Welcome to my CaringBridge website. Thank you very much for visiting.
After battling for years Chronic Lyme Disease, I was diagnosed, age 39, of Breast Cancer [BRCA2 positive] during St. Agatha of Sicily - The Patron Saint of Breast Cancer Festival (2011). I sought immediate help after a Miraculous Dream: A giant lady warned me to get my breasts checked sometime on the eve of Martin Luther King, Jr. Day into the early morning, on January 18th. It's really wild when I look back to that moment of waking up ... I talk a lot in my journal of what I experienced along the way, in bits and pieces. If you wish to read more about all of it, please go back to my Journal's beginnings. They were really something. Thank you very much for reading and especially, if you were there, a part of my life, at that time. The specifics of my tumors (for those who maybe interested): I had Invasive Lobular Carcinoma (2.0 cm), multifocal, grade 3 (high grade); Lobular Carcinoma in Situ (5.2 cm); Ductal Carcinoma in Situ (2.8 cm), grade 3 (high grade); lymphatic vessel invasion, mets 1/1 sentinel node (cancer had spread to the lymph nodes); ER+/PR+, HER2-; high Ki-67 indicative of aggressive tumors.
Days after my final diagnosis from Cedars-Sinai (the morning after Valentine's Day), I had a Lumpectomy performed at Pink Lotus Breast Center. This was the place that I strongly believe I was led to... Following, I had a Chemo Port inserted at Cedars. Underwent six months of chemo treatments (4 cycles of Taxol and 4 cycles of Adriamycin and Cytoxan) at Tower Hematology Oncology (from March 2011 to August 2011). That was a tough time. I'll never forget it, the good, the bad, the ugly... I began my first cycle of chemotherapy when the big earthquake, tsunami, and nuclear meltdown hit in Japan. It was so very tragic, all of it. My Port was finally removed after chemo, after a blood clot that my dog sniffed out first! Then after receiving Lovenox injections, I had the big one, a Bilateral Skin-Sparing Mastectomy (NAC preservation) with Breast Reconstruction Phase I (Sept. 2011) and Breast Reconstruction Phase II (June 2012) - both at Saint John's Health Center in Santa Monica. In between all that with having more lymph nodes removed (19?), I had my first Colonoscopy, continued with Antibiotic and Hormone Therapy (Lupron injections and Femara). Also, a skin tumor was removed at Westside Surgery Center (2015) in Santa Monica, followed by Bilateral Strabismus Repair Surgery at California Pacific Medical Center in San Francisco -- to correct my long battle with double vision (2015), a second eye muscle surgery to further keep it from reoccurring (2016), and a third strabismus surgery (2017) - all while awake. After my markers for Ovarian Cancer rose into abnormal, I had another surgery at Cedars (day before Valentine's Day), a Complete Hysterectomy with Salpingo-Oophorectomy. My cancer evaluation was done through the belly button. Thankfully, no cancer was visibly seen ... But because of being BRCA+, to reduce my high cancer risk further yet, my ovaries and tubes were removed, along with my uterus and cervix, 9" bikini incision. My surgeon said my pathology report was the largest report that she has ever seen of benign tumors (largest - 11 cm). After reading the findings, I was very grateful that I had surgery when I did. With all my chronic inflammation, multiple huge fibroids, my pattern associated with endometriosis, my age, and high risk cancer gene, I had a perfect breeding ground for cancer to begin at any time. I had my surgery at high time -- performed at age 42, 7 yrs. past the new guidelines for BRCA carriers. Even after surgery, though, I still have a small risk of getting ovarian cancer, but it did reduce my overall risk. Interesting, one type of cyst (paratubal serous cyst, hydatid of Morgagni) is found in one-third of Italian women. Sadly these cysts may give rise to borderline malignancies and may attribute to pregnancy loss and miscarriages.
So far, I've had 11 surgeries all together on the journey... And I've lost track of all the rest. It's a lot!
I'm deeply touched by the empathy, concern, respect, and care of my Healthcare Team.
- Surgical Breast Specialist. Founder & Director of Pink Lotus Breast Center: Kristi M. Funk MD FACS, Surgery Coordinator Lilly Garzona, Heather Onnigian, & Staff: Jacqueline, Jamie...
