Category: radiation

A Catalyst for a Resurrection

Although I shut down back in 2017, I am opening this blog to once again share my story with the hope that it may resonate with someone.

Since then, I’ve gone through several more operations and treatments. From each treatment, surgery, and medication, there are been impacts to my body, mind, and soul which fractures a sense of self. It’s traumatic each time. Even though I may be the one making the choice with my team, my body does not.

Through resilience, I can give myself grace, patience, and healing over time. We can adapt with what we’re given. And for me, I’m leaning deeper into the suffering to learn from life through the lens of my curiosity when I can. There are limitations, walls, and barriers. Some may had been created for me to survive but now need to be broken as they are no longer helpful. The idea is to bridge the gaps between control and the unknown. I need to ground myself with what I do know and surrender from what I do not know: objective vs subjective.

I had a brain hemorrhage on 2020 right around the pandemic which shattered me. I had no control with what happened. On that day, I was experiencing another focal seizure: tingling, numbness, fatigue, and worsened expressive aphasia. I could feel that something new and worse was happening but couldn’t pinpoint it. I had to call out to get to Lauren and lied down to rest but new that I needed further help. I fell into a fog, and she called for an ambulance to rush me to a hospital.

When I made it to the hospital, I was in and out of a daze while they were asking me questions. I couldn’t follow what was happening and passed out again. After waking up, I learned that I had consciousness but had no control and no memory for the day.

The neurosurgeon stopped the bleeding, discovered the tumor, and chose to cut out the tumor. He saved my life. I had a speedy recovery with the help of occupational and physical therapy. I was able to get back home soon after.

However, he also did not send the tumor to pathology and did not give the same care that I was given from my main team. I had worsening headaches. I could almost feel the screws along my scalp and would sometimes soothe my head by massaging the tenderness. There was something wrong while comparing from my first surgery. I knew that I would need another surgery to fix my head.

Along with that, I lost vision on the right side with both eyes. I won’t get that back. And with my speech, I wonder if the neurosurgeon cut too deep or caused a worsening impact with my language. On top of that, I was given wrong information with my insurance. I kept asking to make sure that my speech therapy was covered at home. I wanted to trust them. But I had a feeling that I was missing something. I was given a bill much later after processing the insurance and had to pay out of pocket because several sessions were not covered. I felt like I had an awful experience while also trying to grapple and understand what happened to me.

Despite feeling a loss of control and anger, the fact is that they did their best to save and help me while I somehow needed to cope from traumas and navigate which directions to go next.

Soon after, I had a recurrence within the year and got back on Temodar. Then there was enough time to recover from the surgery to have another which aligned for me to have GammaTile. I was the first patient in UT Southwestern, and the experience was incredible. Love comes through this medical center. Although I already felt fortunate to have their care, the appreciation is magnified.

Afterwards, I coordinate my team locally with Highlands Oncology Group where similarly they deeply care for the patients and have given emotional and guidance. They follow-up with me with MRI and have helped to have infusions to resolve swelling from the impacts of the radiation (necrosis).

I have to coordinate between two teams, and this is just a touch of how complicated healthcare can be for a patient to navigate their healing.

Now I am finished a treatment for the necrosis, and I’m in the middle of chemotherapy (lomustine and procarbazine) from a recurrence this year. And I’m freaking tired of feeling like I have to wait to recover. That’s me. I’m tired of doing that, but it is a lot harder. It’s pushing against the grain which is beyond uncomfortable. There is this strange space between this chemotherapy and continuing to recover from my brain hemorrhage. This is where I’m leaning deeper into the suffering along with all these techniques and practices that I’ve learned along the way. I simply have to follow through by learning to trust myself again. A deep layer involves this inner confusion while lose a sense of self. I need to find that again.

So, here I am. Back to this space with my blog. I need to open up again, and I’ve been given gentle nudges from the support of several others where I am deeply grateful. Time to be true to oneself and yield to the gravity from the traumas. All we can do is our best.

Posted on by Matt Duba Featured 0

A step in a new direction

I have recently had a follow-up MRI alongside consultations with the medical oncology team, then later met with the radiation oncologist.

The good news: the MRI showed that the tumor is stable.

The ambiguous news: the medical oncology team advised that I continue with another six cycles of chemotherapy.

Typically, I would have been given an option to take a break after completing the twelve cycles or continue with another six cycles. Due to the growth in the last scan, there was concern for ensuring that the tumor is kept stable which would require continuing the chemotherapy for another six cycles.

Where the ambiguity comes in is that the radiation oncologist had a difference of opinion and believes that now is a good time for radiation. The medical oncology team warned me before the consultation.

