After a rich and so well-lived life, Marc LaFountain, 48, passed away on Friday, February 24 in New York City after a brief illness.
Born in Charlotte, North Carolina, to Keene LaFountain and Sara Taylor LaFountain, Marc attended Columbia, South Carolina schools, graduating from Irmo High School. Marc received his BS in Journalism, from the University of South Carolina in 1997.
Throughout his life, Marc made a huge impact everywhere he went. And he went everywhere. Marc expertly managed IT initiatives and the careers of support personnel across many technical disciplines for Capital One, Tumblr and Yeoman to name just a few. Marc not only had passion for the newest technologies, but also for people. He was a caring individual both personally and professionally. An enthusiastic technology devotee, one of Marc’s online profile descriptions says it best: “Technology Lover with a passion for communication / Communicator with a passion for technology.”
After marrying Francisca Rahardja, in Bogor, Indonesia, they became global citizens, traveling extensively and living in Richmond, VA and abroad in Switzerland and Indonesia. They were not only husband and wife but the most compatible of traveling companions – a perfect match.
Marc’s business accomplishments were impressive. What he’ll be remembered for, however, is his gentle spirit, intellectual curiosity, spot on conversational skills, interest in others rather than himself, and his kindness. Friends close to Marc counted him among their best and most trusted.
Marc is survived by his wife, Francisca Rahardja; mother, Sara LaFountain and father, Keene LaFountain of Columbia, SC and brother Kevin LaFountain and his wife, Christina LaFountain, of Johns Island, SC.
No public service is planned. If you would like to make a donation to honor and celebrate Marc’s life, the following charities were important to Marc: The American Red Cross, where he used to volunteer, the ACLU, and the ASPCA, where Marc and Francisca are monthly Guardians.
I am writing to thank everyone who took their time reading Marc’s blog, and in most recent months, followed his battle with cancer. I am grateful to have had Marc in my life. He has brought me so much happiness, love and kindness. I can truly say that he is my soulmate and the love of my life. There are no words to describe my loss and how much I miss him. And while I try to continue living my life, there are moments when I’m so devastated. And it would hit me at the most random times. Like when I saw a video on YouTube that I thought he might like. When I was walking through Grand Central Station appreciating the energy of New York. When I ate lunch at Chipotle and there was nobody to share my chips and guacamole with. I’m starting to realize that it’s these little things that I would miss about him. Feeling his presence and sharing my life moments with him, no matter how big or small.
Throughout his illness, I have been waking up every morning hoping it was all a bad dream. I always realized the severity of his condition, but told myself that miracles DO happen! And no matter what condition he’s in, I will be there for him.
Over the last few months, I have seen Marc’s condition deteriorate in front of my eyes. I felt helpless, yet at the same time, always knew that I did everything I could to help him. Despite his confusion, loss of memory and pain, he would tell me that he loved me. He thanked me for being there for him, for taking such good care of him. He smiled when he saw me. And I would tell him that I loved him so much, and that he’s the best part of my life. I thanked him for sharing his life with me, for always being there for me and for loving me. These exchanges made me so happy, yet at the same time, they broke my heart.
Marc lost his memory gradually in the last few weeks of his life. The doctors would do neurological tests by asking questions such as his name, date of birth, what date it was, and where he was. What I found interesting was that he would often think that he was anywhere but New York! He answered Barcelona, where he spent some time working. Johannesburg, where he traveled. Jakarta, our place of residence. Bangkok, where we spent time visiting Jerry and Maxine. Cary Town in Richmond VA, and several other places. While I was extremely sad to see this, it also reminded me what a rich life he led. He lived life fully, and traveled the world.
When we took our vows, we said that we will be there for each other, in sickness and in health, ‘til death do us part. I never thought that it would come so soon. I miss him terribly, and feel that a part of me died with him. At the same time, I also know that he will always be a part of me. Before his memory loss, we’ve said everything to each other. We both knew how much we loved each other, how much we appreciated the time that we had together, and how lucky we were to have found each other. I tell myself that Marc would want me to live my best life, no matter what happens. So that’s what I will do for him, and for myself.
Most importantly, I’d like to thank everyone who have supported Marc and me - our family, friends and colleagues who have done the utmost to be there for us during a very difficult time. My sincere thanks to Jerry Margolis who wrote the final chapter on Marc’s blog, and Steve Peterson who authored Marc’s obituary.
I hope we will all remember Marc fondly. May he Rest in Peace.
Marc was a man committed to his love of communicating, particularly writing, and always finishing what he started. Whether that be his published mystery novella or completing the latest season of whatever he was streaming. Sadly, he never had a chance to finish the blog he started to share his battle with cancer. It is with a heavy heart that I will do my best to match his charm and wit telling his final chapter dealing with the deadly brain cancer that ultimately took his life.
