Osteosarcoma

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Osteosarcoma
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    Megan Liang

    Seeking Therapy as an Asian-American Childhood Cancer Survivor

    A few months ago, I hung up the phone and sighed in defeat for what felt like the hundredth time. Since the end of 2020, I have been on the search for a therapist for the first time in my life. At this point, I had repeated and memorized the summary of the past 26 years of my life: “I was diagnosed with osteosarcoma at the age of 5, and they later had to amputate my leg at the age of 6. I know I have struggled with anxiety, and I am pretty sure that my childhood history with cancer has caused me some form of PTSD. I would also like to work with someone who also has a cultural understanding of growing up as an Asian-American. So… do you think that we can work together?” You might be wondering: why was I just starting to look for help? The answer is easy: I didn’t think I needed it. Growing up, I thought I was pretty lucky: I beat cancer, I only lost one leg (and am still pretty mobile with my prosthetic leg), and I am now in good physical health. I could feel my privilege of being alive and beating cancer when I saw so many friends and family like me go through cancer recurrence or even lose their battle against cancer. As a childhood cancer survivor and amputee, I have always felt pretty self-conscious of my medical history and my visible disability. The conversations with strangers always go the same way: “How did you lose your leg?”“Cancer?! At that age? You poor thing!”“I’m so sorry for your loss.” While most people mean well, I have learned that there is a very clear difference between sympathy and empathy. Honestly, it just makes me laugh sometimes. “I’m sorry for your loss?” I mean, my residual left limb thanks you for expressing your deep compassion for its lost other half; otherwise, please save that for someone else. As you can probably tell, I tend to resort to humor or sarcasm as a coping mechanism. It’s funny and a bit sad when you think about it; whenever I feel uncomfortable about people staring at my leg or feeling sorry for me, I will make a joke or just internalize it to make sure that they were comfortable and didn’t feel awkward, disregarding how it may have made me feel. I’ll be frank: I am 100% aware of when people are looking at me and my leg, and I am uncomfortable 100% of the time they are looking at me. I can see when adults pull their children away from me, thinking that it’s rude to ask (it’s not at all; I am happy to answer all of your kids’ questions so we can normalize disabilities in conversations). I cringe every time someone does a double-take at my leg. It’s been 20 years since I became an amputee, and it hasn’t gotten easier, but I’ve learned to do a pretty good job at hiding my reactions. It took me a very long time to even realize that I was allowed to seek help. Mental health isn’t a common topic in Asian households. Our family certainly cared for each other’s health and wellbeing, but the topic of mental health and how we were feeling never really came up. After my diagnosis and amputation, “how are you feeling” meant “how are you doing physically?” If something was bothering me mentally, I didn’t know how to process it, because I didn’t even know what it was and what it meant. I eventually learned to shrug it off and internalize my feelings, as it felt like it wasn’t a big deal and I needed to be grateful for even having the option of feeling any sort of way. When I was growing up, I learned that my name in Chinese roughly translated to “Sunshine.” I remember my parents telling me what it meant, and proudly saying how fitting it was, considering I was always so positive and upbeat despite everything that I had been through. I always had mixed feelings about my Chinese name growing up. I have had people make fun of the pronunciation when I would finally share it; I have had people make fun of my middle name when they saw it on official school documents (my middle name is actually the pronunciation of my Chinese “first name”). When I heard that my name meant something so positive and so warm, I found a new pride in it; however, with that pride, I took the translation almost too seriously. I was already a generally positive person and already wanted to ensure that my peers were not uncomfortable with my visible disability. Now, I felt some sort of obligation to live up to my given name and continue to spread positivity, even if I wasn’t feeling it. There were a lot of external pressures outside of my family environment that made it difficult to seek help. The expectations and pre-established beliefs created by the Model Minority Myth made me feel as if I was held to a higher standard than my non-Asian peers. These dangerous stereotypes portray Asian-Americans as “model minorities” — highly intelligent in academic settings and successful in their careers. Growing up, academically, I didn’t fit the “model minority” stereotype; I was just average at all subjects. In addition, I didn’t even meet others’ standards physically; I was missing one leg and could barely participate in sports that required walking or running. Addressing my mental health issues on top of my misfit into societal standards just made me feel even more weak; Megan “Sunshine” Liang it is. It has taken me practically 20 years to realize that it’s OK to not be OK, even despite how much you’ve braved and overcome. It took immersing myself into a community of amputees to learn that my experiences and feelings were valid and not unique to myself. It took reading stories from other Asian-Americans who also did not fit in the mold to realize that I didn’t have to fit any societal standards that others tried to put on me. Now, I always talk about the importance of community to the point that I sound like a broken record. Having a community can do wonders for validating not only the experiences that you may find unique to your disability, but the feelings you might have internalized or even vocalized about existing as a person with a disability. It felt even sweeter when I joined Asian-Americans with Disabilities Initiative, or AADI, this summer. Being a part of this community that understands your entire experience and feelings of having multiple marginalized identities is so important. My search for the right therapist continues, but I oddly feel more at peace with myself than ever. It’s OK to not be OK, and it’s OK for you to take time to realize that. In the meantime, I’m going to work on finding a more authentic definition of “Sunshine” and try to embrace it as I move forward.

