I happily returned to work on June 2nd, almost one year to the day after leaving in 2020. My stamina and energy were back to normal after my CAR-T in February, and I was ready to be a nurse again. 

The next three months were busy, but I was enjoying my dive back into a job that required my full attention, all the time. I was able to work my regular 8-hour days without fatigue, and I often stayed late to help out. The COVID variant was amping up overseas, but I paid little attention to it since I continued to wear a mask everywhere I went, but as June turned into July and then August, COVID spikes were becoming the hot news topic once again. 

So I asked my oncologist if he'd order a blood test to determine if I'd made any antibodies to the vaccine I'd received in May in order for me to safely return to work. 

A few days later it was revealed that I hadn't. I was completely unprotected as I continued to work as a nurse in an Assisted Living facility, the hottest-hit population. 

But I still wasn't worried since the virus was "out there" somewhere, not in our building that had never seen a positive COVID test since the pandemic began. 

That all changed when I received a call a week after my negative antibody test, that I'd been exposed to someone who had tested COVID-positive. I didn't think much about it; after all, my interaction with him was brief and we were both wearing masks.

But I woke up the next morning in a panic. The reality that I'd been exposed to COVID finally hit me twelve hours later. I was an immunocompromised woman who was only six months out from the groundbreaking treatment that put me back into remission this past February. It was designed to wipe out my cancer-carrying B cells, but it also may have wiped out a fair amount of healthy B cells--the very cells that carry antibodies.

The treatment also rendered me defenseless against the typical childhood diseases like measles, mumps and rubella, along with Hepatits A/B and Influenza B. I've been raw and exposed all this time, but because I'd also been feeling so well, I never felt the enormity of it. 

Until now. 

I texted my boss that weekend to inform her that I was not comfortable returning to work until I spoke with my oncologists, and once I did early the following week, it was clear that my concerns were valid. Until the pandemic slowed down, or I made antibodies to the vaccine, or my immune system caught up, another leave from work was necessary. 

I wasn't happy about this since I'd been so happy returning nearly three months earlier, but I was also not comfortable surviving two bouts of cancer in three years, only to be taken by COVID.

It was time to be a fierce advocate for my health again, especially because my situation is unprecedented. Having to navigate immunosuppression is one thing, but having to do it in conjunction with COVID is too scary. And again, it's hard to remember that because I feel so well, especially since I have only a few side effects from my treatments: neuropathy in my hands and feet; and throwing up every 2-3 weeks. The former has been around since 2018, though it worsened with CAR-T, but it' still manageable.

The throwing up? I'm convinced it's a weird byproduct of having my T-cells genetically modified. My oncologists cannot explain it with any confidence but it's obvious to me since it began the afternoon my T-cells were reinfused into my body. At first I explained it away as an isolated event from the stress of the moment, but it has continued every 2-3 weeks for 7 months without fail and without any link to food or drink ingested. The Facebook group I belong to has been an invaluable source of information from CAR-T recipients from all over the world, and many have cited their own cases of emesis without cause. 

My oncologist has to do her due diligence and figure out why I'm throwing up, so an appointment has been made with a GI specialist for next month. Frankly, I think it's a waste of time. Throwing up monthly is not something that had been happening before my treatment; in fact, I rarely threw up as a child and don't recall throwing up since I was 12 (outside of 3 pregnancies). 

But I digress.

The point is, I feel back to my-old self before the exhaustion and fainting spells were triggered by treatments in February. But I must remember that my immune system is not back to normal...yet. It is still in healing-mode, even though my monthly bloodwork continues to look great, with only a few values on the low side of normal or just below normal. But the tests that measure immunity have not all been normal, and even though that has been expected post-CAR-T, it is still jarring, especially in light of a pandemic. 

My Immunoglobulins, or antibodies, have been tested every few months and my latest reading shows that I am off-the-charts low on IgA--antibodies that are found in mucosal linings that make up the gut and lungs. Which means that I am highly susceptible to any gut issues (that may explain why I've been throwing up), and to lung issues, like the common cold, the flu, pneumonia, or COVID. 

The value is also lower than it was the last time it was checked, and so is my IgG, which make up about 70-80% of the immunoglobulins in blood. IgG antibodies are produced during an initial infection, then create long-term protection against further infection. In those with a normal immune system, sufficient IgG is produced to prevent re-infection, but in those who are immunocompromised, insufficient IgG renders people like me highly susceptible to infections of any kind. 

In order to avoid possible IVIG infusions (antibodies donated by others) to boost my own lagging antibodies, I was told that my IgG levels need to stay above 400. A few months ago they were 600 and last week they were 513, but the normal range is 586-1602. 

And those not-yet-normal values are why I must be vigilant about my exposure to others, especially in my work environment. My defenses for fighting COVID (or any other virus/bacteria) are deplete right now, no matter how great I'm feeling or how well I look. 

Sadly, I feel more vulnerable this year than I did a year ago when I was undergoing chemotherapy, but a friend reminded me that a year ago I still had an intact immune system. 

Oh yeah, that. 

I had five vaccinations last week that I'd already received as a child--two for hepatitis A/B; one for pneumonia; a Tdap (normally done in infancy); and an influenza B vaccine. I cannot receive the MMR (measles, mumps, rubella) until I'm 18 months out from CAR-T, so I am steadfast about having only-masked interactions with everyone, including my grandson who just started Kindergarten, since most children are walking petri dishes. 

I've resumed my walking schedule, but this time with a mask. I used to think that was over-kill since I'm outside, but knowing how lackluster my antibodies are and how crippled my immune system, I'm not taking any chances. 

This crucial time off will allow my immune system to heal, just like I gave my vascular system time and space to heal when my blood pressure crashed and I kept nearly-fainting on the heels of CAR-T. The symptoms were more obvious then, but paying attention to the needs of my immune system is just as critical. 

So while I'm sad about having to be out of work once again and resume my hermit-ways, I'm grateful that I have a savvy medical team who continues to look out for my health, and a supportive work place that has been willing to ride the highs and lows of cancer with me. 

As always, I am beyond grateful. 

I have been home from Seattle for five weeks and I can happily admit that I feel back to my normal self.

I no longer feel like I'm going to topple over when I stand up (though I do still feel light-headed occasionally); I shower without concern of fainting; and the fogginess in my head has dissipated. I no longer need naps during the day, but I continue to sleep at least nine hours each night, and I rest as needed throughout my day.

