January 9. After a second opinion confirmed the only viable treatment option for his rare cancer, Chemo Day 1 arrived – a day we actually celebrated the infusion of copious amounts of poison into Hubby. Armed with the information on side effects. Prepared to deal with them head on. Look out cancer, cells, Hubby was ready to FIGHT!
We had received the tour of the chemo infusion center a day earlier, led by Linda, one of the RN’s specially trained to administer toxic cocktails with kindness and compassion (I think I have coined their slogan!). Our lifelong friend, breast cancer survivor and chemo veteran – and one of my
Penguins (P3) – had offered to accompany Hubby to his first session, and he and I both readily accepted. Her familiarity with the process was comforting.
Armed with my lovingly prepared snack bag, his favorite pillow and the already packed bag used for those 3:30 a.m. dates with dialysis, Hubby and P3 headed out the door. I would arrive midway through the four and a half hour session, as we had planned in advance. I used the time to undergo my own version of chemical alteration – a date with my hair stylist for long overdue cut and color!
Hubby’s first session went smoothly. I arrived to find him attached to an IV drip, peacefully binge-watching a Netflix offering, while P3 played Words with Friends alongside him in their “chemo cubicle.” After my debrief on all I had missed – including the fabulous news his PET scan showed no additional cancer other than what we already knew – I settled in for the remainder of the session. Hubby was to go home with a second chemo drug administered over the next 48 hours via an IV pump. As they prepared the VHS tape size (remember those?) pump, and locked and loaded the deadly drugs inside, we received instructions for living with the new appendage over the next two days. Keep it dry. Check. Sleep with the pump under a pillow. Check. Expect the pump to sound an alarm when the drugs are depleted, and return to the office as soon as possible afterward to be extricated from the machine. Got it!
Chemo pump in hand - and in bed, and at the desk and dinner table - Hubby was prepared. We knew the side effects to expect. The first ones to surface were jaw pain and hyper-sensitivity to touching, or being touched, by anything cold. Not horrible, but definitely not comfortable. He worked all day, and gave no indication to the outside world that chemical warfare was underway inside his body.
Twenty six hours after chemo had begun, it hit. 4:00 p.m. to be exact. As Hubby was on the phone getting the great news from his nephrologist that his kidneys were starting to do their work, thus putting a hold on dialysis, he excused himself from the call and urgently made his way to the bathroom. I checked off the nausea and vomiting box of the side-effect playbook. Definitely unpleasant, but anticipated. Hubby was moving into the worst days following chemo, as the doctor had prepared us. He was in bed by six, and I braced myself for a long, worrisome night. My heart was heavy, witnessing my strong, formerly healthy Hubby in such a vulnerable and foreign (to us) condition. I never expected the worst day of this entire experience was about to unfold…
The nausea was relentless. All night and into the pre-dawn hours, Hubby moved from bed, to bathroom to downstairs. He didn’t speak. Just rocked back and forth, quietly moaning and finding temporary comfort in the gentle massage I offered. Daybreak announced itself with a beautiful pink sunrise, and I suggested he go back upstairs and into bed. As we passed the hallway, he pointed toward his office. “The doctor is his…um…..his…” he uttered, confused and suddenly incoherent. He tried again to force out a sentence, clearly frustrated with himself, and with me for not understanding him. There was no box to check in the playbook for this side effect! I was terrified. I know my man, and something was terribly wrong.
What do I do? WHAT DO I DO??? Call the doctor, pray the early hour call will be quickly relayed to the on-call physician, and calmly describe his condition. Provide details. Take notes. Within two minutes, his doctor was on the line, agreed Hubby was in crisis, and calling 9-1-1 was my only option. I steadied my hands and took deep breaths, as I made my first ever 911 call. I talked slowly, voice cracking from the fear that shuddered within me, as I attempted to convey my emergency. I hung up and realized I was still in my pajamas! I could hear the sirens as I raced upstairs to trade my cozy flannel for clothes approved for public viewing - leggings and an oversize hoodie - and most importantly, a bra!! As the sirens got closer, I ran a brush through my hair and hurried downstairs to await the arrival of the cavalry. Somewhere in all of this, I called P3, my personal 911 emergency contact!
