The Brain Cancer Post
Sorry, this will be a long and somewhat emotional ride.
It's astonishing how a major change in life can sometimes come from a random decision taken in a moment. You decide to do A, to not do B, to prioritize X, or to delay Y. Your life path can then alter in an instant without you seeing it coming. I started walking a new path on Saturday.
If you've read my recent blog posts, you know I've been having some medical issues for about six weeks. I've had brain tissue swelling in my left hippocampus and my inferior temporal lobe. This swelling has been causing periodic brain seizures with lightheadedness and intense rotten odors.
In November, I'd already had numerous tests in Jakarta and seen two neurologists here. Both agreed that I'd had a mini stroke in a brain artery that was causing the swelling. The cause of the mini stroke was unknown. I did not have any identified major risk factors for strokes.
I was placed on two anti-seizure medicines. These meds got me down to roughly one seizure every two days. This was much better than the 1-2 seizures per day I was having before the meds. The hope was that the meds would continue to reduce seizures as they built up in my system.
I was also on a vasodilator medication to try to clear the artery. The vasodilator led to crushing pain in my head, neck, and shoulders. I often couldn't sleep and at times vomited. After three days, I switched to Aspirin 81 as a less intense vasodilator.
The plan was to meet again with a Jakarta neurologist on Jan. 8th after a U.S. holiday trip to see how well the meds had worked over time. If I wanted to take on finding a neurologist in the U.S. over the holidays for another opinion, I could.
Then, I had the idea of going to Singapore to get another opinion there before the holidays. I traded emails with a well-regarded public hospital that couldn't see me for 1-3 months depending on the severity of my case.
I still remember the moment on the afternoon of Monday, Dec. 5th, where I weighed letting the Jakarta plan progress versus doing a web search for a private neurologist in Singapore. Sticking with the current plan would be so easy, and our U.S. holiday trip was only 12 days away. But, for a reason I can't explain, I did that web search.
I almost instantly found an insanely-qualified private neurologist, Dr. Tu Tian Ming. I emailed his staff about my situation. They replied in seven minutes and said that Dr. Tu could me see less than six days later, first thing on a Saturday morning. I agreed and made my travel plans.
At this stage, I was just getting a medical confirmation of the mini stroke diagnosis and meds. I didn't view the trip as a big deal. So, I asked my wonderful wife, Francisca, to remain in Jakarta. She could finish up her work year before our holiday trip commenced. I would go to Singapore for a couple of nights, get some added medical peace of mind, and return to Jakarta.
On Saturday morning, Dr. Tu reviewed my medical scans from Jakarta. He immediately said I likely hadn't experienced a brain stroke of any kind. My jaw dropped.
Dr. Tu said I hadn't had the right tests in Jakarta to determine stroke. He noted that I didn't have any of the major risk factors for stroke. He instead saw signs of a potential brain tumor in the scans done to date.
I needed an MRA test on my arteries and MRV test on my veins to fully eliminate the possibility of stroke and to further investigate the tumor possibility.
I asked how long it would take to get those tests scheduled so close to the holidays. Dr. Tu replied that the tests had already been scheduled in 20 minutes. A member of his team would be taking me to the testing facility now. I took a deep breath.
Dr. Tu asked to see me first thing on Monday morning to review my scan results. He also tweaked my medications, including taking me off aspirin or any form of vasodilation. (These changes have been helpful. I haven't had a seizure in five days as of this writing.)
I extended my Singapore trip an extra two nights until Monday afternoon and updated Francisca on my situation. I still asked her not to come to Singapore, which I know some may think strange. But, I felt OK, had great confidence in my neurologist, had no real diagnosis yet, and didn't want to put Francisca through a grueling trip when I would already see her soon.
I also managed to score some amazing food on Sunday evening. As crazy as it sounds, that meal experience fortified me in many ways.
Monday morning was surreal. Dr. Tu went over the MRA, MRV, and Jakarta scan results. There was zero evidence of stroke. He indicated that I likely have a cancerous brain tumor called a glioblastoma multiforme (GBM). The likely GBM is behind my left eye, has been growing quickly since the early Jakarta scans, and is creating my brain swelling. Full confirmation of the GBM diagnosis won't be possible until tumor cells can be extracted and tested.
Dr. Tu explained that I would need to consult a neurosurgeon about surgery for rapid removal of the tumor. I asked how long it would take to get that consultation scheduled as we got ever closer to the holidays. He replied that the consultation had already been scheduled in 45 minutes. A member of his team would be taking me there now. I took another deep breath.
My neurosurgeon, Dr. Nicolas Kon Kam King, is also insanely qualified. He wanted to admit me to the hospital immediately. But, he was dismayed to hear I'd been on the vasodilator and aspirin medications recently. These hinder blood clotting and thus make surgery risky. Based on this, Dr. Kon has determined that this Wednesday, Dec. 21st, is the earliest safe date for the surgery. We have built out a timeline based on that date.
I extended my solo Singapore stay for one final night to Tuesday afternoon. This allowed me to have a PET scan. That scan has thankfully not found any other disease in my body beyond the GBM. (There is an "incidental kidney nodule", also called a "renal lesion", on my right side that will be investigated, but it doesn't sound like a major issue at this stage.)
I returned to Jakarta on Tuesday night and have been happily reunited with Francisca ever since. She has been my rock through all of this. I could not ask for a more loving, supportive, devoted wife. I've always known how incredibly lucky I've been to have Francisca. But, nothing has ever crystallized it for me like the past few days. I love her with all my heart.
Francisca and I will fly back to Singapore from Jakarta early on Monday, Dec. 19th. I will have an MRI on Monday afternoon or, failing that, on Tuesday, Dec. 20th. I will also be admitted to the hospital on Tuesday morning for further tests.
Barring any unforeseen testing results, the surgery will be on Wednesday, Dec. 21st. After that, there will be some hospital recovery days and then some local hotel recovery days. The current plan is to fly back to Jakarta on Monday, Dec. 26th. We will extend the time in Singapore if I need more time to recover.
A treasured, long-time friend of ours, Jerry Margolis, will be flying into Singapore from his home in Bangkok. He will support us, especially Francisca, during my hospital and recovery time. Both of us deeply appreciate his help.
Once the tumor is extracted and can be tested, chemotherapy and/or radiation treatment will likely be needed. That will only begin after my body has had time to heal from surgery. (I'll have a tough-looking scar on the left side of my head when I see you next!) I'm not yet sure where or when my treatment will take place. I will share this news when I have it. Francisca and I will be together wherever the treatments occur.
GBM is an aggressive form of cancer. But, at 48, I'm younger than most of those diagnosed. My body is also in good shape outside of the GBM itself. So, my plan is to fight this battle and to ask my family and friends for their support as I fight.
For one lovely example, my cousin, Andy House, has kindly shared his experiences from his own successful brain cancer battle. His wonderful wife, Christine, has shared her experiences supporting Andy and her deep medical knowledge as a nurse.
Many others who know of my situation have been reaching out too. There have been offers to call, video chat, fly over, even to send money. (We are good on insurance and money, to be clear.) If you're reading this, you may have reached out and I haven't had a chance to properly reach back. If so, I'm deeply sorry.
If you've read this far, you love me on some level. And, I promise, I love you back. But, Francisca and I are emotionally and logistically overwhelmed much of the time currently. I want to have deep talks with everyone I love all the time. But, I just can't right now. I will ask for your patience as I work to get through surgery and to a place where I can be my chatty self again.
I don't know when I will next be able to visit the U.S. to see family and friends there. But, I will do it as soon as I feel it is safe and viable. And, I will post updates to this blog as I'm able. Thanks for caring about me!