Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on October 3, 2024 in CommunityEOY, Stories
Tattoos often carry deep personal meaning, and for people living with brain tumors, they can serve as powerful symbols of strength and resilience. In this post, we’re sharing 15 stories from members of the brain tumor community about their tattoos — their significance, the emotions behind them, and the journeys they represent. Whether it’s a source of inspiration on tough days, a mark of survival, or a visual reminder of a personal mantra, these tattoos hold a special place in their lives.
Every year, I get a “tumorversary” tattoo to celebrate surviving another year. For my fifth year, I wanted something happy that would make me smile when I looked at it. I wanted it to be colorful and fun. A serious thing like a brain tumor is such a constant battle that I try to celebrate the wins that I have. When I am having a hard time, I just look at it, and my brain gives me a high five. It’s like having a little cheerleader on my arm.
The brain in my tattoo has a lightning bolt because I had a brain stimulator implanted as well as radiation, so I joke that I have a bionic brain now. It’s also a reminder to stay positive and keep finding the humor where you can.
Tip: If it is your first tattoo, I would suggest drawing something on yourself to see if you like having it for a day or two. I was deathly afraid of needles before my brain tumor. The thing I was most scared about when I was going into my first brain surgery was having to get an IV! I can say now that after everything I have gone through, I am no longer scared of needles. Tattoos are NOTHING pain-wise compared to what most of us have gone through, so if anyone is nervous about the pain, it’s not as bad as you might be thinking.
I was searching for a tattoo that would have a lot of meaning to me and was beautiful because this was going to be the first tattoo placed somewhere I was going to be able to see it. I chose the inside of my left arm so it would be close to my heart.
I asked the tattoo artist to design a flower using color ribbons, and this was his design. The gray ribbons symbolize my journey through the two brain tumors I have had, the different treatments for them, and the effects of those on and in my life.
Over the past nine years, it has become a reminder to me that my journey is what it is, and I have survived. And there is no reason I keep it hidden anymore. For decades, I kept hidden what had happened and the effects it was having on me and my life. This is my reminder to be OK with telling people and being OK with the effects the treatment had and is still having on me — that I am strong enough to transition from being ashamed of what the brain tumors have done to my life to being strong inside and out.
Tip: Find a reputable tattoo artist. Give them ideas and then evaluate their sketch. Do not make any hurried decisions. And if you do not love the sketch, have the artist redo it or find a different artist.
After trying to have a child for multiple years, I found out I was pregnant and had a brain tumor the same week. When my daughter was not yet six months old, we took a family trip to Disney World right before my brain tumor removal surgery, “just in case.”
After having my intraventricular meningioma removed, I faced multiple complications, including a pulmonary embolism. When life kept trying to push me down after having the tumor removed (and multiple brain surgeries later), I knew I needed something to remind me of not only what I survived but why. Putting the negative together with something that had positive memories for me enabled me to think of it all together. Turning that which would bring me down and use it to lift me up.
The gray ribbon is for the brain tumor, the red and white flowers and bow are for the pulmonary embolism, and the Disney-inspired ears/writing was to remind me of the gift I had to take my daughter to Disney, for my love of Disney and the escape Disney enables you from the real world.
Tip: I would encourage you to think of what makes you happy or empowered and put it in a place you could see to remind you. For me, it was knowing what I overcame. Each time I have a rough patch, I can see my tattoo and think, “If I could make it through all of that, I can do anything.”
I am a hospital medicine physician living and working with brain cancer (anaplastic astrocytoma). The lotus flower and all it represents — culturally, spiritually, and metaphorically — is a helpful tool for me.
A lotus flower only grows from mud. Brain cancer is my “mud.” Despite my diagnosis, it’s helped me see the many gifts of my life. Thich Nhat Hanh said, “No mud, no lotus,” and I wanted a symbol of this powerful message on my arm. I look at it daily to remind myself that despite the mud of brain cancer, lotus flowers still bloom.
