Tamara’s Story

Site created on August 22, 2019

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Journal entry by Tamara Whitney

I am not a huge fan of rodents, reptiles, or insects. I wasn’t the kid who wanted a guinea pig, hamster, rat, or a reptile growing up. Nope.Not me.Not EVER. My extent of handling any type of insects was rollie pollie ollies or ladybugs. Of course my mom’s other daughter, my beloved little sister, Heather Leigh, begged for and owned several rodents and reptiles at some point during her childhood. Who’s your favorite now, mom? Hmm? I suppose I was too influenced by the June Cleaver era toys like Baby Alive, Holly Hobbie, and Barbie than to concern myself with creepy crawlers. Even now when I visit Kassidy, we’re like a couple of furniture dancing opera singers if we spy a southern cockroach. Yes, even the cockroaches are bigger in Texas! “MoooOOOm…. Get the brOOOoom and kill it, KILL IT! Where did it go? OOoh noOOOo! WHERE did It gOOoo?”  When I lived in the South, in N’Awlins. I was terrified by stories of the orange-fanged nutria. With a face even a mother would find difficult to love, the ½ beaver, ½ rat, giant rodent lurked in the canals. I never actually saw one, but I sure avoided the canals!

When Ali and I blended our families, he snuck Jake The Snake into our home after my hardlined stance of NO rodents or reptiles. Then he played Persianly innocent (yes, that’s absoLUTEly a thing in this family) by claiming “Whaaaaaa?  What else was I going to do with him?” After sending me a smoldering glance with his dark and enchanting Persian eyes the snake stayed…UGH… inside a terrarium, in a closet, behind a locked door with a big heavy book on the top to ensure he could not escape. Once-a-month or so, I watched Alex and Emily head upstairs with a brown paper bag knowing that inside was a tiny little mouse soon to be devoured by a long, scaly, slithering giant who would make sure his dinner was oh…so...slowly digested. Ick, just ICK, and “icks” ... and I don’t get along too well.

During Ali's deployment to Kuwait, a foul odor permeated the entire west wing of the house. I called my trusty exterminator, an 18 year old kid eager for praise in his first job. “I’ve located the area where the odor is coming from ma’am,” he said as he pointed to a shelving unit full of rarely used sports equipment in the garage.  “Really?” I replied, “How can you be sure?” “Well ma’am, I’ll just crouch down like this…crawl on my belly like this… scoot under the shelf like this… and shine my flashlight like (his smile quickly turned to a yikes! emoji)... Uh yes ma’am, I definitely found the source.” ICK! As he stood up and dusted himself off, I panicked “Wait, you’re not going to leave them there are you?” It was my turn for smoldering eyes, but it was the promise of a good review on Yelp that sealed the deal for him to remove every single one of the mice Brady Bunch that picked the wrong garage to call home.

Back when I lived in Valley Center, one of Kassidy's childhood besties was over to swim. Upon opening the pool toy bin, Renee (Nay Nay), an animal lover and future Valley Center Rodeo Queen, motioned for me to come look. Her angelic voice said, “Aww…Tam, they’re so cute.” Wrong answer Nay Nay! Trigger! Buried below the pile of pool noodles was a nest of a dozen or so baby mice. ICK! In that moment I lost all sense of sensibility (not like there was a lot to begin with, but I assure you, at that point, it was GONE, girl, GONE!). “OH MY GAWWWD! NAY NAY, HURRY!” I screamed. She looked at me in a panic over my sudden outburst. Respecting the fact I was the adult in charge she didn’t question when I promptly thrust a Shop Vac in her hand, ran to the other side of the yard and shouted, “GET THEM RENEE!” The poor child had tears streaming down her cheeks as the Shop Vac worked magic. I’m quite certain my groveling cost me several trips to Starbucks and/or frozen yogurt! For all of this to make sense, we have to go way back, before Yelp, before Cliff Notes, before boredom became a word in every child’s vocabulary, to when I was wide-eyed with a nose buried in books like Charlotte’s Web and Stuart Little.

