Acute Lymphoblastic Leukemia

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    Wrecking Ball, Meet Rope: Cancer + Mental Illness

    In my family, we have experience with a variety of conditions. My first-born has a series of mental health diagnoses. My second-born has cancer. And, I have my own experience dealing with Lyme Disease and anxiety.

    As a rule, I do not compare between my children. I equally do not want to compare the pain and hardship of people battling different diseases. Instead, I want to acknowledge that cancer, mental illness, and other lesser known medical conditions all come with loads of pain, suffering, and hardship.

    In my experience, the hardship is distributed differently. I think of one like a wrecking ball and the other as a heavy, unending rope.

    The Wrecking Ball: Cancer hits like a wrecking ball, stopping you in your tracks. If you are a "lucky" cancer patient, you might avoid being taken out entirely by its forceful swing. To all those battling cancer or caring for a loved one with cancer, I am with you. Helping my child navigate this disease has been like nothing else I've experienced.

    The Rope: Mental illness is a heavy load of rope that stretches out forever. You drag this rope with you every. where. you. go. You may trip over it, be slowed by its weight, get tangled up in its grips - or worse.

    As a parent, I’m tired. But, I know that I am not alone. I have met a small handful of parents who are going through similar challenges. And that makes all the difference. Yet, there is one aspect that I was not prepared for.

    While I never compare my children or their struggles, children often compare themselves to others. It has been hard to see my first-born realize that society does not fully understand the pain and hardship of someone battling mental illness. Our first-born watches our second-born receive card after card, gift after gift, emblazoned with: Brave, Strong, Heroic, Amazing, and more. All the while, our first-born wakes up to her own (invisible?) battles each morning, drags them to school with her, and tries to put them to bed each night.

    As parents, we work for our first-born to be seen/understood by insurers, school staff, family members, friends, and even our medical providers. I hope that we can teach our society more about these invisible and lesser-known struggles so that those who come next get more support, less judgment, and less assumptions.

    I truly hope that this post lifts up all who are struggling and does not imply that one battle is harder or worse than another. Cancer is hard. Mental illness is hard. All deserve support, compassion, and empathy.

    To those battling cancer, mental illness, or a lesser known disease, you are all [insert word from inspirational greeting card]. And, not always because you want to be. Sometimes, just because you have to be.

    #Cancer #Leukemia #AcuteLymphoblasticLeukemia #OCD #ObsessiveCompulsiveDisorder #TouretteSyndrome #tics #Anxiety #PANSPANDAS #LymeDisease

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    Forty-Two Days of Grief

    In October 2021, I finished three-and-a-half years of cancer treatment for leukemia. Three-and-a-half years of feeling unwell. Three-and-a-half years of headaches and fatigue. Three-and-a-half years of joint pain. Three-and-a-half years of medicine-induced body acne. Most importantly, three-and-a-half years of contemplating my own death. One would assume this would be cause for elation. It wasn’t.

    What I did not tell friends and family at the time is that I stopped my treatment six months early. My routine bone marrow biopsy, the test that checks for leukemia in the blood, was a bit off. It implied perhaps the toxicity of my cancer drugs had given me a new blood disorder—a blood disorder that is a precursor for a different type of cancer. What is supposed to be curing me is making me sick?

    Defeated and depressed, I kept a journal over the next forty-two days to deal with my emotions while awaiting a repeat test to confirm or deny if I had the disorder or not. To confirm or deny if my cancer journey, after three-and-a-half years, was really just beginning.

    I will release around one post a day over the next forty-two days in hopes to give insight into the unending, polluted thinking that preoccupies cancer patients. This behavior, anticipating a negative result before knowing the true outcome, is something we all are guilty of. But there is no stopping the mind.

    My hope is that this will help other cancer patients, caretakers, and people grieving anything feel less crazy. And let people who have not experienced such a purgatory understand their loved ones more.

    ***I think it is important to share a SPOILER ALERT: It turns out that I was preemptively grieving something. I did not have the disorder. I am done with treatment. And I am in good health.

