“There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” ~ Rosalyn Carter
“You have not lived today until you have done something for someone who can never repay you.” ~John Bunyan
*****Author’s note: I wrote this post over a year ago, a few days after being released from the hospital. It felt raw, and perhaps inappropriate for public view. I needed time to pass in order to be able to read it objectively before deciding to share. Today, as I was connecting my blog to my new website, I stumbled on the draft and re-read it. It IS raw, and it certainly WAS my truth at the time it was written. Fair warning – there are parts of my experience here which may feel like “TMI”. If you are squeamish about medical experiences and bodily fluids, you might want to give this one a pass. But if you’re into seeing emergency room care from the inside perspective of a patient and the emotional transformation which comes with being so sick your defenses disappear, read on. And know that at least this part of the story has a happy ending – I was absolutely fine in a few days, finished my chemo, went on to complete radiation, am back on my bike, working full time, eating all the things, and living my life with enthusiasm. ****
7pm on a Saturday, the weekend before New Year’s 2018. I had had my third chemo treatment about 4 days previous, hydration the day before, and was finally starting to feel like I might survive this round. I woke up still feeling a little sick, but two hours later I was hungry enough to go out for breakfast and have my ritual Saturday after Tuesday chemo Dutch baby. We followed it up with a two hour walk on the beach. The salty air smelled incredible, and I enjoyed the gentle movement so much I didn’t want to quit. I actually had enough energy to make dinner! Then, as I finished the last spoonfuls of dessert, I felt an unpleasant rumbling in my guts. The kind of rumbling which leaves you thinking you may be in for a long night.
Pretty much anything can go wrong with your guts while going through chemo, and so far my experience had been limited to queasiness, belching, heartburn, and bloating, all mostly manageable with small meals, lots of ginger chews, and some Tums. While I had prescriptions for everything from nausea to diarrhea to constipation, I hadn’t needed to use much and I really didn’t want to start now. I’d been running a low grade fever all week which wasn’t unusual. I’d run fevers from 99.2-100.3 with every cycle so far, and this cycle had been pretty typical. I left the table for the toilet, hoping for the best.
I sat on my throne, letting waves of cramping pass through my intestines, with the expulsions going from solid to liquid too quickly. I started to shiver. I wrapped myself in a bath towel, and just got colder. A voice in the back of my head said “this isn’t good”. I grabbed the phone which was beside me – who DOESN’T take their phone to the commode these days?? – and texted my husband for a blanket. He brought a space heater, and I dropped to the floor, literally trying to wrap myself around the thing, shaking and shivering out of control. He shoved a thermometer in my mouth as he went for the folder with the phone number for the oncologist on-call. 101.7F. WAY too high. I wanted to get in the shower, to have the hottest water I could stand pouring over me, anything to feel warm enough. Instead, my husband pushed me into a set of sweats and dragged me to the car, plastic bag in hand to protect his seats. At night, on a holiday weekend, it took us about 5 minutes to drive the 3.8 miles to the nearest emergency room. I checked in while he parked the car, then curled up into a ball of shivering, cramping misery over two seats until I was called. It felt like an eternity, but it really wasn’t more than 5 minutes after my husband joined me before I was the center of a flurry of activity. People checking my vitals, putting in not one but TWO IVs, taking blood, finding a gurney for me to lie down on, getting a chest x-ray. It’s all a blur of movement and misery. My guts were roiling, but thankfully no longer expelling their contents. I couldn’t stop shaking and shivering. I’ve been hypothermic, but never felt this cold before. They started pushing fluids and antibiotics. 5 different antibiotics, to be exact.
When you show up in the emergency room with a fever of 101.7 while in the middle of chemotherapy, they take it VERY seriously. It’s ASSUMED that you have sepsis until they prove otherwise, and they look for every possible source of infection while throwing everything they can at it until they know what it is. Sepsis itself isn’t an infection – it’s the mother of all inflammatory responses, launched by a compromised immune system run amok in response to an infection. And it has a very high mortality rate. Even mild sepsis can kill up to 30% of its victims. Inflamed, overworked organs can shut down. Fluid levels can drop leading to dangerously low blood pressure and reduced oxygen to vital organs, stressing them even further. The cascade can happen relatively quickly. So they treat aggressively, throwing every possible antibiotic at it to treat anything which might be underlying while pushing as much fluid as you can absorb to keep the blood pressure up.