- Oncologist. Clinical Professor of Medicine: Robert W. Decker MD & Staff: Estelle...
- Pathologists: Farnaz Dadmanesh MD; Richard B Mertens MD, Assistant Monica R Phillips MD
- Anesthesiologist: Pamela Starnes MD, Michael Wallace MD
- Reconstructive Breast Surgeon. Founder of Koan Center: Chia Chi Kao MD, Medical Staff: Kelly Mulligan, Zamora Archuleta Clinic Nurse, Sandy Ferreri RN, Anna Gudino
- Power Port: Dr. Doran Kim
- Internal Medicine. Director Malibu Hyperbarics Medical Center: Ralph Potkin MD FACP FCCP & Staff...RN: Katrina, Laura
- Gynecologic Oncologist-Surgeon: Dr. Bobbie Rimel; Medical Team - Dr. Andrew Li, Dr. Susan Park, Dr. Jennifer Chue, Dr. Yalda Afshar, Recovery: Kathleen Caparossa
- Anesthesiologist: Maria Angelica De Castro
- Surgical Pathologist: Denise A. Barbato MD, Assis. Susan J. Parson MD
- Cytopathology Report Pathologist: Shikha Bose MD, Cytotech - Helen Evans CT (ASCP)
- GYN: Nancy Goldman MD, Ronald Leuchter MD, & Staff
-Dr. Joel Feinstein, Gastrointestinalist; Sylvia - Staff
- Family Doctor: Dr. Jeff Harris & Heather - Staff
-Dr. Barry Ludwig, Neurologist; Anna - Staff
- Colon & Rectal Surgeon: Beth A Moore MD FACS & Staff
- Neuro-Ophthalmologist: Swaraj Bose MD & assistant Donna
- Daniel Rovner MD & Staff
- Genetic Counselor: Ora Gordon MD, Tali Geva.
- Clinical Trials: Hayley Russ, PhD, Beth Karlan, MD
- Eye Medical Trial: Dr. Alan B. Scott, Dr. Ken Danh
- Eye Surgeon (Bilateral Strabismus Repair): Dr. Alan B. Scott, Pre-op Nurse, Post-op RN Marina, OR Nurse Jennifer, Cede, and Mike V, secretary Amilene
- Dr. Brackmann, ENT-otolaryngologist; Staff
- ONC Nurse: Marylou Ehret RN
- NP: Mary Grace, Angela, Paige Woodward
- Lymphedema Therapist: Jenni Nicolla, Women's Physical Therapy
-Sirach Acupuncture. Sung C. Cho L.Ac, Dipl.Ac.
- Nutritionist: Jody
- Dentist: Izabella Kolodner DDS & Staff
- Dermatologist: Gene Rubinstein MD & Staff
- Doggie Daycare: VCA Kennel Club Resort & Spa - Karen & Friends
- My Husband & my boy Sonny. My Parents. Family & Friends: Endless!
They bring out the best in me and have given me a good reason to keep the faith going strong. My breast cancer began growing under the radar shortly after toxic dust exposure from 9/11 in NYC, acc. to my breast cancer surgeon. I had lived directly across from the WTC towers, across the Hudson River, in Jersey City. I traveled into Manhattan almost daily, and lived shortly after this monstrous tragedy in Lower East Side. It was a very scary and emotional time. Also, I grew up near our country's first big nuclear power plant. I read online there was a "secret fallout" during that time in history when I was born (March 1971). Biggest infant deaths in my hometown and around the area. [Please research: "Shippingport Fallout"] It is a big shame that we weren't warned, especially all within a 30 mile radius. 50x greater than the typical levels of a world fallout, and equivalent to the levels of nuclear bomb sites like out in Nevada ... Extremely high readings ... in our waters, rivers, fish, soil, milk ... contaminated with cesium 137, strontium 90, iodine 131. My dad even reminded me of all the steel mills and what was dumped into the Ohio River on a weekly basis. We were all exposed to toxins 100s of 1,000s x the state and federal limits. Furthermore, two days after my 8th Birthday, there was the Three Mile Island Meltdown. Some of the other things that may have contributed to my diagnosis ... Lyme disease, a chronic autoimmune illness. Quite a few times venturing out to Long Island ... not far from Plum Island where the deadliest germs on the planet are ... I discovered that later, of course. But one can acquire it anywhere now on the face on the earth. There was a thing, too, that I read about push-up bras having formaldehyde in it ... So, I threw out dozens of my bras and mostly now go braless. I'm a very free soul (haha, but seriously).