    More at charlie razook.substack.com!

    ❤️ Charlie #MentalHealth #Anxiety #Depression #MightyTogether #Cancer #AcuteLymphoblasticLeukemia #Leukemia

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    Voicing Depression

    I often find it hard to share with others about my depression. I find that even when I am able to, which temporarily makes me feel better, I then find the need to bottle it back up again because I do not want to keep on annoying the people I share with. I don’t want a pity party, but I do want to share.

    I am sure in reality they would not mind me continuing to share, and I guess if they did, that would be sign enough they are not a true friend.

    This meme made me chuckle, sadly. I often go into my hole then emerge.

    I am constantly working on opening up. It does feel healing when I do.

    Can you relate?

    #Depression #Cancer #Anxiety #mighttogether #AcuteLymphoblasticLeukemia

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    Undiagnosed Side Effects

    One of my biggest frustrations with ongoing cancer treatment is the influx of symptoms with no causes explained to me by my medical team. Often, it feels like as long as the cancer is under control, explaining what is causing the side effects doesn’t matter. From chest pain, to ankle pain, to general joint pain, to acne, to testicular pain, I’m often told we are sorry hopefully that goes away. It is hard not to catastrophize the symptoms, aka thinking the cancer is back, which makes it doubly hard to just live with them and try to forget them.

    Ugh, side effects.

    #Cancer #MentalHealth #Depression #MightyTogether #SideEffects #Anxiety #TheMighty #AcuteLymphoblasticLeukemia

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    My Uncensored Life With Spinal Muscular Atrophy

    My name is Crystal Rondeau and I’m a 30 year old woman living in Canada. I live with a form of Muscular Dystrophy called Spinal Muscular Atrophy Type 2 (SMA2), it’s a progressive neuromuscular disorder. So as I get older, I get weaker and lose more abilities. Growing up, I was constantly in and out of Childrens Hospital for chest infections. The pattern was 2 weeks out of hospital then 7-10 days in the hospital for IV antibiotics, I did this for over 10 years and the hospital staff quickly became a second family. Despite that, I went to public school, played outside, made friends and had awesome grades.

    I got my first wish from The Wish Foundation and ended up being the 500th wish child, they flew my family and I to Windsor Ontario where I met a bunch of figure skaters and was presented with my computer.

    At 10 years old, I was chosen to be the champion child for Manitoba by the Children’s Hospital Foundation and I went to the House of Commons to receive an award, then to Disney World.

    In 2003 when I was 13, I was diagnosed with cancer, Acute Lymphoblastic Leukemia (ALL), on top of the SMA2 and I was the first person documented in the world with SMA2 and ALL. My doctor was phenomenal and did her best to treat me, I did 2 and a half years of chemotherapy successfully. I also received a second wish because the board decided that the cancer was a completely separate life threatening condition from the SMA2. This is also the point in my life where I started doing surgery and surgical procedures without sedation because it was too risky to sedate me. It’s also the point in my life where I was severely in junior high. One of the chemotherapy drugs I needed weakens muscles – a problem I already have. So it put me in early respiratory failure when I was 15, I had to be resuscitated and then I was trached and ventilated a few weeks after my 16th birthday and was in the hospital for 14 months while my mother took her training to take me home. I started having mental health issues at this time as well, my best friend died because of Cystic Fibrosos and I was diagnosed with depression and anxiety, this was also the year of my first suicide attempt.
    After this, a friend encouraged me to start doing presentations about my condition and my life with it, so I did.

    You see, before my friends death crushed me, I had already been through a lot of crap. I had already lost several friends to other conditions and in junior high, I was severely bullied for being disabled and having cancer. Grant Park High School was my hell. I went there for 3 years and ended up leaving to go to Sisler, which I had ZERO problems with bullying at. The principal at GP knew and did nothing. When I was there, it was disgusting how the students with disabilities were treated, it’s great if you’re intellectually challenged because they weren’t incorporated into the “normal students” (their words, not mine)… not great if you aren’t.

