In Utah I had been prepared to start with radiation immediately. However, the neuro-oncology group at OHSU has another approach. In fact, it is a method pioneered by them. They begin with 12 sessions of chemo over the course of a year. Each session is four days in the hospital. Day one is tests, screenings and other prep work. Day two and three are back to back infusions under general anesthesia. Day four is recovery. To contrast, typical chemo sessions last from 30 minutes to four hours.
The drugs used to battle the cancer are Melphalan and Carboplatin. They will be sent through a catheter that goes from my groin (inner thigh) up to my brain. To make the chemo more effective, they inject Mannitol first. The Mannitol disrupts the blood-brain barrier and allows ten to 100 times more of the chemo drugs to enter directly into the brain and fight the cancer.
The goal of this approach is to shrink the presence of the tumor before transitioning to radiation. The radiation can then be more targeted, meaning less radiation overall.
If you want to read more about the blood-brain barrier disruption (BBBD) approach to chemo, check it out here: Neuro-Oncology Blood Brain Barrier Program.
SUNDAY SEPTEMBER 24, 2017
As soon as I learned that my tumor is malignant and requires extensive post-op treatment, I knew that I couldn’t continue my work contract in Utah. I didn’t even consider it an option to live away from Jaehee, renting out a room and working a demanding new job, and all the while going through radiation and chemo therapy.
There is a four to six week window between when my surgery took place and I needed to begin the next phase of treatment. I was already more than three weeks out from surgery when I got the tumor pathology report, so there was little time to waste. I immediately told my doctor I needed to transfer my care to the Portland area. He referred me to Dr. Neuwelt at the Knight Cancer Institute at Oregon Health and Science University (OHSU) in downtown Portland. Jaehee and I began working what felt like a full time job to ensure OHSU would accept my case, the transfer was in my best interest, and that our insurance would cover the facility and doctors involved. It took three separate attempts to get my medical records released. Even then, the MRI images and pathology arrived at OHSU within hours of the scheduled cancer board during which they reviewed and formally accept my case.
I received official confirmation that I would be treated at OHSU at about noon on Tuesday September 12. That gave me just 24 hours to pack all of my belongings, move out of my apartment, and drive out of Utah by noon on Wednesday September 13. I had to leave in such a hurry, because at 4 pm on Thursday September 14, I had my initial consult with my new team at OHSU.
At full capacity, I could have driven 12 hours straight through on Wednesday. But, I was not at full capacity. I was still under the effects of the surgery and medications. Although I was cleared to make the drive, I was nervous about the risk of a seizure. I was taking Keppra, my anti-seizure medication. But of course, it has a side effect of drowsiness – not helpful on a roadtrip. Despite the hurdles, I drove eight hours Wednesday and then got a hotel in La Grande OR before sundown.
Thursday morning I had another dilemma. The best route to Vancouver WA (home) follows I-84 through the Columbia River Gorge. But a long stretch of that highway was closed because of the Eagle Creek Fire. Most traffic was rerouted through Central Oregon from Baker City, or over Mount Hood from The Dalles – either way an additional two hours of drive time. In the end, I took a gamble and drove through the Gorge on SR-14, the local route on the Washington side. Traffic [and smoke] was heavy, but I was lucky not to hit any major delays. I made it to Vancouver on time to clean up and head right out to OHSU for my consult.
The results are in. No cancerous cells or abnormal masses were detected in my spine during the MRI and lumbar puncture. In other words, my cancer has not metastasized.
My radiation will still include both brain and spine, because my tumor is nefarious.
Still, this is great news!
On August 30 and 31 I had two appointments with the Radiation Oncology department (aka “rad-onc”) to find out if my tumor had metastasized into my spine prior to the resection.
Procedure one was a full spine MRI that scanned my brain, cerebral, thoracic and lumbar spine. Scanning that much area takes time – about two hours. Two hours in an MRI machine is serious business. If you’ve ever done an MRI, you know that means being loaded into a dark, tight tube and not moving – at all (if you move, they restart) – while the machine produces every strange, loud noise you can imagine. The machine gets warmer over time, and eventually far too warm for comfort. The doctor offered me Valium several times to keep me calm.