    Community Voices
    Community Voices

    Fear

    I’ve had to face many fears in my 36 years of existence. With a long list of irrational fears like not wanting to stay alone in a pool because I’m convinced there’s a shark at the deep end. Thats one of my more logical ones just so you get an idea. My biggest fear hit me a like a bulldozer four years ago with my lymphedema diagnosis. Let’s backtrack a bit with my history of fears. As a child I was diagnosed with osteosarcoma at the age of 12. Had to face my crippling fear of needles, the fear of losing my hair imagine being a pre teen and they tell you your hair is about to fall out, facing death didn’t even sound as terrible. As a cancer survivor whatever that means because at times it still feels the battle will never be over.. As a survivor you feel like you’re always reaching for that title especially when complications arise. There’s always fear in the back of your mind. Not just you! anyone around you who was affected by it. Anyone who was there to experience the battle and help you pick up the pieces. There’s always fear. Somewhere in the back of your mind just lurking. Part of me grew rebellious part of me still the naive 12 year old girl really thought “hey I had cancer nothing bad can happen again”. Fast forward 4 years ago almost 20 years into remission and I get told I now have a chronic illness. A chronic illness due to the many surgeries I had to have. With cancer atleast there was hope to fight and to beat something. With a chronic illness it all seems useless since basically you become that dude from Greek Mithology pushing a boulder up a hill just to have it come down again and it just repeats itself. My biggest fear became a reality, my ultimate fear not the one about the shark in a pool but the one where something could break my spirit. It actually was happening. Well I cried for a little over a week straight my husband can vouch for me and I mean nonstop. I would fall asleep crying wake up crying the only time I would stop for a few minutes was to walk into my business greet my team and go straight to my office and cry. I didn’t even want to stay home because I was so scared of my own thoughts. Sunk into a depression which quite honestly took me two years to get out of. The day had come that something crushed my spirit in such a way. Not even cancer had done that. Let’s fast forward to today. Don’t want to bore you with the details. Let’s just say it hasn’t been cute or easy. Yes there’s the fear of your conditions progression and the future but I stopped thinking about that. I’ve made a conscious effort to just stick to one day at a time. That keeps me somewhat sane. So, now to the good part. See, not everything is terrible, in the midst of chaos and pain I was forced to get back in tune with myself. To actually have to take it day by day literally. To have to put my priorities in order and really listen to my body. Somehow I found the courage to want to fight again. This time on a daily basis, fight for the small glories. Somehow the hope that had been lost started to come back. I know there’s no cure but that’s not going to stop me to at least fight to make all the changes to make my condition a little more bearable. Yes there’s some fear of the flare ups but I’ve come to embrace those too. I don’t see it as weakness anymore it’s just my body saying hey lady take a break I can’t keep up, that’s all. On the good days I proceed with some caution as we all do but I’m learning to not be scared all the time im learning to just live and enjoy those good days as much as I can. Once more I faced a fear and somehow I came back stronger mentally. Yes it broke me and I never thought I was going to heal emotionally from being told you have a chronic illness. Somehow I have found hope again and I have found a different self love. I found a new respect for myself. Somehow my chronic illness is turning me in to a better version of myself. More compassionate towards myself and others. More understanding. More self aware. I hope this happens to you too if you’re feeling overwhelmed with fear and despair. That you realize that a chronic illness doesn’t have to completety define you and that somewhere deep down hope will always be there. That your own journey can be of inspiration and help to others. That’s powerful, there’s so much beauty in that. Oh yeah one more thing I’ve been meaning to work on. face that shark in the pool. Wish me luck!

