How a Bizarre Most cancers Hit
One Younger Man Contained in the Head
Battling a Illness
With out Figuring out
What Actually Can Work
By Callie Fausey | July 11, 2024
It began with a headache.
Nick Fields was on a work-related Zoom name when, mid-sentence, he noticed the whites of his eyes all of a sudden flip bloodshot crimson. The accompanying ache struck like a lightning bolt — his head, he thought, was splitting open.
He shortly turned off his digicam earlier than falling to his knees and vomiting. “I would like a minute,” he choked out.
That was on March 7. At that second, his random, painful headache was simply that: a random, painful headache.
Nevertheless, earlier than the week was out, the 30-year-old UC Santa Barbara grad and longtime native would discover out that “dangerous headache” was truly a mind tumor the scale of a golf ball, and never simply any mind tumor, however one that might stump pathologists for months earlier than they may precisely diagnose it.
However whereas his case turned out to be an anomaly, it matches in with a wierd uptick of bizarre and uncommon cancers observed throughout the nation for the reason that starting of the pandemic.
Why Not Me?
“It felt like any individual hit me over the top with a baseball bat,” Fields informed me in April. “I by no means felt that ache in my whole life,” he mentioned, recounting the day the headache struck.
We have been speaking over espresso at Dune on State Road — nicely, truly, he was ingesting tea, as espresso is usually not really helpful for individuals recovering from mind surgical procedure. Half his head was shaved, exhibiting a brand new, question-mark-shaped scar.
With a placing lightheartedness, Fields shared the terrifying sequence of occasions that adopted that mysterious migraine. I needed to struggle again tears as this in any other case wholesome younger man informed me his story with none perceptible anger or frustration.
Fields was alone in Mammoth Lakes, renovating the condominium he and his girlfriend not too long ago bought, when he developed a extreme migraine. Initially, he thought it was altitude illness, and he drove dwelling to Santa Barbara — a “wild mistake,” he would later name it — however the headache continued regardless of how a lot caffeine or Tylenol he consumed.
After failing to sleep it off at dwelling, he went to pressing care, the place he informed them that he had altitude illness. They handled him however mentioned to come back again if the ache continued. Over the following two days, the migraine solely received worse. He received a CT scan.
Inside 24 hours, Fields had a neurosurgeon, underwent an emergency mind operation, and had the complete tumor eliminated.
“All of it occurred in a short time,” he mentioned.
However what Fields and his docs didn’t know was what to diagnose the tumor.
It was a hypochondriac’s worst nightmare: A extreme headache turns into an aggressive mind tumor — an especially uncommon, hard-to-diagnose tumor.
“The truth that I’m 30 years outdated and in good well being provides me the perfect likelihood,” he mentioned. “But it surely’s a extremely miserable factor to be informed at 30 years outdated that your time is proscribed.” Medical doctors couldn’t inform him if he would ever once more have the ability to work at his firm, Santa Barbara–based mostly startup Product Plan, or get pleasure from his regular life, browsing and enjoying drums in his tight-knit bands: Uncle Uncle and Pookie.
“Lots of people have mentioned to me, ‘It’s so not honest’ [and] ‘Why you?’ ” he recalled. “However I don’t suppose life is honest. I don’t suppose there’s a rulebook.
“My mantra has been, ‘Why not me?’ I’m higher outfitted to deal with this than another person. I’ve received a beautiful help system. … So, why not me?” he requested.
“I’m treating it as an opportunity to essentially take a look at life otherwise. I’m not blissful about it. However I’ve to seek out the silver linings the place they’re.”
An Absolute Mouthful
A tissue pattern was despatched to pathology labs to find out the kind of most cancers. However the tumor was so uncommon that docs struggled to categorize it; even after a month, all they may inform him was that it was a “high-grade glioma,” a really aggressive type of mind most cancers.
“The everyday outlook for somebody with a high-grade glioma is often brief, however for me, it’s all unknown,” he mentioned. “You don’t wish to be that individual. You wish to be the one that matches neatly right into a field that they know precisely the right way to deal with.”
Whereas the pattern was being handed round amongst a number of pathologists attempting to find out a analysis, Fields was beginning chemotherapy and radiation.
