Leukemia. It's not for wimps.

When I was 33, I was diagnosed with cancer for the second time in my life. This is my account of having leukemia and the following years of recovery.


3. When the Nurse Becomes the Patient

The night before I went into ICU, I was tired. More tired than normal. It was December after I'd been diagnosed with AML Leukemia in October. I was awaiting my bone marrow transplant scheduled for the end of December. That night, I went to bed early. I checked my temperature, if it was greater than 100.5 I would have to be admitted to the Blood and Bone Marrow Unit in the hospital. It was 99.9. I told my husband to wake me when he came to bed and I'd check it again.

I went to sleep but I had trouble sleeping. I woke up and checked my temperature again. 100.1. I hadn't had to be admitted to the hospital since my induction chemo and didn't want to go back. When my husband, Rob, came to bed, I checked it again. 100.2. And still I waited.

Three hours later I woke up nauseated. That wasn't a huge surprise, I'd fought nausea during chemo too. I was three weeks out from chemo though, I shouldn't have been nauseated. Soon I was throwing up in the bathroom. It wasn't normal, chemo vomiting. It was stomach bug, super sick vomiting. Rob called the clinic’s night nurse to see what we needed to do. She paged the PA. The PA said take a Zofran. So I did. And I continued to throw up. And then the diarrhea started. It was horrible. I was dehydrating fast and I didn't even realize it. We called the clinic again. Again we were instructed to wait. I slept in 30 minute increments between episodes of vomiting and diarrhea.

Finally it was morning. We called the clinic and they told us to come in. I went to the bathroom again. I remember throwing up, sitting in the floor, Rob beside me, and then there was urine running down my leg.

I said, ‘Oh my God, am I peeing on you??’

Rob said, ‘Yeah, you are, it's ok, I'll get you cleaned up.’

He cleaned me and himself and the floor. He said ‘Do you want to lay down while I pack the suitcase?’

I said I did and I headed for the bed. I thought I was there. I remember laying down and then Rob was picking me up from the floor. I told him I thought I was in bed. He told me I fainted. I got in bed and Rob dressed me and then quickly packed a suitcase. He asked if I was ready to go and I said ‘No…. I can't walk down the stairs. We need to call an ambulance.’

Rob called the ambulance and they were there quickly. The EMS team put me in a chair to get me down the stairs and then transferred me to a stretcher. I told them I had leukemia and they should put a mask on me. The female EMT gave me a thick, tight mask. It was all they had and it made me feel like I couldn't breathe. My vision was dark. I couldn't see any of their faces and I told them so. When we got outside, I could see light and shapes but not detail. They put me in the ambulance and shut the doors. They wouldn't let Rob in the ambulance with me and he had to drive separately.

In the ambulance, I told them that I had a PICC line and that they should start some fluids. The EMT told me he wasn't allowed to access a PICC line, but he could start an IV. The driver, the female, told me we'd be at the hospital in 15 minutes and they could access my PICC line and start fluids. I thought, what was the point of the ambulance then?

We got to the ER and I got a really nice, seasoned nurse. She drew blood, started fluids and I started to feel better. We chatted about me being an ICU nurse, recently changed to a Day Surgery nurse. I called my parents and told them what was going on but I didn't want them driving from Alabama in a hurry. I told them to stay home until we knew more. I slept off and on.

A few hours later, the nurse took my blood pressure again before ending her shift. ‘That can't be right…. Let's try that again.’ She said. And then took my blood pressure again, repositioned the blood pressure cuff and took it again. I said, ‘What is it?’ She said,’65/49…. Do you feel like your pressure is that low?’ I said, ‘I feel fine. Just tired.’ She hung another bag of fluids, drew some more labs and left the room. Soon she came back with another bag. I asked what it was. She said,’We're starting you on Levophed. Your pressure isn't coming up.’ In my head all I could hear was my nursing instructor saying, ‘Levophed leaves ’em dead.’ Even though I know this isn't the case now, more than a decade after nursing school. Now Levophed is the first line drug for sepsis. I was still scared though. Visions of my patients with purple fingers and toes, later with amputated fingers and toes, went through my head.

Soon she was hanging another bag. I asked her what it was. It was Vasopressin. Another drug for my blood pressure. I asked her why, even though I already knew. She said, ‘Your blood pressure isn't responding to the Levophed and fluids.’ I asked her how much fluid I had. She said, ‘Four liters. And your lactic acid is 4.6.’ I was septic. This was sepsis. I'd dealt with hundreds of patients with sepsis over the years. They were actually my favorite ones. And now I was one of those.

