You’ve been an inspiration for quite awhile to me, since I learned that you had a blog detailing what you were going thru and your health issues. I loved the way you inject humor into your telling of the experiences as you were going thru it. Your mantra is “ You Only Live Twice”, and you detail your experience battling two life threatening diseases since 2012. You showed such strength, humor and positivity in your writing, but I know it had to be the hardest time of your life.
Can you give us a little background about yourself and what your life was like before taking on these two diseases?
I am honored to receive an invitation to be featured on The Art of Being Female! Thank you for your kind support and for reading my freak show of a blog.
I am a fourth generation Orange County native, and I hit the jackpot with a dream childhood in the Orange/Tustin hood. I graduated from USC in 1985, and got married one month later to my husband, Todd Miller. We met while sailing around the world on Semester at Sea. Laguna Beach has been our home for the past 30-ish years, and we plan on staying forever. I loved being a stay-at-home mom for our daughter, Mychaela and our son, Rex. Those years were filled with room mom-ming, carpooling, Girl Scouting, team mom-ming and cheering on the sidelines of volleyball and tennis matches. I planned some fun/weird kiddie birthday parties and made some rad Halloween costumes in the 90s. About the time my kids put me out of a job by going off to college, I returned to school myself, earning a degree in fashion design from the Fashion Institute of Design and Merchandising in Los Angeles. Todd and I also founded a non-profit, Global Grins, delivering toothbrushes to those in need.
For the first five decades of my life, I avoided sickness like the plague ☺ I’d never had a broken bone. I’d never had stitches. I’d never had surgery. I’d never fainted. Hey, I’d never had a nosebleed. A genuine alien in the medical galaxy. I had a massive phobia of needles and despised going to the doctor. Medical talk bored the sh*t out of me.
Then there was a screeching, tire scorching U-turn.
Can you give us some information and description of the two diseases. You mentioned that one is so rare that only 300 cases have been recorded. That had to be so hard to diagnose. What were your symptoms that sent you to the doctor initially?
After a full day of running around Disneyland to celebrate my 49th birthday, my muscles started to seize. Nothing too severe, but something was definitely funky. Over the following days and weeks, the stiffness progressed so that I couldn’t bend my arms, raise them over my head, sit on the floor or even open my mouth wide enough to shove in an In-n-Out double double. I hoped it would just go away on its own, but after a few more stiff weeks, I knew I needed to make a rare and terrifying appointment with my primary doc.
After being bounced around to 12 different specialists, undergoing hellish tests, and having dozens of needles thrust into my veins, there was still no diagnosis, and my blood counts began to wander. As the words leukemia and lymphoma were tossed around, I tossed around a few words of my own. Like WTF. I was sent to an oncologist/hematologist who told me he was going to perform a bone marrow biopsy on me. Upon hearing this, I considered bolting out of the cold, sterile exam room, but when the nurse assured me that she was going to give me sedation, I told her to open the IV up and shove in the drugs. I remember counting down to 99 then waking up with nine marrow-slimed slides sitting on the table next to my bed.
Those results came back negative for blood cancer, which was great, but we still didn’t know what the hell was going on with me. I finally met with a neurologist who had a hunch about my bizarre symptoms. He ordered a muscle biopsy that took a large chunk of my flawless (ha!) left quad and sent it to the lab. It looked like Frankenstein ravaged my thigh, and the recovery hurt like a mo- fo, but we finally had an answer: eosinophilic fasciitis, aka: Shulman’s syndrome. I know. Never heard of it, right? Basically, my eosinophils (a type of white blood cell) were attacking my muscle fascia. I joined the club as one of only 300 peeps ever diagnosed with this lovely affliction. My drugs were increased, and my muscles finally started behaving, but my blood cells did not. I was not allowed to leave the house, except to go to medical appointments, and I could have no visitors except immediate family members.
You needed a bone marrow transplant, and your brother Leason Pomeroy was a match. Can you explain what kind of a process is entailed in a bone marrow transplant, for the donor and the recipient?
