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. 

Ironically, this teeny tiny tumor has been much more worrisome than having a dozen tumors hiding in my chest. A second bout of cancer within two years raises the stakes quite a bit, and we can't just ignore it because it's small in comparison to the larger tumors found upon my initial diagnosis.

Immunotherapy was attempted this summer in an effort to train my body to rid it of cancer, but instead, my body began retaliating with rashes, painful neuropathy, sleepless nights for an entire month, and pain across my chest, mimicking heart trouble. After four treatments, the last two were scrapped due to toxicity and I was sent off to Seattle this week for better and more treatment options. 

I hate to say it was all a waste, however. The initial tumor size of 2.0 was reduced in size, but more importantly, in strength. When a PET scan detects a tumor, it emits an SUV rating that tells the practitioner if the tumor is cancerous or not. An SUV of 1 is acceptable, but 5 is definitely cancer. In addition, a blood marker (LDH) also detects cancer. 

My LDH numbers have been consistently under 200 (normal) with a few above (also considered normal post-treatment). When my initial LDH from 2 years ago shot up to 333, I was in full-blown cancer, and when the teeny tiny tumor was found in May of this year, my LDH was a very normal 188.

Three months and two treatments later, however, my LDH was 282, suggesting that the treatment wasn't working and my cancer was growing. Fortunately, a CT scan showed that the tumor was stable, and another two months and two treatments later (last week), my LDH was back down to a fairly normal 215. A PET scan on October 22nd revealed an SUV of 4.1, which meant that the tumor was not as strong as it had been previously; happily, both numbers suggested a good improvement with immunotherapy so I was expecting good news at my Seattle appointment. 

Something like, "Hey, since your tumor is so small, let's just watch it and wait." Or, "We can nip it in the bud with a few zaps of proton therapy." In retrospect, I'm a bit embarrassed that as a nurse, I wasn't more tuned-in to the serious nature of being sent to Seattle. Or even that a cancer recurrence was never good news. I have been so encouragingly focused on the "teeny tiny-ness" of this tumor that I have failed to realize that once Immunotherapy was off the table, I still had cancer in my body that wasn't going away. 

(Oh, denial is a wonderful thing!).

My point was proven when I met the cancer team in Seattle three days ago. Instead of hearing anything encouraging, I was informed for the first time that because cancer reappeared in an area of my chest that had already been irradiated, it meant that it was an aggressive form of Non-Hodgkin's Lymphoma and must be dealt with aggressively--and soon. 

Needless to say, I've been a bit shell-shocked for the past few days. 

I was presented with two options for treatment, both that were way more serious than what I'd been expecting: I could choose 6 more rounds of chemo followed by a stem cell transplant; or join a clinical trial. 

I nearly vomited at the mention of chemo, so I immediately focused on the trial that begins with a pill and ends with a serious and complicated procedure. 

So what does this mean? Basically, I can choose months of chemo to wipe out the tumor, followed by reintroducing "clean" stem cells back into my body to keep cancer at bay; or, I can participate in a clinical trial that is studying the efficacy of reducing/easing side effects with the administration of a pill before a treatment that's similar to stem cell transplant (CAR-T).

Specifically, T cells will be harvested out of my blood and sent to a lab to be re-engineered with receptors that rid the body of cancer. These are called CARs. Three weeks later, those doctored T cells will be put back into my body.

I asked my new oncologist why anyone would choose chemo over a pill, and she said it is standard of care to do the first option, and the study just became available a few months ago, which is super lucky for me! Had I been sent to Seattle earlier, instead of doing Immunotherapy, I may not have had the option to join the study. I was also told that if I choose option #1 and it fails, the next option would be CAR-T anyway.

Anyone who knows me well knows that I'd rather cut right to the chase and get this damn thing over with, so I have chosen option #2. 

And if all goes well, CAR-T is supposed to be a life-long cure as my re-engineered cells should remember how to detect and eliminate cancer cells forever. 

This is precisely why I love science!
 
I was freaked out and overwhelmed, but the docs were fabulous. They were already well-versed on my case since I was discussed at their rounds the day before my appointment.