This tattoo shows a lotus flower growing out of a gray brain cancer ribbon, my symbolic representation of a lotus flower growing from mud. I see this tattoo daily, and it reminds me to find the gifts amidst difficulty. I also think it’s a great conversation starter to raise brain cancer awareness!
Tip: I would make sure to discuss the timing with your medical team! It can be dangerous to get a tattoo at certain times during chemotherapy or radiation therapy. It’s important to make sure your risk of bleeding and infection is minimized when you get your tattoo.
After everything I went through with my diagnosis, I knew I wanted something to pay tribute to that time in my life! Plus, at that point, what was one more needle?
This is a tiny tattoo, but for me, it carries a huge meaning. On the day of my very first MRI, before I was even diagnosed, one of my best friends sent me a worship song by chance. I remember being floored the day of that appointment, listening to this song, and realizing that the words were exactly what I needed to hear at that moment. The song carried me throughout my entire brain tumor journey and became a pillar of the hope that I had through my faith in God despite my circumstances. The bridge of that song, represented by my tattoo, contains the lyrics, “Rain came, wind blew, but my house was built on You.” Those words always struck me so powerfully because it perfectly represents that no matter what life hands me, I have a firm foundation upon which to rest. That song instilled in me so much confidence, peace, and joy, even though that season was the toughest I have ever faced.
I look at it every day, and beyond just reminding me where I have been, it also assures me of where I’m going. The message of this tattoo extends far past just being impacted by a brain tumor.
Tip: For anyone considering a tattoo, I would say just to really think about it before you get it! I originally thought that I wanted to get a tattoo of an actual brain, but I decided that I don’t necessarily want to be reminded every day of the painful times I’ve been through. I chose a tattoo that, for me, carried a powerful and meaningful message, but that was also positive!
My choice to get a tattoo of my MRI (my first and only tattoo) was based on a few things: acceptance that this was now a part of who I am; memorialization of a “stable” state; and to remind me of the gratitude I have for the people who support me and of how fortunate I am to have had access to the care I was provided.
My tattoo is a very accurate representation of my MRI, and the artist who helped me with the tattoo spent a long time accurately replicating the scan. I have a picture of the MRI that the artist used side-by-side with the tattoo, and the precision is amazing!
While I had never gotten a tattoo before, I always reserved the possibility of getting one if the tattoo was personal, if it reflected a sense of who I am or something I was proud of, and if it would be relevant for my entire life. While looking at my MRI image one day with my neuro-oncologist, it suddenly occurred to me that this image met all of those criteria. I ran the idea past my wife and daughters (of course), and they were supportive of my decision.
I chose my upper arm for two reasons: First, it literally depicts the idea of “wearing it on your sleeve” (i.e. not hiding or repressing something); second, it’s in a place where I can choose to show it or not with the length of the shirt sleeve I wear. While it’s important to me because there is a clinical aspect to it, I wanted to reserve the option to be discreet.
Tip: I’d recommend that they think about what they want carefully and consider the fact that it will be around forever.
While I had one little tattoo from many years ago, I’d never followed up on that or increased my body “artwork.” That all changed when I met with a tattoo artist two days after getting my glioblastoma diagnosis and got my first “F Brain Cancer” tattoo. While this was not that tattoo, I feel it relevant to share that I’ve continued down the path of memorializing a whole host of life things via tattoo. The true inspiration for this tattoo was that I didn’t feel like I had a tattoo tied to brain cancer specifically. I had a whole host of family-driven, strong woman-represented tattoos, but nothing that highlighted the disease or my brain.
Oddly enough, this tattoo decision was made on a whim. I was at the shop getting matching tattoos with my sisters, and when our artist wrapped up, knowing my impulse tattoo tendencies, he asked if we needed anything else. My sister-in-law had seen some half brain / half something else tattoos online, so she brought up the general idea. After a bit of time talking and thinking through what I’d like, Bobby quickly (and so beautifully!) drew up this design, and we landed on this. It’s half brain, half gladiolus, which, per the internet, are some of the strongest flowers out there. We chose flowers with strength to represent (and encourage) the fact that this disease has chosen the wrong candidate, and I will continue to demonstrate next-level strength as I battle.
