Acute Myeloid Leukemia : Part 3 : The End

I insisted that my boyfriend, Taggart, go on the trip without me, there was nothing he could do, and after much debate he went. Family and friends were ushered into the room in shifts. It was a river of tears and inexplicable sorrow. It was a blur of doctors and nurses and charts and updates. I had called mom’s best friend, Carol, who lived in Florida. They had become best friends about 25 years ago in our old neighborhood. Carol booked her flight and was there the next morning, which just happened to be mom’s 56th birthday.

It was the most depressing birthday party I’ve ever been to. Joey, Carol and I sat around her bed, reading her the dozens of birthday cards, opening her presents and showing them to her as if she could see them. We cried with each card we read. We told funny stories and laughed through the tears. Flowers were not allowed, but right outside the glass wall of her room, dozens of flower arrangements overflowed on the nurse’s station.

I hadn’t left the hospital since I had arrived the day before, nor had I slept or eaten. I had quit smoking for two years, but started the night before with a vengeance. Sitting outside the hospital on the curb, one after another, rocking back and forth, trying to soothe my obliterated nerves.

Carol and the nurses convinced me to go get some sleep, or at least take a shower and get some food. I went over to my friend Candace’s, the one who was getting married. She lived close to the hospital, and when she opened the door, she gave me a hug that said a thousand words, and led me up to take a shower. When I came out, she poured me a strong cup of coffee and we sat in the sun on her rooftop deck, smoking cigarettes while I filled her in. I was so sorry that I was going to miss her wedding, of course she understood and told me I would undoubtedly be there in spirit.

There was no chance of sleep, but I managed to get down half a bagel in the hospital when I returned an hour later. My dear friend Amanda, who I knew from college, came up from DC and stayed with me in the hospital. Those days seemed like an eternity.

On the third day, I had been sitting alone with mom and talking to her when something miraculous happened. Her eyes shifted towards me ever so slightly, and in that instant I swear I saw a flash of recognition. I had my hand wrapped in hers, and I said, “Mom! Can you hear me?” and I felt her hand quickly squeeze mine. I yelled for the nurses to get the doctor! I don’t remember what family was or wasn’t there at this point, or for the next few days because it was such a blur, but when the doctor and nurses came in I told them what had happened, and when I said to her again, “Mom! Can you hear me?” they saw the quick pulse of her squeeze. I was flooded with hope.

They told me this was great, but not to get too excited. They said that no one really knew what she could or couldn’t understand, or if it was a real reaction or just an impulse. But I knew. I knew in that moment that she heard me deep, deep down in some part of her being. When everyone cleared out, it was just my brother and I. We each took turns talking to her, as her children, her own flesh and blood, we knew with no uncertainty that there was a part of her that heard us.

I told her that it was ok for her to go. I told her that I loved her so much and that she had taught me how to be strong. I told her that I would be ok and that I would take care of everything. I cried, but I meant it. I knew she would hang on for us, and I felt that I had to let her know it was ok to stop fighting.

After that brief but incredible gift, she went downhill fast over the next two days. The bottom line was that she could not breathe on her own. She was horribly jaundiced and her liver and kidney’s were failing. You could barely recognize her from the edema. She was no longer passing fluid. Her blood pressure was dangerously low and required copious amounts of medication just to keep it even remotely stabilized. She had lost oxygen to the brain and had suffered brain damage.

Under the most miraculous of circumstances, if she were to somehow wake up, and her liver and kidney’s started working even a little, and even say she could breathe on her own, she would still have monumental brain damage, and still have fatal leukemia.

After the fifth day on life support, as the next of kin, I was faced with the hardest decision I will ever have to make, to take her off life support. That night, I called a family meeting at the hospital. My brother, mom’s two sisters and her mother, and her friend Carol were all there. We sat in a private visitors room as I explained the situation.

I knew, in my heart of hearts, that mom would never want to live this way. She was deteriorating so rapidly, and I knew she was being kept alive by those machines, that she was not in there anymore. I wanted nothing more than for this not to be the case, and if there were even a sliver of hope I would have jumped at it. At this point, I knew we were only keeping her here for us, for our own needs. She was never coming back. Karen, the Afro rainbow wig-wearing fighter of magnanimous proportion, had left the building.

