I was very fortunate to have met this young man, who, at the time was the same age as me. I was the nursing assistant assigned to him for the next two nights and at this time they were suspecting it to be cancer but had not confirmed it. His aunt was so absolutely sweet and slept on the floor to be next to his bedside when the chairs she was given became to uncomfortable. He was always so chill and smiled and laughed often. I remember telling myself like wow this guy has such a positive attitude. How amazing! So glad to hear that he is in remission and living his best life.
I'm in many ways sympathetic to this article. My own mother was first diagnosed with cancer when she was 37, and she was clear about the challenges of having cancer at that relatively young age while raising a family.
However, I think there is a problem with calling people up to age 39 "young adults". It is infantilizing a people who just "adults" and dealing with "adult" concerns. Heck, by the time you're in your 40s, you're "middle-aged". So when is the time that people get to just be adults?
The challenges many people in their late 20s and 30s face when diagnosed with cancer are profoundly different from those of teenagers and people in their early 20s. Being "15 to 39" is not a demographic.
Many people in their 30s are already married and have children. They have jobs and may be caring for elderly parents. Yes, they have distinct challenges from people in their 60s, 70s and beyond who are living with cancer. But their challenges are nothing like those of *actual* young people who are still in school and being cared for parents of their own.
1
My sister who lived in Massachusetts developed ALS. She had a loyal and loving circle of friends who helped and sustained her during her struggle with the disease. Her friends also formed an e-mail group to coordinate a schedule of daily help. They included me so that the family would know what was happening. I still have their e-mails and many letters and get well cards. As my sister’s condition deteriorated her friends reached out to our family in Pennsylvania for more help. I was able to take a leave of absence from work and bring our disabled mother so that we could provide live-in support. We are forever grateful for for all the love and caring that supported her ... and us.
Readers who asked who paid for the young mans treatment make the case for single payer healthcare. As I understand it, the diagnosis of ALS enabled my sister to have Medicare.
How did he pay for all the treatment?
The guy needed structure and support and maybe just a little bit of love. What a wonderful physician the author must be.
More important than knowing that his buddies provided support is knowing who provided his health insurance.
It's also interesting to note that chemotherapy alone seems to have been sufficient to put him into remission.
I, too, had cancer. My husband was able to take off work (but not really, because as a teacher he had to spend a lot of time working on plans a substitute could teach) when I met with my radiation oncologist once a week, but not oftener than that. And radiation is every day. I had no other family within 300 miles. But when I became unable to drive myself two hours each way on icy roads for daily treatment I had a "family" of friends who pitched in and got me there. I am so indebted to them; they wouldn't even let me pay for gas.
4
Such a great read. That kid has true grit and his friends are true buddies.
14
Teen Cancer America (Teenage Cancer Trust in the U.K.), started by The Who’s Roger Daltrey, partners with hospitals to develop specialized facilities and services for teens and young adults. The foundation among other services, builds teen friendly environments, enhancing the hospital experience with a goal of improving outcomes and survival for young people.
9
How did he pay for his treatment? Can he afford his after-care or medications? Why am I a citizen of the greatest nation on earth and still have to ask these questions?
28
Yay to being in remission! I’m crying reading the comments. Family is what you make.
12
The article ends abruptly with a trivial observation about how the writer learned not to make facile judgments about other people based on appearances as if that is the moral of the story. I would like to hear more about the young man himself and how his own story continues. He and his friends sound like great people.
15
This article doesn’t really know where it’s going. I was expecting it to be a comprehensive study of the unique situation of providing care to young adults as a subgroup of patients with the young man’s situation being the lead-off, but instead it veered off to a more in-depth essay on the young man himself.and his circle of friends.,Even so it focused more on the author’s personal feelings and reactions which seemed to me beside the point. Where are the editors?
16
I teach boys at-risk who have HIV. Cancer and HIV are formidable. I have seen teenagers decide they cannot endure what they call poisoning. Adding antiretrovirals into a pharmacological regimen can be hard.