For me, the night is a blur. It felt like I was shaking and freezing for hours, begging for blankets which they refused because they were trying to lower my fever and blankets would retain my body heat and push it higher. My guts continued with waves of cramping and pain, fruitless peristalsis with nothing left to push out. Nurses came and went, watching vitals, checking what was going into the IV, drawing still more blood. As the fluid took effect, we discovered just how well my kidneys were functioning as my bladder filled to capacity again and again. They brought a bed-side commode, but it took a nurse to untangle the wires and tubes every time I needed to use it, and I’m pretty sure I exposed myself to half the ER that night as the urge to pee came every hour. Finally, someone gave me morphine, and the cramping faded into the background, the shivering stopped, and I drifted off into a drugged sleep.
I don’t know how much time had passed before the first doctor came in – I remember talking to him and feeling pretty lucid at the time, and I remember referring to him as “McDreamy” later in the night. Later I saw another doctor who checked my vitals and reported back on the tests which had come back so far. They wanted to admit me, but San Diego was in the middle of a flu epidemic and the hospital was filled to capacity. Eventually, the compromise was to move me to the back of the ER, a quieter place away from the coughing/hacking/vomiting masses inflicted with the misery of H3N2. As the drugs took effect, I started to feel well enough to banter with my nurse who entertained us with stories about her young sons, replete with f-bombs and photos. My husband tried to sleep, but it was hard to do while sitting upright in an ER chair. He never left my side.
Sometime in the morning they found a room for me, and I was moved to a hospital floor. They brought me a sad, flavorless breakfast and a new nurse, Arvin. Arvin was attentive, funny, and efficient, bringing me extra pillows and the juice I requested, plus an extra cup of tea. He also brought more antibiotics, more fluids, and a new doctor. Turns out the medical staff was as affected by the flu as the rest of the population, and this unfortunate doctor got called in at the last minute after the scheduled attending succumbed along with both of the on-call docs. He was stuck at the hospital for the entire weekend, sharing stories of how HE had spent New Year’s Eve in the hospital with flu years before, and was now stuck in the hospital again in a different role.
We welcomed 2018 from a 4th floor room with a view, me in an especially poorly fitting backless evening gown, with take-out Thai Food I was too nauseous to enjoy. Shaun left my side only long enough to go home and feed Percy-kat, pick up his laptop and some toothbrushes, and grab that Thai food. He spent the second night on a pull-out single bed in my hospital room, wakened every hour as I pulled off my monitors to go expel all the fluid still cycling through my kidneys and the night nurse came in to make sure the beeping was because I was in the loo rather than because my heart had stopped.
NYE Celebration, 12/31/2017
When I was finally released around noon on Monday, virtually EVERY test they had run had come back negative. Chest x-ray was clear, nothing had grown in the blood, stool, and urine they’d sampled, and my guts had mostly stopped fruitlessly trying to expel what wasn’t there. My lactate was back to normal (it had peaked at 2.2 which suggests the earliest stages of sepsis, but nowhere near the life-threatening point), all of my organ function was perfect, and I was mildly anemic which was expected during chemo. My blood pressure still (in the very medically descriptive words of my doctor) SUCKED, but it was stable and I wasn’t passing out every time I got up to use the commode, so he thought I was safe to go home. Prescriptions for Cipro and Flagyl for a few more days, one final wheel chair ride, and I was free.
Aside from this pesky cancer diagnosis, I’ve been crazy healthy all of my life. I’m religious about self-care, and I rarely need the doctor. I don’t typically take medications because I don’t typically need them. Until this experience the last night I’d spent in a hospital was immediately after being born. The last time I’d been to an emergency room was in the early 1990’s with a broken finger, a mishap which had happened on a Sunday evening in an era before the concept of Urgent Care existed; and I was x-rayed/splinted/released in under 2 hours. As such, I had no idea what to expect. When you visit a friend or family member who has the misfortune to be interned in such a place, you spend an hour or two and maybe you see a nurse. As a patient, you see nurses and doctors, you’re hooked up to monitors, your movement is restricted, you try but can’t quite figure out how to position the bed so you can lie comfortably with your IV and monitors. You experience the wonderful nurturing care of some nurses and the indifference of others.