While at their meeting, the MD who wrote the study (!), told my oncologist: "If Katie has any questions tomorrow, call me." When I told her I had plenty of questions, she said, "Okay, I'll go call him," and 15 mins later he walked in and spoke with me at length about what to expect. I already feel coddled by a full team of professionals who work in the second highest rated cancer center in the world. 

But after leaving Seattle with a packet of papers in hand, I sobbed pretty much non-stop for two days.

It's odd to be feeling this afraid since chemotherapy, radiation, and immunotherapy never really freaked me out. My BFF was often worried that I went through three treatments so non-plussed; perhaps after 2.5 years of dealing with cancer, I'm finally feeling the enormity of ALL of this. 

In addition to the possible horrifying side effects of CAR-T, I also have to live in Seattle for two months to be near their facilities. They don't want me at home (1.5 hours away) during the treatment in case I need the ER; they want me near a hospital that's equipped to handle any side effects/emergencies.

​This was when I first broke down crying in the doctor's office. Having to relocate for two months to a big city while going through something scary overwhelmed me. But the good news is, because my daughter lives within 20 of their facilities, I was told I could bunk with her (phew!). And my brother-in-law advised me to treat this time away from home as a vacation and to book a hotel, a day spa and anything that will make the stay easier. Wise man. 

Giving into my fear and letting go has helped me work through the process of acceptance. I still feel freaked out at the complexity of the therapy and the possible complications, but I also feel more ready to roll. As a nurse, I have spent the past few days researching the procedure and I joined a Facebook group that's been very positive and helpful. 

I was told not to expect the actual CAR-T for another two months while details get hammered out and I get prepped. I will meet with my new oncologist and CAR-T doctor next week, and I will begin the pill shortly thereafter. I'm not sure of the minute details, but after a few weeks on the pill, I will be given 1-2 doses (not sure) of chemo out-patient to reduce the cancer, making space for CAR-T cells to survive and expand. I asked if I'd lose my hair, and was told "It may thin a bit." No biggie. 

When the T cells come back from being re-engineered, I will be hospitalized for at least one week while the cells are returned to my body and possible side effects are monitored/managed.

Most people weather the procedure well, with few or no side effects, but if the worst happens, it resembles what happens with COVID--a cytokine storm which can shut down my system. Super scary stuff, but the staff is also highly trained to watch for symptoms and can treat them right away--hence the week-long hospital stay. (I'm not sure I read the fine print with chemo and its side effects because I was never worried about them. Now I'm not sure it pays to know so much!). 

I was also told that I'm in the best possible position, medically, to be doing this now: I'm young, in good shape/health (other than cancer!), can handle any side effects better, and the tumor is super small.

​All good news.

But still...

I am feeling the best I've felt since July when Immunotherapy began. It not only hit me with hard side effects that eventually subsided and disappeared once treatment ended, but I JUST got my precious energy back exactly one week ago today. And with no symptoms of cancer, no pain, and tons of energy again, I'm being asked to submit to another procedure that will turn all of that around, and may possibly be life-threatening as well.

It just feels so...wrong. 

But what I'm finding out through others' experiences is that CAR-T is often a last resort after several failed treatments and a growing cancer load. So perhaps that's the approach for me as well. My cancer load may be teeny-tiny, but I have essentially failed three types of treatment. Even though I was in remission for 20 months after chemotherapy and radiation, cancer still resurfaced. 

Oh yeah, that. 

It's an interesting phenomenon having a ticking time bomb in my chest. It reminds me that everything I do can influence the outcome of this cancer--from the things I put into my body, to my attitude, to the choices I make about treatments, and how I view my future in light of a cancer recurrence. 

It's sobering. But it's also life-affirming. 

Because of this on-going experience, I have learned what matters most in my life and it always comes down to the simple things: a wide group of people who support me unconditionally, time with my children and grand-children, delicious food and drink, quiet time, a beautiful sunset, laughter (lots of it!), a deep relationship with God, and my own happiness--just to name a few of the millions of miracles that grace my life. 

And ironically, I do feel happy. Yes, I am still nervous, but as I educate myself I also feel empowered; as I share my news with family and friends, I feel supported and loved; and as I continue to live my days as if they're my last, I feel complete.

​In my grief, there is still plenty of beauty. 