My energy and stamina kicked into normal (high) gear about 2 weeks ago so I've been weeding out, cleaning up, and organizing my home. I have also resumed walking almost daily, restoring my endurance. 

I'm still healing, but I feel about 95% back! The only deficit I see and feel is having to take breaks throughout the day to rest, which makes me wonder how I will do once I return to work as a busy nurse. But that's still weeks away...

I was discharged from SCCA (Seattle Cancer Care Alliance) on March 16th after my Hickman central line was pulled from my chest (literally!) during a simple procedure using just lidocaine. I'm happy to not have the nuisance of managing those lines anymore since I have little patience playing nurse on myself.

As I was leaving, some of the staff gathered around so I could hit the gong to celebrate a complete remission! I almost cried from the enormity of the moment and the thoughtfulness behind their gesture. 

I will return to Seattle every 3 months for repeat PET scans and more research bloodwork collection, but in the meantime I am being monitored by my local oncologist. 

I've had my first three weekly appointments and my vital signs have been stellar while my labs have either been normal or just below normal. I'll continue to be monitored, but now it will be every two weeks since I'm currently doing so well. Of course, any of these values can change at any time. It is not uncommon to become neutropenic, where my white cell count can drop way below normal and I'll need marrow-boosting shots to help me fight off infection. So far, I've only needed a few while in the hospital, and as of now, my WBC remains normal.

I may also require IVIg therapy that will provide antibodies so I can fend off infections should my red cell count fall below normal (so far my RBC's and platelets are just below normal but have increased nicely since a few weeks ago). I have been getting random bruises so I have to be cautious about nicks and bumps, and I have noticed red spots that come and go; perhaps my body is in detox mode, unleashing toxins through my skin. 

In six months I may need to get some or all of my childhood vaccinations redone since CAR-T wipes the slate clean, and I cannot get the COVID vaccine until I'm three months out from my treatment (mid-May). I will not be able to return to work as a nurse until I'm fully vaccinated and my bloodwork remains within decent ranges. I'm also on a prophylactic antibiotic fo​r the next six months to keep pneumonia in check, along with an oral acyclovir for a year to prevent shingles.

I finally shaved the few long strands on my head and returned to the Cancer Society to select a new wig. I am now sporting a short and sassy do whose name is Ava (I recycled Lola back to the Cancer Center when my need for her was complete), though I'm not enjoying her as much as I did Lola. My hair is beginning to grow back and I recall that once that happened last time, the wig became itchy, which is already happening. 

My taste buds went on hiatus for a few weeks; everything tasted too garlic-y or vinegar-y, two flavors I love. In the first days home I kept asking my son to taste food since whatever I ate just tasted "off." I was told that they may not recover for four to six months, but happily, everything has returned to tasting normal, and I continue to eat heartily. 

The neuropathy in my hands has improved, so as a natural by-product, so has my hand-writing (yay!). 

I just hit the end of my two-month driving restriction so a new-found independence has been gained. My good friend, Jack, has been a loyal source of assistance; first he took me to all of my appointments in Seattle, and then he continued taking me to my local appointments, along with shopping excursions. I could not have done this long and crazy schedule without his help.  

I seem to be recovering quickly, like I did after each chemo three years ago. It's hard to imagine that just 9 weeks ago I was in a hospital bed needing nursing care, and just four weeks ago I felt weak and faint.

I hope this is a upward trend I can count on since, as I've mentioned before, my labs can fluctuate and my good-feeling can plummet. My gut tells me that it won't be the case, however. 

I'm itching to get back to work since I've been on medical leave since June 22, 2020! My boss has been unwaveringly loyal to me, holding my position until my return. I feel blessed beyond measure. 

In fact, this entire experience has been about humility and gratitude: 

Being humble enough to succumb to a cancer that I have no control over;
Being humble to accept Life on life's terms;
Feeling deep humility for the young, patient, compassionate and kind nurses from whom I've had the pleasure of learning how to be a better nurse, even after 31 years in practice;
Being humble enough to listen to my body when it insists on taking over, then giving in to what it is asking of me;
I'm humbled by the ability of my body to heal after such an assault;
Feeling deep humility and gratitude for so many people around the globe who continue to walk this path with me.

I'm gobsmacked by your loyalty and love.

Thank you for loving me so fiercely, allowing me to heal from cancer one more time. 

One-by-one, I'd gotten each possible side effect but thankfully, I was able to move through each one and heal. 

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. 

I'd been in the hospital for seven days, pretty much enjoying my down-time while the CAR-T cells did their work. Most people who receive CAR-T experience side effects, but so far I'd just had very low blood pressure (80/55!). I remained asymptomatic without any light-headedness, so no one was really concerned.

I ordered three meals each day from an extensive menu by placing a call to the kitchen anytime I felt hungry. I had daily housekeeping, room service, and the medical staff taking care of my every need. Even though I'd brought a heavy bag full of things to do, I rarely touched any of it. I ventured outside my room only once that week and I was surprised to see how large the unit and how empty the halls. I retreated to the cocoon of my room where I was enjoying quiet time and rest. Because I'd been doing so well medically, I was scheduled to discharge the next day on Wednesday, eight days after admission and T-cell infusion. 

In fact, when the MD made rounds that Tuesday morning, I could tell that when he read off my blood markers, he was smiling behind his mask. 

"I'm kicking this, aren't I?" I asked, to which he replied, "We're thrilled with how well you're doing."

Since he's the one who wrote this study, I was sure he was elated about my progress. This study is his baby and I am his number one subject. My case will be written up in medical journals and my good outcome will likely advance medical research. I was honored to be a part of something so important and life-changing. 

But sometime that Tuesday evening, February 16th, I suddenly spiked a temp of 102. Since fever is the primary side effect, nobody was alarmed but blood cultures, a urine culture, and a chest x-ray were immediately done to rule out infection, per protocol. I continued to feel fine, except for hard chills and sweating, but my discharge the following morning was called off, for obvious reasons. 

I slept most of the next day and then spiked another temp of 104.9 on Wednesday afternoon. Another round of cultures were done and Tylenol brought my temperature down quickly; within an hour it was 103.1 and two hours later, it was 102. Ironically, I felt better than I had all day; I hadn't eaten and threw up any liquids. Now, I was suddenly famished and managed to keep down toast. 

