MarieBlack's Journey with Multiple Myeloma

Patient: Multiple Myeloma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 5 years ago, Female, Age: 56

  1. 1
    almost 4 years ago
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    It can't be cancer!

    Oh No

    Although I am currently in partial remission, my disease has a ninety per cent return rate. There is a very high risk that I shall be dead soon. So I am typing this very quickly. I was diagnosed with plasma cell leukaemia in mid-December 2011. It is a rare and aggressive form of multiple myeloma – a blood cancer that will kill more than 10,000 people in the United States this year. After the tears and the self-pitying “why me?” questions, I got to work researching my disease. The news was grim. Life expectancy was two to eight months. Having never been lucky at cards, monopoly or lotto, I figured I would be dead before Santa got a chance to fill my stocking. But I managed to hang on. I was able to see my two daughters and my husband blow out birthday candles in the first half of 2012. I ate a chocolate heart on Valentine’s Day and a chocolate egg on Easter. Okay, I ate chocolate every day after I got diagnosed. But I did have cancer. I felt the chill when summer first turned to autumn and I saw the first flowers of spring. Every achievement was a hallmark of my existence. They were also a testament to my “brave fight”. As they stand around my casket, my family can proudly say: “Well at least she made it to her 52nd birthday.” Just to give credence where it never seems to be due, my horoscope for the week I was diagnosed was so right: A change in perspective might be absolutely necessary.

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  2. 2
    almost 4 years ago
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    I really do have cancer

    Oh No

    X-rays, needles, baldness, the inability to have an XXX, begging an abusive sibling to donate stem cells and debating who I should leave my paltry possessions to (what have I been doing all my life?) definitely changed my perspective. But these things were tolerable. Even the anticipated loss of family and friends and the ultimate question of what to wear to my own funeral faded in the exhilaration of actually waking up each morning. Eight months after my diagnosis I knew I was going to surpass the grim statistics of my predicted decline. An appreciative grin turned around my permanently drooping mouth. Every breath was a new beginning. I became ecstatic over every bite of a family sized Cadburys bar. Now I am grateful for every day that I wake up, for every time I talk to one of my children, for everything I touch, taste or feel, for the absolute cacophony of life - because today may be my last chance to experience it. But that is XXX. That’s just what everyone wants to hear. When you are seriously ill colours do not become brighter, roses do not smell sweeter, and people are not nicer. People are people. Whether you are here or gone, they will carry on being noble laureates or complete XXX. We cannot change the universe because we are about to join it ethereally. There’s a website called “It’s OK to die”. Their web page states: Those who have made their peace with life and who have made clear plans in advance for death, find that the end of life may be transformed into a powerful time unlike any other. Like one of my favourite superheroes, the Hulk, it’s not a power I asked for, nor do I want it. It’s never okay to die. If given a choice, I would live.

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  3. 3
    almost 4 years ago
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    plasma cell leukemia

    Oh No

    When I tuned back into the doctor she was still talking. She said she had been on the phone all day organising for me to go into North Shore hospital the next morning to see a haematology doctor. I needed another blood test for cross-matching purposes. I would be getting a transfusion as I was very anaemic - my red blood cell count was very low. The business end out of the way, she returned my puppy dog stare. “I’m sorry.” I had a little cry. But only a few tears, not a great sob of any sort. Then everything was suddenly at hyper speed. It was if I was standing in the centre of the room with my arms out going around and around like a whirling dervish. The next conversation had the intonation of a child’s rhyme. “Do you want a cup of tea?” “No thank you.” “Is there someone I should call?” “My daughter’s at the mall.” “Do you want her to come here?” “Yes that would be good.” “Do you want to ring her?” “No. I’ve decided I will go and meet her.” “I won’t charge you for delivering bad news. You can go straight out the door.” I had it pulled together by the time I was outside. I rang Charlotte who walked over to meet me and the two of us walked up to the local blood lab. I told Charlotte they had to do more tests and that I had to go to the hospital the next day for a transfusion but I didn’t tell her I already knew I had leukaemia. I couldn’t bear to say the word out loud yet. I am someone who has to mull things over for twenty-four hours before I can deal with it. I have always been that way. So I wasn’t ready to share. I needed to absorb the news into my own skin first. I got the blood test done and at the bottom of the slip I saw the words for the first time: Probable plasma cell leukemia. I hid my wide eyes and large gulps of panic. My doctor had only said “leukaemia” to me. Now it had a name, it had become personal. More than that, it was written in pen which made it real. It wasn’t a mistake. It wasn’t my heart or my lungs, it was a disease. I had a “this can’t be happening” moment but because Charlotte was with me I feigned confidence. When we got home I secretly googled the term. The news was terrible. There was a generic definition which was repeated no matter which site I was on. “A rare and aggressive blood cancer, very resistant to normal methods of treating myeloma and death occurs within eight months”. When I read that, I didn’t yell but I imagined I must have looked like a cartoon character whose eyes were popping way out of their head. I was going to die soon. I never imagined my exhaustion and nosebleeds would lead to this.

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  4. 4
    almost 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    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.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    almost 4 years ago
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    Constipation

    Side Effects

    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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  6. 6
    almost 4 years ago
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    stem cell transplant

    Procedure or Surgery

    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.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    almost 4 years ago
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    Depression/Anxiety

    Side Effects

    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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  8. 8
    almost 4 years ago
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    Sexual side effects

    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.

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  9. 9
    almost 4 years ago
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    obsession with writing it all down

    Side Effects

    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.

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