My Cancer Battle Ramps Up: lafountain.blog/my-cancer…

As I wrote back on Dec. 16th, I’d been dealing with a likely brain cancer diagnosis that was to be followed by a brain surgery on Wednesday, Dec. 21st.

There have been significant updates since then. So, this new post is my way to share further information with those who want it.

Different people process stressful situations in different ways. So, please know that reading any further is a choice for you to make. Take care of yourself, too. I promise that’s what I want for you. Now, I will get into it all.

My amazing wife, Francisca, and I flew to Singapore on Dec. 19th. I then had an MRI test midday to look at the current status of my brain mass.

The mass had grown significantly in a week. My neurosurgeon went and met physically with two other doctors at 6:30 p.m. for an hour to discuss. Francisca and I sat alone in a waiting room, trying to process it all. It was a rough time, not gonna lie.

The consensus emerged that a glioblastoma multiforme (GBM) was unlikely to grow this fast. Perhaps I had some other type of brain cancer, such as a lymphoma.

The neurosurgeon recommended a change in the surgical plan for Wednesday. Instead of trying to remove as much as  possible of whatever was there, remove only enough to collect a sample for testing. Francisca and I both readily agree.

I was admitted to the hospital on Tuesday, midday. I had some further testing, but Tuesday was largely uneventful.

Our wonderful friend from Bangkok, Jerry Margolis, came in on Tuesday night and was a huge support to both of us through the following Monday. We are deeply grateful to him.

I went into surgery on Wednesday in the morning. Everything went as expected and a sample was collected. No complications.

I spent the first night after surgery in an ICU. In the wee hours of the morning, I listened to someone pass away in the room next to mine. Their family kept crying out in anguish. I never saw a thing, but heard it all. I felt so deeply sad for them.

Beyond that, I’ve been recovering well. After another two nights in a regular hospital room, I was released. I take around nine medications a day plus a protein shake. I have one of those sectional pill boxes.

It took about a week for my brain tissue sample to go through a series of tests called “stains”. We got the results on Wednesday, Dec. 28th.

The outcome is that I don’t have GBM or any form of lymphoma. I have a highly malignant cancer in my brain called small-cell carcinoma (SCC).

SCC is generally lung cancer to start. Having it in my brain would generally mean that lung cancer has spread there. That said, PET and MRI scans don’t show any signs of cancer in my lungs or anywhere in my body beyond the brain.

For what it’s worth, I have zero history of cigarette smoking and a limited history of cigar smoking that ended almost a decade ago. It’s all very strange.

My case has been called “rare” and “unique” by my doctors. (I’m trying to take some bizarre pleasure in this.) They think one of two things is happening.

The less-likely option is that the SCC came into being in my brain directly, rather than migrating from elsewhere. Though, I’m told many experts believe SCC cannot actually do this.

The more likely scenario is that I have a trace amount of SCC somewhere in my lungs, prostate, gastrointestinal system, or lymph nodes. It isn’t yet causing problems there, but has managed to give SCC a migration path to my brain.

Originally, the plan had been to allow my brain to heal for some number of weeks after surgery. I would have then pursued whatever chemotherapy or radiation treatments were needed. The SCC diagnosis has meant rapid acceleration of treatment.

I did my first four-hour chemotherapy and immunotherapy treatments with an oncologist on Thursday morning. A shorter chemotherapy session happened this morning and another will happen on Tuesday morning. (I’m also getting the sticker patch removed from the left side of my head on Jan. 5th. This will allow the purple dye to gradually drop away from my scalp and my eventual scar to show.)

I will likely need six cycles of this three-week process. Each cycle is three treatment days, around 2.5 weeks of rest, and repeat. So, this will be life for the next 18 weeks or so. I will do treatments in Singapore and resting at home in Jakarta.

The hope is that these treatment cycles can get me into a remission state. If that happens, I would likely stay on immunotherapy but stay off chemotherapy unless the SCC shows back up with testing.

I’ve decided to be very open and honest with everyone considering my prognosis. Again, please read only what you are comfortable reading here.

Within a few months, chances are decent that I can get into a period of SCC remission and enjoy some U.S. time with family and friends. That is very much my near-term goal.

Longer-term, SCC tends to come out of remission. It finds ways around existing treatments and it grows. My current prognosis is roughly one year.

That said, I plan to fight as hard as I can. I will try every reasonable medical option possible. Many loved ones have shared inspiring stories about how well and long people can live with cancer. I hope to be one of them. I will continue to post updates here as I have them.

As with my earlier post, I want to thank everyone for their continued messages of love and support. I promise I read every one of them and am always touched by them. Please know that I feel your love and I love you back.

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 or 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 said 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.

Baring 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 right now. 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!

I’ve had a rough few weeks health-wise. It’s been exhausting at times. Last night, the universe, for some reason, gave me a moment of pure delight when I wasn’t expecting one. I am grateful.

I’m in Singapore and wanted to treat myself to a nice dinner. I decided to see what vegetarian restaurants were near me. As luck would have it, I came upon LingZhi online.