Easier said than done.
Especially with kids whose compliance is iffy, and who are not undetectable. TV courtroom dramas between medical professionals, what the kid wants, guardians, hospital concerns over security if the kid attempts to run, kids who see needles, especially if their parents are addicts, in a very negative light, kids who understand what they face with chemo, and deeply resent being treated like a child, or patronized, kids with mental health problems described as emotionally disturbed, and are often sexual abuse survivors, and adolescents who simply have a very bad attitude, and are rebellious in ways awesome to behold, kids who have been imprisoned, kids who do not trust adults (with reason), kids who do not understand what is happening to them, and some poor judge who is going to have to wade through all these issues, and none of this exists in any way inside a soap where all these dramas unfold in sixty minutes of televised angst. Welcome to reality.
We refuse to accept that many of these kids are suicidal in the first place. Losing your hair is one kind of issue for an informed adult. It is another issue for an adolescent who is developing his sexuality through how he looks.
Explosive stuff.
You won't accept a kid who chooses death. But I will.
7
I would like to share just for the other comments that he is in remission and doing splendid with starting a career and loving life more than ever. Thank you Dr. for the wonderful article on my best pal. It was awesome getting to know you.
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@Brandon Long - Thank you, Mr Long, for taking such great care of your friend!
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@Brandon Long
Everyone should have at least one friend like you. Best of everything to all of you.
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Thank you for the update! What an inspiration you all are in friendship, family and love!
2
This is such a honorable article on my nephew. This was such a rough time in our life. He never really complained about what life handed him. The true blessing was the great The staff that is on the Leukemia unit at the Cleveland Clinic. He was blessed to have had a great Doctor as well. Dr. Sekeres is such a kind doctor. A great doctor means so much. I thank you Dr Sekeres for being so kind to him from day one. My nephew is such An inspiration to me. Life gave him a whole lemon tree and he made a pool of lemonade.
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can i nominate Dr. Sekeres to take over this column from Dhruv Khullar. So much better
11
Thank you for this wonderful, heart-warming story of strength and love. Family is who you choose, and this young man was so fortunate to have a family of friends.
And a doctor who had faith that his patient could manage what was surely horrific treatment.
27
I know the article wasn’t about the actual outcome but still do we get to hear how it turned out? Did he live?
12
Read above, his friend posted he is in remission.
3
Wow, you just made me cry. And reminded me to never underestimate a person’s resiliency or a community’s capacity to love.
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I was an Oncology Nurse for many years, and we also had HIV patients on our unit. We often saw those bonds of friendship hold people together, and so we defined “family” as “whoever showed up for the patient”. Got used to a bunch of tattoo covered bikers tenderly caring for one of their own.
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As a foster mom to a 10-yr-old survivor of a very aggressive leukemia, this story touched my heart in so many ways. Thank you for writing it. I have to say I’ve often wondered about the relationship between drug exposure and cancer—our foster daughter was born addicted, and her mother used to cook meth with her boyfriend while the child slept in the next room. The thing that defines our foster daughter though, is not her cancer or her mother’s bad choices, but her resilience. Just like the young man in this story.
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The inoperable brain stem cancer, DIPG, has now become the focus of my company. As it progresses, new cancer subtypes form and eventually are lethal, occurring a year after first diagnosis.
These lethal forms are due to slow growing tumors that exhibit the "Warburg Effect", which is a change in the cell's metabolism that is directed to nourishing this tumor with an altered mitochondrial mechanism that is no longer directed at making bioenergy, the normal function of mitochondria. A switch from providing energy to now maintaining cancer growth that is independent of blood growth factors.
At Mitergy,LLC, we have developed a new class of mitochondrial therapeutics that target this altered cancer metabolism and thus may provide hope to eradicating this lethal form of the DIPG tumor.