What may contributed to my breast cancer as well is -- well, stress, big city living for a long time. The fall of 2015 became our 7th move in California ~ Los Angeles, matching the moves in New York City, and my 29th move in my lifetime. (I grew up in Aliquippa, Pennsylvania "Chapel Valley", a valley girl, and went to school for Fine Art at Edinboro University. After graduating, I lived in North and South Carolinas, Florida, and Arizona ... worked a lot of really nice odd jobs, until I began modeling for a good decade.) Not to mention, the stress, beyond all the moving, of managing breast cancer and chronic illnesses, and suffering many heartaches. I've overcome quite a bit, but I still struggle with constant ringing in the ears and this I have accepted. I just turn the music on. Crank it up! (What other stuff...) There was living super close to airports all my life .... power lines ... growing up in the plastic revolution. Just tons of chemical, biological, and other bad stuff that we're all exposed to on a day to day basis ... art, beauty, cleaning products and so on and so on. Our air is not the healthiest either here at the Port of Los Angeles and not the safest. We are nearby to a oil refinery, too. They continue to spray a lot on us ~ stuff in question. And what about our food... pesticides...
Prior to my cancer diagnosis, besides Chronic Lyme Disease, I was diagnosed with: Rheumatoid Arthritis, Chronic Fatigue Syndrome, Microscopic Hematuria, Vitamin D Deficiency, Fibroids, Cysts, and Migraines. Following my diagnosis with: Phlebitis • Thrombophlebitis (blood clot), Chronic Sinusitis, Sixth Cranial Nerve Palsies, Diplopia, Tinnitus, Rotator Cuff Syndrome, Lymphedema, Heavy Metals Toxicities (Lead, Gadolinium, Cesium, Uranium, Thallium), Elevated Ammonia and B12, Low Iodine, Magnesium Deficiency, Vitamin D Deficiency, Hypothyroidism (mild), Benign Liver Tumors ~right lobe (2013) & left lobe (2017), Dermatofibroma (possibly due to chronic Arsenic exposure from Dr. Paul Dantzig's research ... had it removed less than a year later and acc. to that study, reduced my breast cancer risk/recurrence by 60%), Petechiae (Levaquin), Cherry Angiomas (very likely due to iodine defeciency and bromine toxicity, treated not long after), Benign Breast Tumors (3 total), Hematoma (not fully healed since Feb. 2014, weird), Lyme, again, plus B.henselae-Mycoplasma co-infections, which I'm told that so many of us, almost all of us have by now. Oh, and developed Hypothyroidism (taking Nature-Throid) and learned of a rare inner right ear abnormality that I have... All in all, most have been successfully treated by my doctors and me ~ working exceptionally hard at overcoming it all; but I still suffer since 2012 in ways, especially from severe Tinnitus. To tell you the truth, I need a vacation! This has consumed all of me ... surviving.
I recommend to all my relatives to take MTHFR DNA Test A1298C and through my father's bloodline to take Single site BRACAnalysis: BRCA2 sequencing 8525delC.
For more info: Myriad Tests
This is a long term project as BRCA2 increases risk for cancers beyond breast/ovarian/fallopian tube: pancreatic, colon, malignant melanoma, etc.
Even though the BRCA2 [8525delC] ethnicity is still listed "unknown" by many well known organizations, including the American Medical Association (JAMA, Vol. 294, No. 15) -- that same deletion (of hereditary early onset male and female breast cancer, ovarian, and prostrate cancer) -- (in studies) has been found to run in a few families of the Irish (West of Ireland) and French descent. On the OMIM [Online Mendelian Inheritance in Man] Website -- lists 8525delC as "French". The organization was initiated by Dr. Victor A. McKusick in the early 1960s and created in 1985 by the National Library of Medicine and the William H. Welch Medical Library at Johns Hopkins. A decade later, it was developed for the World Wide Web by NCBI [National Center for Biotechnology Information], and authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, under the direction of Dr. Ada Hamosh. It is an authoritative compendium of human genes and genetic phenotypes that is free and updated daily. It contains information on all known disorders and over 12,000 genes.