CAR-T can cause CRS (cytokine release syndrome), a collection of symptoms that can develop as side effects when immune cells are activated and release huge amounts of cytokines into the body. The inflammatory response is overstimulated, much like what happens with COVID-19. Fevers, chills, nausea, low blood pressure, headache, and high pulse rate are symptoms that often occur but can be easily treated. If not properly medicated, this can lead to a host of problems and breakdowns in the body. The CAR-T protocol requires that patients are in the hospital for at least a week for this very reason. 

So far, I'd had low blood pressure, nausea/vomiting, headache, chills, and fever but they'd been so subtle or random that I didn't think I was experiencing any CRS. I'd been previously told by my medical team that because I'd had such a low tumor burden, I'd probably get through the CAR-T without many issues, and I whole-heartedly believed this. 

I had no idea I was already in Grade 1 CRS until my doctor informed me that Wednesday. 

My son, who was also going to be my caregiver after I left the hospital, was at my home that day packing up my things to drive to Seattle to our temporary housing. Since I was previously going to be discharged, he thought the plan was still in place until he received a call from me, aborting the mission. Fortunately for him, I'd caught him in time so that he was able to return to his family while we awaited my new discharge date. 

So I continued to hang out for another few days. I was told that if I didn't get any more fevers by Thursday evening, I would be discharged by Saturday. But like a running joke, when my temp increased to 100.3 Thursday evening and I continued to run low-grade fevers of 99.0 and 100.0 the next several hours, my docs decided to keep me until Sunday.

My blood markers for inflammation (CRS) were also increasing, which could possibly indicate more side effects on the way. Keeping me an extra few days was good assurance that I wouldn't be discharged before other side effects began, thus requiring a return to the hospital.  

When I spiked another high temp of 101.3 on Friday afternoon, I was in CRS a second time. 

A third round of cultures were done, more antibiotics were hung, and a second dose of Tocilizumab was administered by IV to counteract the side effects of cytokine release. 

I spent Friday night feeling not-like-myself. Each time my IV sounded an alarm, I couldn't figure out how to use the call button to summon the nurse, so I began yelling through the closed door to my room: "Hey! You need to help me in here!" I also recall picking up things off my bedside table and holding them inches from my face, staring at them intently. Everything felt in slow motion. 

Later a nurse told me that after the doctor made his rounds on Friday at 8 pm, I was still lucid and conversive without any signs of problems. But within a few hours, he was already being summoned back to my room. Something had changed about my behavior and speech. 

Earlier that evening my nurse, noticing that I was not acting like myself, put an alarm on my bed so that I wouldn't try to get out of bed without assistance. I'd been getting out of bed on my own all week but my odd behaviors prompted further caution. So when I dangled my legs over the side of my bed, the alarm sounded and nurses came running. Fortunately, I was still aware enough to stay sitting on the bed and when nurses appeared to help I said, "Oooops, I forgot."

I knew that the bed alarm was on and when it sounded, I remembered that I wasn't supposed to get out of bed on my own, but I hadn't remembered to call anyone before I tried to dangle my legs off the side. 

Was neurotoxicity, another side effect of CAR-T, settling in? 

Part of my medical assessment every 12 hours was a cognitive test. I was asked to name 5 objects in the room, name the city and hospital I was in, the month and year, then count backwards from 100 to 0 by tens. Then I was handed a clipboard and was to write the same sentence each time: "Something's fishy at Pike Place." I'd been acing the tests easily, but at 0645 on Saturday morning, I signed my name in a very uncharacteristic-like and messy scrawl.

I was definitely in the beginning stages of neurotoxicity. 

Sometime that afternoon, my son called and I knew that I couldn't hold a conversation. I tried to alert him that I was confused and that it was a normal side effect, but I couldn't get the right words out. I was stuttering and repeating myself. I remember telling him, "I will have the doctor call you," but in stuttered, fragmented words. I knew I was not in my right mind, but I didn't feel freaked out...yet.

My son later told me that he was able to hold it together while he tracked down the PA, my nurse, then called the housing facility where we were going to stay post-discharge. But when he informed his partner about my status, he surprised himself by choking out his words throughs sobs. Hearing his mother stumble through a conversation was disturbing and painful. I hated that my child had to hear that. 

Fortunately, the hospital staff was already hanging Dexamethasone, a steroid that would combat my neurotoxic state, and the PA kept in close touch with my son, who kept his siblings informed about my status. Because by Saturday afternoon, I was deep in toxicity. I could not get my words out and I was well aware that no one could understand me. It was deeply frightening. I knew what I wanted to say, but I felt like a stroke patient who couldn't form any coherent words. Everything came out jumbled, slow, and not resembling any real words. I remember thinking, "That's not what I wanted to say!"

I used my hands a lot to gesticulate, I spoke very slowly, but none of it mattered since I made no sense. I remember crying a lot because I thought that this was my new state of mind.

Everyone looked at me with wide eyes, shocked that I couldn't manage to say anything coherent. Their fear scared me more. 

Up until now, my cognitive scores were 10/10 but in my toxic state, they were 2/10. I could only name one item and follow one command. My written sentences continued to be a messy version of my signature and I didn't write the assigned sentence again until I started "coming to". I knew at the time that I wasn't writing the sentences correctly and it frustrated me. 

It helped that my night nurse, Emily, kept reassuring me how normal my symptoms were and that she had medication to reverse them. It helped that she tried to understand me by coming up with a code: I was to hold up one finger for "Yes" and two fingers for "No" when she asked questions. Fortunately, I understood everything she said so this helped a bit, but only when she could guess what I was trying to say or ask. 

I could tell that it was just as frustrating for her. I could see it in her eyes that she had no idea what I was trying to say and I could feel her empathy for my fear and frustration. 

I even remember Emily going into the bathroom to cry. 

After spending what seemed like an hour with me, she said she had to go. I felt grateful that she'd spent so much time trying to console me and it made me cry--again. I was well aware of everything going on around me; I just couldn't articulate any of it. 

When I began to come out of my confusion in the wee hours of Sunday morning, I begged Emily--in my stilted and jumbled words--to tell me I would return to normal. "Will I be okay?" "Are you sure?" I eeked out between sobs. 

I cried about my kids and openly sobbed about "My Mavis" and "My Wyatt," my grandkids. I emphatically drew out "Yessss" and "Nooooo," words I could manage to say, but I couldn't choke out much more. I was still mostly confused and I knew it. 