Paul Anziano, PhD
17
Even with a great support system as this young man was fortunate to have developed, the day to day struggles in dealing with serious illnesses is incomprehensible to most people. We all know our health care system is in shambles. The pampered politicians receive the best health care there is. There should be a guaranteed safety net to ensure everyone can be treated equally. Some have no support network and need to have in home health care after being discharged, but usually without any follow up care. My brother, a brain cancer patient, was one such victim of our sick system after working in the trades his whole life, but without any in home nursing support to help him in his final days.
28
This is a lovely story of how single people build communities. I suspect we’ll see more of it as younger generations delay marriage or decline to enter into “traditional relationships.”
40
I wish there were more depth to this article.
I fell ill with my terrible lymphoma at 22. I was an athlete and just graduated college, and the lymphoma took my sports career away from me overnight. Chemo and 29 rounds of radiation followed. To maintain insurance, I had to enroll in community college classes during my treatments. I studied for grad school and started it the year after my treatments ended. During grad school, suspicions of a recurrence were not proven, so I kept studying and ducked out of further more invasive testing because nobody could provide an answer, but my time was being wasted. I graduated, got a job (and better insurance), and went for a follow-up scan. The terrible lymphoma had returned. Since then, it’s been almost 7 years of various medical misadventures, including multiple drug trials, including out of state, multiple types of chemo, a donor bone marrow transplant, more radiation, immunotherapy, and now another type of immunotherapy. Grant applications, GoFundMe and airline miles through opening credit cards, and endless, endless fights with insurance kept me and my eventual husband from taking on any medical debt. Nobody helped me with the endless insurance fights — I would fight while in the hospital with IVs in, while driving to appointments, while at work.
These have been my 20s and 30s. I would be really disappointed if someone in a white coat condescended to me about my ability to show up to appointments because of my age and appearance.
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Finally, a story this week that has brought a HUGE smile to my mug instead of a waterfall of tears to my eyes.
I don't know who any of these guys are, but gosh, I love them. And I love how they banded together when it mattered the most and helped their buddy through his life threatening illness and treatment. WOW.
Thank you Dr. Sekeres for sharing this remarkable story.
I guess it goes to show that appearances can often times be totally incorrect if not way off base.
Please convey to your patient and his pals that they are an inspiration to so many for a ton of reasons.
Your patient is so fortunate and lucky to have the kind of friends I never knew or ever had in my life.
Gosh, what an incredible "band of brothers". I love you guys.
54
Thank you, Dr Sekeres, for this. I imagine I’m not alone in admitting that I anticipated a much worse outcome. One of the many wonderful things about young people is that they often manage to defy expectations. And their resilience is astounding, as demonstrated by what this young man has had to endure. And what would we do without our network of friends? I’m praying that this story truly has a happy ending.
20
My sister, Patty, also had Terrible lymphoma and celebrated her 25th birthday in the hospital. She was lucky enough to have lots of supportive family around her, but unfortunately she died three weeks after her birthday. I am so happy for this young man. He clearly knows how precious life is and how fragile our health can be. He beat the odds. I can only hope that someday these stories will not be written because there there will a cure for these horrible diseases.
57
Thank you for writing such an informative and beautiful essay about human life and relationships as they go through the most difficult of circumstances. I was a little unsure whether I should read this as it sounded like it might be quite depressing, but instead is very uplifting. It also speaks to the need for affordable healthcare for our most vulnerable populations.
26
Love it. Thanks for writing this. Hopefully the young man you treated has read this column and shared it with his wonderful group of friends. Awesome when young people who did not have great, or any support in their families of origin, find another community to provide that.
33
Best news I read today. Thank you for taking the time to write. Young people..love em. They are our hope.
41
Wow. This patient was so lucky to have such loyal friends! Too often young adults find their friends vanish in these circumstances. (I know mine did.)
56
I have a "family" made up of four good friends who have been together for 30 years. One of our friends has Alzheimer's and no other family. We have a schedule with us as caregivers. Soon it will be more and more difficult to that, as his condition deteriorates. We are determined to give him the best quality of life he can have during this time. That's what friends are.