I am proud to say that I made it through the two hours without a restart, and without Valium. Later at home I spent some time trying to understand how an MRI machine works, and what the heck all of those crazy noises are. It is incredible technology, and quickly went over my head. I did find out the machine I was in has a primary magnet strong enough to both pick up a car, and also to reorient the protons in my body.
Procedure two was a little more intimidating. I went back to rad-onc, this time for a Lumbar Puncture or spinal tap. Despite its nasty reputation, the spinal tap was easier to go through that two hours of MRI. I have good spacing in my spine, so I didn’t need to get in a weird position. They used a 22 gauge, 3.5 inch needle and local anesthetic (Lidocaine), so I barely felt the “tap”. The doctor navigated the needle between my L3 and L4 vertebrae using fluoroscopy (live x-ray imaging). When it got to the cerebrospinal fluid (CSF), she drained out 12 ml of CSF into vials. The CSF was totally clear, like water. The process is just about the same as tapping maple trees and letting the syrup run down the spile into the hanging bucket. They even taped the vial to my back so they didn’t have to hold it while the CSF slowly dripped out.
The worst part of the spinal tap is really what could happen – things like paralysis, infection going into your brain or CSF leakage that results in a horrible spinal headache. They warned me that things like bending over or a difficult bowel movement could cause such a CSF leak and send me to the ER for a blood patch. So, for two days after the procedure, I was paranoid about everything I did. But now I’m fine. Minimal physical discomfort, lots of mental stress.
Now we just wait for the results.
On Tuesday August 22 at 9 am I went to the Huntsman Cancer Institute to meet my cancer management team and discuss the newly available tumor pathology. Previous to this appointment, we had no specific details on the nature of my tumor or the prognosis or treatment plan. During the appointment a great deal of information was revealed and several key decisions were made. A lot of decisions remain, but we now have a framework for making them. In the next few paragraphs I will communicate some fundamental information I took from the visit.
My surgery occurred on August 8th. A tumor of about 6 cm in diameter was removed from the area of my frontal lobe. MRI scans from before the operation show the size and location of the tumor. MRI scans from after the operation show a surgical depression with some pooled blood.
Primary brain tumors occur for the most part randomly at a rate of some 68,000 cases per year in the US. The Huntsman Institute gave me a guide to understanding brain tumors during my visit. However, the tumor I have is not listed in the book. Even among brain tumors, I managed to get a rare one: a PNET (primitive neuroectodermal tumor).
The PNET is a primary brain tumor, meaning it originates in the brain. The is no risk that it is another form of cancer that has moved through the body to the brain. However, it can move within the brain, and also down the spine.
PNET tumors like mine are grade IV, meaning they are aggressive and malignant. The PNET develops its own blood supply, which allows it dangerous growth and mobility. Their cause is unknown.
Surgery is the first step of treatment. Because of the nature of the tumor, complete removal is not possible. In the case of my surgery, the operation was successful at removing the large mass. However, microscopic remnants are still in my brain. The remnants will be treated through six weeks of radiation and then through chemotherapy.
The five years survival rate for a PNET is 53% with the primary risk that it either resists treatment or grows back. If it responds to treatment and no new growth takes place, especially by the five year mark, a normal life can be expected.
The Next Steps
There are three phases taking shape. Phase one runs from the initial brain surgery to the one month post operation follow up. I will spend this time in Utah. I am completing occupational and speech therapy and doing basic physical tasks to rebuild strength. Because my tumor can move to the spine, I am scheduled for a full spine MRI and a spinal tap. The tumor itself will also be genetically sequenced to assist in planning the exact chemotherapy regimen.
Phase two is my six weeks of radiation starting mid-September. I will move back to Vancouver WA to be with Jaehee as I enter the radiation. My doctor tells me it will be a challenging period and I should not expect to work or have energy. Exactly how I respond is unknown, as each individual tolerates radiation differently.
