I really didn’t want to come back to the hospital this time. I felt the fever coming on, but I ignored it the first 24 hours, hoping my temperature would stay low and go away. The second day, I started to feel guilty and sicker as my temperature climbed a little higher to 101°F, definitely passing the critical threshold of 100.4°F. Finally, when the kids were in bed on Monday night, I felt obligated to telephone the on-call hematologist. I entertained the fantasy she would tell me to wait a day and see if the fever would come down on its own, but her reply was unequivocal. “Come to the Stanford ER immediately. You can also to go to any of the ER’s along the way if you start to feel worse. Usually I say 30 minutes maximum, but I’ll let you drive to Stanford if you leave now.”
After a little texting exchange with the neighbors, the kids were covered, and Mike and I left for Stanford with my overnight bags packed. On the way I felt low. As my collection of less favorable hospital experiences was growing, I was finding it harder to stay positive about more hospital time. I couldn’t help but visualize the sleepless nights, the desperate roommates. I had survived, even learned, from these experiences, but I wasn’t eager to repeat them. Somehow I had really convinced myself if I truly expected the neutropenia wouldn’t cause a fever this time, I could stay home. But despite my best attempts at acting like I would remain at home, the fever came anyway. The half-moon gleamed in the night and we arrived sooner than I was ready at the ER valet (even with the added 10 minutes around the construction site to the back of the hospital).
Mike kindly walked me in and waited through the check-in process. But when we sat down again to wait, I told him to go. This is all there will be, lots of waiting. You should go home and sleep so you can wake up and take care of the kids. And so reluctantly he did.
Strangely as I spent more time in the ER waiting room, my gloomy mood began to lift. For one thing, I felt my fever coming down, which took the headache away. I knew my fever would come down as soon as we arrived at the hospital, but even that fact was not making me regretful. The waiting room was not nearly as crowded as last time. I had packed a little less stuff, and I no longer felt self-conscious about bringing my bags. I knew where I was headed.
The ER staff offered to let me sit behind a screen away from the general public, a kind of VIP waiting room, where they would get blood work started even before my ER room was ready. Luckily, I was engaged in a really great novel and was happy for the chance to keep reading. Soon a stylish phlebotomist arrived and together with a really young energetic nurse they did the double draw together as efficiently and silently as a dance. The only words they said to one another were discreet compliments, and I wondered if they were dating. I even got to do a urine test before my room was ready.
When it was time to move to a room, my kindly nurse carried my backpack. As we passed several gurneys in the hall with people trying to sleep or holding their pained faces, I walked comfortably to a private room. Being neutropenic has its advantages, I thought guiltily.
To my surprise, the medical staff led me back to the same pediatric room I occupied when I was treated for my blood clot during my first Stanford ER experience. However instead of kindling bad memories of confusion, pain and endless waiting, the old room, with its white, white walls and always-on TV was comfortingly familiar. The nurse told me about the gown on the table, but this time I didn’t even ask if I needed to put it on. She pulled the curtain closed, but not the door. I peaked my masked face out into the hallway. Can I take off my mask in the room, I asked her, and she said “Yes of course!” and I was quite sure she didn’t understand fully what I was asking.
I did take off my HEPA-mask, but only after I closed the door myself and sanitized my hands and the door handles very well. Next I changed into my own cozy hospital clothes, not even considering the hospital gown. Then I sauntered confidently to the TV and found the manual power button and stopped the silent visual racket. Ah, how I have grown, I thought proudly. The problems that plagued me on my first visit – freezing in my gown wrapped while waiting endlessly for nothing to happen, staring at the muted day-time courtroom drama all day whether I wanted to or not, wishing the nurses would shut the door and dim the lights, watching my phone (my only connection to the outside world) slowly lose its power and being afraid to ask about using the electrical outlets in the room to charge it – now seemed so silly. These problems were so fixable once I had the confidence to take control of my environment. Of course there is a delicate balance of knowing how to take control without looking like you are taking control. From what I have gathered, the trick is to always smile and use kindness with your nurses and doctors. Engage them in casual conversation, be cooperative for routine things that can’t be changed liking taking vitals, don’t fight them if they have a personal hang-up with minor inconveniences like hospital socks or bed rails up (you can always change these things when they leave the room), gently educate them if there is medical information they need to know (my blood pressure can only be taken on my legs, I need platelet transfusions at 40 not 10), and if there are any medical disagreements just kindly but firmly ask to consult your doctor first.