    Our lockers were in the back of the school, away from the other students. I was constantly told by a teacher I’d never graduate or be anything, my mom and her had it out. I was bullied by the football team who would chant “die cripple die” and because I was bald but still dressed like a girl, I was called a faggot a lot. Someone -also started the rumour that I was dying.

    I wasn’t always outspoken and tough like I am now, I WAS that kid who wore the black hoodie all the time with my hood up. I was that quiet kid who hated being paid attention to – class project presentations did not happen because I’d skip them lol. I was that kid who ate alone…until I wasn’t. Something broke and I quit taking people’s shit at 16 years old, literally overnight. I just woke up one day and I had it…sometimes breaking isn’t a bad thing.
    Even with all of these obstacles, I graduated high school with honours and a GPA of 100%. I then went University Of Winnipeg and studied business until I got too sick and had to drop out to focus on my health. As if these medical conditions weren’t enough on my plate, I was also diagnosed with Endometriosis and Fibromyalgia so, I’m also a chronic pain patient. Then, in 2018 I went into the hospital for what they thought was another pneumonia, I didn’t get better after the 48 hours of antibiotics so I knew something was wrong. I started pressuring my doctors to do a CT Scan and it took me 4 days to convince them. When they got the results, I had 5 blood clots in my lungs…a lot of people don’t catch these in time and end up dying.

    Now, I still do my presentations in schools, I do a lot of advocacy and I also model. In 2018, I was on the cover of Pin Up Life Magazine, issue 23: Celebration Of Diversity (www.magcloud.com/browse/issue/1536783) and then last year, I was in the first issue of True North Pin Up Magazine, issue 1 page 45 (issuu.com/truenorthpinup/docs/winter_2019_edition/44)

    I’m currently in a competition to be on the cover of Inked Magazine – you can vote for me here cover.inkedmag.com/2020/crystal-rondeau and I have a lot of photoshoot ideas I’m working on to advocate that women with disabilities are beautiful, sexy and desirable. I’ve learned to take everything I’ve been through and turn it into a powerful tool to teach others, that’s one of the biggest things that has gotten me through everything. Teaching, advocating and enjoying my life the best I can. So to all those kids that are being bullied, going through an illness, fighting every day or just not feeling good enough…I was you not that long ago and you will break in a good way one day. And when that happens, you can say LOOK AT ME NOW BITCHES ???????????? So like Sir Winston Churchill said “If you are going through hell, keep going”

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    Crystal Lee My Uncensored Life...Part 2

    Our lockers were in the back of the school, away from the other students. I was constantly told by a teacher I’d never graduate or be anything, my mom and her had it out. I was bullied by the football team who would chant "die cripple die" and because I was bald but still dressed like a girl, I was called a faggot a lot. Someone -also started the rumour that I was dying.
    I wasn’t always outspoken and tough like I am now, I WAS that kid who wore the black hoodie all the time with my hood up. I was that quiet kid who hated being paid attention to - class project presentations did not happen because I’d skip them lol. I was that kid who ate alone...until I wasn’t. Something broke and I quit taking people’s shit at 16 years old, literally overnight. I just woke up one day and I had it...sometimes breaking isn’t a bad thing.
    Even with all of these obstacles, I graduated high school with honours and a GPA of 100%. I then went University Of Winnipeg and studied business until I got too sick and had to drop out to focus on my health. As if these medical conditions weren’t enough on my plate, I was also diagnosed with Endometriosis and Fibromyalgia so, I’m also a chronic pain patient. Then, in 2018 I went into the hospital for what they thought was another pneumonia, I didn’t get better after the 48 hours of antibiotics so I knew something was wrong. I started pressuring my doctors to do a CT Scan and it took me 4 days to convince them. When they got the results, I had 5 blood clots in my lungs...a lot of people don’t catch these in time and end up dying.
    Now, I still do my presentations in schools, I do a lot of advocacy and I also model. In 2018, I was on the cover of Pin Up Life Magazine, issue 23: Celebration Of Diversity (https://www.magcloud.com/browse/issue/1536783 ) and then last year, I was in the first issue of True North Pin Up Magazine, issue 1 page 45 (https://issuu.com/truenorthpinup/docs/winter_2019_edition/44 )
    I’m currently in a competition to be on the cover of Inked Magazine - you can vote for me here cover.inkedmag.com/2020/crystal-rondeau and I have a lot of photoshoot ideas I’m working on to advocate that women with disabilities are beautiful, sexy and desirable. I’ve learned to take everything I’ve been through and turn it into a powerful tool to teach others, that’s one of the biggest things that has gotten me through everything. Teaching, advocating and enjoying my life the best I can. So to all those kids that are being bullied, going through an illness, fighting every day or just not feeling good enough...I was you not that long ago and you will break in a good way one day. And when that happens, you can say LOOK AT ME NOW BITCHES 🖕🏼💋 So like Sir Winston Churchill said \"If you are going through hell, keep going\"
    #SpinalMuscularAtrophy #Bullying #Survivor #Fibromyalgia #ChronicIllness #ChronicPain #AcuteLymphoblasticLeukemia