I was sent to the world-renowned City of Hope, where I was placed in the care of phenomenally brilliant doctors, who, after several more bone marrow biopsies, determined that I now had another rare and potentially fatal disease called severe aplastic anemia. My bone marrow had “died,” and was unable to produce white cells, red cells or platelets. A bone marrow transplant is always a last resort, so they first tried various drug combinations and Neupogen shots (not recommended for pain pussies like me – wowch!), then more serious treatments including IVIG (intravenous immune globulin) and ATG (antithymocyte globulin – antibodies derived from horses). For the latter, I was hospitalized for what was to be a week, so I could be watched closely for any life-threatening reactions. I liked to think they were watching for a mane and tail to emerge. I ended up staying for seven weeks, due to fungal pneumonia, which was very scary with no white cells to fight it. When I did not respond to any of these attempts at a cure, we moved to my final chance – a bone marrow transplant. The best possible donor match is a sibling, which has a 25% chance of matching. My one sibling, brother Leason, was tested, and he was a near perfect match!
Back to City of Hope I went, where I was given chemo for a week to kill off my own sick bone marrow and my immune system, so I’d be able to welcome Leason’s marrow without rejection. The chemo tore up my mouth and throat, making it impossible to eat, so I was placed on an intravenous diet. I also lost my hair. Leason went through lots of physical testing and preparation for his big donation day. There are two methods for donating: bone marrow taken from the donor’s hip bones, or stem cells taken from a donor’s arm (like donating blood). The doctor decides which method will be used, and for Leason (and about 20% of donors), it was bone marrow from his hips. On transplant day, he arrived at COH early in the morning, and was given general anesthesia. My doctor made six small holes in his rear hip bones, and drew out about a quart of marrow. The marrow was then taken to the lab and processed. By about 3:00 p.m., he was discharged and wheeled into my room, joined by my entire haz/mat-outfitted family, to witness his miraculous marrow enter my body via the PICC line in my upper arm. No pain for me! Leason said it felt like he’d been kicked in the butt really hard for about a week after, but then he was back to normal and his marrow replenished itself. I stayed another six weeks, until my new marrow cells engrafted and started producing blood cells of their own. I then battled graft vs. host disease (rejection) for about a year post transplant.
Just a little sci-fi for you – my original blood type was 0, and Leason’s is A. I now have type A blood, and I was determined to be male on my 23 and Me test. Oh, and I have two DNAs. ☺
You also needed blood transfusions to stay alive. What is that process like?
While my blood counts were tanking, I had over 100 blood and platelet transfusions to keep me going. Blood transfusions had always sounded like a frightening ordeal, and I never ever thought I would need one. Turns out, they are no big deal, and actually kind of fun. You get to chill for a couple of hours in a big comfy chair, reading or watching tv, while an army of volunteers parade by offering warm blankets and treats. Having an IV placed into your arm isn’t much fun, but I had my PICC line for many of my transfusions, so there was no pain at all. Kinda weird to think I have the blood of 100 strangers cruising through my veins, but I always asked my nurses to make sure my transfused blood was from good looking, highly intelligent donors, so there’s that.
You were in the hospital almost 100 days. What did you do to maintain your strength, positivity and sanity while going thru this experience?
I never made the choice to be positive. I just was. Dying was never in the realm of consideration. To me, it was just an adventure I was on, and one day, I’d return home. I know this sounds really insane, but I actually enjoyed my time in the hospital. Well, except for the scratchy sheets and 4:00am blood draws. I couldn’t read or watch tv, due to the crazy nausea, but I got caught up on napping, and I had fun joking around with my wonderful family, doctors and nurses. Todd and my parents visited every single day, driving up from Orange County, and my kids visited whenever they could. Seeing them come through my door was the highlight of each day. Todd dressed up in a coat and tie, sharing all the cards that had arrived the day before. On the day I had to have my head shaved (into a mohawk), he showed up with his head shaved, too, AND he showed off his new J tattoo on his arm. My parents arrived with incredible homemade games that were plastered all over my walls. One featured famous bald peeps hidden under flaps with clues. If I guessed who was under a flap, I got a charm depicting a wonderful life memory. My chemo brain needed tons of clues ☺ Dad also made a bullseye that was placed across the room from my bed, which featured targets such as “chemo,” “f-ing mouth sores,” and “nausea.” I had a Nerf gun that I could aim at whatever was pissing me off at the time. My doctors and nurses loved shooting my gun, and we put their initials on the target where the spongy bullets landed. My friends came up with a fantastic idea to let me know that the outside world was thinking of me. They made a ribbon garland that spanned my entire room, and hanging from it were hundreds of tags featuring hand written thoughts from friends and family. It is hanging in my home now, and I often look through the incredible words of support that got me through a rough time a few years ago.