I first heard the unmistakable rumbling of the fire engine as it turned the corner, followed moments later by the ambulance. Keep your wits. Tell them everything. Chemo. Confusion. Nausea. Dialysis. Pump. I provided a timeline and my laundry list of symptoms to a polite young firefighter/paramedic who entered the information into his tablet. Two other paramedics with an arsenal of equipment took Hubby’s vitals and assessed his mental state. Within minutes he was on a stretcher and in the back of the ambulance for his second visit to the emergency room in four weeks. P3’s sister had arrived, and became my designated driver. Hubby was in good hands, and P3 had called her sister, who lived nearby, to assure I was too! Upon arrival at the hospital, the nightmare began…
I was escorted to Hubby in exam room 13 - an omen to the horrors that followed – to find him being attended to by a less than compassionate RN whose nametag was not visible. I could choose a more fitting 5-letter moniker, but I’ll refer to her as NURSE. Hubby was flailing in the bed, uncomfortable, agitated, and unable to communicate a cohesive sentence. I became his spokesperson and advocate, giving NURSE my litany of vital information. Dialysis. First Chemo. First Pump. Recent diagnosis. Cancer newbies. She never made eye contact with me, and faced her computer monitor, presumably entering notes assuring Hubby’s standard of care would be met. The ER doctor arrived, and again I shared my laundry list of what had transpired in the last 12 hours. IV’s were ordered for severe dehydration, and blood test results would eventually reveal
hepatic encephalopathy – a buildup of ammonia in his blood that affected his brain. He would have to be readmitted to the hospital for more dialysis to remove the toxins that clouded his brain, and more tests to assess the cause.
In the hours that followed, Hubby was treated by NURSE in the ER as a “nuisance patient” - unable to speak for himself; in pain, and fighting to sit up as P3, her sister and I physically restrained him; tugging at the IV; pleading be allowed to relieve himself; unattended for an hour and a half; not receiving the fluids and medication due to an IV that had malfunctioned. When NURSE finally returned to find us keeping weak and incoherent Hubby upright at the edge of the bed again, she scolded us. “You should have called me!” she barked. We had been – for the past 90 minutes! It went downhill from there…
I finally lost my s#!t when Hubby’s chemo pump alarm began beeping, signaling the completion of the 48 hour infusion. Upset, confused and scared out of my mind, I looked helplessly at the buttons on the pump. I had not expected to be “here” when this moment came. My playbook had us calling the chemo center and driving there for their staff to handle. I'm sure I looked like a deer in headlights. When NURSE said, “What do you usually do when the pump alarm rings?” I reached the tipping point. “HE IS NEW TO CHEMO. I HAVE BEEN TELLING YOU THIS ALL DAY. I HAVE NO IDEA WHAT TO DO.” Crying. Yelling, Being very un-Paula-like. I stormed out of the room and headed to the main hospital entrance to find someone – anyone – and demand help.
I’m sure I looked like an escapee from the psyche unit! Kind volunteers tried to calm me down, but I was in full on, Terms of Endearment mode.
Getting no help, I stormed back to Hubby's ER room 13, ready to throttle NURSE. Thankfully, P3 had stayed with him. Hubby was peaceful, thanks to the resumption of the IV meds which now included the hours-before requested sedative and pain meds. The chemo pump had been flushed and removed by NURSE while I was away (I was to learn later that day that ER nurses are not authorized to deal with toxic chemo drugs and pumps, and her casual handling of the pump and residual chemo drugs put us all at risk).
Six hours after it had begun, the ER nightmare would come to an end. Hubby was moved to the oncology unit to begin the dialysis that would have him clear-headed by the next morning. I left late that evening, while Hubby was still struggling to sit up and yanking at his dialysis and IV tubing - and sadly unaware of who I was. Thankfully he was now under the care of a kind and compassionate oncology unit nursing team. I held my breath as I arrived back at the hospital the next morning. Would Hubby be back from the brink? He answered that question immediately with his first words, “Why the hell am I here again?” Oh honey, have I got a story to tell you. He has no memory of his “lost day”, but those 24 hours I will never forget!
While Hubby was having his "out of mind" experience, I was learning something about myself. It brought to life a quote that friends have shared with me since the onset of this cancer journey.
“You are Braver than you believe, Stronger than you seem, Smarter than you think,
and Loved more than you know.”
This experience tested me on so many levels and I while I hope never to relive it, I know I can. Braver. Stronger. Smarter. Loved. And I remain #kahunastrong