Before I even had a chance to sit down, the very young ER resident entered the room. Is he even twenty-one, I wondered? He asked me what brought me here. I say directly, I have a fever and I am neutropenic. He turned white and said, “I’ll be right back.” A few minutes later, a portable HEPA-filter air machine was being pushed into my room. If you haven’t seen these machines, they are about the size of a large gorilla and make a pleasant sleep inducing ambient noise. I like to think of the big white box as a giant sound machine tuning out the chaos of the hospital. Following the HEPA-machine and its masked attendants was the young resident, this time wearing a mask himself. “I just want to protect your safety,” he explained. I was pleased. After the routine questions and health checks (my symptoms, my fevers at home, listening to my heart and lungs) he told me what I already knew: the team would do a neutropenic work-up with blood tests, urine tests, chest x-ray, virus nose-swab, and most likely start me on antibiotics and admit me to the hospital. This time it didn’t even occur to me to ask when things would happen. I knew he had no idea.
How things proceeded after his initial visit have become a blur, probably because of the late hour and the exciting events that followed. I know there were a handful of additional visitors – an admitting staff, a personal belongings check, some nurses, maybe some more doctors. I remember someone telling me it was really a good idea I came in and praising me for my decision which made me feel good. In the end the doctors decided to start me on two antibiotics intravenously through my PICC line. A nurse came in. Apparently my regular nurse (what regular nurse?) was on break and this one was covering. Perhaps it was my mistake to ask if the two antibiotics would be administered at the same time. I wasn’t trying to tell her what to do, I was just curious how it worked. She looked at me with interest and said, “Maybe I will run them at the same time. Do you have two lines?”
In no time, two antibiotics were running and she left the room with only a brief reminder to call if anything felt unusual. I thought nothing of it, she turned out the lights and I tried to tuck in for a little bit of rest, if not sleep.
I must have fallen asleep at least for a few minutes but I awoke with a start convinced there was something dripping on my neck. I started to itch my neck. As I awoke into partial consciousness, I realized my head was burning and every hair follicle needing to be itched at once. I was positive I was allergic to the pillow. I sat up abruptly. I needed to see myself in the mirror, but as I awoke fully I realized my situation. The IV pole was attached to my bed with relatively short fluid lines going to my arm and both bed rails were up. I definitely could not reach the light switch near the door even with creative acrobatics. In a panic, I crawled over the head of the bed towards the sink and mirror, looking for a light. No switch near the sink either. But my mild physical activity set off the sensor for my continuously monitored pulse. I looked at the value – 190! 140! WHAT IN THE WORLD!! My pulse is almost in the 60s, 70s, maybe 90s if I am moving around moderately. No wonder the monitor was beeping. I quickly tried to navigate the wires and fluid lines, making my way back into the bed over the head so I wouldn’t get in trouble. At the very moment I got back in bed, a (different) nurse came in. “Just checking to see how you are feeling,” she said casually, apparently unaware of the beeping pulse sensor and my dangerous escape attempt.
I am really itchy, I said frenetically itching my stubby hair, knowing I was probably making it worse by itching. I need to stop itching, I thought. I look crazy. But I couldn’t stop. The moment I stopped itching, the intense burning started again and I could think of nothing but itching. I didn’t even have big enough hands to itch my whole head and neck at once; I had to keep rotating around. People told me my buzz cut might get itchy, was this what they meant? It couldn’t be. Maybe it is psychological, I thought, the more I itch the itchier I get. I tried to stop but stopping was impossible. The nurse kept asking me questions but I could barely focus. She turned on the lights, “Are you always this red?” I am generally a red person but I am not always itchy, is all I managed to say. “I am getting you some benadryl and a doctor.” In a very short time she returned with a syringe. Conveniently, one of the antibiotics had finished its drip. I was starting to feel very warm with a sort of pressure (or lack of pressure?) in my neck and head. It made me feel agitated and a little confused. She disconnected the line and started pushing liquid benadryl into the free line. Will this help the itching pretty quickly? I asked desperately, trying to momentarily suspend my ridiculous itching while she worked on my PICC line. “It should kick in pretty quickly, give it 10-15 minutes. You may feel flushed from the Benadryl.” I was confused. I already felt quite flushed. More like beet red. The “doctor” walked in, another new face. He sat casually on the trashcan. He asked how I was feeling. I told him, Very itchy. Weird. The itching is really bothering me. He told me the benadryl should help and left. I asked the nurse for a wet wash cloth. She came back with one and I rubbed it all over my head. “Does that help?” she asked. Yes, I lied, and she left.
I tried to imagine the itching is getting better. I definitely felt the flushing getting worse. I lied down but nothing helped. I felt extremely agitated. A few minutes later, the nurse came back to check on me. “Are you feeling better?” she asked, clearly expecting me to say yes. I don’t know, I said. My mind was not working very well. “Are you afraid of the medication?” she asked gently. No! I mean think of all the chemo. I don’t know how to say it. My head feels weird. It is hot, it feels blocked. I might, I might, I might….and then it dawned on me. I might throw-up! No sooner were the words out then I started gagging. She dove for the plastic basin. Luckily I hadn’t eaten much in the last few hours so the damage was minimal. I have to go to the bathroom, I said with sudden urgency. “No, stay here. I am going to get the doctor.”