Everyone agreed, everyone except her younger sister. She fought me, said I didn’t know what was possible, that we should leave her on the machines and see what happened. She could not see it rationally, she was so emotional, as we all were, but she needed someone to blame, and that someone was me. When she was over ruled and we agreed that we would take her off support in the morning, I became the daughter that killed her mother, in her eyes, to this day.

I let the doctors know my decision, and they all assured me, without a doubt, that I was making the right decision. There was no coming back from this. I asked them what to expect when we turned off the machines. They said it could be a few minutes, or a few hours, that she would most likely just stop breathing, but that she would not be in pain.

The next morning was gray and rainy as we all gathered around her bed and said our final goodbyes. The past five days had taken such an emotional toll on all of us, and this was the moment we all dreaded from the very start of this disease. The doctor removed her breathing tube.

There are certain sounds you don’t even notice until they are gone. There had been a constant humming of machines, the in-and-out pumping of air into her lungs, the endless blips and beeps of monitors. The silence was deafening as the machines were shut off.

As I held her hand, I watched her lungs fall for the final time. There was none of her own life left in her, as she slipped from this world and was gone.

I fell over her, lay on her still and lifeless body and cried. She was at peace. I kissed her head and fled from the room, crouched to a seat against the wall in the hallway, utterly drained, as I cried the words over and over.

I don’t have a mother anymore.

34 replies

  1. I wasn’t looking forward to this segment as you might guess. Had the box of tissues next to me. Grrrr, then you and the family had to go “make that decision”? Throw that empty tissue box across the room…missing the damn trash. I would’ve been useless in that family meeting.

    Gripping story Tracy, to say the least.

  2. I know that was the hardest thing ever. I know she appreciated you and your brother letting her know it was okay to go.

  3. I understand exactly how you feel, this situation echoes what we went through with my mother. We had to make the decision to essentially starve my mother to speed up her death. This is why I believe euthanasia should be legalised in Australia – no one should have to die a slow and painful death.

    Thank you for sharing your touching story. Much love to you

  4. Beautiful job Tracy. I was far too young to be included in any decisions about my mother, but I know my father agonized over it. Telling your mother that you’d be ok without her must have been unbelievably hard, but I’m sure it relieved her in some way.

    • It sucked, I’ll never know if she heard me or not, but I like to think that she did. Now, being a parent, I can’t even begin to imagine my boys having to go through that. I know I would hang on tooth and nail for them. Ugh, that’s a depressing thought that reminds me I need to quit smoking.

      • I bet she did hear you on some level. And as far as smoking, it’s a nasty habit that I’ve had on and off for 30 years. I’ve been off them for like 6 weeks this time and it’s good, but it’s better just financially. They’re $8.50 a pack in Mass. But you can get them for only $7.50 if you blow the priest. Get it? It’s a pope joke.

  5. Ok, so when you posted part one, I knew I wasn’t strong enough to read it. Today, I was ready. I sat here and read all three posts and cried. My mom had a stroke in the fall and I remember feeling and thinking everything you just wrote about. Thankfully for me, my mom survived and is home now. While I know it’s not quite the same as cancer or leukemia, I can relate the emotional battle and the strength needed to be there for your mom. I kept thinking the worst and that I’d have to make that call to the rest of the family. Today, I cried out my emotions of the fear of loosing her. Powerful writing. I havn’t cried in years. I will tell my friends, that Tracy broke the ice that was covering my heart.

  6. Similar situation with my dad when he died in a hospital a long time ago. I will never forget the details, the exact memories, they stay in mind forever. I remember the phone call from the cardiologist and how his voice sounded, and then me speaking to the nurse who was with him. I too told my dad it was ok to go, we would be fine, we would love him forever. And I added our favorite number. Some things you just don’t forget. Hugs.

  7. This is all so powerfully written. I experienced some similar things with the loss of my father – the rapid decline, the awful decisions, the peace and the loss – no words. I’m sorry that you had to go through that.

  8. Your heart really has been split in two, hasn’t it, Tracy?
    But you’ve channelled your pain and conflicted feelings surrounding your mother to create something of beauty that will give people hope and help them navigate their own twisted and mixed-up lives.
    As always, well done.

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