I’ve learned a few things from this misadventure. First, though I’ve put a lot of energy into complaining about our “healthcare system” I must say it works phenomenally as a “sick care” system. When you’re really sick, you ARE taken care of. No questions asked. All in all, I was blown away by the quality of care I received from the time I went into the ER to the time I was released. Nobody asked me for money, beyond the check-in nobody asked about my insurance. They simply did what needed to be done to assess my situation and provide care. They paid attention to my comfort, they joked enough and made everything feel routine enough that I wasn’t afraid, and they efficiently made sure that my vitals were stable while looking for the root of the problem. Some of the nurses had been called in despite not being scheduled to work. Everyone was spending their New Year’s holiday at work. And they had a full house of very sick people who needed their care. It’s reassuring to know that there is a place you can go when the medical shit hits the fan where you WILL be taken care of no matter who you are, no matter what color your skin is, no matter what religion you are. And you WILL be treated with caring and respect while you’re there.
Next, I’ve learned a whole lot about what it means to be a caretaker. To my young and impressionable child self, my mom seemed like a reluctant care taker. Whether or not it was her intention, I always felt like I was in the way and an inconvenience when I was sick. Not only did I come to see being sick or needing care as a weakness which led me to be a burden, I also came to see caretaking as an obligation. Since I don’t want to be a burden, I’ve generally refused offers of caretaking for most of my adult life. When my husband had surgery a few years ago, I brought him ice packs and reading material, made him food, and rubbed his feet, but taking care of him felt like something which just had to be done, another chore added onto an already busy day. Confession: I did it, but not with grace. The days I was in the ER and hospital, Shaun role modeled a whole different way of caretaking. He held my hand, talked to nurses and doctors, slept by my side, brought me food, brushed my hair, rubbed my back, and kept asking what else I needed. And for the first time in my life, I was simply too sick to resist or refuse his help. He literally blossomed as I allowed him to care for me, and I have never felt so nurtured and loved. For the first time, I saw caretaking as a gift, an act of selfless service towards someone you love. And I saw how ALLOWING him to take care of me was a gift to HIM. The intimacy resulting from my raw vulnerability and his stepping in to assist with grace and love has been literally transformative.
The third thing I’ve learned, or perhaps reconnected with existing knowledge of, is the importance of family. Like so many of us, my relationships with my family members have had their ups and downs. The “typical” challenges of shifting roles as children grow up and become independent adults while the rest of the family adapts as best they can. My father has dealt with a lifetime of medical challenges including heart issues and his own adventure with cancer. I’ve always wanted a closer relationship with my Dad and now, with the shared experience of cancer diagnosis and treatment, we are connecting in a whole new way. As adults, my sister and I have had a challenged relationship at best, and after I came home from the hospital I was drawn to reaching out to her. We’ve been slowly working on bridging the 30 year communication gap we’ve had, which feels right. Communication with Mom has been less strained and more natural. It’s amazing how the things which seem important change when you’re faced with a potentially life threatening illness. Long held grudges start to feel stupid, the little idiosyncrasies which drive you nuts become endearing or at least just mildly annoying and no longer deal-breakers. Honest, respectful communication becomes easier as the layers of armor and old patterns of being in relationship drop away and vulnerability is once again allowed in.
Brene Brown says “Staying vulnerable is a risk we have to take if we want to experience connection.” Nothing makes you feel more vulnerable than lying in a hospital bed connected to an EKG and IVs, too weak and sick to do much of anything but stare at a TV screen. And experiencing that level of vulnerability allows doors to open in the psyche which most of us would never willingly open. As the weeks go by since this experience, I’m coming to see this opportunity to open these doors as a gift, one which is slowly transforming my relationships with my parents and sister, deepening my relationship with my husband, and allowing connection at a new level with my patients. Some of life’s lessons are only learned through extreme hardship. You are smashed to pieces and then rebuilt from the inside out, and new connections are made along the way. This has been one of those experiences, and I suspect the ripples of transformation will be echoing through my life for many more months before this part of the journey is complete. For now, I continue to walk my path day by day, knowing that there is one more chemo treatment to get through, then a month of radiation, then yet another surgery. I hold gratitude and love in my heart for the friends, family, nurses, doctors, patients, and others who have been so incredibly supportive and who share my journey if only for a little while. I couldn’t get through all of this without each and every one of you!