Phase three is the chemotherapy. Until my tumor is sequenced and the effectiveness of the radiation is analyzed, I won’t know how long or intense chemotherapy will be. The guideline is to expect six to 12 months, starting sometime in November (I guess this will be my birthday present this year).
Throughout this time and continuing longer I will have regular MRIs, consults and screenings. I’m told to expect ongoing fatigue at a level almost incomprehensible to people who haven’t experienced things like brain surgery and radiation treatment. There is risk of seizures. And without question, my general emotional perception of the world is less acute.
I don’t know if it is the loss of emotional response from them poking around at my frontal lobe, but I’ve been mentally calm throughout this experience. I don’t love the idea of a spinal tap and having my brain bombarded with radiation. And I am frustrated at the disruption this causes to my professional growth. But thus far I don’t feel anxious about the sudden change in quality of life, or that somehow it is unfair. It is just happening, and we are responding to it as well as we can.
I would like to say that I appreciate the outpouring of support. I know that behind the scenes a lot is being thought and said and done that I will never fully grasp. But I have some sense of it, and I’m grateful. If you want to ask questions or check in, don’t hesitate. I don’t consider the topic too sensitive or taboo. Just remember that, at least for now, my stamina is low and I might mentally check out after a short visit. Don’t take it personally.
It was both liberating and intimidating to get out of the hospital. A few short experiences on the way home quickly impressed on me that my body and mind are not only below optimum levels, but actually below what I have ever experienced. I am the same person fundamentally, but my strength and agility are simply not there. The deficit stretches across most of my abilities. I think, talk and react slowly. My eyes take extra time to shift focus from one object to another or to adjust to varying light levels.
It is a strange world to deal with. I feel like I should function “normally”, but I don’t. Still, it is nice to go for a walk or prepare my own food. Interacting with the world on my own terms is therapeutic. I fill my days with many small tasks to keep my mind busy, but not overwhelmed. I do things like wipe down the mirrors, take out the trash, fold my clothes and update my calendar steadily throughout the day. It sounds simple, but it is definitely beneficial to my cognitive recovery.
I had my first therapy sessions at the Sugarhouse clinic today. I was approved for 30 total hours in speech and occupational therapy. But after the initial sessions, the therapists have waived all but three more hours to complete a formal cognitive skills assessment and a driving test.
Jaehee is here for the weekend. We are taking care of some of the billing and paperwork. This evening we’ll go walk a mile or so in the park. I’m excited for the movement and fresh air.
I have spent the past week since surgery in the hospital recovering. The days are filled with small improvements that range from boring (practicing using my left peripheral vision), to overly personal (recording bowel movements), to comical. I’ve gotten praise for each bit of progress, but it always comes with dire warnings about the risks of assuming I am much more capable than a very small baby.
The default trajectory would have had me to go directly to inpatient rehab for two weeks of therapy. But I expressed reservations that I might get restless with the slow pace and heavy oversight. The nurses now get worked up now if they see me rotate to the edge of my bed without assistance. But when they look away, I am pacing around the room, taking a shower and repacking my bags for check out. It’s a tough situation for a caretaker with sincere concern and a restless patient. I am anxious to move on; bed-rest is only valuable for a short while before it becomes a liability.
After a few days of pushing for a more personalized therapy package, this morning the doctors finally ran me through personalized assessments and agreed it made no sense to keep me inpatient. Insurance quickly approved the lower cost out patient appointments. My head staples were removed and I got to clean up some blood and gunk and cut my hair to look less insane (my nephew description was “it looks kind of funny, but mostly scary”). My catheter and two IVs were all pulled as well. Soon it will just be a matter of signing the papers to discharge and then making my escape with Mom and Dad.
There are probably a few more items I’ll have to attend to, like medical monitoring, medications, transportation to therapy, paying bills… But I’m sure that will all just fall into place. For now I’m ready to go.
