To add insult to injury, however, I started to lose my hair. I was told that with "light chemo" there was a 50/50 chance of it happening, but mostly I was told, hair just thins. Because mine was coming out in small strands each time I combed through it, I was hoping it was just thinning.
Sadly, that wasn't to be the case since my hair soon began coming out in large clumps that resembled small nests. By the time I was discharged, I had several long strands of hair left around my head. I looked like a Kewpie doll.
Discharge was still set for the following day, Tuesday, since I'd been doing so well. I later remarked to my doctor that I would have to be snuck out the back door when it's time to go because each time he announced my discharge, something happened!
And sure enough, on Monday afternoon, I fainted after my shower.
As I stepped away from the stall after turning the water off, I felt unusually warm and light-headed. The toilet was a few steps away so I sat myself down and pulled the red cord that would alert the nursing staff.
Then I passed out, my body wedging itself into the corner between the toilet and the wall.
When I came to, five faces were calling my name. Dazed and confused, I was quickly stood up by several helping hands and clothes were put on me. I was told I was out for just a few minutes but a "code blue" was called since I'd already started turning white around my mouth, and it took sternal rubbing--the PA forcefully applying pressure to my sternum with her knuckles--to awaken me.
I was guided to my bed and the room quickly began spinning when I tried to lie down. I sat back up and threw up. An IV drug to curb nausea and vomiting was administered and I felt better almost instantly. Another EKG was done to check my heart.
When the MD visited that afternoon, he confirmed my discharge for the next day. "There's nothing wrong with your heart; this was just a vasovagal response," an episode that happens when the vascular system dilates quickly--in this case, with the heat of the shower. Combined with my already low blood pressure, my body couldn't compensate in time.
But when I learned that my inflammatory blood marker had climbed again, I asked if I could be monitored another day, just in case, especially since I still felt foggy from fainting. My doc agreed.
Other than feeling foggy, I still felt shaky inside and my sloppy writing never recovered. Either it was a result of the CAR-T, or more likely, it was the three days of chemo that contributed to worsening neuropathy in my hands. They felt numb in each finger, as if I'd just come in from the cold outdoors and they were thawing.
Thankfully, I have never had any pain, but I drop things all the time, and items often going flying across the room when my fingers cannot firmly grasp. It's usually comical, but my inability to write legibly still bothers me. Perhaps it will improve in time, as it did three years ago when neuropathy first appeared after a few rounds of chemo. I took a naturopathic remedy for several months and the neuropathy in my hands disappeared. I'm hoping for the same outcome this time.
Feeling better Wednesday morning, 15 days after CAR-T, I was discharged to temporary housing where my son had already set up camp. He works remotely so it was the perfect scenario to have him as my caregiver. The only issue was taking him away from his partner and two small children. The sacrifice he made was heart-wrenching to this Mom who has always been independent and self-sufficient. When it became a requirement that I needed a care-giver after treatment, however, I accepted his help (but not without a wee bit of guilt).
After two weeks in the hospital, and mostly in bed, I felt like Frankenstein as I walked in a stilted, slow-motion gait, usually off-course. I guess my body had to practice being upright for long periods of time again. I still felt fuzzy in my head and didn't trust that I wouldn't faint again, so I hung onto walls and furniture as I made my way around the hotel room.
I returned to the clinic that week to monitor my vital signs and bloodwork, and to receive IV fluids when either was low. I slept 12 hours each night, ate ravenously, took naps throughout the day, and enjoyed Netflix with my son each evening.
Each day he'd coax me out of the room to walk around the facility, and each day was a struggle. I felt weak, worn out, and fearful of fainting. But I needed the exercise so I usually pushed myself.
One evening we were in the communal kitchen just a few floors down from our 6th-floor room. I was sitting on a stool in front of the stove cooking dinner and I felt "off" but couldn't describe what that meant. I felt like I could fall off the stool and wouldn't be able to catch myself. I felt so helpless and sad. One tear slid down my cheek and Alex saw it. "What's wrong, Mom?"
"I don't know, but I need to get back to the room." I told him it felt like my body wasn't compensating at all so he quickly gathered our belongings and escorted me upstairs where I flopped onto the bed.
