Osteosarcoma

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Osteosarcoma
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    When A Child Gets Sick #Care #Caregiver #Family

    When a child becomes seriously ill, the entire family faces changes, challenges and new responsibilities. Such disruptions become even more complicated when the diagnosis is cancer. Yet I have observed remarkable gifts that arise when both parents and the entire family share in the caregiving.

    Tony, an active fifteen- year-old, had his eye on a football career. Already a talented athlete, he played quarterback on his freshman team. That was until he developed persistent leg pain. After an initial visit to his family doctor, Tony’s parents made an appointment with an orthopedic surgeon. A variety of tests and scans showed that the problem was osteosarcoma, bone cancer.

    A child with osteosarcoma needs ongoing care. This could include appointments with oncologists, physical and occupational therapists, and even dietitians. His care required a primary point person to keep track of the details. That person would be his father Joe, a self-employed restaurant owner. Joe could manage his work schedule more easily than Tony’s mother, Marie, an elementary school teacher.

    The following months of treatment and surgery were far from easy. Some days Tony slept a lot. Other days he had trouble eating. Yet he and his dad also found time and energy to attend high school and college football games, and even a Green Bay Packer game. They fished a little on Gunflint Lake, and Joe brought home a few of his restaurant recipes to help perk up Tony’s appetite. On low energy days, the twosome just hung out together, or watched a movie.

    Joe and Tony’s lengthy cancer journey turned out to be a rare opportunity. It created a time and space for a father and young son to know one another—to explore frequently missed parenting and friendship opportunities. None of this erased the difficulty of Tony’s surgeries and treatment. However, it certainly shaped his recovery and his future in priceless ways.

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    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!

    Question

    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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    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

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    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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    Some Inspiring Thoughts for your Day #Cancer

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

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    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

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    Outside inside #Parkinsons , #ostosarcoma

    #ParkinsonsDisease 16 yrs w PD and now Stage 1a Osteosarcoma hate my bad bones. Positive thoughts, keep moving through it all. #mlee .