Beginning February 2nd, my visits to the Seattle Cancer Center were amped up in anticipation for chemotherapy to start on Thursday, February 4th, the same day I would be relocating my life an hour south. I met with the Attending MD and RN on Tuesday for a "data dump" where the CAR-T treatment and its side effects, along with after-care, were reiterated and agreed upon. On Wednesday, my Hickman chest line was placed, which would be used for chemo and alleviate the need for multiple skin pokes for blood samples.
My move hit me hard, as I'd expected. I'd been packing for weeks, but to actually say g'bye to my kids, my home and my cats was difficult. I held back grief that morning as I shut the door and made my way to my friend's car. I had to bat away thoughts that this could end up being the last time I saw my home should my treatment and recovery not go as hoped, but I also knew that I was in good hands and I was a prime candidate for my impending therapy.
I was mostly quiet on the drive, and remained somber walking into my first chemo appointment. When I received an "I love you" video from my grandbabies as I sat in the waiting room, I openly wept. I was already missing everyone and becoming scared about the days ahead. When I met with another new practitioner, she could sense my sadness and offered encouraging words of support.
It would continue to be a sad day for me, but I perked up when I checked into the housing near the cancer center that afternoon. It was a large and beautiful building, perfectly equipped for cancer patients and their families. I instantly felt at home and spent that evening settling in. By the time I arrived for my second appointment the next morning, I was already feeling better.
But "light chemotherapy" didn't mean what I thought it would. I expected to sail through it without side effects since I'd never had nausea during the six treatments of RCHOP two years so. But I'd been plagued by nausea beginning early Friday morning, not yet 24 hours after my first infusion. I was given Zofran IV, which immediately took care of my upset stomach and I was able to eat a famous Seattle Dick's cheeseburger and fries without any problem. I laid low for the rest of the day and pressed "repeat" for the next two days as nausea continued to linger on the periphery of that weekend, after two more chemo infusions.
My two days of "rest" from chemo and the clinic were spent truly resting, when I'd hoped I would be able to read, catch up on my blogs, and explore the big, beautiful building I was staying in or walk the city streets. Instead, I was confined to my bed, eating and drinking as much as I could tolerate, and obsessing about the potentially-challenging days ahead.
Tuesday morning showed up too quickly after five days of blur. I felt disappointed to be leaving the hotel so soon.
I was admitted into room 8210 in the University of Washington Hospital at 0800 that morning, February 9th. It was a sunny but cold day, following a weekend of dreary skies.
Admissions always take a few hours so I came prepared with a hot breakfast sandwich I had picked up before my elevator ride to the 8th floor. My appetite had returned, and it did so with a vengeance.
As expected, I was nervous but I held tight to my emotions while I consumed my breakfast and said g'bye to my friend, Jack. I suddenly felt so alone as I embarked on a life-changing and potentially-challenging procedure by myself. I was nearly in tears when my nurse came bounding in my room and introduced herself.
"Hi, I'm Audrey!" I immediately felt my shoulders go slack as I sent a silent "thank you" skyward. Audrey is my daughter's name. I knew all would be okay.
When I later shared this story with my daughter, she had her own angel moment to report. She had written in her journal the night before that I would be looked after today and kept in good spirits. Upon hearing the name of my nurse she said, "If that's not a sign, I don't know what is!"
Throughout this journey, it has not been lost on me that I have had a divine presence choreographing people in and out of my life at precisely the right moments. I have been looked after, protected, and cared for on every level.
In fact, it hit me square between the eyes recently that maybe the CAR-T has been part of the Master plan for me to possibly reach a complete remission and I've been apathetic about it from the start. Because I haven't had any symptoms of a cancer relapse, other than a node seen on a routine CT scan, I have been annoyed by the entire process of having to drive a long distance for appointments, get numerous scans and blood draws, receive chemo (not again??), and remain in the hospital and in town for extended stays.
It was only recently when I had a perspective-changing epiphany: how ungrateful am I that I have been mostly "annoyed" while others are dying without the chance to receive CAR-T, either because their insurance has denied it or their cancer load is too large? I felt humbled to realize that I have been given this beautiful gift of a possible remission with a few physical and financial sacrifices on my part, and to downplay it only smacks of my own lack of gratitude.
Whoa.
So when my nurse wrote on my white board that today's plan was "Cells!" I understood that everyone around me was excited for me to be one of the lucky recipients of such a potentially life-saving and scientifically complex cure.
I was humbled back into gratitude, and felt ready to begin.
I was being kept informed about my cell infusion time which was scheduled between noon and 1 pm. Around 1250, two gentleman walked into my room with a modern-looking cooler. "Your cells have arrived." But before they could be infused, they'd have to be thawed from -180 degrees to body temperature.
When Gerard gently lifted the cassette (that looked exactly like a DVD case) from the cooler, it resembled a block of dry ice with smoke encircling it. Within minutes, the small bag of cells was dipped into a warm water bath, then hung up and attached to my chest line. I looked up and noticed that the bag contained 68cc (just over 2 ounces) of a clear fluid that had a tint of lemonade-yellow to it.