    5 comments
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    Crystal Lee My Uncensored Life...Part 1

    My name is Crystal Rondeau and I’m a 30 year old woman living in Canada. I live with a form of Muscular Dystrophy called Spinal Muscular Atrophy Type 2 (SMA2), it’s a progressive neuromuscular disorder. So as I get older, I get weaker and lose more abilities. Growing up, I was constantly in and out of Childrens Hospital for chest infections. The pattern was 2 weeks out of hospital then 7-10 days in the hospital for IV antibiotics, I did this for over 10 years and the hospital staff quickly became a second family. Despite that, I went to public school, played outside, made friends and had awesome grades.
    I got my first wish from The Wish Foundation and ended up being the 500th wish child, they flew my family and I to Windsor Ontario where I met a bunch of figure skaters and was presented with my computer.
    At 10 years old, I was chosen to be the champion child for Manitoba by the Children’s Hospital Foundation and I went to the House of Commons to receive an award, then to Disney World.
    In 2003 when I was 13, I was diagnosed with cancer, Acute Lymphoblastic Leukemia (ALL), on top of the SMA2 and I was the first person documented in the world with SMA2 and ALL. My doctor was phenomenal and did her best to treat me, I did 2 and a half years of chemotherapy successfully. I also received a second wish because the board decided that the cancer was a completely separate life threatening condition from the SMA2. This is also the point in my life where I started doing surgery and surgical procedures without sedation because it was too risky to sedate me. It’s also the point in my life where I was severely in junior high. One of the chemotherapy drugs I needed weakens muscles - a problem I already have. So it put me in early respiratory failure when I was 15, I had to be resuscitated and then I was trached and ventilated a few weeks after my 16th birthday and was in the hospital for 14 months while my mother took her training to take me home. I started having mental health issues at this time as well, my best friend died because of Cystic Fibrosos and I was diagnosed with depression and anxiety, this was also the year of my first suicide attempt.
    After this, a friend encouraged me to start doing presentations about my condition and my life with it, so I did.
    You see, before my friends death crushed me, I had already been through a lot of crap. I had already lost several friends to other conditions and in junior high, I was severely bullied for being disabled and having cancer. Grant Park High School was my hell. I went there for 3 years and ended up leaving to go to Sisler, which I had ZERO problems with bullying at. The principal at GP knew and did nothing. When I was there, it was disgusting how the students with disabilities were treated, it’s great if you’re intellectually challenged because they weren’t incorporated into the "normal students" (their words, not mine)... not great if you aren’t.
    #Depression #SpinalMuscularAtrophy #Bullying

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    #AcuteLymphoblasticLeukemia

    I am 56 yrs old and hoping to connect with other older folks going through treatment. i have had chemo, immunotherapy and next is bone marrow transplant. Thanks!