My father, who tested positive for 8525delC, was diagnosed with prostrate cancer in 2002 at age 64, after his triple bypass (open heart), a double hernia, and gallbladder operations. He had radioactive seed implantation on the prostrate, recommended by his doctor who got it, too. He was in severe burning pain every second for a year and a half, and said, "I was praying to the Rain Gods everyday to take it away!" My father's PSA levels have been low (less than 1) since treatment, 14 years and counting. Also, he was successfully treated for skin cancer in 2012. He has no strong health advice on his survivorship, just do whatever you have to do, keep your mind thinking and your body going, and be happy. For him, it's still being able to drink his beers daily! Both of us feel that the BRCA2 gene runs through his mother Pearl's side, who passed away of breast and gynecological cancers before Thanksgiving 1998. Her doctor never tested her for the BRCA gene. Perhaps, her treatment would have been more aggressive, and she would have survived longer. Her mother, Grace Lowe, died in her early 40s, what we suspect ovarian cancer. (At that time, the family was told -- dropsy ((massive fluid buildup in the abdomen)), but may have been very likely ovarian dropsy from ovarian cancer.
[If anyone is interested further in my family's genetics, what I have discovered along the way, please see the very end. Thanks!] To continue on.... I have been a participant in cancer programs and various other medical studies since 2012: I'm a participant in Cedars-Sinai Gilda Radner Hereditary Cancer Program and Novel Markers Trial, Cedars-Sinai's Tissue Bank Study, Love/Avon Army of Women's breast cancer and uterine cancer studies, Young Women's Health History Study (The study team includes researchers from Michigan State University, Keck School of Medicine USC, Wayne State University/School of Medicine, plus an advisory committee of breast cancer advocates, as well as scientific advisors from the National Institutes of Health, the American Cancer Society, and Boston University), and University of California San Diego "Fluoroquinolone Effects Study". I, also, had enrolled in an eye medical study headed by Dr. Alan B. Scott ("The Father of Botox") in San Francisco. Since April 2012, I suffered with progressing, daily double vision -- "cross-eyed", esotropia (and exotropia just for a short duration.) I have needed a new eye prescription/prism every 4-6 weeks (and the back thought of breast cancer metastasizing to the brain). My eyesight was restored to normal after participating in this eye study "The Bupivacaine Project" in August 2014 (my first two injections of Botox). That was the most incredible day ever! But it returned to seeing double 2 months later (to prism 20). After my second - four big injections into my eye muscles with Botox and Bupivacaine, my single vision was restored, once again. My eyes felt stronger yet! However, my double vision returned slowly to seeing double, again, in May 2015. I was not a part of the greater success of the trial, seeing normal for at least 4-5 years. The only solution left to correct the 3.5 year long double vision was eye muscle repair surgery on both eyes. It was a success to the end of the year. Then, my double vision began slowly returning. It was corrected a second time with eye muscle repair surgery in May of 2016, five times all together, three strabismus surgeries with six injections in three years time. By the end of 2016, my double vision slowly returned. I had a third surgery in March 2017. By this time, five years later from when my double vision began, no one can tell of my eye condition, as my eyes are currently tracking together well. The treatment has really helped phenomenally with my eye alignment.