Courtesy
His docs wished to be “as aggressive as they may” to offer him his finest shot at remission. He was nauseated, in ache, and having seizures as a residual symptom of the tumor. He felt helpless.
“You’ll be able to think about the world of ideas, feelings, and questions I used to be in,” Fields mentioned. And on prime of that, he was recovering from mind surgical procedure, which is not any picnic. He needed to relearn to stroll and to do the only duties.
“Your emotional regulation is out of whack from the surgical procedure,” he added. “And there’s simply so many issues which can be unusual.” Uncertainty dominated his life. He was ready for a analysis that appeared increasingly terrifying day by day.
“It stumped us,” mentioned Fields’s Cottage Hospital nurse navigator Chelsea Brooks. “So, we despatched it to a extra specialised middle. And it stumped them.”
Ultimately, the information ended up in Maryland, within the fingers of the Nationwide Institute of Well being. Lastly, that they had a solution. His tumor was an anaplastic pleomorphic xanthoastrocytoma, “and sure, that’s an absolute mouthful,” he wrote in an electronic mail I acquired in Could.
For the readers not well-versed in medical jargon, this mouthful interprets to a high-grade, malignant, extraordinarily uncommon mind tumor. Fewer than one case per yr is reported in the USA. And an efficient therapy is just not well-understood. To place it bluntly, it’s a “you’re in all probability screwed” sort of analysis.
“We don’t see one of these tumor fairly often,” defined Brooks, who has been a nurse for greater than a decade. “In actual fact, he’s my first with one of these tumor. Usually, they’re seen extra within the pediatric world,” the place it extra generally impacts teenagers and youngsters, not males of their thirties. “To see this in somebody that’s a bit older has been fairly exceptional,” she famous.
‘My mantra has been, “Why not me?” I’m higher outfitted to deal with this than another person. I’ve received a beautiful help system. … So, why not me?’
Most cancers Will get Weirder
Whereas it has been a waking nightmare, Fields’s case is just not as stunning because it might need been just a few years in the past, pre-pandemic. Ever since COVID-19 battered the world, there was a global rise in uncommon cancers, a phenomenon mentioned in a Washington Submit article this June.
To discover how Fields’s case would possibly match these different bizarre cancers, I referred to as up Dr. Kashyap Patel, a previous president of the Neighborhood Oncology Alliance, a nationwide group of unbiased most cancers specialists. He and others in his area hosted a symposium a couple of yr in the past, exploring this rise in uncommon cancers.
The rise in aggressive, late-stage cancers for the reason that pandemic started is confirmed by “some early nationwide information and at various giant most cancers establishments,” in keeping with the Submit, although “many specialists have largely dismissed the pattern as an anticipated consequence of disruptions to well being care that started in 2020.”
Nevertheless, viruses have been believed to trigger or speed up most cancers for many years, and a few scientists theorize that power irritation ensuing from the COVID-19 virus might exacerbate the expansion of most cancers cells.
Patel, who works as an oncologist on the Carolina Blood and Most cancers Care Associates in Rock Hill, South Carolina, additionally thinks the consequences of COVID-19 might be cumulative in individuals contaminated a number of instances. Pandemic-related stress might also worsen irritation, including to the danger.
“As an oncologist, I’ve recognized that about, I might say, one in 5 cancers within the U.S. is linked to some type of viral an infection,” Patel defined. “So, there are tendencies observed prior to now with cancers. The factor that’s most worrisome is nearly each human being on Earth has had the COVID-19 virus.”
Others are skeptical, although, and counsel the rise in uncommon cancers might probably be on account of different poisonous stressors, akin to tobacco, alcohol, asbestos, or microplastics.
Nonetheless, a number of medical establishments — together with UC San Diego Well being — have compiled information exhibiting a rise in late-stage cancers for the reason that pandemic.
Patel was first struck by this harrowing pattern at a weekly lunch with oncologist colleagues in 2021. He was noticing uncommon and aggressive cancers in sufferers, and in sufferers youthful than he usually would have seen.