The young man in the story has friends who know what friends are as well.
73
The issue of not having enough support to complete cancer treatment is not unique to young adults. Many of us middle aged people (40-65) and seniors are in the same boat. Those of us who never married, whose parents have died and who have no other close relatives, are also at the mercy of friends. In our case, those friends usually have families or steady jobs which make them less available to assist with transportation to frequent medical appointments or sit with a patient experiencing side effects. Our medical system assumes that a patient has family members willing and able to take on this burden. If you don't, no matter what your age is, you're extremely vulnerable. I don't see anything here specific to teenagers or "young" adults.
66
While enjoyable as a heart-lifting story, I am not as surprised as Dr. Sekeres seems to be. I have watched my eldest's (19) friends form amazing support systems that function without any thought of repayment other than knowing they have each other's back. I see many young adults who are currently uncertain about their exact life-path, absolutely clear about strength in numbers.
33
My husband and I have noticed, in relatives younger than 35, the air seeking out and forming circles of intense friendships. They prefer to live, socialize, and work, together.
We think it's a very good, and human, thing. One of our nieces is an only child and has no cousins. She's the only member of her generation, is unmarried at 25, and has no children. Her parents are long divorced and live in another state. If not for her her new "family" and co-workers, she would have no one to be in a relationship.
She's learned how to build strong, lasting relationships and we're proud of what a good person she has become, despite early hardships.
43
I so needed this story after reading the preceding articles on politics crime and illness in today’s paper. It is important for all of us to recognize the potential good in any situation and especially in the challenging ones.
Thank you for writing and publishing this article.
66
This story is newsworthy because it's so unusual. How many men without spouses and/or available family members have "buddies" who can support them in an arduous and dehumanizing journey through a too-often-dysfunctional health care system run by uncaring MBAs?
The health care system has been increasingly transferring the responsibility and costs of patient care to the patient's own volunteer support system. Surgeries that formerly required days or weeks of hospital care with paid professional nursing staff are now performed as "outpatient procedures" where patients are hustled out the door as quickly as possible to keep the assembly line running efficiently. Recovery at home arguably is better for patients, but the main driver is cost reduction that those MBAs can pass on to themselves and shareholders (as costs continually increase for patients).
Unfortunately, the underlying assumption that patients have their own volunteer support staff to provide the care is often woefully incorrect. Even if the patient has a willing spouse and family, the realities of precarious employment too often make it impossible for them to provide the care. Even if taking unpaid family leave doesn't cost them their job, they may not be able to afford the lost income. Unless the patient can afford to hire a private nurse, the MBAs don't have anything to offer.
So I wonder what would have happened to this young man if he didn't have "buddies" to support him?
25
I am so happy that this patient exceeded your expectations regarding his care! Thrilled!! I do, however, think the title of this article is misleading. I opted to read this article because I thought it was going to address generally the challenges faced by teens and young adults who are diagnosed with cancer, not the specific situation of this young man. This young man's situation is not the norm, or at least I don't think it is, and the challenges faced by teens who are diagnosed with cancer are not addressed at all here. The article linked in your article addresses that, but I could not read anything more than the summary of that article.
26
@Elisabeth agreed. I’ve spent much of my career working with young people with cancer and other chronic illness and was very disappointed by this piece. I was expecting to read about the unique challenges faced by pediatric patients, instead I read a lot of bias, judgment and stereotyping. This piece says more about the need for diversity training and education for healthcare providers than it does about the unique needs of young patients. The young cancer patients I have known have been some of the most inspirational and heroic people I have ever met.
8
I love this story. Hooray for this young man and his supportive community!
26
Just want to comment on one minor thing.
We all know that alcohol consumption is not good for you, but for a male in their early 20's living with four other male friends, is 15 beers a week really as extreme as this article implies?
By my calculation, that comes out to a little over 2 beers a day, which seems in line with most recommendations for safe alcohol consumption for males.