Later that week I got up to go to the bathroom, and like many times before, I felt a slight rush of light-headedness upon standing. It usually passed after a few seconds when I'd slowly make my way across the room. One time, it didn't let up and by the time I got to the bathroom door, I was blacking out. I held onto the door jam and felt my knees buckle and my vision go black as I began to slide down the wall. Thankfully, an instant later I got a shot of adrenaline and recovered.
Alex was ten feet away from me and I couldn't even alert him. It scared the crap out of me. It also confirmed my fear that my body was not compensating after three weeks since my CAR-T. I feared that I was not recovering.
When I returned to the clinic and told my doc about this he reminded me: "Your body has undergone a traumatic assault and your vascular system is "leaky". It will take some time and lots of rest to recover."
Oh, yeah. I forgot.
Ten days in the off-site housing went by quickly and my schedule remained the same: sleep, eat, clinic, eat, nap, eat, Netflix, eat, sleep. On Friday, March 5th, Alex was already planning on returning home for the weekend to see his family. It had been a long and challenging time without him for his kids and partner. He'd return Sunday eve and stay with me until I was officially discharged after my 30-day PET scan a few days later, on March 10th.
But first, I had a clinic appointment to go to.
I hadn't had any IV fluids for several days and my vital signs were improving, as was my stamina. I no longer walked in a stilted gait, and I actually felt the best I had since being at the hotel.
It was at the end of my appointment when my doctor told me that because I'd been doing so well and I was well-versed on any side effects that could crop up, he felt comfortable sending me home.
"Today?" I asked, shocked. I was still planning on staying in town another six days.
"Sure. As long as you return for both appointments next week!"
My thoughts were still reeling when my son and I walked out of my appointment and toward the shuttle back to housing. Alex was leaving today, but could I as well?
My friend, Jack, was on his way down to visit so when he arrived, I informed him of my news. "I'll take you home right now!" The thought was enticing but I had an entire hotel room to pack up and I was already feeling worn out. Alex had just left and his car was packed with things we hadn't been using, so that helped cut down on the number of items that remained in the room.
But after just an hour of hanging out in the hotel room, I could no longer talk myself into staying. I was ready to leave.
I slowly packed up food, clothes, and the rest of my belongings while Jack did the heavy lifting to his car. Within the hour I was checking out at three in the afternoon. I was worried that I'd be charged for another night but Jack put it into perspective: "Being home is worth losing a night's hotel cost." In the end, I wasn't even charged. The housing facility caters to cancer patients and is apparently used to last-minute changes. Another bit of gratitude.
The drive home couldn't have been more freeing and strange. I hadn't really been anywhere since I relocated to Seattle on February 4th and now it was exactly a month later, March 5th.
Being sent home was the healing salve I needed. I began to feel better almost instantly as I slowly put away my packed items over the weekend. I rested when I needed to, tried not to overdo any activity, and felt happily satisfied just hanging with my cats who seemed to have missed me.
Facebook post, March 6th:
"I'm so happy to be home! Everything has me in tears because I'm so relieved and grateful...for being home, for the opportunity to have had this treatment, for being past the toughest part, and for my beautiful tribe that continues to buoy me. I'm overwhelmed and gobsmacked."
A few days later on March 9th I had an encouraging clinic appointment that showed my blood pressure had finally returned to normal, and I was feeling less foggy in my head after two medications were discontinued.
The following day my 30-day post-CAR-T PET scan was done to reveal if the treatment had worked or not.
Within an hour after I arrived home from the scan the ARNP called: I WAS IN COMPLETE REMISSION! I cried in gratitude and relief. It took just 30 days and the CAR-T to get here.
Suddenly, the challenges during these past few months all seemed worth it.
When I had my final clinic appointment the following week, my doctor told me that there was an on-going thread of excited emails flying back and forth between practitioners when my scan came up clear.
Dang, I wish I had been cc'd on those!
But it was obvious that everyone was celebrating with me. It had been a long, difficult, scary road, but here I am just six weeks later, cancer-free!
My heart is full and my gratitude is deep.