Patel was explaining how he had a 40-year-old affected person with a uncommon, deadly bile duct most cancers that usually impacts individuals round 65 to 70 years of age. He was stunned to study that his colleagues had additionally been seeing related instances. By the top of the yr, his workplace alone had recorded seven such instances.
Throughout our dialog, Patel famous the primary tendencies he has noticed: younger sufferers with very uncommon cancers, just a few sufferers with a number of new cancers within the two years post-COVID, just a few {couples} with new and uncommon cancers, and better numbers of recent, uncommon most cancers instances yr after yr since 2020. They’ve additionally seen 30-40 sufferers have a number of cancers, back-to-back.
“I work together recurrently with my worldwide colleagues in India who’ve seen related tendencies,” Patel added. “These are tendencies I’ve not seen in my 25 years of being an oncologist.”
The most typical major type of mind cancers in adults are referred to as glioblastomas. Earlier than the pandemic, Patel would see possibly one case each 5 years. Now, it’s extra like “three, 4, or 5” glioblastomas yearly.
There’s no query that Fields’s case meets the factors for “bizarre”: He has no recognized household historical past or genetic predisposition, his most cancers is extraordinarily uncommon, and he’s out of the standard age vary for sufferers.
Fields additionally has had COVID twice — as soon as, he was “fairly sick” for a time in 2021 — but it surely can’t be recognized whether or not Fields’s case is in any respect linked to this pattern, or to coronavirus, or simply an especially unlucky coincidence. Nevertheless, it’s fascinating how a lot is unknown, he mentioned.
“Being so uncommon, I’ve had a bizarre quantity of consideration from docs,” Fields wrote me in an electronic mail. “Researchers from UCSF, Mayo Clinic, Johns Hopkins, and so forth. have checked out it, however in all probability simply as a lot as a result of they wish to accumulate information as they wish to assist deal with it, which is sweet, but additionally scary.”
When speaking to Patel about Fields’s expertise, he stored coming again to certainly one of his sufferers, Bonnie Kroll, who had neither a household historical past of most cancers nor a predisposition. She had three biopsies earlier than they may diagnose her most cancers. It progressed so quickly that by the point of the fourth biopsy, it was the scale of a soccer. Patel had by no means seen her sort of aggressive sarcoma in his complete profession, however “right here she is, rising one in entrance of me in a matter of weeks,” Patel mentioned.
Nevertheless, as Patel burdened there isn’t a real-world information linking SARS-CoV-2 to most cancers, nor have there been research to hyperlink the coronavirus vaccine and most cancers. “However, total, that is one thing that we have to examine in additional element; we’re making ready some potential analysis on it. We can’t fathom the depth of what we’re coping with.”
For the reason that Washington Submit article got here out, a number of people who find themselves not his sufferers have reached out to Patel. To date, he has collected information from greater than 35 sufferers which were identified with uncommon cancers for the reason that pandemic started in 2020.
He’s making ready a database linking Lengthy COVID markers and weird cancers, to be revealed earlier than the top of the yr.
Patel, nevertheless, is worried concerning the potential affect of this data going to most of the people, “as a result of it’s going to, in my view, create some type of paralysis of normalcy, as a result of when too many individuals get these power diseases that we don’t perceive, it positively may cause society to sort of pause somewhat bit.”
Little question Fields’s life has been placed on pause by his surprising most cancers.
“Definitely scary,” Fields wrote to me about his analysis, “and we’re making ready for an additional six months of chemo, however holding onto hope that it means we nonetheless received an opportunity right here.”
Embracing the Unknown
Chelsea Brooks works with sufferers at Cottage, like Fields, who would in any other case be left “attempting to determine the fragmented well being system on their very own.”
In Brooks’s phrases, Fields has “embraced the unknown” and labored with the little data they needed to dive headfirst into therapy. “I feel that that takes loads of bravery and belief in a group that he didn’t know existed, proper?”
“It’s really easy with one of these analysis to show over and bury your head within the sand,” she continued. “Nick has not,” regardless of the 20-40 hours of physician’s appointments he has gone via principally each week since he was first identified. It’s, basically, a full-time job.