In terms of the location, we put it right on my forearm so that it would be visible to me, and everyone else. Since my tumor is in my left temporal lobe, I liked that the flowers fell where they do so that when others are viewing the tattoo, the flowers representing strength are on the left side of their viewpoint.
Tip: The inner arm, where you might consider yourself to be a touch flabby, is one of the most PAINFUL spots. I also found my lower back/waist area tattoo to be pretty painful, too. Make sure you jive with your artist! Aside from finding a facility that makes you comfortable and is clean and reputable, a positive connection with your tattoo artist makes a world of difference.
Two years ago (May 31, 2022), I had a seizure that changed my life. At 3 a.m., I was thrust out of bed like a freight train. Having no idea what happened but remembering every bit of it, I waited to go to the ER. Two days later, my life changed forever. A grapefruit-sized meningioma was discovered. Surgery was a few weeks later, and then recovery. Little did I know, as I was recovering over the next few months, that I would be diagnosed with breast cancer four months later, followed by a double mastectomy. The tattoo lists all of my surgery dates. Craniotomy 2.24.22, and my breast surgery dates. Every time I look at it, I feel empowered, proud, and nothing but gratitude.
There is a wonderful local artist in Los Angeles with whom I shared my story on Instagram. I had never had a tattoo before and thought it might provide me with closure. I told him I wanted to look at my dates every day so I didn’t forget how far I’d come. We came up with the concept in five minutes, and he did it freehand and on the fly. I love that only I know what it means, and if noticed by someone, I can share my story. These dates are precious to me and mean I’m a survivor.
Tip: I did want to find an artist who knew my story, so I felt a sense of connection. I also think trusting your intuition and not getting anyone else’s opinion is important. I only asked the tattoo artist his thoughts on placement, etc. He was the expert, so I trusted him. Art is subjective. What matters most is it speaks to you. I forced myself not to get input from anyone else aside from him.
Ever since I was a little girl, I’ve been drawn to butterflies. Their elegance, their freedom, the way their wings gently flap as they fly. These small, gentle creatures provide so much for us. So much beauty and comfort. My Nanny (great-grandma), whom I was very close to growing up, passed away in 2020. This was my first big loss as a young adult within my immediate circle of family members.
My family and I took it very hard, and it was difficult to cope with. My Nanny visited my mom and me in our dreams. Various dreams, different things happening in each one, almost as if she was saying, “Hi, I’m okay, and I’m here.” Granting us peace so that we can carry on.
I was diagnosed with brain cancer in April 2022. My mom had a dream about my Nanny a few weeks prior to my diagnosis. In this dream, my mom reached for a flower, and when she went to touch it, it was a butterfly. She looked over at my Nanny smiling, and my Nanny said, “When you see butterflies, think of me and know I’m with you.” A few short weeks later, I was diagnosed with grade 3 anaplastic ependymoma. Come to find out, the symbol for ependymoma is a butterfly.
My parents, brother, and I received matching butterfly tattoos to symbolize our journey with cancer. My parents, brother, and I walked this journey together.
I received my tattoo in August 2023. I contemplated getting it ever since my diagnosis, and I am so glad I decided to do it. My tattoo symbolizes my battle with cancer, as well as my strength and hope for the future. When I look down at my wrist, I am provided with comfort that I can get through anything that life throws my way. Getting diagnosed with cancer taught me patience, stillness, and that there are some things we cannot control. It has solidified my faith in the unknown of the future.