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    Annika Hoiem

    New Disney+ Movie ‘Clouds’ Features Zach Sobiech’s Cancer Journey

    On Wednesday, Disney released the trailer for “Clouds,” a true story about Zach Sobiech, a teen with osteosarcoma, a rare bone cancer, who inspired others through music. The film is based off of his mother’s memoir, “Fly a Little Higher.” “Clouds” is inspired by Sobiech’s journey as a musician while living with cancer. Director Justin Baldoni, who starred in “Jane the Virgin” and also directed “Five Feet Apart, ” first got to know Sobiech when he shot a documentary for SoulPancake about the boy’s extraordinary spirit. “I came here and I was expecting to meet a great kid who had a cool YouTube video and was inspiring, but I was not expecting to meet a 17-year-old who would change my life,” said Baldoni, addressing Sobiech and his family while shooting the project in 2013. “I just want you to know, this stuff’s not happening because you’re dying. It’s really because of the way you’re living.” After his diagnosis, Sobiech began writing songs as a way of embracing life and saying “goodbye” to his loved ones. “You can either sit in your basement and wait, or you can get out there and do some crazy stuff,” he reflected in “My Last Days.” “I want to be remembered as a kid who went down fighting and didn’t really lose.” Sobiech died on May 20, 2013, at the age of 18. A week after the SoulPancake documentary’s release, Sobiech’s song “Clouds” shot to number one on iTunes on the day of his funeral, making him the first unsigned artist to achieve this feat. Baldoni told Entertainment Tonight that it was especially meaningful to “reintroduce people to the magic that was Zach” this September with the trailer “Clouds,” as it is Childhood Cancer Awareness Month. According to the American Cancer Society, 800 to 900 patients are diagnosed with osteosarcoma (the most common type of bone cancer) each year, and half of these new cases are in children and teens. Sobiech’s family has now raised over $2 million for the Children’s Cancer Research Fund in his name. “You act with courage and kindness, you can change the world, and Zach is such a great example of it,” said his mother, Laura Sobiech, told CBSN Minnesota . “He showed us what it can look like if we choose not to be controlled by fear or despair but by hope.” “Clouds” will be available to stream on Disney+ on Oct. 16. Fin Argus stars as Sobiech alongside Disney Channel alum Sabrina Carpenter as his best friend, Sammy. Madison Iseman plays his girlfriend, Amy. Watch the full trailer below.

    Community Voices

    What was your experience as a caretaker?

    Hello everyone, I am pretty new to this app. My experience so far has been insightful and strengthening. Thank you Mighties 💕

    Lately, I have been struggling with my dad’s cancer diagnosis. I understand that he is the one with the cancer, but it is disheartening for everyone in the family.

    My relationship with my dad, in short, has been a complicated one. I believe most girls go through a stage where their dads distance themselves. Mine did this but it was due to a traumatic brain injury. He went from my most favorite person in the world to a person I feared above all others.

    I used to be “daddy’s little girl” but then I was “ignorant” “hysterical” “stupid” and a “disappointment”. My brother and I used to hide from him in our rafters in the barn so we wouldn’t have to work. If I was talking while he was on the phone, he would throw the nearest object he could find at me. I swam my fastest race and he told me I should have done it two years prior. I was being a brat and he held me up by the ponytail and screamed at me...the list goes on.

    Like I said...he changed.

    Now he has extra skeletal osteosarcoma. This is a rare disease and it is slowly killing him. I initially moved away from a job I loved to be at home with he and my mom. Then he got better. It came back. I chose a Masters program close to home instead of traveling away (I liked this school for other reasons too) and he got better again. Overall, his diagnosis has been like a yo-yo.

    Now, he no longer has one kidney, is missing part of his left atrium, has had a stroke and has two tumors back in his lungs. I was going to go off to nursing school but deferred to stay again. All the while, I am wondering what I am doing. Why am I doing this for someone who has treated me so horribly. I know why. He is my Dad. Still, I wish the feelings of resentment wouldn’t cross my mind.

