
My journey with a craniopharyngioma started in the fall of 2021, shortly after the birth of my fourth child.
I felt constantly exhausted, gained some weight, and assumed it was just life with a newborn. Labs obtained to investigate these symptoms demonstrated a low testosterone level, which ultimately led to the diagnosis of a craniopharyngioma—a rare, benign but locally aggressive brain tumor. In February 2022, I underwent a complete surgical resection. The results were excellent: we got all of the tumor and my pituitary function was mostly intact (I only needed testosterone and levothyroxine replacement), and while I had a temporary third nerve palsy, it resolved within six months.
My surgeon and I both believed I was cured. Multiple clear MRIs reinforced that belief, and I moved on with life, grateful and optimistic. I even shared my story on a White Coat Investor podcast episode, certain it was now just a chapter from the past.
Fast forward to the summer of 2025. I started feeling . . . off.
It was nothing dramatic at first—just lower energy and a vague sense that I wasn’t at my best. Then, I noticed I was urinating more often than usual and feeling a little thirstier than normal. I chalked it up to summer heat or a busy schedule.
Still, I decided to get some labs checked. Around the same time, I realized my vision was a little blurry. Visual testing revealed a classic pattern of bitemporal hemianopia—loss of peripheral vision on both sides. That prompted a mad dash to get an MRI.
The result was a gut punch: my craniopharyngioma had returned. And this time, it was even larger than before.
Over the next week, the picture became even more complicated. My pituitary function had completely failed. On top of the testosterone and levothyroxine I was already taking from my initial surgery, I now had diabetes insipidus and adrenal insufficiency. I would need to replace every pituitary hormone—likely permanently—and carefully manage how much I drank, which activities I did, and how and when I adjusted my steroids and DDAVP.
I quickly weighed the option of repeat surgery, but the risk of significant morbidity with a second operation was much higher—and the odds of completely removing the tumor without recurrence were much lower. In the end, I started targeted BRAF and MEK inhibitor therapy—essentially an oral form of chemotherapy. And just like with everything else, I imagined the worst: constant side effects, feeling terrible all the time, and barely functioning.
Yet so far, a few weeks after my diagnosis, it hasn’t been that bad. Yes, there are side effects, but it's been nothing close to the day-in, day-out misery I pictured. It was another reminder that, whether in health or finances, our minds are quick to imagine the bleakest possible future—and slow to remember our capacity to adapt.
The Anticipation Was Worse Than the Reality (So Far)
In those first few days after the second craniopharyngioma was discovered, my mind went to dark places. I pictured a future where my life was fragile, limited, and dominated by medical management with constant worries about sodium levels, fluids, and steroid dosing. I imagined possibly losing my vision entirely, being permanently disabled, and never again doing the things I enjoy—always tethered to my disease. It was the same way we sometimes imagine that a job loss, market crash, or divorce will ruin us forever.
There’s no denying that my life has shifted in fundamental ways. But to my surprise, the reality—while difficult—hasn’t been as bad as I feared. Even the targeted therapy I dreaded has been manageable. And that’s brought me back to a concept I’ve written about before: hedonic adaptation.
Hedonic Adaptation: The Underrated Good News
Most of us are familiar with hedonic adaptation in its “good news fades” form. You buy a new car, land a dream job, or move into your ideal home. You’re happier . . . for a while. Then, you return to your baseline.
As is often discussed on The White Coat Investor, this plays out all the time in medicine. New doctors—actually, not just new doctors, but doctors at all stages—often make large lifestyle purchases after an income jump, expecting a lasting boost in happiness. It might be a bigger house, a luxury car, or a dream vacation. But the bump in happiness is fleeting, and they quickly adjust to their new lifestyle. That’s one of the reasons Dr. Jim Dahle and others advise physicians to increase their spending slowly, allowing their financial position to strengthen while avoiding the trap of perpetual lifestyle inflation.
But there’s a lesser-known flip side: the same adaptation works in reverse. Bad things also fade in their emotional impact. We fear they’ll make us miserable forever, but our emotional set point pulls us back faster than we expect. I’ve experienced this in other seasons of life, too—including walking through a divorce I wrote about in a previous column—and in time, I found that life could be full and meaningful again.
The psychology literature backs this up. In one famous study, researchers compared the happiness of lottery winners and people with recent spinal cord injuries. Within a year, both groups’ happiness levels had drifted back toward baseline. Other studies have found the same pattern after divorce, job loss, and serious illness.
Of course, not every hardship fades completely, and some losses permanently change our day-to-day lives. But even then, our minds are remarkably good at finding a new normal.
More information here:
Will More Money Make Me Happier?
My Adaptation in Real Time
As I write this column, I’m still very much in the middle of this. The first days after the diagnosis were every bit as intense as I imagined—fear, sadness, anger, and uncertainty all hitting at once. The emotional weight was heavy, and it still is. But something unexpected has already begun to happen. I’ve felt the earliest signs of drifting back toward my baseline.