She started a third bag, Neosynephrine, and told me they were transferring me to the ICU. I was scared but I was trying to be brave for Rob. And I felt oddly calm, even though I was scared.

I got to the ICU after night shift had started. The nurses and techs moved me onto the ICU bed because at this point, I couldn't move myself. There were lots of people in the room. My nurse was a young, nervous, inexperienced type. By now, I was starting to have trouble breathing. All the fluid was building up in my body and had nowhere to go. I told the nurse I needed to pee and she offered me a bedpan. I told her I didn't think that would work, but I'd try. I attempted to lift myself onto the bedpan and I was out of breath from the attempt. I told the nurse to get a catheter. She hesitated and then said nervously, ‘Umm… I have to...umm… Get an order from the doctor.’ I said, not sympathetically, ‘Well then get one. I doubt he'll have a problem with it.’

Nervous Nelly went to get an order and came back with the catheter. She had another new nurse with her. They carefully laid out everything in the most sterile way possible. Finally they were ready to put it in. They jabbed around with the flexible plastic catheter for awhile. They were both aiming way too high. I was thinking female anatomy probably wasn't their strong suit. It's hard to instruct students on where the catheter goes when you can't see and point to the area though. I was thinking, ‘I'm young and I haven't had kids, this is likely to be the easiest catheter placement you're gonna get.’ But I kept my mouth shut and they continued jabbing at my privates. Finally I said, ‘Maybe you should ask another nurse to help you out?’ Nervous Nelly quickly agreed and went to grab another nurse. She returned with an experienced nurse who took over and put it in on the first attempt. I hoped she would give an anatomy lesson, but she did not. It didn't matter though, I got a catheter and finally felt relief. I later found out that my urine looked like Coke. It was thick, sludgy and dark brown. My kidneys were shutting down.

After the catheter experience, my room filled up again. Nurses, Respiratory Therapists, doctors and mid-levels all gathered to do their jobs. The doctor had spoken to my oncologist and my oncologist wanted my PICC line out, in case that was the possible source of infection. He had one of the mid-levels to put a central line in my groin and, while there was a sterile field, put an arterial line in my wrist. They drew arterial blood gases (ABGs) and the results weren't good. My Sodium Bicarbonate was low, probably both because of my breathing and my kidneys shutting down. The doctor wanted to put me on BiPap. Visions of old patients on BiPap popped in my head. Their mouths gaped open and dry, crusty, the death rattle in their throats. No matter how much mouth care you did, you could never keep their mouths moist. I told the Dr no. I told him that we all knew I was headed for a vent, go ahead and intubate me.

The Dr argued with me. He told me that my bicarb was low and that BiPap would help. I said, ‘Have you pushed any Bicarb?’ He had not. I said, ‘How about you push a couple of amps, maybe start a drip, and see how I respond?’ So he did. It didn't help.

Finally the decision was made to intubate. I called Rob over to the bed and told him I loved him. I asked him to tell my parents I loved them too. At this point it was about two in the morning. I told Rob not to call my parents, wait until the morning. I regret that decision now. Obviously I wasn't thinking clearly. Unfortunately I didn't tell him to call anyone else. That's another of my biggest regrets. I wish he'd had someone there with him, to help him go through this horrible time.

Everyone prepared for intubation and the anesthesiologist was called. I was relieved. Anesthesiologists intubate people all day long. They're the best at it. When he got there, I got everyone's attention and I said, ‘Please, please keep me sedated until the tube is ready to come out. That's a priority. I don't want to know it's in there until it comes out.’ I wish I could tell you they honored my wishes. They pushed some sedation and I went to sleep.

I woke up a few minutes later, unable to move. The sedation had worn off but the paralytic had not. I was paralyzed. This was my worst nightmare! Sometimes the doctors don't get the dosage right and the paralytic outlasts the sedation. So the mind wakes up, but not the body. My mind was awake. I couldn't move, I couldn't breathe. And no one was around me. They were all at the end of the bed. No one was giving me oxygen. The tube was just sticking out of my mouth. I thought, surely someone will notice my heart rate and blood pressure going up. My oxygen saturation dropping? No one did. I thought about the effects of an anoxic brain injury and tried to remember how long I could go without oxygen. Finally, what seemed like a lifetime later, the paralytic wore off. I still couldn't speak because of the breathing tube, so I grabbed the bed rails and I shook the bed as hard as I could. People ran to the bedside and soon I was asleep again.