    The past year, I have also been gaslighted and accused of being a pathological liar. My friends and even family members were convinced by others that I am a liar. This makes it even harder to have someone to explain this all to. People here about my dad dying and then surviving and do not believe me. Or they hear about the past and they think it isn’t true.

    My mom and my brother know the truth and I have them to turn to. However, they are of the same mindset. We all have been hurt by my dad in one way or another and we all feel similar about his cancer. “Is this really the end?” “Why can’t be see that God keeps giving him chances?” “What did we do to deserve this?”

    My family is not selfish. They are the kindest people you could ever meet. I just want to know if we are alone in feeling this way.

    Have any of you ever felt this way? That you hate yourself for resenting the person who is physically suffering? Have you ever tried to squash those feelings inside because you knew they were impure but they rear up anyway? #Caretakers #Cancer #PTSD #MajorDepressiveDisorder #ChildhoodAbuse #Gaslighting #MightyTogether

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    Community Voices

    New reality for me causing more pain.

    Well here I sit, day 4 after losing all of my medical treatment at my latest NYS WC hearing, even though my permancy from the early 1990's provides medical treatment for the rest of my life. My hand tremors are returning, neck pain increasing, my finger tips feel like they are raw meat and on fire and my quality of sleep is absolutely terrible. So much so I cannot seem to wake up today. I am so tired that I keep falling asleep sitting up while dictating this. Yet life moves on. My Christmas tree is not even decorated yet, boxes of online gift purchases for my 4 grandchildren and all of my adult relatived remain stacked up on my enclosed front porch, unopened. Today I have to somehow find the strength to get it together and at the very least open all of them and sort out what is for who, so I can get them wrapped this week. ( where is "Samantha" from the old tv show," Bewitched" when you need her!) To top off this wonderful month, my 8 year old cat, my fluffernutter, has been diagnosed with osteosarcoma two days ago and given 2 to 3 months to live. God has really hit punched me this week. I know he never gives us more than we can handle, but holy crap! This is alot. I'm starting to crumble and if you could send some prayers our way for HIS strength, guidance and mercy, it would be greatly appreciated. #NeverGiveUp

    Community Voices

    time to share.....

    I am a 41 year old happily married father of 1, I feel it’s time to share some things I have still not dealt with , any advice is welcomed. when I was 5 years old I was sodomized by a family friend I still have only told my wife, I was always a bit heavy , smart , and picked on , it became so bad I feared going to school , when I was 13 I began having pain in my hips , I told my mother but my stepdad would always just say he’s just looking for an excuse to not go to school , 2 months later I had the first of 4 major surgeries on my hips , the last surgery was at age 22 when I was told I have osteosarcoma, I went through another surgery and somehow we beat it , I have spent everyday of my life from age 12 in severe pain , pain that some would say is debilitating, my father would say I was looking for the person who invented work so I could kill him as though I just did not want to work from age 14-22 I hid my pain from everyone who should have cared , my stepfather was an alcoholic and a coke head , his favorite past time was calling me every negative thing you could think of, I speaking on it now because a lot of so called people who say they care smile in my face and then say things like oh he should be ashamed for not providing for his family, I truly wish I could , I just needed to get that off my chest , I’m still trying to get past a lot, any advice would be welcome, thanks😔
    #TraumaSurvivors

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    Community Voices

    Some Inspiring Thoughts for your Day #Cancer

    https : //www.curetoday.com/share-your-story/the-roadmap-that-i-never-had #Cancer #Osteosarcoma

    Community Voices

    You are not Alone in your Cancer Journey

    My best friend's husband was diagnosed with osteosarcoma 3 years ago and has been battling for his life since. It has been an ongoing tumultuous road of ups and downs for all of us, but recently he found some sense of control over the disease through words. He started this blog originally as a way to have an outlet, but it has slowly morphed into his way of being able to reach people to let them know they are not alone. He felt it was impossible to find forthcoming information when he was first diagnosed and hated that he felt no one was there to answer the many questions he had. His blog is an honest perspective of his cancer journey from many different viewpoints, which he hopes will reach anyone touched by cancer in any way. Check it out, whether you yourself have been diagnosed or are helping to support a friend or family member, I hope it will help you feel like you have a friend to help you through your journey.
    www.othercword.com
    www.instagram.com/steve_othercword
    #Cancer #Osteosarcoma #BoneCancer

    Community Voices