We are never guaranteed more than today, but we do have control over how we face what shows up. It is because of these challenging moments that I choose to rise above them with a positive outlook and stare them down with confidence as I boldly declare: 

Not today, cancer. Not today!

Typically I am blessed with a breather from Immunotherapy side effects for about a week before the subsequent treatment begins, but nothing since Treatment #3 on August 27th has been typical. 

I have been keeping a record of my daily side effects so that I can compare them to each treatment, and to predict when a side effect has gone into hiding. After the first treatment, for example, it was fatigue and a slight rash that took up much of my time and attention. After the next treatment, the fatigue was more heightened, and so was the rash, but after #3, both went into submission fairly quickly. It was the neuropathy in my fingertips and hands, along with the accompanying pain that became my constant nemesis after my third treatment. 

Numb fingers and hands made brushing my teeth, blog-writing, and making tea challenging, but when the pain started to accompany the numbness, I was pretty much incapacitated because the pain tended to travel up both arm muscles, into my biceps, before finally resting deep into my armpits. I felt like I'd been beaten up from the inside out. 

Sometimes, it didn't stop there, but would inch its way across my chest and settle where my heart lay beating. I often wondered if I could be having a heart attack but would never know it since my heart seizes up into a fist, unable to unclench itself--no matter what medication I take, or stretch I do. 

The symptoms became worrisome enough a week before treatment #4 on September 17th that my oncologist wanted to get another CT scan before continuing with anymore infusions. Because my lymphoma began in the space between my lungs (mediastinum) and new pain was radiating there, it was prudent to get the area scanned in case lymphoma was going rogue on its own, proliferating out of control.

Immunotherapy is supposed to be a miracle cure when it works, but when it doesn't, it's pretty much a disaster as it tends to teach the body to turn against itself instead of attack any cancer. With an elevated LDH and new pain, this was a concern for all of us. 

Fortunately, the CT showed that the drugs are doing their job because my 2.0 cm tumor is now a mere 6mm in size, a 75% reduction!

But sadly, that good news weeks ago was overshadowed by my concern over the unpredictable and unrelenting pain that continued to cause sleepless nights, many tears, and many more days spent recovering on the couch. But with a new anti-inflammatory prescribed on my last appointment, it seemed to do the trick of alleviating the body aches. 

Just not for long. 

The pain, sleepless nights, eating Vicodin like candy, and too many days feeling out of commission continued. But when I arrived at my appointment last Thursday, ready for my fifth treatment, I was surprised when my oncologist put a halt on any further infusions. My relentless, on-going side effects revealed too much toxicity and he wasn't willing to take a chance at losing more of the function in my hands or arms. 

I felt stunned, relieved, grateful and overwhelmingly sad. Would I now have to start over? 

The plan is to get another PET scan that will give new oncologists in Seattle valuable information about how to treat me going forward. 

But just a few days after NOT receiving treatment last week, dare I say I may be feeling better? 

I'm certainly sleeping better, at least for longer stretches of time, and my Vicodin use has been cut at least in half. The pain continues in both hands and arms, along with pain/tingling/numbness in my fingertips, but the ache has suddenly disappeared from across my chest. Fatigue continues, but I feel my ol' perky self returning. 

​All good news, indeed. 

Despite my adamant reluctance to go to Seattle for further treatment, I do recognize that I am being fervently watched over and taken care of, and perhaps, Seattle is just the next right move in the on-going web of my care.

After all, everything that has been put into place (or taken away) thus far has worked in my favor. 

Trust has become my new meditation and gratitude has become my new prayer.

Last Thursday was my third Immunotherapy session. The days leading up to it were odd, only in that my side effects kept playing tricks on me. I had already gotten used to the fact that a few days after treatment, I would begin to feel a bit energy-deplete, then at one week, a rash would most likely appear for two solid weeks before retreating. And my energy would be fully restored after just a few days. Easy.

But it didn't happen that way this last time, not entirely. 

Because I had fasted for the four days surrounding treatment #2, I believe I averted any nausea or headaches. Then as predicted, a rash began to appear a few days early, on day #5. What began as small, pink, mosquito-like dots on the undersides of both arms, became red, raised, and itchy over the next few days. Definitely worse than the last time, but still, predictable. 