Can you tell us about your family, and how they dealt with what had to be a pretty traumatic and trying time? We always wonder how our loved ones will deal if or when a situation may arise.
I wouldn’t have made it through without my family. I really don’t know where they got their strength. Maybe they were so busy taking care of me, they didn’t have time to fall apart. All-star Todd took care of everything. He arranged and drove me to each appointment, sometimes four per day. He took meticulous notes at each appointment, then shared the updates with the doctors on my team. He managed all of my medications – 30 pills per day. He did all the marketing, cooking and household stuff. He did go through a rough patch when I was in the hospital, but his friends came to his rescue and helped him get through it. My parents were also absolutely incredible. They visited every day I was in the hospital. Mom gave me luxurious foot rubs. They were always positive and made me laugh. Mychaela was working at the Walt Disney Company at the time, and would drive a long distance to visit me after work. She knit me a beanie while wearing surgical gloves in my room, so that my bald head didn’t freeze. Rex was in the middle of pledging a fraternity at USC, and he came when he was not required to pick up cigs and JD for the actives ☺ I now know that my family was getting discouraging news/odds from my doctors, but somehow they were always upbeat when they were with me.
Can you recommend any books that may help people get thru times like yours, whether the patient or family and loved ones? Did you rely on any to help guide you or keep your spirits up?
I was too nauseous to think about reading, but when I felt up to it, I spent time writing blog posts, which helped me keep everything about my medical exploits in perspective.
Speaking of books, would you consider writing one about your experience?
Why… yes! I am currently polishing chapter nine. It’s not a serious account of my medical saga (yawn), but instead chronicles my adventures through medical offices, operating rooms, transfusion centers, hospital transplant floors, and victory celebrations, with my Buttkick List items sprinkled throughout – all with a humorous and sometimes profane twist. One of the world’s best-selling authors has somehow agreed to write the foreword. My goal with the book is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness or two. It’s not a done deal yet, but hopefully it will get published one day.
How did the Buttkick List come about? I love that you have done so many adventurous things and you are an inspiration to so many people!
I never really thought about a bucket list, I mean a serious bucket list, before the poo hit the propeller. But after nearly cashing in my chips, that dope feeling of REALLY being alive has become vital to me. I’ve always been somewhat adventurous, but now I have a voracity for experiencing all I can. When my immune system started getting stronger and I was well enough to get out there and live again (2014), I fired up my list. There are some adrenaline inducing items and some entries that are rewarding in a more tranquil way.
I don’t like the term, “bucket list.” I loathe the pressure of having to get it all done by the time I expire. It puts the emphasis on the end, and I’d rather be focused on the now, kicking my new life’s butt today and every day ☺ I would have missed all of this fun if not for my lifesaving bronor (brother + donor) and his magic marrow!
How many adventures initially were on your list, and does it keep growing as you check them off? I’ll list just a few you have completed that are on your instagram @buttkicklist ( head over to see all of her adventures):
Go ice climbing, taste tequila in Tequila, scuba dive in the Persian Gulf, summit Kilimanjaro, go cliff jumping, sky dive, earn a fashion degree, complete a triathlon, run with the bulls, balloon over Cappadocia, start a non-profit, go airplane gliding and more!
My original list had about 50 items on it, but it has swelled to well over 100 now. I am constantly checking off items I’ve done and adding new ones I plan to crush. The official post-transplant Buttkick List can be seen on my blog.
What has been your favorite one to date? Your most challenging?