Marc posted his last blog on January 19th, sharing that the diagnosis in Singapore was not good and he and Francisca would be relocating to New York City seeking treatment at Memorial Sloan Kettering. The flight to New York was not easy as Marc was very uncomfortable from the chemotherapy/immunotherapy he received in Singapore, and the fact that the cancer had spread to his spine. Despite the difficulty traveling and the many twists and turns in his diagnosis and treatment, there was hope and optimism that the experts at MSK and being close to family and friends would bring good news. Things appeared to be coming together in New York upon their arrival. Stacey Kennedy and the PMI team were uber helpful arranging a corporate apartment, a MSK specialist was identified, and an appointment at MSK was scheduled. Additionally, Marc’s family from South Carolina settled into NYC to support him and Francisca. This included his brother Kevin, sister-in-law Christina, and of course his parents, Sara and Keene.
It was January 25th when things unfortunately started to go downhill. That night, Marc experienced a tremendous amount of pain and was rushed to NY Presbyterian Hospital in the middle of the night. It turned out he had a seizure, and they would need to operate to release the swelling in his brain. They also took a second sample, hoping to nail down a diagnosis so that proper treatment could begin with MSK. After a few days in the hospital recovering from the surgery, Marc and Francisca returned to the corporate apartment and waited for their first appointment at MSK.
Unfortunately, on February 3rd just a few hours before the appointment could take place, Marc was back in the NY Presbyterian ER as he experienced confusion, was in severe pain, unable to sleep, not stable on his feet, and his wound from the second surgery was causing problems as it wasn’t healing. During his stays in hospitals, Marc’s physical and mental state altered dramatically. There were many times Marc was completely cognizant, able to talk and laugh with visitors. At other times, the disease took all his energy, and he spent large amounts of time sleeping. Fortunately, while he knew he was in the hospital, he was largely unaware of his illness and its severity.
Marc stayed at NY Presbyterian for over a week recovering until he was strong enough to be moved to MSK. Finally on Feb 9th he was admitted to MSK and began radiation treatment on the cancer in his spine. While the outlook was uncertain, there was reason for optimism as Marc had an appointment in New Jersey with the proton radiation center to get the much-needed treatment on his brain. On Feb 17th, he and Francisca went via ambulatory taxi to NJ to determine if Marc was a candidate for this groundbreaking new treatment. The appointment went well, and treatment was scheduled to start the next week. Sadly, things quickly began to unravel. The next day, the doctors at MSK determined that Marc’s tumor was continuing to grow and there was now a second brain tumor which was causing bleeding in the brain. They also concluded that proton radiation at this point would only make him worse. The doctors determined there was nothing they could do to treat his cancer, and they would do their best to manage his pain and make him comfortable. Shockingly, they said he would survive no more than two weeks. For Francisca, his family and friends, this news was both devastating and surreal. How could someone so full of life and love so quickly see their life and dreams be altered by illness? The prognosis was correct, as sadly, Marc passed on February 24th around 3:30 am. The cancer that Marc had was very rare and difficult to diagnose. Even at the writing of this blog, none of the doctors could determine what it is and how to treat it other than through radiation. This includes the doctors and two pathologists in Singapore, the pathology teams at NY Presbyterian and Memorial Sloan Kettering.
The love for Marc and Francisca was evident during their time in New York. Marc’s family, friends and relatives came to support them during this trying time. Norma and Jeff Drew came from Switzerland and spent over a week doing everything from visiting Marc, feeding Francisca, getting Marc his much loved lunch from Chipotle, bringing him a cannoli which is one of his favorite things, and pushing a wheelchair loaded with belongings 10 blocks down the streets of Manhattan. Marc’s cousins Jeff, Andy and his wife Christine, Leigh, and Amy came to visit him in the hospital along with friends including Jim from Michigan, and Ellie and Tony who came from Virginia. Maxine Margolis came from Florida and spent a week comforting Marc in the hospital, staying with Francisca in the apartment, and helping her through the most difficult days, including being with her when she received the final call from the hospital. Francisca’s brother Adrian was delayed due to Covid, but came from California with his family, and was also there when Marc passed. Ex-Altria colleague Kent Zerangue runs an organization for cancer patients and their families and sent homemade goodies and vegetable soup. Stacey Kennedy and the PMI team helped expedite and navigate insurance and logistics challenges and came through with not just one corporate apartment but a second one closer to the hospitals. Additionally, Philip Morris’ Doctor, Steve Schneider, and Norma’s friend from NY Presbyterian, Doctor Steven Kaplan, helped facilitate and accelerate care and appointments. Friends from Richmond helped Francisca after Marc’s passing. This included Ellie and Julia who helped Francisca with the many things that needed to be taken care of after someone passes away. Veronique who lives in New York, is also there for Francisca while she is dealing with Marc’s situation. Countless others sent flowers, prayers, messages, and calls to offer support to both Marc and Francisca.
Throughout his life, Marc was always a great and constant storyteller. His blog brought us along with him on this unexpected, unwelcome and heart-breaking journey. We all hoped and prayed for a different outcome and are still in shock and disbelief by his sudden passing.
Marc was cremated and Francisca will bring his ashes back with her to Indonesia. Per his request, there was not a memorial service. We can, however, honor Marc’s life by supporting the charities that were important to him. This includes the American Red Cross where he volunteered, ACLU, and the ASPCA. In my many conversations with Marc during this tragic experience, he thought and talked mostly about his worry and concern for others, mostly Francisca. She is managing through the grief with support from friends and families.