I was around ten years old or so when a neighborhood friend asked if I could watch her pet for the weekend. “We’ll be back Sunday morning,” she said. I was reluctant (and well trained). “Have you met my mom?” I asked. “I can guarantee it will be a HARD NO!” And it was… until I peeked inside the box to see a pure white, wide-eyed little mouse blinking nervously in a corner. He was nibbling and washing his tiny pink toes. “Oh… he’s so cuuuuuute!” I poked my finger into one of the small pencil punched holes on the top of the shoebox and felt his soft fur. I had immediate visions of us becoming very best friends. So much for being well trained. Just like that, operation “What was I thinking” was in full force. 

I placed the box in the corner of my room, out of sight from my mom who checked in on me when there were long spells of silence oh how mom’s know… The mouse was a busy lil thing. I could hear him scratching and nibbling, so when mom made her rounds I’d simply turn up my boombox and sing along to a little Air Supply or The Bee Gees. The plan was solid. As an only child for much of my childhood, thrill seeking moments kept me quite busy. And on that day, my only focus was the thrill of hiding a mouse in the house. At bedtime my mom did her final inspection. “Music off, It’s time for bed.” She turned the lights out as I smiled innocently at her. I laid in the dark listening to the soothing scratching of the little mouse living his best busy-body life. What the heck is all that scratching for anyhow? Doesn’t he ever go to sleep? I felt very noble to be able to care for this little creature who might otherwise be in a lab somewhere under the evil eye of (yawwwwn) a mad scientisttttt……zzzzzzz…… I awoke in the morning wiping sleep out of my eyes. But wait, something was different. My room was… silent. My eyes landed on the shoebox. What once were tiny little air holes were now giant chewed exit holes. The box was empty! OH NO! I turned to the left… then right… as though he’d be standing there legs and arms crossed with a smirk asking me “How YOU doin’?” There was nothing, no sign anywhere. PANIC! I suddenly envisioned his little face plastered all over milk cartons, and my little face plastered on Most Wanted signs at the post office. Ok Tam, get that mind of yours working. You’ve read nearly every single Nancy Drew book, you can solve this. After assessing the room, I determined this was one and ONLY instance where thick, bright orange, 70s shag carpet would come in handy. As long as the door was closed, it would be difficult for him to escape under it. Whew, the subject is contained. Wait, can mice climb walls? I eyeballed the vent near the ceiling. That Saturday proved one of the longest in my entire life, and my mom didn’t make it any easier.

“Tam, why don’t you go to a friend’s house and play?” 

“NO!”

“Wanna bake cookies?”

“NO!”

“Go shopping?”

“NO, NO, NO! Just leave me alone mom, I’m playing.” And I was…well, kind of. I set up my favorite game in the middle of my room. The rickety stairs, the bathtub, the marble placed gently on the gloved hand. Will he be fooled by these little plastic cheeses? I wondered as I meticulously pulled back the rubber band and attached it to the stop sign. I became the mad scientist I once feared, convinced this Mousetrap Game was going to save my life… literally. Rubbing my hands together I whispered, Hah! I’ll get you my little pretty!

After what seemed like hours of unsuccessful searching and countless wadded up pages of scribbled diagrams for catching mice, I did what any ten year old would do. I decided to ignore the situation entirely. I left my room, closed the door, and hoped that by the time I returned, he’d be back. I baked with mom, played with friends, roller skated in the neighborhood completely forgetting about that mouse. After a full day of play I was singing at the top of my lungs in the shower when I suddenly realized I had left my bedroom door open. OH NO! With dripping wet suds, I wrapped my towel around me and made a mad dash to close my bedroom door. But was it too late? Ugh... Mousesitting was exhausting. 

