Leukemia

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    How we process our diagnosis effects our outcome.

    My cup runneth over. The cup is half empty or is it half full. What is the lens we see ourselves through to make these judgements

    I thought my cup was full enough till it wasn’t. And this was acceptable but now my life may be running out of time. How can that be. I do yoga I eat well I volunteer. Yes it’s your turn, sorry.

    It was not only my turn, it was my partners turn as well. He has been living with a terminal leukemia diagnosis for five years when my heart begins to lag behind.
    We have both entered this end of life arena not yet 70.

    In hindsight I witness the grace of this experience I would receive the news that emergency open heart surgery was required. I had hiked thirteen miles the month prior and something broke loose. It was during Covid times. I thought me just sick.

    As we all did during Covid we found ways to look for meaning in these confusing times. My partner and I were two days into a four day online meditation retreat with Mountain Cloud of Sante Fe. A woman named Virginia would tell a story about a Buddhist nun being told she was going to die of her cancer. He wanted her to be alarmed it seemed. She thought I am my cancer and was not to be rattled. I took that in. Impermanence

    We sat at our table to process the meditation gathering event happy to be doing it. The call came in. You need emergency open heart surgery. We missed it on the first look
    I hang up. A deer in the headlights He makes all the reservations while we sit at table still me hardly able to focus. Done. I stand. I say I’m going out to our camper to process alone and leave. In a good marriage we have processed most things together so this was different.

    I lay on the bunk and hear my mind say the words open heart surgery and my body starts to panic. I have never experienced panic mode. It started at my head with thought and traveled all the way down my body picking it all up together when I remembered Virginia. I am my cancer she said. I am my heart. And the trembling stopped

    I called to mind they looked again and found it after I requested it. I wasn’t getting better. They listened to me. This is good. I immediately came back to the cabin to relieve my best friend.
    And the dance began

    Where is my cup now. Shouldn’t it be full. I’m feeling pretty mighty. I am hiking seven miles already one month into recovery. It’s pretty full. Two months and one day after open heart surgery and the day after being given a clean bill of health, I get a call at eight pm. What a hard call that must have been being my doctors my friend and we live in a small Alaskan town. We see a blip on your last ultrasound. It could be nothing

    It wasn’t nothing, I would turn down the only option in the medical profession that would insure me a long life. I said I have loved my life. I will not be tethered to the system on my way out. I will live with this cancer along with my partner He is considered an outlier being five years past his expiration date.
    So we live
    Isn’t that what the mighty do?

    We are finding our way into an alignment not felt before as it’s just gotten real. Everything matters. Everything belongs. We are discovering new ways to approach a very dire piece of news not falling apart but thriving.

    If we can learn to listen to what our bodies are saying and filter out the white noise of what you should be doing, like our doctors, family and friends trying inform , we may just be able to hear, it is my belief these diseases are messages to help us change how we live and move through the world.

    Feeling mighty comes in many packages. I am delighted the real might showed up when needed so we may keep it real continuing to help others along our way.

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    I’m new here!

    Hi, my name is Vorlex. I'm here because I have Acute Myeloid Leukemia in remission after a stem cell transplant. I’ve been suffering from increasing chronic pain that is becoming debilitating and I’m looking for suggestions to cope or similar cases.

    #MightyTogether #Leukemia #MyalgicEncephalomyelitis #Fibromyalgia

    4 comments
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    Hello!

    Hello! I just joined The Mighty! I have A daughter named Riley and another on the way. I joined because Riley was diagnosed with stage 2 Leukemia a few months ago. I really need someone to talk to.

    1 comment
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    I'm new here!

    Hi, my name is Cesur (meaning brave in Turkish language, hoping to carry the name during my journey). I'm here because I need to share my illness with people who understand instead of keeping it to myself.

    #MightyTogether #Leukemia #ChronicIllness #PulmonaryArterialHypertension

    2 comments
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    I’m new here!

    Hi, my name is hopeprayer. I'm here because
    of a family member w leukemia
    #MightyTogether

    1 comment
    Post

    I’m new here!

    Hi, my name is hopeprayer. I'm here because
    of a family member w leukemia
    #MightyTogether

    Post

    I’m new here!

    Hi, my name is hopeprayer. I'm here because
    of a family member w leukemia
    #MightyTogether

    1 comment
    Post
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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

    6 comments