Managing the panhypopituitarism, which I pictured as a constant crisis, hasn’t been as bad as I thought. Hormone replacement is becoming more routine. Even the targeted therapy I thought would leave me sick and debilitated has been tolerable so far. It’s still a lot to carry, and I know there will be rocky roads ahead, with possible setbacks and surprises.
Yet the intensity of those first emotions has already begun to fade. The day-to-day management feels a little less overwhelming than I feared. Alongside the psychology of adaptation, I’ve also found hope in my faith in God, which anchors me through uncertainty, and strength from the love and support of family and friends. Life still has weight, but it also still has joy, purpose, and moments of normalcy—and that’s something I didn’t expect to feel so soon.
Why This Matters for Money and Medicine
For Your Finances
We make the same mistake when imagining financial setbacks. We picture losing our jobs, facing a market crash, or even becoming bankrupt, and we imagine being miserable for years. The reality is usually different. We adapt, find new paths, and reestablish a new normal. Knowing this can help you take calculated risks—changing jobs, starting a business, or retiring early—without being paralyzed by fear of the “what ifs.”
For Medicine
As physicians, we’ve all seen patients adapt to unimaginable diagnoses or life changes. Yet in the exam room, newly diagnosed patients often believe their lives are permanently diminished. Before my recurrence, I understood the psychology of hedonic adaptation from an academic perspective—especially its “good news fades” side. But living through a major health setback myself has given me a much deeper, experiential understanding of its other side. It’s one thing to cite studies about resilience; it’s another to feel that slow but steady pull back toward emotional baseline in your own life.
That experience has deepened my empathy for patients in the raw early stages of grief or fear, and it allows me to offer them something more than theory: the lived assurance that while the road may be hard, life can become meaningful, joyful, and even unexpectedly normal again—and often sooner than they imagine.
More information here:
Financial Lessons Learned from a Doctor Turned Patient
How My Recent Brain Tumor Diagnosis Made Me Reevaluate My Finances
Why I’m Writing This Now
I’m writing this about two weeks from my diagnosis—not because I’ve “figured it all out,” but because I need this reminder myself. I want to plant a mental flag in the ground that says, “You’re overestimating how bad this will be.” Writing is, for me, an act of hope. And if it helps me, maybe it will help you—whether you’re facing a financial setback, taking on a personal challenge, or helping a patient navigate their own.
I’m still in the middle of uncertainty. My tumor is still there, and my medications are permanent. I don’t know what the future holds. But I’m already finding myself closer to my baseline than I ever would have predicted in those first awful days.
You’re more resilient than you think. And when the worst happens, there’s a good chance it won’t be as bad—or as permanent—as you fear.
Have you experienced the hedonic adaptation in reverse? How long did it take you to return to normal? Is there some comfort that it can and will get better?
Among my age group, resilience wanes; older male adults tend to have higher rates of suicide, although they represent a low percentage of the total number of suicides; declining mental and physical health, loss, loneliness all factor in as well as the simple inability to navigate a complex health system or even make appointments on-line. It is one thing to be resilient when one is young, with good insurance and a good support system; it’s an entirely different thing when one is elderly and alone. Overall in the US, suicide is a major cause of death, the literature backs up declining health as a major risk factor for older males.
Will, thank you for sharing this. I don’t know your story, but I can only imagine you may be speaking from some hard-won experience. You’re absolutely right that aging brings real loss—declining health, loneliness, and the difficulty of navigating a complex and often unforgiving system. I have not walked that road myself, but watching my father live with Parkinson’s has given me something of a front-row seat to those realities, and I don’t mean to minimize them in any way.
At the same time, it’s striking what the research shows: across large population studies, older adults in America often report greater happiness and life satisfaction than any other age group. There’s a well-documented U-shaped pattern—higher happiness in youth, a low point in the 40s and 50s, and then a surprising rebound in the 60s and 70s. Despite the real physical and practical challenges, many in that later stage report more gratitude, more positive affect, and a deeper enjoyment of life.
Part of the explanation seems to be relationships—loneliness is devastating, but strong social connections are powerfully protective. And part of it seems to be perspective: while resilience in the sense of overcoming obstacles or navigating complex systems may wane, the ability to appreciate life in spite of difficulty often grows stronger. That’s a paradox I find both humbling and hopeful.
When I consider disability or inconvenient conditions I sometimes back up to “I’ve never been able to fly like a bird or swim like a fish, we were born disabled in that realm” and then smaller issues like a multicompartment medicine box or my age and chronic illness induced changing bodily functions dwindle in impact.
Nice post that appropriately helps me adjust my attitude and not just in the ‘gee it could be worse’ vein.
Thank you for the post.