Then around 4 am Sunday morning when Emily walked in, I woke up out of a deep sleep and suddenly started chatting up a blue streak. She later told the day shift nurse that it was as if a light switch had been flipped and I could suddenly talk again. With her back to me at the computer, I announced very loudly through sobs, "I know you understand me." She quickly turned around and said, "Yes, yes I do!"

I kept repeating that my daughter's birthday was March 8th and she'd be 16, then I quickly corrected myself. "No, that's not right. She's going to be 26!" I couldn't stop talking about my kids, and each time I did, I openly wept. 

I was surprised that when I asked Emily how long I'd been confused, she said "24 hours." It had felt like five days. 

When she left my room a few minutes later, I was afraid to return to sleep. I was afraid that I would lose my ability to speak again so instead, I thanked God for pulling me out of the previous hours of hell and pleaded with him to keep me sane. I also chatted with myself: "I'm going to be fine; I can speak again; I'm being taken care of."

If anyone had been listening in, I sounded like a small child with a small voice convincing myself that I was going to be okay. 

I also practiced answers to the cognitive test. I named items around the room, named the hospital, city, state, month and year, but when I tried to count backwards from 100 to 0, all that came to mind was "Robin, Jim, Tom, Diane, Dan, Marty, Barry, Katie"--the names of my siblings in correct order. 

When the day shift nurse appeared a few hours later, I informed her that I still couldn't count backwards by tens and she said, "You have an hour to practice," so I did. But beyond "100," I couldn't remember anymore numbers. When my nurse returned to give me my test, I looked at her blankly when she asked me to count, then I slowly started: "100, 99, 98, 98, 97, 96, 95, 94, 93, 92, 91, 90." 

"Great," she answered. "Now count backwards by tens," and I did without hesitation. It was then that I was convinced I was finally past the toxic stage. 

The rest of Sunday was spent quickly coming back to life. 

By Monday, day 13 post-CAR-T, my inflammatory markers were near zero and my vital signs had remained stable, so I was taken off all antibiotics and steroids. I was doing so well that when my doc visited that afternoon, he said if I remained stable for the next 24 hours that he would make plans for discharge on Tuesday. As he said it, he knocked on the wooden door saying, "The third time is the charm!" He also leaned in close to whisper the news since he didn't want the discharge fairies to sabotage my release. 

I couldn't believe how quickly my neurotoxicity had turned around and how soon they were willing to let me go, but I was ready. 

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. 

​Well, it's official...

If I back out of my CART-T procedure now, I will owe the Cancer Center $373,000.00!

Gulp.

Not wanting to sell my home or sacrifice this potentially life-saving procedure, I arrived at the 5th floor Immunotherapy unit at 0830 on Wednesday morning. I was escorted to bed #3 where 2 nurses immediately set up their field for IV insertions for leukapheresis--the process which separates T-cells from my blood, to be re-engineered for an anticipated cancer remission. 

A large bore, 18 gauge, steel needle was inserted into my left antecubital (the crease where the arm bends at the elbow) that would be pulling blood from my body and into the cell separator machine. I was to keep that arm perfectly still for the entire length of the procedure so I asked for an arm board to affix my arm to it. I didn't want to jeopardize anything by inadvertently using it.

A smaller needle was placed into my right forearm, making my arm and hand easily accessible for use. The blood that had already been separated would return to my body through this IV. 

Once the setup was complete, and various double and triple checks were done, the machine was started at 0920. It quickly became a cadence of click, click with the tubing being squeezed to encourage blood flow, much like the action of peristalsis in the intestines, or contractions as the uterus pushes a baby out. The noise eventually faded into the backdrop of the chatter and other noises in the room. I didn't feel anything, but because the IV lines were draped across my body, I could feel a slight vibration of blood running through the tubes. ​

I had already been warned that I may begin to feel a "buzz" in my body that would indicate low calcium, a perfectly normal reaction. I'm not sure how long my blood had been exiting and entering my veins, but at some point I felt an oh, so subtle buzzing in my left thigh. I mentioned it to the nurses who rationalized that I was getting low on calcium, but I wasn't convinced. The buzz was so subtle that had I not been waiting for it, I wouldn't have noticed it. Instead, I thought maybe it was the hum of the clicks and clacks of the machine vibrating through the IV lines that were splayed across my lap. 

But then my stomach started to rumble, along with my left foot, so I reported it again, this time believing that the nurses were probably right. Five minutes later, my bottom lip began to quiver, confirming what we all already knew. After calcium was added to my IV line, my body stopped buzzing for the rest of the procedure. Wild!

Surprisingly, the process went quickly. Between engaging with the nurses who kept coming in and out of my cubicle, helping where they could, to checking Facebook, eating, and doing a crossword puzzle with my friend, Jack, the day was easy and uneventful.

Pain began in my left arm about halfway through, probably from tensing up my muscles in an effort to guard my precious IV. It wouldn't relent, no matter how I tried to relax my shoulder, arm, and mind. I was given several heat packs and a heating pad to alleviate the pain, and it helped a bit, but by the end of the procedure, my muscles were feeling as if I'd just done a thousand pull-ups. 

Nearly four hours later, at 1:10, the machine sounded its "end" alarm with a little song and in a flurry of activity, my T-cells were packaged for a flight to California, while my IV's were removed. By then, my bladder had been screaming at me to be emptied so I slowly made my way off the bed and into the nearby bathroom, just in the nick of time! I wasn't able to use the bathroom earlier since the machine couldn't fit into the stall, and I wasn't about to subject myself to the embarrassment of using a commode in the middle of my curtained cubby. 

I returned to my cubicle and after a quick signature, I was released. No recovery? No snacks to make sure I was okay? 

Nope. It felt strange leaving the nurses behind who were still making final preparations for my blood to be transported. I felt like I was sneaking out behind their backs, but by the time we'd exited the unit, no one came to get us, so I was home-free. 

Feeling slightly tired the next day, I still resumed my normal routine. It was typical that my labs dipped a bit, but overall I felt well, and continue to feel peppy and energetic three days later. 

Because I'm in a study, there are frequent adjustments to my schedule and appointments, so when my follow-up visit to the clinic revealed a new procedure for next week, I questioned it. 

Why do I need another biopsy? I've had two already and we already know what this cancer is. 

It's just a quick procedure using an ultrasound, my nurse informed me. 

Uh, no, it wasn't. Both of my biopsies were done under general anesthesia and I am not willing to do that again, not now at this critical time. 