The next few days were touch and go. I was on a multitude of IV drips to keep my blood pressure up, keep me sedated, and, the sodium bicarbonate drip I'd told the doctor to start. At some point my kidneys had shut down and they were discussing dialysis. Instead, they opted for a Lasix drip to kick-start my kidneys. It worked. My kidneys picked back up.

I don't remember a lot from my time on the vent, thank goodness. I remember seeing Nervous Nelly tracing the IV lines one night. She was trying to see what was connected where and what was running together. In my head I thought, ‘Label your lines! You'll save yourself so much time and headache!’ But of course I couldn't say this and I went back to sleep.

I remember waking up and seeing Rob curled up in the window seat. I waved at him and he walked over to the bed. I reached out and took his hand and I went back to sleep.

Another night I woke up to two nurses talking and standing at the sink in my room. I think they were preparing to bathe me. Nurse One said, ‘It's such a shame. She's so young to have to deal with cancer anyway and now she's got mets to the lung too.’

Nurse Two said, ‘It's awful. Stage 3. Poor girl.’

Lung cancer. It explained why I had trouble breathing, why I was on the vent. I wondered if they had already done my surgery. I wasn't in pain. I felt one side of my chest and then the other. No chest tube. I hadn't had surgery yet. I thought about how hard it would be for Rob and my parents to make the decisions without me. I wondered how long the chemo would be for that. One more fight I'd have to go through and it scared me. It scared me so so much.

Finally the nurses walked over to the bed and saw I was awake. I pointed to my chest and held up three fingers. They didn't understand. I tried again. Nothing. Finally I mouth, ‘Is it me?’ And I point to my chest again and hold up three fingers. Finally awareness dawns on Nurse One and a horrified look crosses her face. ‘No! Oh no! I'm so sorry! That's a different patient! That's not you! No, you're fine!’ And I go back to sleep.

That night my friends visit and when they come in, I'm agitated. The nurse seems nervous and tells them she just finished cleaning my mouth and that's why I'm agitated. I point to my chest and hold up three fingers, but of course my friends don't know what it means.

Another night I wake up, I don't know how far into my stay I am, and the nurse, Nervous Nelly again, has put in a feeding tube. It's a small one that goes from my nose and it should end in my small bowel. It doesn't. It isn't right. She should do an X-ray after she puts it in and she doesn't. My respiratory therapist friends are in there and they sense something is wrong. So one of them repositions the tube, even though that isn't her job. That doesn't fix the problem though. My parents come to visit. I point to the tube and draw an X on my chest. They don't know what it means. Finally I mouth slowly but emphatically, ‘Get. The. Nurse.’ They do and it's a different nurse. She understands though. She gets an X-ray and the tube isn't in the right place. She repositions it and finally it's in the right place. I go back to sleep.

Days later, they're ready to take the breathing tube out. They wake me up and have me to breathe on my own with the tube still in. I have to do it for 30 minutes and then it can come out. My parents and Rob are there, holding my hand and coaching me. I try not to panic. I watch the clock and count the minutes while breathing through this large straw. Finally it's time. The respiratory therapist tells me she's going to suction my secretions one more time and pull the tube. I've done this a hundred times or more to my patients. I never knew how terrifying it is. It feels like all the air is suctioned from your lungs. Like your lungs have collapsed on themselves. And then the tube comes out. I could finally breath. I could almost talk. My mouth was the driest I've ever felt.

The nurses told my family I could have mouth swabs, but no ice. And finally ice chips, but I couldn't swallow. So one of them would feed me ice chips and another would suck them out with the suction catheter. It was all I wanted. I couldn't talk, so we devised a system where I would hold up one finger for ice and another for suction. I wanted it without ceasing and I can't imagine how hard that was on my family.

That night my parents went to my house for the night and Rob stayed with me. Hour after hour passed with him giving me ice chips and then suctioning. I couldn't lay still. My whole body twitched. My feet would shake uncontrollably. I couldn't or wouldn't sleep. Rob was exhausted. The nurse gave me Ativan and then morphine to try to calm my agitation and help me sleep. Rob begged me to close my eyes and try to rest.