I began contemplating one of the greater questions of life…. to tell my mom, or not to tell my mom. I kneeled down beside my bed, closed my eyes and folded my hands. Dear Lord, I know I haven’t prayed in awhile, but this is really, really serious. I promise that if you help me with this one little teeny, tiny situation, I will not ask for anything else for a while. I promise I will be good, think of others first, and give back when I can. It’s just a mouse, Lord. Just a tiny lil thing. I got serious. You want me to live, don’t you? If my mom finds out-- and then I heard a squeak. Between the orange shag carpet and the bright yellow painted wall in my room was this scared little thing no bigger than a silver dollar.

When recently sharing this story with Jacob, he asked, “Mom, what happened? Did you get the mouse in the box? Did you return it to the friend who asked you to watch it?” Truthfully, I don’t remember and it doesn’t really matter. The only thing I know is that I’m still alive, and I can assure you that if I hadn’t found that mouse…

Speaking of still being alive…my October PET Scan showed progression of cancer. The “miracle drug” I had been on (and off, and then on again) stopped working. What now? After weighing my options with my Kaiser oncologist, we decided it was time to seek out a clinical trial. This meant getting treatment from a research based medical group. While waiting for the ink to dry on the referral to University of San Diego (UCSD), I began my seventh line of chemotherapy and started immunotherapy. In the meantime, I booked a whole LOT of travel. I may not have Stuart Little’s red convertible but I definitely have his adventurous spirit. Keep moving Tam, just keep on moving. During travels, I scoured the internet reading up on clinical trials, data, and doctors. I familiarized myself with targeted cell therapy including CAR T-cells, Cytokine-induced killer cells (CIK cells), and Natural Killer cells (NK). I emailed friends, family, and friends of friends and family, meticulously adding notes to my tabulated, numerical, color coded, spreadsheet. And of course, through it all I was mom.

One day while driving Jacob home from school, he asked, “Hey mom, wanna hear about the book I chose to read for class?” Ok, who are you and what have you done with my son? “Of course!” I answered. He read the back summary to me as I used a full arsenal of “mom’s not really listening” responses, “Oh really? Uh huh! Wow! Sounds great Jacob.” The book conveniently ended up on the kitchen counter where it disappeared under a pile of all things Jacob. A few days later, I hung up from a call with a clinical trial coordinator who was discussing consent for my tissue samples when Jacob took a sudden interest, “Mom, that’s exactly what I’m reading about!” For the next twenty minutes I refrained from mom replies and genuinely listened to my son as he educated me on the story of Henrietta Lacks and her eternal legacy to science. Her cells, known as HeLa cells, are widely regarded as immortal. They are used in literally all facets of medicine from vaccines, genetics, and cancer research, to virology (even COVID-19 research), toxicology, and engineering organs and tissues. He spoke of the injustice her family endured as medical corporations financially benefited from her miracle cells without her consent. He warned me about the importance of knowing exactly what I’m agreeing to.

I thought of Henrietta Lack’s plight and Jacob’s warning as a revolving door of UCSD doctors entered and exited the exam room. “I’ve read over your case,” the first doctor said as his eyes scanned the screen and he scrolled down several dozens of pages. “I have to tell you, the data in this computer does not connect to the woman sitting before me.” I wasn’t quite sure what he meant. “You have been through a lot.” He caught me completely off guard. In my personal quest to be almighty, I’ve rarely stopped to let it all sink in. It felt surprisingly good to have a stranger give me validation. “By looking at you and feeling your energy, I would never guess you are as sick as you are.” Is that a good thing? Yes! I took a deep breath, swallowed my emotions and thanked him. He may never know it, but that moment is a defining one for me for reasons that are obvious to those who know me well. Eager to prove to this new group of UCSD research doctors that I had done my due diligence I was prepared for business. Our relationship was symbiotic, not hierarchical. I had what they needed, and they had what I needed. I channeled my inner Nancy Drew and unleashed a list of impressive questions. Afterall, life challenges are overcome by seeking answers, analyzing data, and questioning processes. Piecing information and clues together empowers us with knowledge. And knowledge is a fierce weapon in the battle of cancer. One of my questions was the success rate of this trial in humans. 