My artwork "Sands Beyond Time" and "The Hope in Me" have been traveling throughout 2013 and 2015 in cancer art exhibitions, over 400 cancer centers, hospitals, patient advocacy events throughout US and Puerto Rico, presented by Lilly USA, LLC, NCCS; also incl. in Lilly Oncology 2012 and 2014 Art Books. I took part in our nation's first art exhibit on Lyme disease [Ticked Off Art 2014, Maple Grove Art Center] and donated my work "Eye Imagine (a World as One)" to the Minnesota Lyme Association. At the time, I was imagining to see one (image) and here I am! A Miracle! I was given a slim chance to come back, but did with the help of a few Angels. I honored my nurse, Marylou Ehret, in an essay, which was selected for the sixth volume of Extraordinary Healers: CURE Readers Honor Oncology Nurses. Chapter 4: Life & Laughter; as well as featured in the Spring 2013 ed. of CURE magazine. And given the gift of my artwork "Reach for the Cure", a token of my appreciation to my oncologist Dr. Decker. Even though, he deserves much more for giving me years on my life! I couldn't have fought this eating organic food alone. Too twice, I was featured in Women's Health Magazine - "Surviving Breast Cancer: Living With Cancer (http://www.womenshealthmag.com/health/breast-cancer-survivors
All in all, I've managed side effects from my treatments (Taxol, Adriamycin, Cytoxan, Lupron, Femara) to my best ability through alternative medicines, nutrition, exercise, meditation, and therapy (dreamwork, past-life regression, art, poetry, pet, journaling). In my first year of diagnosis, I ran into some complications. On Memorial Day and Christmas, I was admitted into the ER with complications. Severely hemorrhaged on my last cycle of Taxol, developed a blood clot on my last cycle of A/C (as I had mentioned prior... Lucky me, my dog sniffed out first before I sensed it!) and got left arm lymphedema (no cure, less than 30% breast cancer patients acquire lifelong; now it's managed-), chronic double vision (no more after years!) and tinnitus after my 4th Lupron shot (8 months after my last chemo treatment), overnight chemical menopause and surgical menopause (ages 40-42), chelated from heavy metal toxicities, and relapsed with Lyme Disease before and after my double mastectomy and reconstruction phase I and II. I still have pretty bad flare-ups, but I do get it under control by the Love of God. Overall, I have been following western and eastern medical philosophies for healing. It's been a tough cookie, but I just take it day by day. And some days are much better than others!
I married my sweetheart on Patron Saint of Breast Cancer Day (2013) after a 2-year postponement. A day that I will never forget! I had severe double vision ~ partially cross-eyed (yeah, stinks on your big day!), and my hair was just starting to growing back after chemo... (I donated 14" of my hair before chemo to Charity.) My sweetie made me feel so beautiful through it all, though; pretty fortunate. We met in the heart of NYC back in late fall of 2004 on the "Breaking Vegas" set and experienced so much together. He has been so supportive through all my changes. He came with me to all my chemo treatments, hospital stays ... through many surgeries ... Everywhere! He's my Rock, and I am really blessed. I could not imagine doing this alone. I lost two cousins to cancer during my battle, and that was so hard to get through mentally. I had learned a lot through the breast cancer battle; especially how to let go of my pride and not shut myself off from friends and family. I realized that I was not able to resolve these problems on my own and let others see my weaknesses; guide me through troubled times, which was not easy. My school friends (Nicole Betters and Marcie Guiterrez), from my hometown started a Website - Time to Lend a Hand. I'm humbly grateful for their love and support in the money they raised in the very beginning of my breast cancer battle and to those generous souls who gave from the heart ... much love ... and also, much love ... to my husband's colleagues in the TV commercial industry, too, and all my family's support in my breast cancer survivorship. It's still a really big struggle, though, to say the very least, and I hope that I can return all the Love back, if I hadn't already. I have been very fortunate that my parents could come stay and help during my big surgeries; and equally blessed from other loved ones to get house visits, phone calls, greeting cards, letters, gifts, photographs, and emails.
A BIG Thanks for reading My Story! I hope it wasn't too painful to get through (haha). I'm not really good at writing about my health in such great details, but it has been very healing. I, also, write poetry that you can find online under "Sonya Rose Poetry". And besides making art, I create a lot of videos of variety that you can catch on YouTube: "sonyarose8" and "sonyarosepoetry". My past portfolio of work is found on my website - http://www.sonyarose.com ...
