The start of a new journey

Well, here I am! My first venture into the public blogland.

I have decided to create a blog in order to log my journey of battling cancer, to share tidbits of information that I am learning along the way, and to probe and explore a variety of topics that I personally find meaningful.

Although cancer isn’t an easy topic to tread, I have come to accept that it is part of the chaos that is life and worth discussing and exploring. The scariness can be softened through coming to understand what it is and how to manage it.

At the most simplistic level, cancer is just an uncontrolled division of abnormal cells. I have anaplastic oligodendroglioma which is a type of glioma that is believed to originate from the oliogdendrocytes of the brain or from a glial precursor cell. Mine happens to be located in the front back left parietal lobe which is actually how it was discovered. There are two known parts of the cerebral cortex that is linked to speech, and my tumor affected what is called Broca’s area.

EDIT: I would like to clarify that the tumor is actually in the back, not the front. I’ve known this but made a mistake when referencing Broca’s area. Although Broca’s area is typically in the front, my case has gone against the textbook. Interestingly, it’s an example of how unique we are as individuals and how difficult of a task it can be for the medical team to map out a brain and discover and work with areas that go against the norm.

In January of 2014, expressive aphasia took me by surprise while having a meeting with a coworker. The words coming out of my mouth weren’t aligning with my intent, and there were words left out which made it difficult to understand my meaning. Initially, I thought it was a fluke and tried to write an email instead. Perhaps, I was just having an off day. While working on the email, I quickly and frustratingly realized that it wasn’t a fluke. I couldn’t even make sense of the email. After several attempts with revisions, I gave up on the email and took the day off.

What could possibly have been happening, I wondered? I wasn’t having any headaches. I wasn’t showing any other symptoms. Maybe stress was getting to me. I was reminded of the WebMD memes.

I didn’t allow myself to overreact. I expected it to just go away. When it didn’t go away, I called around to see if I can consult with a doctor. A nurse ended up telling me that I needed to go to the ER to have a scan.

I showed up at the ER with my parents, and my speech didn’t seem abnormal. The nurse taking my vitals didn’t think anything was wrong. Later on, another nurse threw out a joke before the CT scan that it’ll just take a couple hours, then they’ll send me home with a brain aneurysm. Needless to say, she had to choke on her words when the 4x4cm tumor showed up on the scan.

Since then, I have had an awake craniotomy to remove majority of the tumor. The tumor was graded between II and III which gave me the option to either do twelve rounds of chemotherapy with radiation, or just the chemo. I opted out of the radiation due to how it is generally recommended for my case as a once-in-a-lifetime treatment. The damage from the radiation would warrant too much risk to expect multiple treatments over a lifetime barring exceptional circumstances; therefore, the treatment would only be recommended if seen as necessary which was not the case at the time.

Due to the blood-brain barrier, I have to take a pill form of chemo in order to sneak through the barrier to attack the cancerous cells. It is important to keep in mind that the goal of chemo is to stabilize the tumor and defer growth. If the chemo were to reduce or shrink the tumor, that would be awesome, but the intention is to simply keep it from growing to hold off for a different treatment in the future.

After the first year of chemo, I opted to take a break for my quality of life. During that time, I had regular MRI scans to monitor the tumor.

A year and half later, there was a growth. Getting on chemotherapy again actually reduced the tumor back to where it was post-surgery which was great news. This time, however, I have completed twelve rounds of chemotherapy, and there has been another growth at some point after the tenth round.

The concern now is that I may require radiation in order to target and eliminate as many of the cancerous cells as possible. With these last couple rounds, I have increased the dosage, and on August 9th, I will be having another MRI scan, followed up with consultations with my oncologist and a radiosurgery specialist in order to make a decision on what the next steps will be.

I will be using this blog to log the journey, and in the meantime, all thoughts and prayers are appreciated, especially coming up on August 9th when we will be checking the status of the tumor and evaluating the best course of action.

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.