As a study participant, I get the final say in what I will and will not participate in, and while I'm an easy patient who is more than willing to help Research, I had to put my foot down for this one. My body has gone through too much in recent months and within the month it will endure a potentially difficult recovery.

My nurse agreed. Okay, I'll make sure it's off the schedule, she promised.

It pays to be a medical professional who knows what's acceptable or not, and it also pays to self-advocate. Fortunately, I saved myself another surgery by speaking up. 

My T-cells will return from California all jazzed-up around February 1st, so I will have to relocate near the hospital before then. I will undergo 3 days of light chemo (much less than I've already had in the past), with two days of rest. I will then be admitted into the hospital a few days later for at least 7 days. The need to remain flexible is critical as the timing of processes can change by a day or two on either side. 

I'm ready. I'm anxious. And I trust that all will continue to be well. 

I'm even starting to get excited that, perhaps, this really will be my miracle cure. 

Godspeed to me. 

​

Well, after a frustratingly long wait without much news, things are finally rolling. 

I spent two days in Seattle last week, the first day to get a current PET scan (29 days after the last one!) and meet with the people who will be seeing me through the CAR-T procedure. The Immunotherapy floor is divided into three teams and I think it's serendipitous that I was put onto the Ruby Team since that is my birthstone!  

The second day was spent trying to absorb a not-so-trivial amount of information regarding my chemo pill (acalabrutinib), the procedure, and side effects, along with signing another mountain of consents for both the CAR-T and the Clinical study. Eleven vials of blood were collected and a COVID swab was done, which will be done weekly until I am discharged from services in a few months. 

I also had a "vein check" to determine if my veins are large enough for leukephoresis, the process that extracts my blood and separates out my T cells to be re-engineered in a lab in California. I passed with flying colors (phew!) so I will not have to have a catheter inserted into my neck for blood retrieval. Instead, I will have an IV in each arm, one that collects my blood before it travels through the apheresis machine (also called the cell separator--duh!), and one that accepts my blood back into my body after it has already been separated.

The process will take 3-6 hours, depending on how I respond to the rate at which my blood is extracted, how thin my blood is when it travels through the machine (thin blood makes for faster extraction), and if I develop any side effects. The most common is temporary numbness or tingling in the jaw, fingers, or lips, which means low calcium due to the extraction of blood one cup at a time. In the Facebook group I'm in for people who have already had this procedure, I have been warned that my body may begin to "buzz" all over for the same reason. The easy solution is to administer calcium through one of my IV's. 

The hardest part, I've been told by the apheresis nurse, is having both arms "occupied" with IV's, so when I need to use the bathroom, I will need to use a commode since I cannot be taken off the machine and the machine does not fit into the bathrooms! I will also need help since my arms will not be very useful. Oy. 

The repeat PET scan was done for two reasons: in compliance with the Clinical Trial, a current PET had to be done within 4 weeks of beginning the chemo pill, and we missed that date by two days! Second, because Recurrent Diffuse Large B-Cell Lymphoma is typically unstable, it can proliferate at any moment. Thankfully, although new areas lit up on the scan, they remain small. The original site next to my trachea has grown about .05 cm. while another site on my right chest has grown .02 cm, but has an uptake rating that has gone from 1.9 to 8.29, which means that its strength has increased by a lot. Not good. 

At the same time, it is interesting that my LDH has been the very best it has ever been at 152. A normal reading is anything under 199, so I probably have a better reading than many of you reading this, though I don't understand why that is and I forgot to ask the MD. LDH is the marker that determines lymphoma, so why it can be "normal" while I have active cancer sites is mind-boggling. 

Although I'm on a chemo pill, its use is not to shrink any of my cancer, but to (hopefully) lessen the possible harsh side effects of the CAR-T. Since the Clinical Trial is studying the efficacy of this pill, it is free to me and to my insurance company, and if I do well on it, I will be expected to take it for at least a year. It has already proven to be a promising drug in shrinking leukemia, so it will be interesting to note how I respond. 

The reason I am not on the chemo pill specifically to shrink any tumors is because these sites are resistant to chemo. I have already had several sessions and cancer still returned, so giving me anymore is no longer beneficial. Hence, the CAR-T, which is currently a "third-line" of treatment, which means that participants have to "fail" two previous treatments. Technically, I have "failed" three: chemo, radiation, and immunotherapy. Because CAR-T has become such a promising treatment in recent years, however, it is quickly becoming a 2nd and 1st line of treatment. 

Good news, indeed. 

I've been on the pill (acalabrutinib) since Thursday night and I have to take it with copious amounts of water and wash my hands afterwards. Hmmm, makes me wonder what hellish kind of poison I'm taking. I woke up with a low-grade headache Friday morning that lasted pretty much the whole day and into Saturday, but yesterday and today I feel fine. I have also had itchy, watery eyes for months so allergies could be causing a headache, too. Today (Monday), I do not have a headache but the unmistakable smell of chemo is a stench I have not been able to shake since I started the pill four days ago. 

That's right, I can smell chemo. 

It's something I was able to detect when I was going through both chemotherapy and immunotherapy. I cannot explain it other than to describe it as smelling something that resembles poison, though I have no idea where I would've smelled poison for comparison.

It boggles my mind that I am the gal who is fastidious about using essential oils, organic foods, and homeopathic capsules, but I am  also the gal who is putting poison into her body...willingly, and again. What the hell kind of madness is this? 

It just doesn't make sense on so many levels, and yet...it does. 

Science, research, and humans have all collaborated for decades about what works and what doesn't to eradicate cancer, and so far, I've followed their recommendations while using all of my homeopathic remedies. One method offered a 20-month remission, one gave me nothing but pain and a failed outcome, and this upcoming procedure has had very promising results. Sadly, sometimes it takes the right cocktail to create a long-lasting remission and I am aware of many people who have had to attempt several treatments before finding their "right cure" (or not). 

But I also know that living like this, on the edge of life, is not very fun. I am missing out on so much (though it's hard to tell what's due to cancer or to COVID these days) while building my life around treatments, appointments, and how I'm feeling. It's been a big nuisance and annoyance. And while I'm grateful for this new option that may be my miracle, I'm not sure if I'd subject myself to this again if CAR-T does not become my "right cure." 

It's all so exhausting. And I'm ready to rejoin humanity without having to worry about my cancer status. 

So within the month, I will be undergoing my next attempt to reclaim my life. And because I'm a girl who expects miracles, I have high hopes that this will be my "next one and done."  