“We don’t know yet. You’ll be one of the first with TNMBC,” they answered.

“So I’m basically the lab rat?” I asked the doctor and clinical trial coordinators. They chuckled at my question, but I couldn’t get over the irony, considering my aversion to rodents. 

“Yes, you are in a sense. This is a Phase 1 clinical trial. It tests the dose limiting toxicity of the therapy. We’ll document how much you can tolerate and side effects,” the doctor answered.

“What about the efficacy of the treatment?” 

“That will be measured in future trials. The primary goal here is to inform us of dosage amounts for future patients.” I felt guilty that I was apprehensive. In discussing this option with friends and family, I said that I wanted a Phase 3 trial where the toxicities and tolerance have already been worked out. How selfish of me when so many before me have been lab rats for my benefit. Why NOT me? I gave my word way back when, that I would give back to others  if I found that mouse. I’d like to think that despite a couple of bumps in the road, I’ve done just that. 

“The process is quite straightforward,” the doctor continued. “We’ll use a process called apheresis to harvest cells from your blood. We’ll send them to a lab where they will combine them with a virus. A month later, we will inject the virus and your new improved ‘killer cells’ back into you where the goal is for them to attack and eliminate the cancer in your body.” I could not participate in the trial without giving consent for the use and storage of my tissue. However, I made sure to warn those doctors that if I am the next miracle to science they had BETTER take care of my family. And boy were they impressed when I told them my 16 year-old son was the one who taught me about HeLa (HEnrietta LAcks) cells!

Apheresis took place late November. Mom and I spent the day in the hospital while I was hooked up to a machine that was harvesting millions of my cells. We could actually see them floating gracefully in my blood. Three days before Christmas, I returned for the infusion. My mom was dressed in a hazmat-like suit wearing goggles and a mask. She stayed with me for the several hour process. Time flew by since my nurse was a fellow Chico Wildcat (albeit a couple decades after me). We reminisced about all that we couldn’t remember from our college days. I practically danced out of the hospital bragging about how great I felt. But I should’ve known better. 

About fifteen minutes into our drive home, something felt a little “off.” What began as slight tremors turned into uncontrollable and convulsive shaking. My mom was worried sick. I reassured her I could handle it, but truth be told, it was handling me. A tsunami of pain swept over my body and settled into my lower back. I tried to walk, but my legs were barely there. My sister kicked into full crisis management mode as she took over my care. I stopped by the bathroom where I promptly vomited until my heaves went dry. The pain was some of the most concentrated I’ve felt throughout this journey, but it was quickly numbed by medication and a weighted blanket thanks to Nurse Heather Leigh. Meanwhile, Nurse Kassidy was documenting everything so I could report it back to my doctors. 

The next morning, I bounced down the stairs like Tigger. Though it was an intense night of flu-like symptoms, all I could think about was the possibility of this one night  every so often being the alternative treatment to chemotherapy. I’ve endured days, weeks, months, and years of intermittent nausea, fatigue, hot flashes, steroid induced mood swings, neuropathy, alopecia, (and this isn't even the gross stuff) due to chemo. The idea that there could be treatment for cancers in the near future that would avoid the harsh side effects of chemo is exhilarating!  I’ll be the lab rat if there is a possibility that less people (and their families) may suffer. Receiving and living with long lasting effects of chemo is arduous and in some cases downright cruel.  

I have a PET at the end of the week (the test kind, not the rodent kind). You never know, maybe I’m like The Immortal Life of Henrietta Lacks and I’ll live eternally through my cancer cells (Go on, read the book or watch the movie.). I think TaMi has a nice ring to it abbreviated for TaMiracle.  The other option?  Well there is no other option. 

Stay tuned….

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