Naming a favorite is tough, since they all have plastered gigantic smiles on my face. But since you asked, my favorite is probably Running with the Bulls in Pamplona, Spain. On the morning of the run, before the bulls were released onto the course, I looked around at my fellow runners. They were male. They were young. They apparently forgot to pack Arrid Extra Dry. Their eyes locked onto mine, imploring, “What the f are you doing here?” I loved playing the part of menopausal crasher at their testosterone-ified 20-somethings frat club. Sure, it was scary knowing that within a few minutes, I could have a horn in my gut, but I was running with my son, Rex, and we were celebrating two successful transplants: mine and his life-saving stem cell donation to an Italian man the year before. He expertly guided me over the cobblestones, avoiding horns and hooves. Ole!
The most challenging has to be bungy jumping. I couldn’t bring myself to officially add this one to my list, because I knew deep down that there was no possible way I could actually launch myself headfirst over a ledge. I had gone skydiving, but that was different – I was attached to someone else who jumped out of the plane. I was just along for the ride. In 2016, I was in New Zealand checking off items on my list like a madwoman, and right there in the town of Taupo happened to be the world’s highest water touch bungy. I imagined doing it. I imagined the sheer joy I would surely feel if I could do it. I imagined the regret that would surely consume me if I pussied out. I told Todd that I’d like to visit the bungy jump, just so I could see it. I told myself that I would get strapped in and go out on the ledge just to see if I could possibly summon the courage. High above the Waikato River, a superpower came over me as I put my toes over the edge and performed my best swan dive. The 154’ fall took my breath away, and the high bounces were thrilling, knowing I had done it.
You have traveled the world! How many countries have you been to? What are your top 3 favorite cities to visit?
I’ve visited 116 countries, but I have a long way to go before I feel like I’ve seen all I want to see. I adore visiting Paris, Hanoi, New York and Cape Town. Sorry, I know you asked for three, but I couldn’t cut one from the list ☺
Can you tell us about the charity that you and your husband Todd started, Global Grins ? You have distributed over 1,000,000 toothbrushes to orphanages, shelters, schools and other organizations. I love this concept-such a simple daily self-care thing that we all take for granted.
After traveling through many disadvantaged parts of the world, Todd and I knew we wanted to do something to help. He serves on the Board of Trustees for Semester at Sea, along with many inspiring people, like Desmond Tutu, who are doing great things to improve the lives of those in need, and that served as further fuel to set an idea into motion. We decided to do something that was simple, yet would help as many people as possible lead healthier lives. There are billions of people in the world that do not have a toothbrush, and we learned just how important oral health is to overall health. Poor oral health can contribute to diabetes, heart disease, stroke, cancer, Alzheimer’s disease, pregnancy complications, AIDS complications, malnutrition and low self-esteem. And it’s heartbreaking to know that in some countries, toothache is the leading cause of suicide.
Our toothbrushes are made between child and adult size, allowing the vast majority of people to be able to use them. The bristles come in four colors, so a family doesn’t share them, and they have our website printed on the handle, so when they wear out, replacements may be requested.
We set out with the goal of getting as many toothbrushes as possible into the hands of those that need them, both domestically and abroad. We began in 2010 (took a couple of years off for my medical detour), and reached our 1,000,000th toothbrush milestone in 2018.
I love that on your website, people can sign up and you will send a box of 100 toothbrushes that they can donate. That is such a simple and easy thing to do, and would make such a big difference! With all of the traveling people do, whether here in the U.S. or abroad, a small box of toothbrushes is easy to pack and a great lesson to show your children and have them help deliver. Are there any other ways to help?
Yes, our Delivery Squad has thousands of members now. If someone is traveling anywhere for any reason, he or she can request a free box of 100 toothbrushes to take with them for distribution anywhere there is a need. Most of our brushes are delivered to organizations serving people in need, but some Delivery Squaders hand them out while walking through villages or rural areas. It adds a very meaningful dimension to any trip, and the need is everywhere. It gets tourists out of their resort lounge chairs and into areas where they can interact with locals in a significant way. We leave it up to the individuals to decide how and where a delivery will take place. Many return from their travels and shoot us an email letting us know that making the delivery was the highlight of their trip. All we ask in return is a photo of the delivery, if possible, so we can share the experience on our social media, but many send donations as well. The Global Grins Delivery Squad has delivered toothbrushes and smiles to over 100 countries.