I originally wrote this article about a month ago. As of today, the day it’s being published, I’ve now been on targeted therapy for about six weeks. Two weeks ago, I had my first MRI since starting treatment, and it showed the tumor had already shrunk by 70–80%—about as good a response as we could possibly hope for. Even more encouraging, my vision is entirely back to normal.
I still have panhypopituitarism and continue to manage all that entails, but in keeping with the theme of this article, the day-to-day reality hasn’t been nearly as bad as I feared. I’ve been able to return to the normal rhythms of life relatively well. The plan is to continue this therapy for at least six months—likely longer depending on side effects and how much the tumor continues to shrink. Radiation may still be needed on the back end, depending on what residual tumor remains, but that remains to be seen.
Because these tumors are rare, there aren’t large studies or clear protocols. I’ve had to reach out to experts around the country and, in some ways, function as my own physician to chart a reasonable course. That experience has made me grateful for the advantages of being a doctor and knowing how to navigate the system—advantages many patients unfortunately don’t have. That may be a post for another day.
As for side effects, I’m experiencing some myalgias, arthralgias, and lower energy, but overall I’m tolerating the medication relatively well. I just wanted to provide this update for anyone interested in where things stand today.
Josh, I’m happy to hear that the treatment worked well and that your vision’s back to normal.
Thanks for the update Josh. And thanks for the open and insightful post.
Thank you for article and best of luck. Hope you continue to do well.
I was diagnosed 2018 with Parkinson’s disease. My symptoms progressed quickly. Soon i was having difficulty sleeping, speech and even walking short distances. With the help of the PD-5 treatment I have been able to reverse my symptoms using diet, herbs, which i feel has made the most difference. The PD-5 treatment has immensely help overturn my symptoms, since I started the PD-5 treatment my slurred speech and especially the tremors gradually disappeared. it’s has done me a lot of good in terms of balance and ability to walk and get up from chairs. Google Uine health centre DON’T GIVE UP HOPE!!!
One thing I think we don’t consider is that as each thing passes, it makes us more resilient. I had cancer in my early teens (back in the early 80s) – Ewing’s Sarcoma. Having survived that has given me more insight into how I will react.
Sadly, there are people are destroyed by even less tragic events and never emotionally recover, even at a younger age.
I have a story similar to yours. I was misdiagnosed my first brain surgery and a year later after a second emergency brain surgery, they found I had a highly aggressive papillary craniopharyngioma that is rare in that it is purely cystic without any mass portion. It started growing back within a month after my second surgery so I too did as much research as possible- contacted every expert in craniopharyngiomas. I went to UCSF, Stanford to meet JFM and he referred me to Mass General’s Dr. Priscilla Brastianos (the oncologist that found that BRAF MEK works on these tumors). After flying to Boston and getting all the information on the inhibitors, I started dabrafenib and trametinib in January 2025 at UCSF. It didn’t work for the first four months but then we started to see shrinkage. Now it’s barely visible on a MRI. I am not having any side effects (the first couple months I had minor side effects). I plan to stay on them as long as I can. It was really scary to find that not many oncologists have the correct info on these drugs and I had to educate myself in neuro oncology and neurosurgery while having a brain tumor. Originally when I was at Kaiser, I was flat out denied when I asked my neurosurgeon about these drugs and had to fight just to get a referral to an oncologist.
I agree when you say “when the worst happens, there’s a good chance it won’t be as bad—or as permanent—as you fear.” After three recurrences and two brain surgeries within a year and a half I am still baffled that I am relatively physically unscathed (I still have full pituitary function). Yes, the PTSD and psychological effects take a toll but I know that I can get through literally anything now because I have been through literal hell and had my own mind taken away three times. In the worst moments, like hearing of recurrences, I just tell myself that this feeling is not forever or permanent and I know I will fight back with everything I have. Wishing you the best on your journey and that you may see the blessings that come from such great challenges.
My husband has Parkinson’s disease, adding PD-5 to his nighttime Parkinson’s meds has completely changed his sleep issues. He slept all day and up all night, we had to hire care nurses. Now using this PD-5 medicine for the last four months and a normal routine he sleeps almost completely through the night and may get up once to use the restroom. It’s improved so much we were able to let go of the night nurses. This medicine also helps a ton with memory. we got the treatment from [link removed]. I am absolutely confident that this program offers a viable solution. I hope someone find this helpful, We feel very fortunate to have learned about pd-5.
I know I’m a little late to comment here, but I just read this, and my heart sank for you at the same time as being inspired by you. I had a large pituitary adenoma that was resected in 2011, which left me needing to take steroids, thyroid, and reproductive hormone replacement. I also was so annoyed by it at first and worried it would be such a hassle with a busy, active lifestyle, but as you pointed out, the reality is not as bad as what I imagined. I love your point with this article that hedoic adaptation works both ways.
In the back of my mind, I’m always worried about recurrence of my tumor. I wish you good health and healing on your new journey. Please keep us updated!
Really glad to hear you’re doing ok, buddy!