I hallucinated. The compression hoses on my legs would pump up and I named them. I don't know why. It made me feel better to have a name for them. The left leg would pump up: that's Roger. Now the right leg: that's Davy. The blood pressure cuff? Well he had a name too but I don't remember it. The computer and the TV created a shadow on the wall and I was convinced it was a homeless man in my room. He seemed harmless though, so I let him stay. It was probably cold outside.

Finally around 3 am, I convinced Rob to call my parents and have them to come back and stay with me so he could get rest. He insisted he'd stay and sleep when I slept. I told him I'd been asleep for five days, I wasn't likely to sleep any time soon. So he called my parents and when they got there, he reluctantly went home. I think he finally managed to rest though. Unfortunately my parents were kept busy with the ice chips and suctioning.

The next day or maybe night, I guess, because Nervous Nelly was back, they told me I hadn't had a bowel movement since I'd been in the hospital so they were going to give me lactulose. I thought it was a bit lax on their part to have let me go so long, but whatever. So they pushed the lactulose down my feeding tube that was left in after the breathing tube came out. It didn't take long for the lactulose to kick in. Any nurse who's ever had a patient on lactulose knows how it works. The dam broke and I went and went and went, uncontrollably. I couldn't move or turn myself. I was so weak couldn't even lift my arms, much less anything else. They would turn me to clean me and I would have these horrible coughing spells. It terrified my mom. She kept asking if I was ok. I didn't find out until later why she was so concerned.

The nurses cleaning me were new and unorganized. They would put my head down, turn me and realize they'd forgotten something. You have to put on an isolation gown to come in my room, so the nurse would either have to shout down the hallway to another nurse for supplies or take her gown off, go get the supplies and then put the gown back on to come back in the room. All the while, I'm tilted with my head down and I'm on my side. My oxygen levels would drop. My heart rate and blood pressure would shoot up. I would cough until my face was red and, I found out later, I was coughing so hard, I was breaking blood vessels in my eyes. The whites of my eyes were blood red and stayed that way for weeks. I looked like a vampire. No wonder my mom was terrified. I tried to explain to the nurses the concept of using all my reserve, but it fell on deaf ears.

Before I could leave ICU, I had to work with speech therapy and physical therapy. Speech therapy came in and asked me what my favorite foods were. Now I'm a girl that loves to eat. However when she asked that question, I turned into the kid from A Christmas Story when he meets Santa. Instead of a football though, I thought, ‘Food? What's food?’ She said, ‘Do you like chocolate cake?’ Chocolate cake? What's chocolate cake? I dumbly nodded. She had me to swallow some ice chips, some applesauce and some thickened liquid. I did fine with them all and expected to get the tube out that day. I did not.

Next physical therapy came in. She was very sweet and enthusiastic. She did some movements with me on the bed, movements she'd probably been doing while I was sedated on the ventilator. Then she asked if I could sit up on the side of the bed. I said no. She asked me to try it. So she and her assistant pulled me up and to the side of the bed and propped me up with pillows. I was pretty proud of myself, I have to say. And then I had a bowel movement and had to lay back down. You know what they say about pride.

Finally, a day or so after being extubated, they transferred me to the Blood and Marrow Transplant Unit. Home. The unit I'd spent almost a month on after my diagnosis and induction chemo. These people knew me. More importantly, they cared about me. I was so happy to leave ICU, I could've cried! The nurse that helped transfer me out of ICU was the best one I'd had. She helped and directed the nurse assigned to me, another baby nurse. She organized my IV lines, consolidated everything so that it was easier to travel. Truly a nurse after my own heart. As we rolled quickly down the hall, I asked if she was the charge nurse. She laughed and said, ‘Me? No, I'm the tech.’ The best nurse I'd met was a tech.

I was transferred to a tiny room with a view of a brick building in the BMTU. Annette, an angel of a tech from that unit, bathed me immediately when I got there. She used hot water and real soap and a basin. The ICU nurses had bathed me but they used prepackaged wipes. This was wonderful on my painful skin. I had gained and lost about forty pounds in fluid while in ICU. My skin had stretched and then shrank and it hurt more than I thought possible. After Annette bathed me, she lotioned me and changed my gown and sheets. I felt like a new woman!

My whole family accompanied me to the tiny cramped room. I finally convinced my parents to go get some rest and Rob stayed the night with me. I could finally talk so we talked and talked and talked. And we laughed and laughed. It was wonderful!