Tip: My advice would be if you want to get a tattoo inspired by your cancer journey, do it. You will not regret it. Something so lasting and impactful, a piece of that will always stay with you. I think having a reminder of your strength is so powerful. It is almost like taking these negative experiences and pain you have endured and turning it into something beautiful, a reminder of your growth. It’s just like a butterfly — it starts as a caterpillar, and one day, it morphs into a beautiful butterfly.
I’m a lover of all types of music, but primarily rock music. When I was recovering from surgery and going through radiation in 2022, I would regularly go on long walks to clear my head and get some exercise while listening to my favorite songs. I found myself listening to Led Zeppelin (one of my favorite bands) on almost every walk, and soon I started to play their song “Ramble On” at the start of each walk. I started to relate the lyrics to my brain tumor journey and quickly felt inspiration and motivation. It stuck with me ever since that first walk. It’s now the song I’m listening to as I cross the finish line of every race I participate in. This is a tradition I’ll be maintaining through all future races.
I was never a runner before my diagnosis. The longest run I had completed was a 5K, and I hated it. Now, I have two marathons and a 50K under my belt, with a third marathon and my first 50 miler in the near future. I’m hoping to complete my first 100 miler in 2025. My legs started to take me places — running through new cities, national parks, mountains, and ocean fronts — introducing me to new friends and new communities. It felt appropriate to put it on my leg.
I got this tattoo at Reservoir Tattoo Studio in Echo Park, Los Angeles, on my lunch break two days before running the LA Marathon with NBTS’s Gray Nation Endurance. The owner of the shop was running the marathon for the first time.
Tip: I would suggest researching a shop or artist you’re considering on social media or pop into their shop. Ask friends or family who have tattoos for recommendations.
I’d been thinking of getting a cancer-related tattoo but wasn’t really sure what I wanted. One day, I read this quote, and it immediately spoke to me. This saying is a Polish proverb that loosely translates into “Every cloud has a silver lining.” It reminds me that attitude is everything and that there can be something positive to come out of even the worst circumstances.
This is my first and only tattoo. I wasn’t opposed to the idea of a tattoo. I just never had anything significant enough happen to me to feel that it was tattoo-worthy — until my brain cancer diagnosis. I considered it for more than a year, and over that time, my mom shared that she’d like to get a matching one with me.
Tip: This was my first tattoo, and I definitely put a lot of time and thought into it, down to specific fonts. I ordered some temp tattoo mockups from Inkbox and tried them on different parts of my body. My right wrist felt like the most meaningful location and somewhere that was both discrete but accessible, so I could look at it on days when I needed strength.
I’m very grateful for my journey and all the lessons that I’ve learned because of my diagnosis. My tattoos are reminders to remember the lessons.
I picked Snoopy because I’ve been a huge fan my entire life, and Snoopy can be/do anything. The meditative Snoopy is for accepting what is and being at peace. Dancing Snoopy is for being present and choosing happiness. Radiating love Snoopy is for understanding that love is all that truly matters. I started with the dancing Snoopy and then added the other two a few months ago.
It is true that getting tattoos can be kind of addictive. One tattoo will probably turn into multiple. My one Snoopy turned into a total of eight and counting.
Tip: Before getting my first tattoo, I found it helpful to get temporary tattoos that were the same as I was thinking. I got a couple of henna ones and used InkBox freehand ink so that I could be sure of placement and size. I also go to a paramedical tattoo artist who uses medical-grade ink. Because of MRIs, I wanted to be sure it was safe.
I have several deficits from the tumor, the surgery, and complications. They’re invisible to others, and the comments started to depress me because my healing plateaued: “Oh, you look great, you sound great, you’re walking fine, I can’t even tell you had a tumor. You’re so lucky it wasn’t malignant. At least it wasn’t cancer. Oh, it was just a meningioma.”
Every comment minimized what I went through — 17 days in ICU, two months of inpatient therapy at a neuro rehab facility, 70+ staples, a scar plus infection. Relearning to walk, talk, and just think, plus seizures.