Once the rash disappeared two weeks later, however, I did not expect the achiness that beat through my arm muscles just where the rash had been. My thighs began to feel weak, too--like jelly--and my left arm felt heavy, like lead. The ache would eventually hit my heart area--causing a bit of paranoia that perhaps my heart was acting up--and migrate just below my ribs. My heating pad once again became my side-kick. The neuropathy in my fingertips was definitely worsening, making writing a bigger challenge than before. 

But this didn't happen every day, nor with any sense of predictability. I have had great days full of energy, stamina, and ease--then have crashed the next, deplete of energy and fresh out of fucks. 

Then I began to have sleep issues for the first time in my life. My body felt jacked-up on steroids or caffeine, neither of which I take. When I explained all of this to my oncologist, he reminded me that Immunotherapy does "jack up" my immune system in an effort to wake it up and teach it how to find and kill cancer cells. 

Oh, yeah. That. 

Lorazepam is now my new nighttime security blanket as it eases my jittery body enough to be able to fall into a deep sleep. 

The beauty of Immunotherapy is that it works long after the drug has left my body. Its intent is to be a wing-man, of sorts, to my immune system, showing it how to destroy foreign invaders. 

So of course the side effects would be odd and annoyingly unpredictable. And the flu-like symptoms are on the list of side effects, just like the rash, so that offers me comfort knowing nothing out of the unusual is happening. 

My oncologist also reminded me that people who endure side effects fare better on these treatments than people who breeze through them. 

Well now I feel silly complaining about them. Bring 'em on!

I have just one more treatment in 3 weeks before another scan will be done and I found out yesterday what it will mean. 

If the CT scan shows anything, a PET scan will be done because it shows tumors in greater detail. If that shows that the tumor is responding to treatment, then Immunotherapy will continue through the end of this year, possibly up to a year, total. Even if the tumor is gone (yes!), Immunotherapy maintenance will still continue for a time. 

I can handle either of those scenarios. 

If, however, the scans show that this teeny, tiny tumor hasn't responded to Immunotherapy, or heaven forbid, has worsened, I will be shuffled off to Seattle to the Mother of all Cancer Centers.

And that, my friends, unhinges me. Because that's when they will most likely pull out the big guns called Stem Cell Transplant. If my immune system cannot handle ridding my body of a tiny foreign invader, it will have to be replaced, which essentially means obliterating my immunity with high doses of chemotherapy, then introducing healthy new blood-forming stem cells to restore my system. 

Definitely good news. 

But I'm already out of work, not directly because of cancer, but because of the risk of COVID-19 and my immunocompromised status. I have an anticipated return date at the end of September, but it also depends on the CT/PET scan results and the current status of COVID infections in my county.

If a transplant is indicated, I will be out of work another 3-6 months, most likely in a hospital bed far from home. The transplant is not the problem since it's a relatively easy procedure that takes only a few hours. The problem is shutting down my immunity with high doses of chemo in preparation for the transplant. I will be back to Square one like two years ago, but worse. Not only will my health be further compromised, but so will my livelihood, my relationships with my kids and friends, and my ability to feel normal again. 

I am not yet ready for that. 

But before I get trapped going down that scary bunny trail, I have to remind myself that so far, the events around my current treatments are going well: I feel mostly better than I did on chemotherapy, albeit a little less predictable; my bills are getting paid; the tumor was teeny tiny to begin with; my body seems to be working with the therapy by experiencing side effects; and no one, not even my oncologist, is heading down that road--at least not now. 

And if I were to be honest, the scenario I am in right now scared me just a few months ago. I thought for sure my life would be upended--and it has been--but I've also been completely taken care of and the respite has been an added bonus. 

As I sit here writing from my kitchen table that overlooks the water on this gorgeous sunny day, I feel relaxed and calm (for now). I am reminded that my life has always been taken care of--all of it--and whatever happens in just one month will be revealed in time. The outcome has always been much better than my fearful anticipation of it. 

One day at a time is all we are promised, so I am trying to make each of them count. 

Cancer this second time around has been very different than two years ago. 

