How do I choose…

Little White Dot (3/3/23)

On January 31^st, I had an MRI that revealed what looked like a little white dot. This spot was seen on scans used with contrast, meaning something was going on there that involved blood. The worst-case scenario was that this spot was an area of “enhancing tumor,” or tumor recruiting my brain’s blood vessels.

I was scared because if it did represent tumor, it was aggressive. Most of the tumor in my brain has been non-enhancing. In 2019 though, I did have a small spot of enhancing tumor appear, and we zapped it with radiation.

Most of the appointment with my doctor was a blur. In my left arm was an IV to possibly start chemotherapy, but as mentioned in my “Choosing Limbo” blog post, I was leaning towards waiting to start treatment. Seeing that spot though almost got me running to the infusion chair, but my doctor and I agreed we would wait a month for another scan to see whether the spot was tumor growth. If it grew, we would of course start treatment.

Surprisingly, that spot didn’t take up most of my thoughts over the subsequent month. Instead, I stayed busy with physical therapy, swimming, my family, and partner. When asked how I handle this level of uncertainty, I responded, “I have no control, so why agonize over it?” I don’t mean this in a fatalistic way, but I’ve simply learned it’s not worth fretting over uncertainties that are out of my power. Instead, I strive to focus on the present and live.

One Month Scan (3/3/23)

The days leading up to my scan were challenging. Despite my ability to cope with uncertainty, the anxiety of my upcoming scans took over. I had more fatigue, couldn’t focus, and escaped into the virtual world of tv and video games…my usual reaction to scanxiety.

Due to scheduling difficulties, my scan was on a Monday, and I couldn’t see my doctor until Thursday. The evening following my MRI, I checked my phone for test results.

Following the 21^st Century Cures Act, most of my medical information is readily available in my patient portal, including my MRI reports (and even the actual scans).

So, I peeked…

And was excited to read, “Decreased 4 mm focus of enhancement along the lateral aspect of the resection cavity.” In other words, the little white spot shrunk! It was 6mm one month ago, and now 2mm smaller!

My experience as a patient taught me to always wait until seeing the doctor, but still I was happy and shared the news with my partner, mom, and stepfather.

On the day of my appointments, I woke up early for a virtual visit with my neurosurgeon, which coincidentally landed on the same day as my neuro-oncology appointment. Sitting next to my mom on the couch, we signed into the patient Zoom portal. After some pleasantries, my surgeon asked me what treatment I was doing, and I awkwardly responded “none,” as the plan was to wait for further progression. Despite her deferring to my neuro-oncologists for any treatment discussions, I couldn’t shake off the feeling that she had expected me to be on treatment, or at least planning to start something. She thought the white spot on the scans was unchanged and not from surgery, and she also pointed to another area of my resection cavity closer to the center of my head where there was “something” on the scan. Her opinion was that it was most likely tumor rather than any post-surgical changes. I had not previously seen this new “spot” because it was clearest on a new MRI slice that my surgeon ordered specifically for this visit.

My mom and I signed off and turned to each other. Both of us deflated, as if our expectations for the day took a 180. I was hoping my surgeon would amplify the good news I read in the MRI report, but that didn’t come to fruition.

It’s the blessing and the curse of being able to see all of my medical information before talking to the doctor.

Before my mom and I left for Dana Farber, I got a call that my neuro-oncologist wanted me to get some labs drawn. I wondered why he needed the same labs that I got just a few days prior, and assumed that he wanted a baseline for me to start chemo.

Sitting in a living room style exam room, my mom scrolled on the phone while I looked at the traffic patterns of the cars nine floors below. My doctor came in and said he thought the scan looked good since the spot was slightly smaller. I was confused because just that morning, my neurosurgeon said she didn’t think it had changed that much in size. I mentioned this to him, and he recognized 2mm may not look different, or much of a real change, but at least the spot didn’t get any bigger, and that was most important.

I asked him about the other spot my neurosurgeon showed me, and he brought up a scan from many months ago showing that it had been unchanged.

With an IV again in my left arm, it was as if I was trying to get him to admit to any reason where we 100% needed to start chemotherapy then, but that wasn’t the case.

We were back to where we were a month ago, or when I “chose limbo.” Except this time, I had the scare of the little white dot, which was bringing up all sorts of anxieties. Did I want to wait? Could I really start now?

I asked Dr. Wen what he would do if he was in my shoes, and he once again said he would wait until he saw further progression or developed a symptom. I asked why, and he simply put it that the chemo is hard, will make me very tired, and waiting would let me enjoy a better quality of life right now.

Unlike the month before, I now felt some resistance to waiting. I felt stuck.

In December, my neurosurgeon was able to remove most of the tumor but approached a limit of 2mm from the area of the brain that controls significant function of my right arm. Thus, there is some tumor left. We know this, and we also know there are tumor cells tentacled around my resection cavity that we cannot see. What if that tumor grows just slightly towards the motor strips and initiates seizures again and/or functional loss?