Around six in the morning, I started to have trouble breathing again. We called the nurse, who in turn called the doctor, mid-level and respiratory therapists. By this point my parents were there too. The doctor told me I'd have to go on BiPap. I refused. He told me I'd end up back on the vent and still I refused. He sent the respiratory director over. She was a friend of mine from the last hospital I'd worked in and, as it turned out, one of the best people I've ever known. She brought the BiPap and a dozen different masks over. She told me I was going to wear this. And she even brought the BiPap machine she knew I was familiar with. So I gave in. I wore the BiPap all that day and night. The next day I got some breaks and by that next night, I really didn't even need it anymore.

While I was on the BiPap, I recounted the story of the lung cancer misunderstanding to my parents. I wrote it down for them since it was hard to hear me talk with the mask on. With good reason, they were livid! Once I came off the BiPap, I told the charge nurse and she got a patient representative for me. I told her what a terrifying experience I had in ICU. I told her it really was just a matter of experience. I told her the nurses needed more training when they were that new. I hope I made a difference. I'm not sure that I did.

The next night, my dad and Rob went home to get some rest and my mom took the night shift. We stayed up all night and talked and laughed. It probably isn't obvious from this story, but laughter is important to me. We ate ice cream and enjoyed our time together.

Every day and every night, I had good nurses and good techs. Every day I did more work with physical therapy, speech therapy and they added occupational therapy. I had to learn to sit up again. I finally got the feeding tube out and learned to eat and swallow again, with someone else's help though. I couldn't yet feed myself. When I finally got my phone back, about three days out of ICU, I thought Rob had bought me a new phone. It was so heavy, I couldn't lift it! I certainly couldn't text or use it in any way. Once I could lift my arms, I learned to feed myself, to put my socks on, and then to stand. Eventually I could take one or two steps, and eventually I could use the bedside commode instead of going to the bathroom on the pads on the bed. I still never learned to use the bedpan. Those are painful!

Finally about three or four days out of ICU, I slept. I started to have a recurring nightmare. Every night, I walked into my grandmother's house and every night I was drawn to the foyer between the bedrooms and the bathroom. I would be pulled into that area and I was paralyzed. A man's voice would whisper sarcastically in my ear, ‘Isn't this scary?’ I couldn't move or breathe and finally I would wake up, terrified and gasping for air. I would wake up whoever was staying with me that night, just so I could have company and remember what happier times felt like. If I couldn't wake anyone up, I would play my music on my phone next to my ear. I didn't tell anyone about the dream, but I was terrified. I was afraid I had gotten so close to death, I might have brought something back with me. And he might still be trying to pull me to the other side. I was afraid to sleep.

Several days after taking my first steps, I walked out into the hallway. The physical therapist was in front of me with the walker, my mom was behind me with a wheelchair in case I got tired. I walked about a hundred feet and had to sit down. Then I got nauseated and had to be wheeled back to the room. That night, I walked that distance and back to my room. The next day, I walked around the entire unit. I had to take breaks to sit down, but I made it! The day after that, I walked around the unit and only had to sit down twice! For reference, twelve laps around the unit is a mile and I walked that daily when I was first diagnosed.

The night after I walked the unit, I had the dream again. This time though, I fought the unseen force that was pushing me into the foyer. I fought so hard against it, I fell backwards into the front bedroom. I slammed the door so hard, it bounced back at me in it's frame. I expected to see the scary man that had whispered in my ear. He wasn't there. And I woke up. I haven't had the dream since. I don't know if maybe I did bring something back with me, or, the other possibility, maybe my limited mobility in real life was manifesting in my dreams. Either way, I'm glad it's gone.

A few days before Christmas, my doctor told me I could go home. After a long stay in the hospital, he felt I was well enough to go home. I was not at all convinced. I still had to walk with a walker, I still had trouble getting out of bed, I'd only been feeding myself for a week. But home I went.

Rob and his parents put our bed downstairs in the living room because I couldn't climb the stairs. They had cleaned the entire house to help prevent me from getting sick again. We never found out what made me sick in the first place, so that was scary. Rob's mom put Christmas lights on our stairs and that was our only decoration for the season.

Our first night home, I watched Dolly Parton’s movie, Coat of Many Colors. And I cried. I hadn't cried the entire time I was in the hospital. The whole time I held it together and then I watched the movie and the dam broke. Rob held me while I cried and I told him how scared I had been. He cried and told me how scared he had been too. For the first time, I admitted to myself how close I'd come to death. And I was terrified.

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