​There has been a delay in my treatment and it's being held up by...paperwork from my insurance company! As a nurse for 31 years, I have grown increasingly frustrated with healthcare, and this is only one facet of my angst.

An aggressive form of cancer is alive in my body with an ability to become life-threatening at any moment, and paperwork is holding up life-saving treatment. 

I wonder who will be held responsible if I begin to deteriorate because my cancer has decided to go rogue? My CT and PET scans almost three weeks ago showed a growth in cancerous nodes, but thankfully they remain small. In the event that they proliferate exponentially while I wait, though, who accepts the blame? 

My new oncologist has promised me that she will not allow this cancer to grow out of control and I believe her. But when she suggested bridge chemotherapy while we wait for paperwork, I balked. I do not like the idea of putting more-than-necessary poison into my body just because somebody has failed to do their job in time. 

Oh, don't get me started...

I did receive a call from the financial office this morning, however, so I am choosing not to go down that bunny trail of "What if's..." for now. My hope is that the signatures needed will be secured this week, and my treatment plan will resume. It puts me at least 3 weeks behind, but I have a feeling that some of this will be fast-tracked to gain some time. 

In the meantime, I spent a beautiful Christmas with my small family yesterday since they have other plans for Christmas day, and it was a superb way to spend a Sunday! And now that my Christmas is over, I can concentrate on what lies ahead.

I'm still not at all ready for this new treatment, nor do I want to do it, but I understand the need for it. So just like with chemotherapy, I'm moving ahead. Actually, this is different from chemo since I really was feeling "sick" when chemo began. I was on an inhaler to ease my breathing since the largest tumor (4 inches!) was pushing against my trachea, and I had the proverbial lymphoma cough and throat tickle. I do not have any breathing difficulties now, nor am I needing an inhaler, but I do have a slight tickle and cough. It seems to go hand-in-hand with lymphoma. I remember my father had it for months before his diagnosis, and it's one of my first symptoms, too. 

Other than that, I feel great. I've had my normal stamina and energy back (if you know me, it's usually in high gear) since a month post-immunotherapy in October. Essentially, I have been resting and waiting for this next treatment for two months and perhaps that's a good thing. My body has been fully restored so it can tolerate (and whiz through) CAR-T.

At least that is my hope and prayer. 

One of my grown son's approached me over the weekend and asked, "I don't mean to sound morbid, but do you have a Power of Attorney (POA) appointed?" 

I laughed because I have been diligently working on my Will since my cancer recurrence, and I am proud that all of the essential paperwork has been completed. I hate the thought that my kids would have to muddle through my passing with paperwork and red tape, so I have a list of instructions of what to do in the aftermath. 

When I updated my Will two years ago, I was feeling the beginning symptoms that would lead to my initial cancer diagnosis two weeks later (no joke!), so reviewing the documents early on made me queasy. I was paralyzed by the thought of leaving my kids behind and it felt like I was jinxing myself whenever I added to the pack of papers that spelled out my wishes. 

Now, the conversation around my death has become a bit more normalized. My oldest is my Executor and his Uncle has medical and financial power, only because I do not want any of my kids to have to make difficult decisions about their mother's medical care. They are each aware of their roles and seem comfortable. 

I am content knowing that everything will be in place for this treatment, but I am also convinced that its contents won't be needed for several more years, possibly decades. I do not shy away from talking about it or adding information to my Will packet anymore. But I am relieved that all is set, just in case. 

So I kiddingly told my son, "You guys will be rich when I die," to which he instantly replied, "We might be financially set, but we will not be rich." 

I had to choke back tears hearing this affirmation of love for his mother. 

It was then when I realized that my kids, too, are feeling the heaviness around this treatment. They, too, have had to picture their lives without me, but still hang onto the hope that our lives will continue as before with me still alive and well. 

Oy, I am sobbing as I write this. It's all so...heavy. 

But necessary, too. 

They have undoubtedly grown and changed as they've had to process this relapse. We have become closer as a family as the unspoken fear and hope hang in the air between us. 

I had asked one of my son's this summer how he was dealing with my cancer and he matter-of-factly said, "I don't think about it because if I did, my life would fall apart." 

I felt my heart break. 

You see, while I am grief-stricken that I may not be around to watch my children grow into their lives with marriages and more grand-babies and exciting life events, I am not afraid of dying. 

As a 26-year-old, I had emergency surgery when I was pregnant for the second time. The first pregnancy ended in a miscarriage and this pregnancy was being jeopardized by an ovarian rupture that was slowly leaking blood into my abdominal cavity. But as I was wheeled into the surgical suite, I had an epiphany: If I die, I won't even know it. I'd come to terms with dying in a split-second while lying in pain on that gurney, and I still felt okay.

I realize now what I knew then: that death is only painful for those we leave behind. 

I grieve today for the life I will surely miss with my people, but my grief is limited to now, in the anticipation of leaving. And that type of grief is short-lived and manageable. It is grief only in my thoughts because reality shows that I'm still alive, feeling great. 

I grieve the most for the burden of leaving three kids and two grandkids heart-broken, and possibly changed for the rest of their lives. I cannot bear to do that to them. 

But because they are my lifeline to what is real and true, I will continue to believe that this treatment will bring me back home--to them and to my full and vibrant life and self. 

During this Christmas week of Jesus' birthday, I am reminded that on the Friday when Jesus was crucified, no one knew that Sunday, his resurrection, was a miracle waiting to happen. 

So as I wallow in Friday-mode, unsure and scared about my future, I am comforted by the thought that Sunday, my miracle, has yet to happen. 

My hope is to be "resurrected" from this cancer in the new year, ready to celebrate many more Christmases with my very favorite people. 

Merry Christmas, everyone! 

My "arrival" date for CAR-T therapy has been set for December 1st.

I will begin by meeting with the full team of doctors, nurses, PA's, nutritionist, pharmacist and social worker who will be responsible for their part of my care during the course of the clinical trial and treatment. By mid-December I will undergo "leukaphoresis," a process that separates my T cells from my blood, which will then be shipped to a lab to be made into CARs (chimeric antigen receptors). Once these modified CAR-T cells return approximately 3 weeks later, they will be reinfused into my body, at which point I will be hospitalized. 

It suddenly feels a bit daunting. 

After all, I don't look sick, act sick, or sound sick.