I posed this to my doctor, and he felt close monitoring via MRI’s would let us catch something before it became a problem. I know though from experience that MRI technology isn’t the most exact imaging, so I am somewhat skeptical we can 100% catch growth before it causes any problems.

But what do I know, I’m only the patient.

Choosing to wait on doing treatment introduces uncertainty, but it is different from the uncertainties I’ve learned to live with since 2004. In the past, I have had no control. Now, I have all the control. If I wait, I’m introducing a new, unknown variable unnecessarily.

Perhaps what has shifted most is my short-term vs. long-term thinking. I have long valued living for the moment, but a lot of factors in my life are pushing me to focus on extending my quantity of life as much as possible. A partner I love and want to grow a life with, being an uncle, and so many other aspects of life I value.

Does starting or holding off chemo make a difference in my “quantity” of life? No one knows. But it does give me one of the first opportunities to have control in what is usually an uncontrollable situation.

Yet, I trust my doctor, and this would be the first time I would ever not follow his advice since choosing to partner with him in 2014.

According to my doctor, there is no right or wrong decision. If the anxiety of waiting is too high, then it would affect my quality of life in the moment and be counter-productive to the reason for not doing chemo right now.

As I’m typing this, it’s becoming clear to me, and probably to you, what my gut says. But I’m still not fully convinced nor settled. Will I be?

It feels weird to say I’m “choosing” to do chemotherapy although I know that’s not necessarily the case. I’ve had the recurrence, and I know I need to do chemo regardless. It’s just a matter of when to pull the trigger, and it is certain that it is “when” not “if” that trigger will need to get pulled.

My partner gave me some good advice though: “Don’t make any decisions in a high-anxiety state.”

Fortunately, I have time to make this decision. I told my doctor I would get back to him in a week. Given that my heart is slightly racing as I write this, I probably should take some more time. Perhaps just the week, or maybe decide at my next MRI in a month.

Clarification (3/13/23)

The day after my appointments, my Primary Care Physician emailed both my neurosurgeon and neuro-oncologist to clarify some of the questions I had. First, was my neurosurgeon expecting me to be on treatment? Second, will waiting change the likelihood of my response to the chemotherapy, or at least are we unsure if it matters?

My neuro-oncologist again expressed he did not think starting now or waiting would make a difference. It was my neurosurgeons reply though that flipped my thinking. She wanted to emphasize she in no way expressed an opinion one way or the other for starting or delaying treatment.

It’s very easy to place meaning onto the words of a doctor that they are not actually intending, especially in high anxiety situations. I think that is what my mom and I both did. That is why it is so important to do this type of follow up, and I am incredibly privileged to have a primary care physician who took initiative.

The most important part of my neurosurgeon’s reply though was, “He is quite safe at present and our overall goals is to stretch out the total number of available therapies for as many years as possible.”

… “stretch out the total number of available therapies for as many years as possible.”

That sentence stood out to me as if it was a blaring siren.

I immediately thought of my treatments like cereal boxes. The stock of cereal in my pantry is almost empty. In addition to my three surgeries, I’ve already done Temodar, radiation twice, IDH2 targeted therapy (Idhifa), and Immunotherapy (Pembrolizumab). There aren’t many cereal boxes left. I have PCV, the chemotherapy I’m considering, and I also have whatever other experimental treatments there might be. They’re also working on making new cereal I may want to try in the future, but I need time to get to that point. So, why eat one of my final boxes of cereal now when I don’t necessarily need to eat it?

My thinking, and gut decision, flipped. I wanted to wait.

How was I going to handle the psychological challenge of waiting? How was I just going to give up my control?

Over the past month, I read through all my blog posts and writings in a process to start crafting my book that I have always wanted to write. I realized from this process that none of what I am feeling now is new. I’ve experienced it before in some way.

In January 2018, I wrote, “In a situation where I already feel out of control, waiting amplifies my sense of powerlessness.” And that’s really the crux of it. To lose agency over my own body…over my own life.

Yet, I also wrote, “The only way to cope with the uncertainty of my journey is to embrace what gives me life.” I’ve done this before. When I was on immunotherapy, every nine weeks at my MRIs, everything I was doing could come to a stop. Despite that, I kept living. I finished my Masters, loved, and spent two years in a job I was passionate about.

So, why can’t I do that now? To embrace what gives me life is to follow my values, and that hasn’t changed for me. I can continue to spend time with my family, try to be the best guncle the world has ever seen, love my partner fully, get back into my Planetary Health work, and strive to write my book.

I don’t know how much time I’ll have until I need to start chemotherapy, but I do know I can use my time as best as I can because I’ve done it before.

With love,

Jeremy

P.S. If anyone knows any publishers, please send me a message 😉