And let me tell you, as someone who has cut down significantly on their alcohol consumption from their 20's to 30's, if this doctor is shocked by 15 beers a week by a 20 year old then they don't have their eyes open.
41
@Simone
First, no, it is not "normal " to be a heavy drinker in your teens and twenties.
And the adverse effects of alcohol consumption are especially severe for young people.
The neuronal structure of the brain is not "set" until about the age of 25. That, by the way, is why the brain's judgement centers and more "mature thinking" usually kicks in at around that age.
No one should excuse heavy drinking at any age, and it's an especially bad habit for folks under the age of 25 or 30.
5
Family is family, these people are his family. I'm glad the oncologist learned this. I'm hoping this young man soars. This story is about good humans. Thank you.
79
My sister and her friends did this for the couple in her friend group who became unexpectedly pregnant during their first or second year of college. They set up a babysitting chart, with two people on call for all class times and a few date nights and study periods thrown in the mix.
Everyone graduated, and I think it was actually pretty healthy for everyone involved.
98
How fortunate this young man was not only to have great friends but a open hearted oncologist. Thank you for sharing this uplifting story.
87
Family-of-choice is an important factor for a large subset of patients. Regardless of whether the patient has no (or absent) "real" blood family, families-of-choice can fill the nurturing, caring role.
This will become increasingly important as fewer people choose to reproduce; it's important for everyone to have a variety of friends from a variety of age groups. I am on the young side of my group, and I fully expect to care for an increasing number of the older friends in the next few years. We struggle to add younger (than 50) members to the circle. Whether that's just an age and maturity thing and new people will come in time, or whether we need to be doing something differently remains to be seen.
Encouraging co-housing and such would be a great start, so people are not constantly alone. So would allowing, in areas where this is practical, rentals of rooms to medical residents, people visiting on rotations, etc. My friend did this, helped a woman get through her schooling, and helped her get off drugs. The woman, unasked, cared for my friend through cancer and up to hospice. She continues to inspire.
59
Lovely story. Thank you. A goal for all of us is to note and learn from those surprising behaviors that fly in the face of our, often well founded, biases.
You make an excellent point about the impact of adolescent/young adult cancers. My late husband had a “Terrible lymphoma” in 1970 at age 20. Survival was very iffy. He made it through but this experience had a huge impact on him and his world view. Both positive and negative. I have come to believe that young adulthood is a particularly pivotal time and effects of trauma at that time are particularly powerful. Consider military troops, sexual abuse victims and so on. Cancer victims too.
26
Check out the Be Loud! Sophie Foundation out of Chapel Hill, NC, an organization designed to help adolescents and young cancer patients and hospitals to better serve this unique population. The family behind the foundation found that teens and other young cancer patients were often caught between pediatric oncologists and adult oncologists who did not know their special needs, especially while in the hospital. The foundation works with hospitals to bridge that gap. They are a great and necessary bridge for patients and health care providers of adolescents and young adults.
43
As a retired physician I have to say I have been pleasantly surprised on many occasions by patients exceeding my expectations regarding their future behavior.
It’s one of those things that remind you that care is not strictly by a flow chart or a practice pattern.
85
Thanks for sharing this great story about community. I wish your patient well.
39
Young adults and adolescents who live together can develop strong bonds and care for each other as much as family can. It's wonderful to hear how supportive the people around this young man have been.
80
Sweet and truly inspiring. Some young people are amazing.
44
There is something very unfair and heart wrenching when a child or adolescent gets cancer, particularly so in this case where the usual supports (i.e., family) were not there. But this kid's spirit, will to live, and the love of his friends make this a story with, for the moment, one with possibly encouraging scenario. Too often we make snap judgments based on background and current impressions and, as the doctor, notes this is unfair, biased and wrong. Prayers and hope for this kid and a heartfelt thanks to a professional who put aside his preconceived thoughts and learned something we of us can benefit from - all of us deserve to be treated the same, with respect, affirmation and dignity. You can't always tell a book by it's cover.
109