Warning: the radiation oncologist will be radiation happy.

Their excitement about the potential for the specialized treatment can come across as overzealous.

Warning: the radiation oncologist will have rose colored glasses about the side effects.

Patients who receive radiation will follow up with the medical oncology team and have reported side effects that will not be communicated back to the radiation oncologist. Long-term side effects such as memory problems, fatigue, and other potential issues caused from damage to healthy tissue.

Warning: radiation is generally a one-time treatment option.

The damage to the tissue is too severe to expect multiple radiation treatments in the future.

That said, there are other ways to look at the warnings:

Both teams will be presenting advisement based on their specialty. The medical oncology team specializes with the chemotherapy, and the radiation oncology team specializes with the radiation.The chemotherapy is an attempt to keep the tumor stable, and the radiation is a more definitive treatment to stop the growth by killing off as many of the malignant cells as possible. Both need to be evaluated to determine which is most applicable for the uniqueness of my case.

While this is concerning, the information is rather vague and incomplete. As important as it is to acknowledge the potential side effects, it is important to consider how the side effects can be managed and improved.

Similarly, as concerning as the one-time treatment is, the timing may be right. If there is a recurrence in the future, it will become a new case and will have to be handled differently. Although the radiation is generally advised as a one-time treatment option, there could be a case where light radiation could be used in the future if necessary.

On the other side, I have concerns with continuing the chemotherapy considering the tumor has demonstrated growth twice: once on a break and another while taking 1500mg of chemotherapy a week every four weeks over the course of ten cycles. Although the dosage was bumped up to 2000mg a week for the last two cycles and kept the tumor stable, the question becomes what will happen in another six cycles.

The best case scenario would be that the tumor remains stable. Then what? The last break lasted a year. Based on the progression of the tumor over the years, I think it would be optimistic to expect the tumor to remain stable for more than a year while on a break. The other option might be to continue the chemotherapy, but if that were the case, I do not know how well my body would be able to handle the high dosage indefinitely. In either case, we would be waiting for a growth to become visible on the MRI. At that point, the tumor will have grown larger and effectively creating a large volume that would need to be targeted for the radiation therapy.

Either continuing the chemotherapy or going through with the radiation treatment would be reasonable choices which leaves it up to me.

I have decided on moving forward with the radiation treatment as I believe now is the right time for me. Rather than waiting to have my hand forced by what feels like an inevitable growth of the tumor in the near future, I am making the decision to attack the tumor now while my body, mind, and spirit feel prepared to withstand the treatment. Six months ago, I am not sure if I would have been able to make this decision. I may have decided to wait. The decision weighed heavy and has taken time with reflection, but I believe I am making the best decision. I feel confident moving forward.

Intensity-modulated radiation therapy (IMRT) will be used to irradiate the tumor. This is an advanced technique that is highly precise in targeting the malignant tumor and minimizing any damage to normal tissue. A CT scan of my brain will be fused with an MRI scan to create a three-dimensional model of my tumor, and a physicist along with the radiosurgery specialist will work with the calculations over a week to prepare for the treatment. The radiation dosages will then be delivered by computer-controlled linear accelerators.

The plan is to start my treatment on 8/28 at UT Southwestern, and it will last six weeks. During that time, I will be taking a low dose of chemotherapy each day to make the tumor radiosensitive. The radiation treatments will be five times per week and receiving the dosage will feel like an X-ray. The side effects from both the radiation and chemotherapy are not expected to hit me until the last couple weeks, and what is typically reported is fatigue as if crashing into a brick wall.

I feel as if I have been preparing for this. As scary as it is, this is a treatment option that has the potential for adding years to my life. The hardest part will be working through the side effects and how those side effects can attempt to define my identity. I plan on continuing my routine which includes but is not limited to: whole, natural foods with minimal animal products, mindful meditation, yoga, cold exposure, and self-compassion. Each step of the way will present a new challenge, but such is life. I feel ready, and while it may sound strange, there comes a slight excitement and hope along with it. Hope that whatever happens, I can work through it, and even if there are times where I fall off path, I can find my way back.

To the readers, I would appreciate any thoughts or prayers that are directed at the success of the radiation treatment. Although the goal is to stop the growth, I am directing my energy towards the possibility that we can take it one step further and kill all the malignant cells, potentially shrinking or eliminating the tumor. For my case, the possibility seems like a shot in the dark, but in this instance, a shot in the dark is better than no shot at all.

Finally, any thoughts or prayers for Lauren and my family would be appreciated as well. While I am the one going through this treatment, they will be the ones who are providing support, forced to walk their own paths alongside me and confront their own challenges along the way.

Posted on by Matt Duba 4