.” That way, creating and giving space to allow myself to feel everything for a period of time which is in the inner world. Afterwards, getting back to the outer world by perhaps simply being outside and listening to the birds.

Because when I do reflect from how far I’ve grown from this disease and the chronic illnesses, I find that my resilience comes through as strength and connects through others. Both have shaped me as to who I’ve become now. And the more that I work towards this, the more I can give myself back to the world.

This feeling of softness internally where others seem to feel more comfortable with me and sharing their plights by remaining open with the heaviness and still feeling light. That while the disease comes across shocking and horrific, there is something beautiful in how we strive forward despite it all. This is beyond brain cancer or any disease. It’s a reminder that we’re still somehow able to live how we are for the time that’s given.

Who would I be without my oligodendroglioma?

I wouldn’t be me. All of this has pushed me to limits that I never would had expected, and I continue to be challenged. Sometimes it’s a matter of how to direct this energy with a sense of purpose by aligning intentions and impacts. And look at how many people are impacted by this disease and similarly strive forward to fight against the disease: researchers, non-profits, fundraisers, and so much more. This community continues to impress me, especially the fellow survivors and care partners who learn how to adapt with life.

Although I do not believe that there will be a cure in my lifetime, I do know that there are promising treatments towards stalling the growth while continuing to better understand the disease: inhibiters for gliomas seem promising with minimal risks.

There is hope even if we cannot find it. Hope is always there. It can be a matter of finding the willingness to dip deeper into the heaviness, learning how to endure, and finding the hope from a different perspective. I do not have hope for a cure. I have hope to truly feel alive like the air around me and to feel grounded once again in life; no matter what happens.