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    MarieBlack shared an experience

    Side Effects (obsession with writing it all down): At some point I had to collate my daily journal into my "story to leave behind" so I did. I submitted it to amazon.com as an e-book. It is cheap because I want it out there to help people and to leave something behind. It is called: Goodbye Keanu because Keanu hugged me on many nights when I needed something to hold on to.

  • MarieBlack's Avatar

    MarieBlack shared an experience

    Side Effects (Sexual side effects): At 3.30am the morning after my diagnosis of plasma cell leukemia I tapped Alex on the shoulder. I needed to have sex urgently. In spite of the early hour he willingly complied. Men are good that way. I woke him again at 8am. I wanted more sex. It was a compulsion that had nothing to do with being XXX or making up for months of celibacy. I was plummeting into the abyss and sex was the tether that tied me to Alex and through him, to the world. Sex gave me some control back. It was a giant two fingers to cancer. You might have got part of me you XXX, but I can still make the rest of my body behave the way I want it to.
    I needed Alex in ways I hadn’t needed him in a long time. I clung to him on this sinking ship that was my life. He didn’t know where or when I would strike next, but thankfully he was up to the challenge.
    I wanted to keep having sex to feel alive. But I was getting so distracted by my illness it was starting to be impossible to unwind enough to enjoy it. The light that had burned so brightly from my erotic alter ego had dimmed. Like going blind, my other senses became keener. I could feel every throb as the blood pulsed through my veins. Every pounding thump of my heart echoed as if it was in a canyon. I became obsessed with every perceived breakdown in my mortal chassis. My right hand felt a little tingly. A rib hurt. My stomach ached. With every twitch and every twinge my brain worked to decipher: “Is this the cancer or just an ordinary feeling?”
    Now every morning, instead of sex, the first thing on my mind was to take observations of my blood pressure, weight and temperature. I couldn’t converse until I had charted my progress or deterioration. Even then, the conversation would undoubtedly be about my disease.

    1 Comment
    • kaseylady's Avatar
      kaseylady

      I can understand.. With my disease, I was too ill in my physical body, but so wanted to be with my partner.

      over 3 years ago
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    MarieBlack shared an experience

    Side Effects (Depression/Anxiety): I didn’t want to die but I didn’t want to be scared all the time either. I had to come down off the roller-coaster and put my death in perspective. It seemed like every day there was a new massacre, natural disaster or armed conflict. So many people lost their lives in the space of the half-hour nightly news that I began to feel a little arrogant for thinking my life was special. Everybody died so why shouldn’t it be my turn? After all I was insignificant in the great scale of the universe and in the shadow of the BIG GIANT FOOT. This philosophy of randomness became so important to me I should have had it embroidered on my tea towels. It was my own personal religion – THE BIG GIANT FOOTISTS. It relieved any responsibility I had for my own death.
    Of course my sudden deification may have been slightly enhanced by my steroid use. The listed side effects of dexamethasone included personality changes, irritability and mood swings. I took ten steroids every Thursday and Friday for eighteen weeks. Initially, the ‘roids (as Charlotte called them), just made me anxious. My heart raced, I couldn’t sit still and I was wide, wide awake all day. But soon “judgmental Fridays” became part of the package. It was like there was a little selfish, stingy, mean person incarcerated inside my head that broke out of jail every Friday and wreaked havoc on whoever she liked. Although I recognized my awful behavior and had warned my children about it, it didn’t mean I could stop it. The increase in my sarcasm and cynicism went beyond anything I had anticipated.

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    Procedure or Surgery (stem cell transplant): At 2pm the stem cell transplant was under way. I had six bags of cells to get through at about fifteen minutes a bag. That meant I should be finished in an hour and a half. The bags were hooked up to the IV pole one by one and dripped into my arm exactly like getting a blood transfusion. As each bag nearly finished, the next was defrosted in preparation for hanging. It was all very low key and carried out efficiently and confidently by two nurses. I felt well during the transplant until five minutes before the end when a wave of nausea overtook me. I threw up in a plastic cup kindly provided to me earlier. Apparently it was the preservative the cells were frozen in that caused the nausea. Six bags full was a lot of preservative. When the nurses finished, they hooked me up to another IV to keep me hydrated and left. I sat there feeling a little stunned. I couldn’t believe that months of anticipation and trepidation of what the process would be like were over. The leaflets I had pored over on transplants, nutrition, the PICC, the melphalan, the side effects and the dangers could now be shelved. For six months I had been hearing about the autologous transplant. Now after an hour and a half, the transplant was complete.

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    MarieBlack shared an experience

    Side Effects (Constipation): The chemo drugs were making me horrendously constipated. I tried metamucil, over the counter laxatives; I even resorted to eating hot kung pao noodles. It was a weekly effort to try and shift the bowling ball that built up in my intestines. At the end of a particularly uncomfortable week, desperate for some relief, I drove to a local chemist on a Sunday morning. I paced outside until 9am when the doors slid open. A chemist pounced to my side.
    “I need something for constipation.” I said quickly.
    “How long have you been having it?” She said in a professional tone.
    “Five days.”
    The chemist’s eyes widened dramatically and her chin dropped involuntarily. I thought she needed an explanation.
    “I’m on chemo.”
    “You look really well.”
    She sounded surprised that a person on chemo could be standing before her.
    “I feel well.” I offered in explanation at my ability to be vertical and breathing.
    “Are you on morphine?”
    I mustn’t have looked that well for her to think I was end stage.
    “No.”
    “You need this.” She pointed to a box and smiled.
    Carrying from the store an enema that looked like it was going to be difficult and messy, I was sure I had become the talking point of the morning staff at the chemists. At home I squirted the enema where it was supposed to go. When I finally got some relief it felt like a beach ball had forced its way through a small funnel. I would rather give birth then go through the painful process again.

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    MarieBlack shared an experience

    Drug or Chemo Therapy (Chemotherapy): I had been told that the chemo drug would lower my body’s immune system. With all the talk about super bugs, I was worried about catching something at the hospital. I prepared myself by going to a chemist first. I bought five one-dollar surgical masks. I put one on and as I walked up the steps to the hospital I looked appropriately as sick as I felt. I was one of those people you shook your head at sadly because it was just before Christmas and I was knocking on death’s door.
    I entered the hematology day stay room and sat on one of the beds. When the nurse asked how I was, I answered automatically.
    “I’m fine.”
    It was totally inane. I should have said:
    “I’m a little XXX off actually. I’ve got cancer.”
    The nurses all reacted strangely to my mask. I was the only one in the ward wearing one. Finally one nurse couldn’t contain herself. She pointed at my face and said:
    “Why are you wearing a mask?”
    “I am completely paranoid after starting the chemo drugs today, that I might catch a bug.” I mumbled through the humid plastic covering my mouth.
    As if on cue someone walking down the hallway outside the day stay sneezed loudly. I raised my eyebrows to show how smart I was being. The nurse didn’t appear impressed.
    “You don’t have to worry. Your immune system will be lowered slightly but not really compromised.”
    I suddenly felt stupid sitting there in my one-dollar mask.
    “Okay then. How will the drugs affect me?” (If you’re so smart, answer this)
    “The steroids might keep you awake and the chemo might cause a bit of nausea. But the nausea is usually minor if anything and the anti-nausea drugs will take care of it.”
    Before I went to the hospital, I had an image of cancer patients from old movies lying in bed on a chemo drip, vomiting violently, getting thinner by the minute, balding and on the slippery slope to death. This sounded a lot better than in the movies. Besides the mask stunk and made my nose run. On top of that, the nurses seemed to think it was a waste of time. After that first day I never wore one again.