I suppose I can blame COVID-19 for that since I'm doing this all alone in the midst of a pandemic. I cannot have anyone with me at the Chemo Bar, unlike last time when I had a gaggle of friends and family showing up each time; no one is showing up with meals or to visit; I am no longer working as a nurse since the risk of COVID is now too high for my new immunocompromised status; I seldom go outside, except for my daily walks; I make a weekly errand run, dashing in and out of stores quickly while masked-up; and the only interactions I have with others is limited, at best.  

But you know what? lt's all okay. 

I also haven't lost my hair; the every-21-day treatments have already become easier; and the down-time at home has been a blessing in disguise. Not only have I started mini-renovations in my home, but I have also had ample time to slow down, rest, relax, and turn inward. 

I still get calls from work almost daily, and while I feel needed and missed, I do not miss the chaos of the work environment right now. I am grateful that I am stuck at home in semi-quarantine because I have had time to reevaluate what's most important to me. And for today, that's healing completely so that I don't have yet another relapse in another few months or years (I've discovered that lymphoma tends to act more like a chronic autoimmune disease than cancer, which means it also has a tendency to recur). 

My new oncology Naturopath reminded me a few weeks ago that once cancer has gone into remission, most survivors return to their old habits, behaviors, and diets and sure enough, that's exactly what I'd done as well. 

This time, I have to consider that maybe some of those habits, thinking patterns, routines, stressors, and poor eating habits contributed to a relapse. Not that it's an attempt to blame myself for this relapse, but a reason to look at this differently. 

And this quote came to mind: 

I HAD TO MAKE YOU UNCOMFORTABLE, OTHERWISE YOU NEVER WOULD'VE MOVED ~ The Universe

Perhaps it's time to make a move; a bolder one, stronger one, more convicted one. And perhaps this cancer relapse is paving the way there. 

Early on in this relapse, I went for my nightly walk and decided to ask God a few questions. I often use this as my meditation time since I'm able to listen without feeling distracted. And since I believe that every life lesson comes into our lives FOR our own growth, I always approach God in a quizzical manner, asking questions out of curiosity. 

"What is this here for, again?" I started.
"For another reminder of who you are. You need to live life FULLY." 

This seems to be my ongoing message. Apparently, I don't fully embody who I am in the big sense. Like, WHO I AM, a child of God. I have an on-going conversation with God, but when the shit hits the fan, do I really believe that He wants what's best for me? 

I'd like to think so, but I often default to "Yeah, but is He REALLY here for me?" 

It's not like I haven't had ample reminders about my place in the universe, with His steady supply of support and guidance. I am a magnet for manifestations and magic, but when put to the test, do I believe He'll come through AGAIN? 

Not necessarily. 

So as I pondered the answer on my walk, I decided to ask Rupert the same question. If you recall from my stint of cancer last time, I believe that when we are going through a crisis of any kind, speaking to the body part or disease in question is a fascinating way to receive interesting/critical/mind-blowing answers.

Rupert is what the massive spread of a dozen tumors within my chest cavity called itself. He was a Waldo-like character who didn't seem like he could hurt a flea, let alone cause major damage in my body. But from the beginning, his mission was only to heal me. And the day my lymphoma died, apparently so did Rupert. 

Because when I tried to summon him this time, no one answered. But a few minutes later, "Penelope" stepped forward. 

When I say "stepped forward," I mean: "she" (I feel a female presence) announced herself in my thoughts by saying her name. 

And as clear as Rupert had been two years ago, I felt Penelope just as distinctly, though she has no body. She feels like a light, ethereal, pink cloud. She is soft-spoken, kind, sheepish--almost fairy-like. When I posed the same question, her answer sounded familiar. 

"I'm not here to harm you in any way, but to heal you. I'm small this time because I'm simply here to remind you of WHO YOU ARE."  

Damn, there it was again. 

So I've been trying, as best I can, to remember during this time of quiet solitude. I have mostly gone silent during my days at home, listening to God, Penelope, and my own small voice through daily practices of meditation, walking, and writing.

I've turned inward more and more, unwilling to rely so much on the opinions and advice from others around me. They always mean well, but I must be willing and able to listen to my own heart as I embrace this new experience of relapse.

I am eager to discover what this one tiny tumor is trying to teach me as it leads me deeper into healing.