I have to keep reminding myself that I have a possible ticking time bomb next to my trachea that could explode at any moment, sending tendrils of cancer all over my body. It may have happened already and I just don't know it yet.

And THAT's the reason I am undergoing this treatment. 

I also have to remind myself that this teeny tiny tumor has not responded well to traditional treatments, even though chemotherapy and radiation did put me into complete remission for 20 months. But after cancer's recurrence this summer and subsequent failed Immunotherapy, CAR-T is my next best option. 

Oh, yeah, I convince myself: THAT's the reason I am undergoing this treatment. 

But, still...it seems like overkill for a 1.6cm tumor when I feel the best I have felt since before Immunotherapy started in July. I have no symptoms of cancer--no pain, no sleepless nights, no fatigue. I have nothing that would suggest that cancer is hanging out squarely by my throat, contemplating its next move. 

Can't we just wait and see what its plans are before we do a complicated treatment that may leave me with long-lasting symptoms or the need for more procedures? 

I have said from the beginning of this story, back in 2018, that I do not resonate with being a "sick" person. Nothing in me identifies with having cancer. It all seems like a grand hoax, a surreal dream. It hardly has felt real, even while I was hooked up to poisonous chemotherapy that dripped into my body every 21 days. 

But for the first time since cancer entered center stage 2.5 years ago, the mention of this new therapy on October 28th grabbed me by the throat a month ago, sending me into a tailspin of doom. I was sure it was going to be my demise. I cried for 3 days straight, unable to bear the thought that I would be breaking my children's hearts and leaving the planet long before I'd planned to. 

I often woke in the wee hours of the morning, a sudden panic taking over. Then my mind got involved, conjuring up worst-case-scenarios:

Will I survive this treatment? 
Will I have long-lasting or debilitating side effects?
Will I see my family again? 
Will this offer a long-term remission?

Elizabeth Gilbert calls this "Horizontal thinking" and it always results in heightened anxiety. Her remedy is to plant one's feet on the floor where reality can be found. But at 3 in the morning, I didn't--and still don't--like that choice. 

So instead, I prayed, often through tears and bargaining: Please, oh please, let me live. 

I would then recite a list of blessings to be grateful for in my own little effort to invite reality in. I have had so much support and have been guided through so many seemingly "tragic" events in my 57 years.

Why not one more? 

But still, I wonder. 

I was updating documents for my Will at this computer when I decided to write a list of songs to play at my "someday" Memorial. I've been gathering documents and files since cancer knocked on the doorstep of my life, uninvited.

Because you just never know when "things" may happen, and I want to be prepared so that my three children do not have to bear the burden of figuring out how to both grieve the loss of their mother and stop the details of her life. I have left step-by-step instructions about how to delete accounts, collect inheritances, and disperse my belongings. 

It has been no easy task. It has taken great fortitude and so many tears to attempt to lessen the load for those I may leave behind. Excruciating is an understatement. 

I signed into Youtube and started listening to old and new favorites. I eventually had to stop because I was sobbing so hard I couldn't catch my breath. 

Facing my own mortality has been next to impossible.

I'm not ready for the possibility that this go-round with cancer may take me. And I don't want to do this treatment. I'd rather just forget about this 1.6 cm piece of cancer and return to work. 

                                                           **************************************************

It's been a month since I received the news of this treatment and after weeks, days, and hours of contemplation and tears, do I really believe that I won't be coming home from this?

No, I do not. Taking this time to consider my options has allowed me to come to grips with the enormity of what's ahead, and with a lot of research and reaching out to those who have already gone through CAR-T, I have also gained invaluable insight. My upcoming treatment has, little-by-little, started to shrink in its intensity. 

So has my fear. It no longer feels enormous, but manageable. 

I actually have a lot of peace around this next step, even though I still remain skeptical: is this the correct treatment for me, right now? I know I can't live in both spaces--peace and skepticism--so most of the time I move forward with the treatment plan despite nigglings of doubt in the back of my brain. 

But this is my reality: I am both skeptical and I am at peace. 

It is faith that has beckoned me forward despite my internal conflict, which led me to ask the question in the Facebook group of those who have experienced CAR-T. Forty-four people chimed in, offering words of encouragement and details of their own stories. It wasn't until a certain explanation was posted that I finally got my "Aha!" moment. No one has been able to adequately explain why CAR-T is the best option for me, despite my tumor's small size. 

Besides the fact that my cancer continues to return even after annihilating it with harsh drugs and many rounds of radiation, these treatments are also known to "shoot without a target" so small/microscopic cancerous cells, which go undetected on scans and biopsies, remain and grow back.

"It's like an army battalion shooting everywhere (chemo) versus highly trained snipers (CAR-T) that have a great attack plan." My re-engineered T cells will attack and destroy all cells with cancer anywhere in my body, and will continue to do this for quite some time. 

This explanation cinched it for me. It now makes sense. I have understood all along that my aggressive cancer needs an aggressive counter-attack, but I have been stuck on the fact that my battleground covers little territory (1.6cm), so why is such a complicated and harsh therapy needed? 

Now I get it: One lone node like mine still has the agility to evade treatments that "shoot everywhere," so it needs a sniper with pinpoint accuracy to do the job. 

My skepticism, aided by my peace and a well-written explanation, has finally led to acceptance. 

​It's time to roll...

I've been to Seattle twice in a week, first to find out the awful news that my cancer was aggressive and would not be going away without aggressive therapy; and second, to sign paperwork to participate in a clinical study and meet with another doctor who wrote the study. 

I went with a list of about 30 questions and the new MD went through them, one-by-one, answering them all thoroughly and to my satisfaction. I felt better equipped to make a more informed decision and now I feel more knowledgeable (and somewhat relaxed) about the process. 

Although I still don't have a time-line of events on the calendar (on-boarding into a clinical study is its own lengthy process), I have a better idea about what to expect, and in what order. Basically, I will return in the next week or two for tests and screening (PET/CT scans, ECHO, physical, and bloodwork) to make sure I am eligible for the study. 

Once I'm officially accepted into the study, I will begin a pill that's currently used for other cancers, for 3 days to 3 weeks, depending on how the schedules of the other processes line up. I'm guessing there is some flexibility in this since no one has been able to tell me any definitive dates yet. Then my blood will be taken and my T cells sent off to the lab to be re-engineered with receptors that recognize my type of cancer (fascinating!).