I was sitting up in bed when the infusion began at 112, expecting to feel nothing, like any other IV infusion. But I immediately felt my body flush and my head swoon, so I laid back onto my pillow. I said nothing, but seconds later when it felt like my body was filling up with cement: heavy, suffocating, slow-moving sludge--I spoke up.
"Um, guys, something's wrong."
I knew if I didn't say something right away, whatever this was would soon compromise my breathing. I could feel it "filling up" toward my chest.
"It feels like my body is filling up with cement. My legs are heavy and I'm gonna pass out."
Just then, the telemetry nurse ran into the room and yelled, "Her heart rate is at 39. What's going on?"
Oh, God, please step in, I silently prayed. I thought my heart rate would continue to plummet and I'd soon dissolve into the sheets beneath me, never to be heard from again.
Audrey turned the dial that cut off the infusion and paged the PA (Physician's Assistant). When he entered the room he instructed Audrey to restart the infusion when he saw I had quickly recovered from the dip in my heart rate and I was still talking.
"It's probably the DMSO" someone said in the distance, which is a solvent used as a carrier for the preservation of the T cells. It often plays havoc with heart rate, but the staff had never heard a description like mine before.
The infusion was restarted, this time more slowly, and although it never felt like cement again, I definitely felt uncomfortable for the duration. I felt hot and asked for a cool washrag, then threw the rag onto the floor when I felt cold. My feet bounced in time with my labored breathing; my legs moved from side to side. I just wanted it to end.
A T cell infusion typically takes 20 minutes, but at 30 minutes, my bag was still half full. At least I'm still coherent and talking, I realized through deep breaths. I can get through this.
I didn't hear until the following day that my infusion scared most of the staff on the floor, but at the time, they were all playing it cool. Their voices didn't even crack as they offered support and a cheering section.
"Five more minutes and this will all be over," Audrey excitedly told me. I looked at the clock on the wall and realized an hour and 20 minutes had lapsed.
Once the T cells were finally in and the saline was started as a chaser, there was an instant change in my demeanor, like someone had flipped a switch and I felt more like myself again.
I looked at the faces in the room and said, What kind of hell was that? Fortunately, we all had a good laugh together.
Then it was over.
But nausea continued to linger in the pit of my belly and within the hour, I was throwing up my lunch. Audrey had been asking since the infusion if I felt "way better" yet and the best I could tell her was, "I feel a little better." But after ridding my stomach of all of its contents, I looked her way and said, "I feel waaaay better now!"
And I did.
After the trauma of the day, I was also tired and ready for a nap. I also sensed, deep down in my gut, that the this would be my worst day during my required 7-day stay. Despite the fact that CAR-T side effects can begin at any moment, and are expected, my intuition was telling me that I would not fall prey to anything monumental.
I had already experienced the worst of it.
My move hit me hard, as I'd expected. I'd been packing for weeks, but to actually say g'bye to my kids, my home and my cats was difficult. I held back grief that morning as I shut the door and made my way to my friend's car. I had to bat away thoughts that this could end up being the last time I saw my home should my treatment and recovery not go as hoped, but I also knew that I was in good hands and I was a prime candidate for my impending therapy.
I was mostly quiet on the drive, and remained somber walking into my first chemo appointment. When I received an "I love you" video from my grandbabies as I sat in the waiting room, I openly wept. I was already missing everyone and becoming scared about the days ahead. When I met with another new practitioner, she could sense my sadness and offered encouraging words of support.
It would continue to be a sad day for me, but I perked up when I checked into the housing near the cancer center that afternoon. It was a large and beautiful building, perfectly equipped for cancer patients and their families. I instantly felt at home and spent that evening settling in. By the time I arrived for my second appointment the next morning, I was already feeling better.
But "light chemotherapy" didn't mean what I thought it would. I expected to sail through it without side effects since I'd never had nausea during the six treatments of RCHOP two years so. But I'd been plagued by nausea beginning early Friday morning, not yet 24 hours after my first infusion. I was given Zofran IV, which immediately took care of my upset stomach and I was able to eat a famous Seattle Dick's cheeseburger and fries without any problem. I laid low for the rest of the day and pressed "repeat" for the next two days as nausea continued to linger on the periphery of that weekend, after two more chemo infusions.
My two days of "rest" from chemo and the clinic were spent truly resting, when I'd hoped I would be able to read, catch up on my blogs, and explore the big, beautiful building I was staying in or walk the city streets. Instead, I was confined to my bed, eating and drinking as much as I could tolerate, and obsessing about the potentially-challenging days ahead.
Tuesday morning showed up too quickly after five days of blur. I felt disappointed to be leaving the hotel so soon.
I was admitted into room 8210 in the University of Washington Hospital at 0800 that morning, February 9th. It was a sunny but cold day, following a weekend of dreary skies.
Admissions always take a few hours so I came prepared with a hot breakfast sandwich I had picked up before my elevator ride to the 8th floor. My appetite had returned, and it did so with a vengeance.