The 31-year-old gourmet Chinese restaurant’s philosophy:

Gone are the primitive, conservative style of preparing vegetarian dishes with gluten, mock meats, artificial colouring, and additives. In its place, is a range of dishes filled with wholesome goodness, and tonifying fare prepared from the finest, freshest natural as well as organic ingredients.

LingZhi has won the Restaurant Association Singapore’s Epicurean Star Award for Best Vegetarian Restaurant multiple times, including in 2021 and 2022. I wasn’t sure I could get in without a reservation, especially on a Saturday night during the holidays. They opened at 6 p.m. and so I got there shortly after that to try. The place was already packed, with every table and chair I could see taken.

The incredibly kind host told me that the LingZhi was fully booked. But then, she eyed me closely and noted that I was just one person. Would I be willing to have a single table and chair set up in the lobby of the restaurant under its lighted sign and eat there? Without blinking, I said that sounded lovely.

I then asked her which of LingZhi’s tasting menus was her favorite. She laughed and said her two favorite dishes are on Tasty Menu B.  Without blinking, I said that sounded lovely too.

Some scrumptious appetizers arrived almost immediately and I loved all of them.

Even better was my lobby location. I saw family and friends greeting each other before their holiday dinners and saying goodbye at the ends. Many of them would hug deeply, clearly reuniting after time apart or separating again for a while. I also had multiple parents chat with me in the lobby while they rocked crying babies on their shoulders and hips. It felt like I was in a special place.

The main dinner courses then started to arrive one by 0ne.

Alas, I forgot to take a photo of “Assorted Vegetables served in Yam Ring.” Must have been to0 focused on munching!

Many of the customers clearly knew the staff well. This is a restaurant that has had regulars for decades, and the convivial vibe of it all is impossible to capture with words. (I didn’t take any photos of people, as I didn’t want to impose on anyone.)

My tasting menu dishes got crossed off one at a time until I was happily sated.

I gave my profound thanks to the staff. They were kind to me in a moment when I really needed kindness. They gave me one of the best meals of my life. I will definitely be back.

If you’re ever headed to Singapore you should try LingZhi. Try it even if you aren’t vegetarian. Try it even if you aren’t allowed to sit in the lobby.

Seeing this from my hotel room window in Singapore made me smile!

I’m back with an update to my previous posts about my medical situation.

I’m back with an update to my previous posts about my medical situation.

If hearing about other people’s medical stuff isn’t your thing, you won’t offend me by skipping this. I find writing and sharing my thoughts here mentally helpful. However, I realize this won’t be everyone’s cup of tea.

I’ve seen two neurologists in Jakarta and had MRI, EEG, and TCCD tests. Both neurologists agree that I’ve had a mini stroke. The M1 segment of the middle cerebral artery on the left side of my brain has blood flow that is too rapid. This is likely because of blood clotting from the mini stroke that is partially obstructing the artery. The cause of the mini stroke remains unknown. I continue to not have any identified major risk factors for strokes.

The blood clotting and rapid blood flow have led to brain tissue swelling in my left hippocampus and my inferior temporal lobe. This swollen lesion is causing periodic brain seizures that both neurologists qualify as partial epilepsy.

The seizures make me feel extremely lightheaded, make me smell intense rancid odors that aren’t real, and sometimes lead me to hyperventilate. (Perhaps the hyperventilation is more of a reaction on my part. I’m working to see if I can control it.)

I’m now on two anti-seizure medicines and a brain health supplement. (The supplement is from China, is popular in Asia, and is unapproved by the FDA for sale in the US. Such fun.) These meds have gotten me down to roughly one seizure every two days. This is much better than the 1-2 seizures per day I was having before the meds. My hope is that they will continue to reduce seizures as they build up in my system.

I was also on a vasodilator medication for three days to try and help clear the artery. The vasodilator led to crushing pain in my head, neck, and shoulders. I often couldn’t sleep and at times vomited. It would appear my blood vessels do not enjoy being dilated. I will shortly be trying Aspirin 81 instead and seeing how that goes.

I will likely need to be on medications for years or perhaps for the rest of my life in an attempt to clear the artery and suppress the seizures. No operation is likely possible given that the artery is very small and located deep in my brain.

On Saturday, I will be seeing a third neurologist in Singapore. He is insanely credentialed all over the world and even has connections to Duke University. I don’t know if he can help me any further. But, I’ll be glad to get a third opinion before the holidays hit.

Mentally and emotionally, I’m actually in a better place than I would’ve expected. I’ve been very impressed with my doctors. We are making progress with meds to reduce my seizures. I’m looking forward to the Singapore consultation. And, I’m excited to get to the US soon to see some family and friends over the holidays.

I again want to thank my amazing wife, my incredible family, and my awesome friends for being so supportive of me during this period. Your check-ins and kind words have continued to mean the world to me. I remain lucky to have you all. I will continue to share more updates here as I have them.

Just listened to Siri read someone’s Wordle solution in Messages emoji by emoji. That was something.

Medical Updates

Since my original post about my weird medical issue, I have some updates to share.

Since my original post about my weird medical issue, I have some updates to share.