At this point, I am still at home, visiting Seattle just once or twice a week for blood draws. Since I will be getting poked so often, I will also most likely have a PICC line placed in my chest, an IV that has access to a large vessel for chemo infusion, T cell extraction and reinfusion, and blood draws. With chemo two years ago, I had a port that was surgically implanted; a PICC line will be inserted while I'm awake (eeek!) and is temporary. 

When the doctored T cells (CARs) return after 2-3 weeks, I will undergo three days of "lymphodepleting chemo," which means I will receive a lighter dose of chemo than what I've been used to (yay!). Chemo is given to lessen the tumor load so that the CARs can expand and survive in my system.

​I will have to relocate south once chemo begins since monitoring will be turned up a notch, and I will definitely have to be in the hospital for at least 7 days, maybe longer depending on my response, when the T cells are reinfused a few days after chemo.

After that, I was "strongly encouraged" to find a caregiver who can check on me for any side effects that may crop up after hospital discharge. I will still be required to be close to the hospital, but I won't have the constant eyes of the hospital team closely monitoring me. 

Since I have no one who can drop their lives to stay with me, I'm going to ask if "remote care-giving" is an option. After all, if the docs only need someone to check on me once daily, couldn't they do that over the phone or via ZOOM? If I don't answer the care-giver's call, the team could then be alerted. I will have to see if this will fly with my doctors.

(In the meantime, I emailed my family and was overwhelmed by their responses; everyone is willing to check on me and three of my siblings volunteered to fly out to stay with me. I couldn't help but cry happy tears). 

I was surprised to find out that not everybody is automatically guaranteed a spot in a clinical trial, but because different ones are occurring all the time, the chances of getting into one that is more appropriately suited to each individual is high. I was also informed that I was "cherry-picked" for this particular study because of my age, my overall good health, and my low tumor burden (it's still very small). Most people who have the CAR-T are often on death's doorstep and the therapy is their final resort toward remission. 

This is precisely why I am reticent about doing the treatment. I feel great, I look well, my energy has been restored, and I have no symptoms that would signal there is an aggressive, tiny tumor near my trachea that has the potential to cause massive harm. And now I will have to submit to a therapy that is potentially life-threatening and may bring on long-lasting effects? 

Oy. 

But I am also one of the lucky ones because my recurrence is sort of an anomaly. When cancer is resistant to several treatments, it tends to proliferate out of control on its own. Chemotherapy stopped a dozen tumors in its tracks fairly quickly (after my 4th treatment) two summers ago, but chemo was still continued for a full 6 sessions to guarantee a complete and long-lasting shut-down. Added to that, I had 20 radiation treatments to really make sure cancer was gone forever. 

Despite the success of those treatments, cancer still had the nerve (and apparently, the power) to return 20 months after I went into remission. Even immunotherapy could not stop the growth this summer, so the Big Gun (CAR-T) has been brought in, though I don't think having a small tumor load is the typical scenario for someone getting CAR-T. 

The concern is that while we're waiting for this treatment to begin, my aggressive tumor can suddenly decide to grow out of control, unabated. It is why CAR-T has been deemed the best option, because if this teeny-tiny tumor grows, it may be unstoppable and can overtake my system faster than any conventional therapy could treat it. 

So while I am reticent about trying something so radical for such a small tumor, I am also aware that any less radical treatment may not be enough if this cancer goes rogue. But in the seven weeks since Immunotherapy, and two weeks since the latest PET scan, the tumor has remained stable and unchanged. 

Phew!

Another PET scan will be done in the upcoming weeks to obtain an updated baseline, so here's hoping that the tumor remains teeny-tiny. If so, treating it with CAR-T should be more of a breeze than other folks who are trying to eliminate several, probably large, spots in their bodies. 

I'm realizing that being specifically chosen for this particular study has its perks. I am apparently already well-known on the hematology floor (at the second-best cancer treatment center in the world) as my name and clinical case come up in daily rounds. I was "warned" that "several people will be hovering around me at all times," ensuring my safety and anticipating a good outcome for research. 

Hovering and pampering? I am all yours! 

The study is to determine if getting a chemo-like pill twice a day before the CAR-T will have any significant impact on side effects. If I don't do well on the pill, or I decide not to take it, or the team stops it, the study will take all of that into account for their research. No matter what, I will still get the CAR-T. 

Since Seattle implements a team approach to how they treat patients, I have received several phone calls from several people who take care of their particular task. Yesterday, Oliver from insurance verification called to let me know that he's working with my insurance company, but because I had already called them last week, I already knew what he was trying to report: that I have unlimited benefits! 

What I couldn't have guessed is that I have to sign a financial agreement before the study begins, which states that if I pull out of the treatment after my T-cells have been taken from me and sent to the lab to be re-engineered, I will owe $373,000.00! I guess that's good enough incentive to determine if I really, really want this treatment!

Another surprise was when I asked the doctor how many others have taken the pill in conjunction with the CAR-T.

His answer?

"You are the first". 

I am considered "N1" which means I am part of a clinical trial in which a single patient is the entire trial, a single case study. So far, I am the only one in this study (it can take up to 20 participants) and definitely the first, ever, anywhere else!

That scared me initially, until the MD reiterated that I can stop the pill at any time without consequences to the study, but I can also make medical history if this goes well. 

Hmmmm, as a nurse and humanitarian who believes in organ/tissue donation, stem cell research, and cord blood usage, I am all for contributing to research and science. It helps that this pill has already been used to treat other cancers on its own and has been FDA approved for several years. 

But still, it's a heavy (albeit exciting!) load.

I am already feeling so well taken care of by the Clinical Trial Team, even though I will be getting passed off to the CAR-T Team next to begin the process of T cell extraction and reinfusion. 

In the meantime, I have been researching housing options near the facility, feeling a wee-bit stressed about getting a place secured in time. But during our meeting, the Coordinator told me that the Social Worker assigned to me will do all of that for me and may even be able to secure financial aid assistance to cover costs while I live in another city for 2 months.

Wow! For a gal who's used to figuring it all out on her own, this level of support reduces me to tears. 

Of course, I've been in tears a lot lately: first, my diagnosis; then the election; always when I think about possibly leaving my kids behind if this treatment goes south; and each time a miracle arrives--which has been constant. 

I am not only being taken care of by a medical team who hardly knows me, but by my family and a large group of friends who love me, and by God and angels who remain faithfully by my side. 

I am humbled, overwhelmed with gratitude, and massively hopeful that this outcome is the one we're all praying for.