As expected, I was nervous but I held tight to my emotions while I consumed my breakfast and said g'bye to my friend, Jack. I suddenly felt so alone as I embarked on a life-changing and potentially-challenging procedure by myself. I was nearly in tears when my nurse came bounding in my room and introduced herself.
"Hi, I'm Audrey!" I immediately felt my shoulders go slack as I sent a silent "thank you" skyward. Audrey is my daughter's name. I knew all would be okay.
When I later shared this story with my daughter, she had her own angel moment to report. She had written in her journal the night before that I would be looked after today and kept in good spirits. Upon hearing the name of my nurse she said, "If that's not a sign, I don't know what is!"
Throughout this journey, it has not been lost on me that I have had a divine presence choreographing people in and out of my life at precisely the right moments. I have been looked after, protected, and cared for on every level.
In fact, it hit me square between the eyes recently that maybe the CAR-T has been part of the Master plan for me to possibly reach a complete remission and I've been apathetic about it from the start. Because I haven't had any symptoms of a cancer relapse, other than a node seen on a routine CT scan, I have been annoyed by the entire process of having to drive a long distance for appointments, get numerous scans and blood draws, receive chemo (not again??), and remain in the hospital and in town for extended stays.
It was only recently when I had a perspective-changing epiphany: how ungrateful am I that I have been mostly "annoyed" while others are dying without the chance to receive CAR-T, either because their insurance has denied it or their cancer load is too large? I felt humbled to realize that I have been given this beautiful gift of a possible remission with a few physical and financial sacrifices on my part, and to downplay it only smacks of my own lack of gratitude.
Whoa.
So when my nurse wrote on my white board that today's plan was "Cells!" I understood that everyone around me was excited for me to be one of the lucky recipients of such a potentially life-saving and scientifically complex cure.
I was humbled back into gratitude, and felt ready to begin.
I was being kept informed about my cell infusion time which was scheduled between noon and 1 pm. Around 1250, two gentleman walked into my room with a modern-looking cooler. "Your cells have arrived." But before they could be infused, they'd have to be thawed from -180 degrees to body temperature.
When Gerard gently lifted the cassette (that looked exactly like a DVD case) from the cooler, it resembled a block of dry ice with smoke encircling it. Within minutes, the small bag of cells was dipped into a warm water bath, then hung up and attached to my chest line. I looked up and noticed that the bag contained 68cc (just over 2 ounces) of a clear fluid that had a tint of lemonade-yellow to it.
I was sitting up in bed when the infusion began at 112, expecting to feel nothing, like any other IV infusion. But I immediately felt my body flush and my head swoon, so I laid back onto my pillow. I said nothing, but seconds later when it felt like my body was filling up with cement: heavy, suffocating, slow-moving sludge--I spoke up.
"Um, guys, something's wrong."
I knew if I didn't say something right away, whatever this was would soon compromise my breathing. I could feel it "filling up" toward my chest.
"It feels like my body is filling up with cement. My legs are heavy and I'm gonna pass out."
Just then, the telemetry nurse ran into the room and yelled, "Her heart rate is at 39. What's going on?"
Oh, God, please step in, I silently prayed. I thought my heart rate would continue to plummet and I'd soon dissolve into the sheets beneath me, never to be heard from again.
Audrey turned the dial that cut off the infusion and paged the PA (Physician's Assistant). When he entered the room he instructed Audrey to restart the infusion when he saw I had quickly recovered from the dip in my heart rate and I was still talking.
"It's probably the DMSO" someone said in the distance, which is a solvent used as a carrier for the preservation of the T cells. It often plays havoc with heart rate, but the staff had never heard a description like mine before.
The infusion was restarted, this time more slowly, and although it never felt like cement again, I definitely felt uncomfortable for the duration. I felt hot and asked for a cool washrag, then threw the rag onto the floor when I felt cold. My feet bounced in time with my labored breathing; my legs moved from side to side. I just wanted it to end.
A T cell infusion typically takes 20 minutes, but at 30 minutes, my bag was still half full. At least I'm still coherent and talking, I realized through deep breaths. I can get through this.
I didn't hear until the following day that my infusion scared most of the staff on the floor, but at the time, they were all playing it cool. Their voices didn't even crack as they offered support and a cheering section.
"Five more minutes and this will all be over," Audrey excitedly told me. I looked at the clock on the wall and realized an hour and 20 minutes had lapsed.
Once the T cells were finally in and the saline was started as a chaser, there was an instant change in my demeanor, like someone had flipped a switch and I felt more like myself again.
I looked at the faces in the room and said, What kind of hell was that? Fortunately, we all had a good laugh together.
Then it was over.
But nausea continued to linger in the pit of my belly and within the hour, I was throwing up my lunch. Audrey had been asking since the infusion if I felt "way better" yet and the best I could tell her was, "I feel a little better." But after ridding my stomach of all of its contents, I looked her way and said, "I feel waaaay better now!"
And I did.
After the trauma of the day, I was also tired and ready for a nap. I also sensed, deep down in my gut, that the this would be my worst day during my required 7-day stay. Despite the fact that CAR-T side effects can begin at any moment, and are expected, my intuition was telling me that I would not fall prey to anything monumental.
I had already experienced the worst of it.
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