Fields’s care staff at Cottage’s Ridley-Tree Most cancers Middle regularly meets with exterior specialists in uncommon tumors, collaborating, offering concepts, and evaluating notes to make knowledgeable selections for Fields’s therapy. As a result of his tumor is so uncommon, they’ve needed to meet extra regularly than traditional, particularly as extra data trickled in about his analysis.
There was loads of ready to find out the following steps for his therapy. Nevertheless, they’ve been in a position to customise his therapy and set up a sort of toolkit in case he has a recurrence. To date, that has not occurred.
“My job is a horrible strategy to meet essentially the most wonderful individuals,” Brooks smiled. “If anybody deserves to have their second to shine, and be an inspiration for others going via related conditions, it’s Nick. He’s a glowing gentle — I inform my different sufferers, ‘If he can do it, you’ll be able to too.’ ”
Not Saying ‘Uncle’
With help from the individuals round him, Fields mentioned he seems like he can discover each therapy possibility, with out having to restrict himself. His girlfriend’s sister, who works in healthcare, arrange his GoFundMe, and his buddy Haley Sorensen created a “Meal Prepare” for individuals to enroll and convey him meals throughout the first month of his therapy. To not point out his girlfriend, Rebecca Fox, who has taken time without work of labor to assist him via all of the physician’s appointments, assessments, and therapy.
Every buddy I spoke to referred to as Fields a “particular man,” somebody they mentioned has lived his life with enthusiasm and kindness — even when he labored at Jersey Mike’s in Isla Vista, he was a “passionate sub-making machine.”
There are some in his life who’ve skilled the ache and uncertainty of most cancers. They’ve reached out, serving to him to “really feel optimistic, and never take into consideration these darkish locations that your thoughts can go.”
Miehl, his finest buddy and Pookie bandmate, has a sister, Sophie, who had a mind tumor round age 12. She fought it for a decade and survived, and he or she is now a nurse working on the College of Southern California in oncology. She’s been serving to Nick as he navigates his personal analysis.
“It completely took me again,” Miehl mentioned. “It has been actually emotional for me to see Nick undergo this. Even the second after surgical procedure, he was simply so candy and good. Asking me questions on myself, like, ‘How’s every part going?’ Actually half-hour after surgical procedure. Even the nurses, he’s like, “You want being a nurse?’ He’s nonetheless the identical good, candy, mild man that he’s at all times been. Not complaining or something.”
One among his fellow band members of Uncle Uncle, Kevin Cappon, mentioned, “We’re all clearly rattled by the analysis, and all of us see ourselves in him.”
“However he’s been a fighter his whole life,” Cappon continued. He attributed Fields’s angle and friendliness to his Greek heritage. “His love language is gestures; it’s choices for his mates and his household. We have been simply on the Santa Barbara Greek Pageant, the place his household has volunteered for eternally. His mother was meting out spanakopita. And he was promoting raffle tickets.”
In a manner, his girlfriend, Rebecca Fox, mentioned they’ve gotten to a brand new regular. She is again at work part-time and Fields has been in a position to get again into a few of the issues he likes to do.
Despite the fact that he’s nonetheless very delicate to sound, Fields was in a position to jam out not too long ago with Uncle Uncle, utilizing sound-canceling headphones. “It was somewhat sloppier than traditional,” Cappon laughed, “however extra particular and emotional than ever. It was a euphoric second.
“And so, I feel that was reaffirming that, , it’s okay for us to take it gradual. It’s okay for Nick to take the time that he must heal. And we’re simply going to be right here when he’s prepared.”
Fields is now on incapacity, which is relieving a few of the monetary pressure of the infinite physician’s appointments and coverings, together with the “insane” prices of even only a staple throughout surgical procedure, Fox mentioned. Regardless of the whirlwind of uncertainty and worry they’re in, the group has already rallied round him, elevating greater than $120,000 on the best way to their $150,000 objective.
“All my mates, individuals I’ve labored with, each different night time of the week, somebody is stopping by the home and dropping off meals or sitting and consuming with us,” Fields informed me in April. “Santa Barbara is particular. It’s a group factor. And I feel it’s simply so surprising, proper? It makes you notice, ‘That might be me.’ ”
Entry Fields’s GoFundMe at gofundme.com/f/jkk97-help-nick-fight-brain-cancer.
