Limbo Land

On my last visit to Dr. M’s, we waited for him for an hour and a half. If I counted the number of hours Jon and I’ve spent waiting in doctors’ offices for the past five years…but that doesn’t seem like a meaningful activity for someone short on time. After about five min of staring at my rosy cheeks, and declaring that I look better, Dr. M finally answered some tough questions and gave me an account of what will happen to me if I volunteer to stop taking my treatment. I told the doctor that I didn’t want to die fat, ugly, and misshapen, but it turns out I’m gonna do just that if I don’t want to be in pain. Dr. M told me I’ll be taking steroids, which bloats my face and stomach, for the rest of my life. I know some people will tell me I’m beautiful just the way I am. But my physical appearance really matters to me so anyone who truly thinks I look good is either blind, deaf, or down right lies about what they see in pictures. Dr. M and my husband later explained to me that I have two choices; I have to either get busy living or get busy dying! I can wait for a new drug that hopefully prolongs my life. I cannot live in a perpetual state of limbo with no purpose, no goals, no kids, and no job, dreaming of dying but too afraid to stop treatment. I can take myself off my pills and enter hospice care or accept the changes life has forced upon me. Tough choice!

It’s hard to decide not to be on the Earth anymore. Recently, I learned what CLC would do for me during hospice care, which is the way hospitals deal with cancer patients after their bodies can’t take any more treatment or they run out of options. Being in hospice care signifies that there’s no more hope for you and the hospital gives you morphine and sedatives until you feel no pain and just slip away. I’ve often thought of the black nothingness as a soothing option, since I feel I’ve already served my purpose on Earth. But the black nothingness is so scary that I haven’t taken myself off my pills yet. Hence, I’m stuck in Limbo Land hell!

Every morning, since February, I woke up to my jaw snapped tightly shut making my steroid puff, which have taken permanent hold of my face and neck, look even bigger. Before I fall cheek first into a door trying to get from the bedroom to the bathroom, I remember that I am not a normal person. I am “bajar”ing, meaning lowering, on my steroid dosage, which is a good thing. But, I still look quite puffy, especially my cheeks, jowl, and stomach and I have much less energy to do things. Plus the doctor said that the steroids might be worsening my depression. Somewhere between waking up and crunching my face on a door I realize, the first of many times throughout the day, that I was diagnosed with metastatic breast cancer and my life on this earth may be ending. And there’s very little that anyone can do about it. Not my parents, not my sister, not my husband, not my friends… no one…. No amount of praying, shots of toads’ blood (not a joke; I was actually offered some), pill or treatment can save me from the inevitable: dying of cancer. Around ten o clock I become angry at this fact and want to throw things. I should get a dartboard! After five years of being a good little cancer patient, I am angry at my lack of control over the present situation. I lash out at those who are only trying to help me. And I hurt them emotionally. I know I shouldn’t and I don’t want to, but it all just seems too much to take.

I’m a proud woman. I’m a college athlete. I’m highly educated. I get sad and fight about sitting quietly in my “chariot” (wheelchair) because the contrast with what I used to be is so extreme. To go to the local park last month my mother had to push me over cobblestones, potholes, and though wet sand to get me to our destination just so that I could be outside for thirty minutes. Every jostle and lurch irritated me, and made me even madder that I couldn’t simply stand up and walk there myself.   I used to run down long passes on the soccer field for hours, so I’ll leave you to fill in the blanks on the nasty things I said to my mother while she was pushing me, #NastyWoman.

If we managed to leave the house to go do something, everyone stared and then moved out of the way to avoid us. Some even snickered. After surviving the gauntlet of stares and shocked expressions of seeing a 36-year-old woman in a wheel chair, I tried to speak Spanish to people only to receive a dismissive look from them. Apparently, as soon as I sit in the chair, people no longer respect my opinion or give me an opportunity to talk. Ironically, they look at my husband in hopes that he would interpret what I just said not knowing how poor my husband’s Spanish really is. My Spanish used to be fluent and beautiful. Now it is nothing but a mumbled curse, #NastyWoman.

Even my carefully decorated home isn’t so wonderful anymore. I narrow hallways and obstacles are a constant source of frustration because of the width of my new, state of the art walker. I snapped the old one in half getting juice out of the fridge in the morning to take my incredibly bitter steroid pills. Impressive, yes. Painful, oh yea. #NastyWoman curse, you bet.

And this folks, is what we call Limbo Land. Yes, this is where I reside at the moment. Hating everything that has happened to me, and everyone who keeps me in this terrible place. Words that should never get spoken have been spoken, but I’m miserable. How can I accept what I’ve become? How can I be me when I can’t even see myself in the mirror? How can I love those people who force me to take the pills that keep me this way? How?  But, I don’t want to die. I don’t want life to end. I want what I can no longer have and I don’t know what to do about it. I’m angry. I’m sad. I’m scared. I’m madly in love with my husband, but can’t stand the pain I cause him or the pain he causes me by forcing me to take my pills. I’m simply stuck in limbo land.

 

 

 

 

 

 

 

 

 

 

 

 

6 comments

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  1. Carolina

    Eli
    Yuor words touch my heart deeply…i would love to be able to read something to you that May interest you.
    I would love to see you smiling and give you a bit of hope!!
    Let me know if i can visit you?
    All my love good thoughts and blessings!
    Carolina

    Like

  2. Christina Neeley

    Eli,
    I know there aren’t words that can be typed into a computer that will take away your struggle. I do know, however, that the many, many people who love you see past whatever you have to yell and scream right now. You’ve shown that you are a fighter. Thank you for putting all of this into words, for sharing. These posts show a strength to which the rest of us can only aspire.
    Christina Bell Neeley

    Like

  3. Janet

    Eli, I know you are a fighter and wish that all The decisions you have to make the rest of your life will be what’s best for you! I did a relay for life for you and my friend Kim that has colon cancer that’ s also on her liver I will always be thinking of you ❤️

    Like

  4. Fender

    Shorty-

    Email or message me and cuss all you want. Shit, cuss at me. I’m a lawyer. I’ve heard worse. I know I can’t do much, but I’m always happy to give you space to vent. Thanks for keeping it real.

    Like

  5. Alison

    Eli, I have never managed to learn to swear in Spanish. My teenage boys won’t teach me the interesting stuff. Can you help?

    Don’t let the bastarding steroids get you down. Keep pushing to find a balance.

    And keep posting, nasty women of the world, carry on regardless.

    Like

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