Finding Out
In early 2019 I was experiencing leg and back pain I assumed was related to an old injury. After the constant discomfort became distracting enough, I made an appointment with a neurosurgeon. Going into the appointment I felt certain I was dealing with a pinched nerve. The neurosurgeon ordered 4 MRIs after our initial consultation. He almost didn’t order one for my brain, but because I was occasionally experiencing a weird bladder issue, he threw it in as a precaution.
The first round of MRIs identified a “lesion” on my brain. The particular type of MRIs that were performed didn’t provide enough detail, so the doctor couldn’t determine exactly what we were dealing with. He thought it might be something harmless like an old infarction that developed when I was a kid. Six weeks later I had another round of MRIs, and it was confirmed that I had a brain tumor. What I remember most about hearing those words is feeling fear and a weird, immediate form of acceptance.
The Options
There were three options: (1) biopsy it, (2) monitor it, or (3) remove it. The neurosurgeon recommended that we monitor the tumor with MRIs every six to twelve months, mainly because it was a well-defined tumor that had not spread. I was immediately onboard with that option. I welcomed the prospect of not having to do anything other than think about the tumor twice a year. But, before we moved forward with a “wait and see” approach, the doc wanted to share my case with a committee of other surgeons and neurologists to see if they agreed. On July 3rd, he called and said the committee almost unanimously advised that I should have the tumor removed, and relatively soon. His exact wording was “you need to get it out or you might be toast.” Not wanting to become toast (at the time I didn’t appreciate the bedside manner, but looking back I think it’s somewhat funny/makes for a good story and was definitely effective), I moved forward with pursuing surgery at MD Anderson in Houston.
At this stage, we didn’t know whether the tumor was cancerous or what my prognosis would be. After the first visit to MD Anderson it was determined I would need to be awake for one to two hours during the removal surgery to ensure the surgeon wouldn’t remove any part of my brain that controls speech. The medical team would ask me to talk during surgery to determine whether certain portions of the brain they were touching were tumor or normal brain cells. Anyone who has known me for a long time knows that I have a well-documented history of passing out anytime I get blood drawn, and occasionally get lightheaded just hearing about serious medical issues or procedures (it’s so bad that one time I had to check out of school after my 9th grade Biology teacher showed us a video about white blood cells). So you can imagine the impact of hearing details of the awake craniotomy procedure that was recommended. I stayed lucid, but barely.
Surgery
We scheduled the surgery for July 31st. We brought our kids with us the weekend before and spent those next few days having fun between my pre-op appointments. My parents and Megan’s parents came in for the week to support us. Throughout all the doctor’s appointments I had managed to keep my composure, but the day before the surgery I met with the anesthesiologist who in great detail (with pictures and drawings, etc.) showed me exactly what they were going to do to me the next day. I lost it. I almost fainted, and when I left I was more scared than I have ever been. I will be super candid and real, Meg had to console me for hours that night. I was scared of the procedure, of course, but it all just became so real. After the procedure I would find out if the tumor was cancerous. At 33 years old I would be finding out whether I have a life-altering, potentially shortening, disease.
I don’t remember much about the surgery. I was “awake” for two hours of the 6 hour procedure, but I was so medicated that I have no recollection of anything other than one moment where I fell asleep when I should have been talking so they reduced the meds (even just that one short memory is so fricking weird). There was good news after the surgery. The medical team was able to remove 100% of the visible tumor cells, and I was recovering well. Because of my age, health, and the fact 100% of the tumor was removed, I did not have to receive radiation or chemo. I am thankful for this and our medical team. After two days of inpatient recovery we were discharged and headed home. The efficiency of the process was incredible and surprising.
Right before the procedure (a million thoughts and a 2 cm x 3 cm tumor on my mind)
Post-operation
Recovery and Prognosis
The most difficult part of recovery was the super strong steroid regimen. I could barely sleep for a week. Another frustrating part was the cognitive deficits. I read about this side effect and knew it would happen, but it was still difficult to accept. I would try to say things but couldn’t get the words out, or the words that came out were not the ones I wanted. The great part about recovery was the people. The people who reached out to us, prayed for us, and brought happiness to our kids. The support we received from our friends, family, communities, colleagues, total strangers, throughout this whole process moved me and still does to this moment.
Three days after coming home, I got the call I had been thinking about since the tumor was discovered. The biopsy results were back, and my tumor was cancerous. My first question to the PA was “are these results ever wrong?” I am usually a realist, occasionally a borderline pessimist, but from the beginning of this experience I had held on tight to hope that the tumor would be benign. Now I knew it wasn’t. The medical term is Grade 2 Diffuse Astrocytoma. This means cancerous cells most likely still exist in my brain. It also means that my life expectancy is uncertain but not bleak. Almost anything is possible. The cancer could come back in 6 months, 6 years or never. It could come back with the same characteristics, or it could come back in a more aggressive form. My current view, based on everything I have learned, is that more likely than not at some point there will be a recurrence, I will have surgery again, and we will take it from there. I am trying to set my expectations that way. My post-surgery care plan is to have MRIs and meet with my oncologist every 3 months to determine if there is any sign of tumor recurrence. I have had 4 follow up MRIs since the surgery, all of them have been clear; we are very thankful.
Experiencing Now and Looking Ahead
I am still trying to accept the impact of this experience on my life. I accepted the fact I had a brain tumor almost immediately. I didn’t ask why me (from like a spiritual perspective), and I haven’t tried very hard to understand what caused it (FYI, no one really knows what causes brain cancer). There are many days I want to do nothing but spend every minute of the rest of my life with my wife and kids and our families because I might be running out of time. Feeling that way is challenging since the world around me has not stopped. All the normal stressors (high-stress job, financial obligations, etc.) still exist. The daily, mental gymnastics is one of the main reasons I started this blog, to think and talk through things with others who may be going through similar situations (doesn’t have to be that you have brain cancer). We can pool our experiences, thoughts, tactics for coping, etc. and maybe find something we need to hear, something we need to learn, to live our best lives.
Nick
Comentarios