We love your home! Can you tell us a little bit about it?
Thank you! My home was designed by my dad, Leason Pomeroy, who is still practicing architecture after more than 50 years. He founded Leason Pomeroy Associates (LPA) in 1965 and went on to design some landmark projects, including Orange County’s John Wayne Airport. His projects reflect the heavy influence Frank Lloyd Wright had on him in the late 1950s, when he hired Mr. Wright to design his fraternity house at ASU, then went on to study under him. He left his firm to pursue more personal projects, and my house was one of his first. I absolutely loved working with him on the house. My amazing husband, Todd, trusted us with the design, and just requested a few things: a koi pond, an aquarium, and a garage large enough to house his toys. Design meetings with Dad were a blast and our creativity flowed wildly. It’s been 21 years now, and it’s beginning to show a little wear, but there is still no place I’d rather call home. I’m so fortunate to live every day in a sculpture lovingly created by my dad.
You have some amazing collections…where do you get them and how did you start? I could spend the day looking thru them all!
Thanks for appreciating what many would consider junk ☺ My parents have always been collectors of interesting vintage things (wind-up toys, Santa Clauses, fly fishing reels, marbles and many more), so I was indoctrinated at an early age. When I was about eight, they told me to pick something to collect – probably to keep me busy and get me to stop whining whenever we entered an antique store. For some reason, I picked whistles. I know. Weird. I am the proud owner of about 200 different whistles that I’ve collected over the years. That collection spawned many more collections, including vintage sand pails and shovels, vintage Laguna Beach memorabilia, fishbowl figurines, Hawaiiana, vintage toy telephones, vintage kiddie rings, vintage Pez, vintage airline wings, vintage ray guns, and more. Most of it has been found at flea markets, which I have been attending, my old lady cart in tow, for the past 25 years. Some people get it, and some probably think it’s kind of an illness, this collecting thing.
What is your favorite theme to collect?
My favorite collection is probably my lunchboxes and thermoses – all from 1960s and 1970s tv shows. I spent a massive chunk of my childhood with my eyes glued to our Motorola. I was planning to marry David Cassidy. One of the first things my dad made sure he included in my house was a proper shelf for my lunchboxes. They ring my kitchen, so I can reminisce with the Flying Nun, the Beverly Hillbillies, Lidsville, the Jetsons, Adam-12, the Munsters, the Brady Bunch and the Partridge Family whenever I’m scrambling eggs.
You are an amazing painter! Did you study painting?
Thank you very much! I LOVE painting. I’ve taken lots of fine art classes at local community colleges over the years, and just dabbled in it, until I got serious a couple of years ago. Todd, gave me the most rad Christmas present – lessons with three painters I greatly admired. One of them was an 82-year-old celebrated artist that we had purchased a couple of paintings from. No idea how he pulled that off. I adore his work. It is playful and colorful – brings a smile to your face! I really don’t dig serious or depressing art. I was so nervous when I went for my first lesson. He’s a master with works in every major museum in the country. Why is he wasting his time with a nobody like me? I still pinch myself, two years later, as we’re lobbing playful f- bombs back and forth during my critiques. Studying under him has been a dream.
I see that you have clothing patterns-did you have your own line?
Ya, my studio has SO much stuff crammed into every nook and cranny. Those paint-splattered patterns are mostly from my years at FIDM, but I still use them when I feel like whipping up a dress for a certain occasion, so I can’t dump them. I was planning to launch a line before I got sick, but once I came out of that episode, my priorities shifted. I no longer wanted to delve into the fashion world, because I knew that would have become my life’s focus. I wanted to surround myself with those special to me, and I had so many other things I wanted to do with my remaining time.
Thank-you for taking the time to visit with AOBF! You’re an inspiration…
https://joselynsbrawl.com/bucketlist/
IG: @buttkicklist