This time she returned quickly with two doctors, the ER doctor and the hematologist fellow on-call. The three stared at me like an animal in the zoo. “Do you have a lump in your throat?” Yes! I said. Like I swallowed a vitamin and it got stuck. And I am itchy. And I feel stressed and I can’t think. And nauseated and my stomach is cramping. “Do you need some water?” the doctor asked, concerned. I didn’t actually swallow anything. There was some confusion while the nurse clarified that she had given the benadryl intravenously. “Are you having trouble breathing?” No, not that I can tell, I started to say but all of a sudden I started choking on I don’t know what. The ER doctor sprung into action. “Get another benadryl injection, get an epi, and STOP the antibiotic,” she firmly commanded glaring at the nurse. She placed her plump arms on my legs gently and looked me in the eye, “You are having an allergic reaction. We will give you benadryl and an epinephrine shot and steroids.” I started to shake uncontrollably. If BMT chemo is like this, I thought, I am going to have to be really strong. I fought the urge to vomit on her.
But literally about 90 seconds after the nurse stopped the antibiotic pump, before the benadryl, before the “epi,” before the steroids, I started to feel a little better. My mind cleared a bit. I am feeling a little better, I exclaimed. The nausea was suddenly gone. I no longer had to pee. Wow, I am feeling a lot better than about 1 minute ago. I am still itchy, but I am feeling a lot better. The nurse returned with the second benadryl dose and pumped it into my arm. The doctors kept questioning me about the lump in my throat, and all I could say was I really want to lay down. And so I did lay down and I felt another notch better.
In seven minutes they returned and asked about the lump in my throat again. Yes it is still there. And then they noticed the red spots. On my inside elbows, torso, face, neck and chest a rash was developing. “Yes, definitely an allergic reaction,” they nodded with satisfaction. Since the “lump” was still there according to my report, they decided to give me the “epi” shot, warning me several times the shot would make me feel horrible. It was hard to imagine feeling worse. Whatever is best, I agreed (I was not sure what to say). But the “epi” shot, literally a shot of adrenaline, was not that bad. It was a shot in the arm and it made my arm a little sore and made me shiver like crazy, but I felt my neck cooling rapidly and suddenly it felt great to take big deep breaths. Strangely as I lie on the bed chattering away, I felt a huge relief. The “stress” and “confusion” evaporated. I think I was having trouble breathing and I didn’t realize it. I just felt stressed! I exclaimed. The nurse arrived one more time with the steroids. Then I drifted into a deep sleep despite my burning scalp.
What proceeded after *the allergic reaction* is another blur of blended memories, either from my exhaustion or the drugs or both. At some point I had to get in a wheel chair and get a chest x-ray. At some point we switched to a different ER room. There were visits from doctors and nurses and I even ordered food, but I don’t really remember the details. I know I didn’t see the sun or care. Around noon on Tuesday, I kind of snapped out of it and started reading my book and paying attention, but I was completely happy to be in my quiet negative pressure ER room, safe in bed, reading my book and NOT in anaphylactic shock. The itching was finally gone. It was only then I completely convinced myself the itching had been real and not my own psychosis. Wow! That drug really worked me over.
Later that day they tried again with only one of the antibiotics. I was nervous, but what could I say. This time a much more experienced hematology nurse sat with me the whole time. Apparently I had become a “one-on-one” patient. To my relief, the doctors were right, I was okay. The offending drug was Vancomycin, the one that was new to my system. Vancomycin. Vampire medicine. Halloween. I get it.
I am writing from the hospital 3rd floor. A few days have passed and my fever never came back. But I am not sorry to be here. My unseen friend on the other side of the very thin door that separates our rooms is very quiet and well-behaved. The view is fine and there internet wireless signal is decent. Hospital life, no big deal. But more importantly I am alive and I am feeling pretty good.
Even though the allergic reaction was independent of my leukemia and could happen to anyone, the experience cemented in my mind how quickly medical events can happen. The on-call doctor was not joking when she said if you feel worse stop at an ER along the way. Neutropenic leukemia patients can go from zero to 70 in minutes when a serious infection gets rolling. As stated by no-nonsense Rico Suave himself, “You have Leukemia. Leukemia is a very risky disease. Everything is a risk.” But I don’t think I internalized these words until now, after having this intense allergic experience. I am glad I came into the hospital with my fever. Who knows – it could have been the start of something bad. And there is no place better to be than the hospital when something bad starts to go down.
Whatever gets you through the night, its all right. Right John Lennon?