• A neurologist says the “episodes” I’d been having 1-2 times per day were brain seizures. I suspect my more medically-knowledgeable readers had already figured that out.
• I’ve now been on an anti-seizure medicine (Keppra) and a brain health supplement (Neuroaid II MLC 901) for 2.5 days. Very happy to report I’ve had no seizures since starting the meds. I’m also sleeping incredibly well and wake up feeling deeply refreshed. So, I’m a big fan of the meds.
• The seizures were likely caused by the lesion affecting my left hippocampus and my inferior temporal lobe. If we can make the lesion go away, then the seizures will likely stop without the meds.
• The cause of the lesion remains unknown. Such lesions are generally caused by high blood pressure, diabetes, smoking, or Long COVID. I don’t have any of those. To my knowledge, I’ve never had COVID at all.
• I went in for an electroencephalogram (EEG) on Friday afternoon. I will meet with the neurologist on Wednesday to review the results and discuss any next steps.
• In two weeks, I will have a Transcranial Doppler ultrasound scan. The neurologist wants to give the meds some time to stop the seizures and see how that affects the lesion.
• I head to the United States in three weeks for the holidays. So, I will start digging into all of this there if I haven’t been able to find a solution in Jakarta.

I want to thank my amazing wife, my incredible family, and my awesome friends for being so supportive of me during this period. Your check-ins and kind words have meant the world to me. I’m lucky to have you all.

I will share more updates here as I have them. It will likely be at least Wednesday before I have more news.

I have been a vegetarian for two years as of today!

Love the album Panamá 77 by Daniel Villarreal. Different from anything else in wonderful ways.

The leap second is being scrapped and Meta has a new open-source timing protocol in its data centers.

Kinda fascinating to see so much time-related news in one day.

My Incredibly Weird Medical Issue

It’s been a strange couple of weeks.

My Incredibly Weird Medical Issue

I’m 48 and have generally been a healthy person. I don’t deal well with discomfort or medical issues. So, apologies that I’m being indulgent with this blog post. I’m grappling with a new, weird medical situation, and writing about it is therapeutic for me.

I’m 48 and have generally been a healthy person. I don’t deal well with discomfort or medical issues. So, apologies that I’m being indulgent with this blog post. I’m grappling with a new, weird medical situation, and writing about it is therapeutic for me. If this isn’t your type of topic, you won’t offend me at all by moving on.

About two weeks ago, on a Saturday morning, I was getting ready to head to lunch with my wife and mother-in-law here in Jakarta. I had just brushed my teeth and went to gargle with some citrus-flavored Listerine. When I brought the open Listerine bottle close to my mouth and the scent hit my nose, it triggered what I’m now calling an “episode."

I smelled an incredibly intense rotten odor that wasn’t real. That odor was then coupled with a wave of dizziness and breaking into a full-body sweat. I had to lay down. After a few minutes, I felt better. Then, sniffing the Listerine didn’t provoke any response at all. It smelled perfectly normal.

Long story short, episodes like that one have continued over the past two weeks. They are no longer triggered purely by smell. They can come at any time of day. They can come when I’m physically active or when I’m sedentary. Sometimes, they are intense with rotten odor, dizziness, and sweating. Sometimes, I just suddenly feel like my whole body is tingly and that I’m a bit winded. My energy level drops significantly after each episode. It’s lovely.

I’ve met with a doctor and gone in for an MRI scan. The MRI has found two issues.

First, the mucosal linings of my sinuses have become abnormally thickened. This is generally caused by high blood sugar or a sinus infection. But, I don’t have either of those conditions. The cause of the thickening is currently unknown.

Second, I have localized swelling in my brain. There is a lesion affecting my left hippocampus and my inferior temporal lobe. In the vast majority of cases, this is caused by high blood pressure. But, I don’t have high blood pressure. The cause of the lesion is also currently unknown.

On Wednesday, I will be getting a Transcranial Doppler ultrasound scan. I will then be meeting with a neurologist to review the results and consider any possible next steps. I’m also starting to research medical options outside of Indonesia should I need them.

If you’ve read this far, thanks. It feels good to get all of this out.

The Surprisingly Sophisticated Mind Of An Insect

Amazing piece that explores whether insects (and many life forms) have their version of consciousness.

A rainy afternoon in Bogor, Indonesia.

Trying to decide if my complete lack of interest in Mastodon is healthy or a sign of age.

I was just thinking I’d like to hear some new Jazz and Apple Music immediately offered up a whole “Jazz Around the World” section. The day is going well!

Learning a lot about hip abduction and how very bad my hips are at doing it.

What Humans Can Learn From The Language Of Honeybees

This was an utterly fascinating article. I’m also intrigued by many of the articles from Noema Magazine, which I somehow managed to not know about until this week.

Just went through a day where any strong smell (mouthwash, coconut water, nachos) was suddenly making me feel incredibly dizzy and weak for several minutes. My sense is that I may have been hyperventilating a bit during those minutes. It was very strange. I think/hope I am better this morning. Tested with some strong odors and am normal so far. Wish I knew what this was and what caused it!

iOS Privacy: Instagram and Facebook can track anything you do on any website in their in-app browser · Felix Krause

This is really disturbing.