My tumor was discovered on August 2. It was first believed it was meningioma, a benign tumor with nearly 100% survival rate. The neurosurgeon advised us to schedule surgery within 30-90 days. In the meantime, I was released back home. Then another opinion came in that it was more likely glioblastoma, a malignant tumor with 0% survival rate. Soon, the primary surgeon stated my case was too complicated and he referred me out. I was transferred to University of Utah Hospital where the chief of neurosurgery took on my case. He declared that I needed immediate surgery.
On August 8, I went under the knife for a bifrontal craniotomy. I was under general anesthesia during the six hour operation. I emerged with a misshapen and swollen head, about 40 bloody staples sealing up an 11 inch incision, a black eye, a sore jaw, half my head shaved and a completely numb scalp.
As I was waking up from the anesthesia, my memory was switching back on. I was dazed and having minor hallucinations, which is pretty normal after someone cuts something out of your brain. In fact, I was generally more lucid and conversational than expected. I recognized my parents and Joon when they came in the room and I memorized my patient number out of boredom. Unfortunately, it took longer for me to recognize my own wife. I told Jaehee multiple times that I didn’t know who she was. And I even told a nurse that Jaehee had kidnapped me. Then, the morning of August 10, I clearly recall waking up and seeing her asleep in a chair in my ICU room. I asked her by name if she needed extra blankets. Although I didn’t understand the significance at the time (I don’t remember not remembering her), Jaehee was very happy.
The strangest part about having no memory is that when I finally became aware again, there was no “a-ha” or “wow” moment. You would think I’d be freaked out to wake up full of IVs in a hospital room, a bloody bandage over my head, my family surrounding me and a neurosurgeon telling me he’d just performed brain surgery. Instead, I received the news in a calm, matter-of-fact way. I just kind of nodded and said “Uh huh. OK.”.
In June I moved to Utah to begin a work contract. Jaehee remained in the northwest for her job in Washington. We planned to see how promising the position in Utah was, and then decide which state would be home.
In July I began having strong headaches. I never get headaches, except when something hits me in the head, so it really caught me off guard. The headaches got progressively worse until they were incapacitating. A few particular incidents alerted Jaehee and the rest of my family that I needed medical attention.
Important to note is that as of right now, I have no memory from about July 28 to August 9. Before and after those days there are a couple of blurry days. I don’t know if I was aware of what was happening to me during that timeframe and later forgot it, or if I was a walking zombie for two weeks. Either way, I have no firsthand memory. I do have accounts from people who interacted with me and detailed medical records that let me piece together what was happening. (Although I do get some things mixed up still.)
One of the first red flags to my family is that I had trouble with times and dates. I didn’t go to work on a Monday, telling Jaehee it was still Sunday. I left work early one day, in the middle of the week, telling my coworkers I was going mountain biking for the weekend (I didn’t go mountain biking; I probably layed on my bed for several days – but I can’t say for sure).
By the end of July I had apparently I stopped eating on my own. The headaches made me vomit when I did. I dropped to 125 pound and was extremely weak. My brother-in-law, Joon, was bringing me food in the evenings and coaxing me to take in some calories. My brother, Ammon, took me to an urgent care clinic where they suggested I might have allergies, or maybe my chair at work wasn’t aligned right with the monitor height. Ammon pushed for a better diagnosis, and I got some allergy shots, steroids and painkillers that did not help.
By the first days of August, my job had called the police to do a welfare check on me. My roommate found Ammon on Facebook and messaged him that something wasn’t right. Jaehee was calling contacts in Utah telling them I needed immediate help. Through all of this, I was mostly incoherent, or just not communicating.
The next part confuses me, but I know my whole family consulted about what steps to take. Ammon and Joon were involved directly, since they are in Utah. I was driven to an ER and was taken by ambulance to another ER. Numerous MRI and CT scans were done. The doctors found a 5-6 cm brain tumor – just a little more serious than my office chair being set too low. A team of neurosurgeons began planning my treatment strategy.