I felt the best representation of my battle [for a tattoo] was the obvious damage in my brain. This MRI was done four years after surgery. The purple he used around the edge and where white matter represents meningiomas. It’s not an excuse or a pity party. It’s my reality, and it reminds me I’m a badass.
Every time I started to feel like a failure for not “bouncing back” as fast as others do, I would look at my MRIs that really told the story. It reminded me of what I’ve been through and that I’m not “faking it.” And it represents my new normal. It helped me feel validated.
The tattoo is for me; it will only show if I decide I want it to. I chose the right shoulder because outside of memory and different cognitive issues, my right arm/hand has struggled the most.
Tip: Think about placement for sure and what’s meaningful to you in this journey. Mine is very in-your-face if I happen to show it.
My diagnosis brought a lot of fear and grief with it. I wanted a physical reminder that would help give me courage while I continue to fight.
“Still I Rise” is a poem by Maya Angelou that gives power to those hit by trauma. While the poem’s trauma is different than mine, it makes me feel less alone. The poem reminds me that no matter what cancer throws at me, I will still rise and continue the fight. I paired it with a sun since I have anger that I was given a terminal diagnosis at the age of 31. The sun sets every day, but it always rises the next morning. Even after death, I will rise.
I gifted myself a trip to Iceland four months after my brain surgery to prove to myself that my life wasn’t over with a terminal diagnosis. My now-husband proposed to me on this trip, and we had an incredible week hiking to waterfalls and geysers, photographing an erupting volcano, watching seals swim around icebergs, bathing in thermal waters, and driving the Ring Road around the entire country. It showed us that even though our lives were flipped upside down, we could still be happy. Before we came back to the States, we both decided to get tattoos in Reykjavík to fight back against cancer.
I have a heavy amount of scanxiety (anxiety around my MRIs) every 3 months. I don’t have easy veins, and I’m one of the lucky few where contrast gives me heightened nausea. I’m terrified of the day when my results will no longer be stable. I feel naked and alone in the machine since I’m not allowed to bring reminders that I’m not alone (my wedding ring or my Saint Peregrine necklace). When deciding on the tattoo’s location, I chose a visible spot that I could see at any time to remind myself of my ability to rise above all of my fears and trauma.
Tip: My recommendation would be to think about what you want the tattoo to do for you. I needed help fighting my fears, so I directed my attention to what made me most afraid and designed something that would give me courage in those moments. It’s important to recognize that nothing will make the grief, fear, trauma, etc., go away, but a tattoo that’s meaningful to your life and story can help give you strength as you continue your journey. I would also recommend keeping the tattoo appointment as far as possible from any upcoming MRIs. I also alert the MRI team when I have new tattoos that haven’t been scanned before.
I have several tattoos, and I wanted something on me that I could look at and remind myself that I survived. My brain tumor tattoo is so special. When I participated in the Race For Hope Philadelphia in 2017, my tattoo artist created a personalized image for our team t-shirts. The artwork he did turned into my tattoo several years later when my family gifted me the money as a craniversay gift to get the tattoo.
The tattoo is of a brain. On the right side, there are mechanical gears embedded into the lobes of the brain, representing the more methodical, logical roles that are associated with the right brain. The left side of the brain has flowers and petals floating away to represent the artistic creative features of the left brain. I have the gray ribbon on the top to represent my life as a survivor.
I see it and smile, especially on days that are challenging. I am disabled now and have several residual effects that challenge me daily, so seeing it is a reminder that I survived the most difficult thing I’ve had to go through.
Tip: I waited several years after my artist created the image to actually get it tattooed. I wanted to make sure that the image was something I loved over time, and it still represented my idea of what I wanted to showcase as a survivor. Every year at the race I was even more sure that I wanted it to be part of my body so I could showcase with pride that I survived. I am happy that I got the tattoo done by someone who collaborated with me on the design and someone I knew well so we could have a more personalized experience.
TAGGED WITH: brain cancer, brain tumor