I always thought Marc was a “maven”. He was always seeking, obtaining, and then sharing his insights and knowledge on everything from technology, TV shows, reading magazines to financial services. He was super fanatical about so many unique life experiences and passions. He always had the latest iPhone and everything else that Apple produced. My personal Wise, LINE2, Apple One apps along with watching All of Mankind were a few of the most recent things Marc converted me to using. I am sure all of you reading this have some gadget, podcast or TV show that was influenced by Marc. He also had a unique approach to fashion! I will always picture Marc wearing tan khaki pants and a plaid shirt unless he was wearing a Camel Active polo! His strong views on everything from politics to kettle bells to food to the madness of living in Switzerland made every conversation, every text and every email memorable. Always with a smile and a witty comment, I can honestly say I loved Marc, and he was man enough to tell me he loved me too. We will all miss him, will never forget him, or the impact he had on our lives. If there is one lesson we can take from his illness and passing, it’s to be grateful for the things we have in our lives as it can all be quickly taken away.
As a footnote, if you haven’t read Marc’s novella, you can find out how to access it at
I’ve now learned that a cancer diagnosis isn’t always correct or final. It can change. And, sadly, it can get worse.
You may think you have a glioblastoma, but you don’t. Next it looks like a lymphoma, but still nope. Then, a pathologist determines it’s Small-Cell Carcinoma (SCC). So, you engage in some fairly unpleasant immunotherapy and chemotherapies in Singapore, begin to lose your hair, and start to have your doubts.
As I’ve mentioned earlier, SCC is generally lung cancer to start. Having it in my brain would generally mean that lung cancer has spread there. That said, scans still didn’t show any signs of cancer in my lungs. It still looks like my cancer has somehow started in my brain and now started to spread elsewhere.
For what it’s worth, I have zero history of cigarette smoking and a limited history of social cigar smoking that ended almost a decade ago. It was all very strange. It was so strange that we paid a second pathologist at a second Singapore lab for his opinion.
The second pathologist has said two things:
He cannot determine my specific type of cancer beyond an umbrella family called Small-Blue-Round-Cell Tumor (SBRCT). This is challenging, as I cannot engage in specific immunotherapy or chemotherapy unless I have a specific type of cancer to target. (I do kind of like that my cells are blue, though.)
He also considered it highly unlikely I have the SCC type of cancer I was being treated for. He would appear to be right about that.
I have done another MRI. Despite starting immunotherapy and chemotherapies for SCC, my brain tumor has grown significantly, “dots” of cancer in my brain have grown too, and I also have the lovely new development of cancer spreading from my brain to my spine. None of this aligns with my SCC drugs being able to tackle the SCC I was thought to have.
The spreading of my cancer to the spine is part of a lovely condition called Leptomeningeal Disease (LMD).
LMD is a rare complication of cancer in which the disease spreads from the original tumor site to the membranes surrounding the brain and spinal cord. When I say “rare,” LMD occurs in approximately 3-5% of cancer patients. I’m still a special snowflake, folks.
The prognosis for LMD is generally poor, with survival typically measured in 2-3 months. Six months is generally considered the most that can be expected.
Death from LMD is generally due to progressive neurological dysfunction. I’m someone who has never felt tall, strong, or athletic. But, I’ve always loved being a thinker, planner, reader, writer, etc. So, I will admit neurological dysfunction ranks low on the ways I would like to go.
The only good option in Singapore for me right now would be radiation therapy. But, radiation is very hard on the body. Also, we would need to use radiation on my spine. This would likely leave me unable to use treatments like chemotherapy down the road that depend on healthy bone marrow for immune system function.
So, we are dropping everything and relocating to Manhattan on Friday. We have been in touch with Memorial Sloan Kettering Cancer Center (MSKCC) for some weeks now. It is our hope to engage with them quickly on any advanced options they may have.
For one potential example, MSKCC has the New York Proton Center. It may be that proton therapy could provide very targeted radiation treatment. (Proton technology will come to Singapore very shortly. But, it’s not quite approved here yet.)
Obviously, this is hard news for me. I continue to appreciate the amazing support I’m getting from my wife, Francisca. She has been incredibly strong and resourceful throughout all of this.
I appreciate the amazing support I’m getting from my parents, brother, sister-in-law, extended family, and numerous friends. Your support continues to mean more to me and Francisca than I can express.
So, that’s my latest update. I will continue to keep you updated here as often as I’m able. As always, my deep thanks for all of your love and support.
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.
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.
My table for one in the lobby
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.
Dishes for Tasty Menu B.
Some scrumptious appetizers arrived almost immediately and I loved all of them.
NutsOther Appetizers
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.
Mango Salsa wih Crispy Rice CakeBraised Vegetarian Bird’s Nest and Winter Melon Topped with Bamboo Shoots
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.)
Steamed Glutinous Rice with Black TruffleAlmond Cream with Peach Gum
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.
I’m back with an update to my previousposts 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.
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’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.