I hope to update it soon and share *new stuff*! I reinstated my union membership with SAG-AFTRA and already had a few acting jobs. I've been hit pretty hard with my health and I'm just beginning to see the Light. I couldn't be more fortunate to be here. Experience Life and share some of it... Get Mommy Bear hugs from my sweet Sonny ~ kisses from my sweetie. Have a great day, a great night, everyone! May peace and blessings fill you always~
For those interested... I made a recent discovery with our family's Ancient DNA, my mtDNA, [X2b] from my mother's mother side of the family: X2b is connected to the Iron Age “princely burials” from Baden-Württemberg, Germany [Late Hallstatt and Early Latene societies]. The study was supported by the Graduate School "Human Development in Landscapes" of Christian-Albrechts-University of Kiel. Bone specimens of thirty-eight skeletal remains were collected from five sites [Asperg Grafenbühl, Mühlacker Heidenwäldle, Hirschlanden, Ludwigsburg, and Schodeingen] and DNA was extracted for ancient DNA analysis. The researchers obtained mitochondrial DNA from seventeen individuals that showed nine different haplogroups including -- X2b. This Haplogroup goes way back, over 15,000 years (group X itself possibly goes back all together 45,000 years) and wraps all the way around the world from Scotland to Morocco and eastward to Siberia and even into North America. In Jean Manco's excellent compendium, X2b is also listed as being present in Neolithic Portugal (3,400 years BC), and the highest percentage of people with X2b in the present day are from the Galilee region of northern Israel.
My dad's mtDNA (Maternal) is H3 and maybe greater than 15,000 years and found in Spanish (Galician) and Basques populations. They created magnificent cave paintings from Altamira (Spain) and Lascaux (France). That must be where my artist side comes from. I left one artwork "Together in Spirit" that resembled cave work (three horses running together) in NYC, hanging in a studio. I believe my father's mother's family line followed the path up the Atlantic seaboard after the Ice Age to present-day France and the British Isles. It's possible, as I may have mentioned before, that the BRCA2 gene really came from my grandmother's mother side of the family. She had a very Jewish last name. During the late Middle Ages, the Jews of Spain were forced to convert to be a Catholic or Christian, or flee. After Judaism was outlawed in Spain in 1492 and Jews were expelled, some of those who stayed took their beliefs underground ... Maintained their faith in secret and went as far as the New World.
Oh, I get so deep into this ... I almost forget the Kings and Queens who had the same mtDNA of my dad -- H3: Here we go ...Queen of Denmark: Wolfenbüttel (1729-1796) => H3 (mtDNA). Emperors & Empress of Austria: Maria Theresa (1717-1780) => H3 (mtDNA), Joseph II (1741-1790) => H3 (mtDNA), Ferdinand I (1793-1875) => H3 (mtDNA), Charles I (1887-1922) => H (mtDNA), Leopold II of Habsburg (1747-1792) => H3 (mtDNA). Kings of Saxony: Frederick Augustus II (1797-1854) => H3 (mtDNA), John I (1801-1873) => H3 (mtDNA). Kings of the Netherlands & Grand Duke of Luxembourg: William I (1772-1843) => H3 (mtDNA), Marie-Louise of France (1812-1850) => H3 (mtDNA), Marie-Antoinette (1755-1793) => H3 (mtDNA), Louis XVII (1785-1795) => R1b-Z381 (Y-DNA) H3 (mtDNA). Marie Louise of Austria (1791-1847) => H3 (mtDNA). Kings & Queens of the French: Maria Amalia of the Two Sicilies (1782-1866) => H3 (mtDNA). Kings of Italy: Victor Emmanuel II (1820-1878) => H3 (mtDNA), Maria Christina of the Two Sicilies (1779–1849) => H3 (mtDNA), Maria Theresa of Tuscany (1801-1855) => H3 (mtDNA), Maria Josepha of Saxony (1803-1829) => H3 (mtDNA). Emperors & Empress of Brazil: Maria Leopoldina of Austria (1797-1826) => H3 (mtDNA). Emperors & Empress of Mexico: Charlotte of Belgium (1840-1927) => H3 (mtDNA). Tsars & Empress of Russia: Peter II (1715-1730) => H3 (mtDNA).
Well, this is overwhelming.
My mom said, "But why was your dad so poor growing up?" All one needs to do is look under the rug of our nation's history. One theory of mine ... is some families in his bloodline were brutally killed or fled or kidnapped (separated from each other) centuries ago, and put on slave ships heading for America (Virginia). I read about it once in a book called "White Cargo" by two journalists - Don Jordan and Michael Walsh, and I, also, experienced many dreams since age 5 to currently to believe this is true.
All in all, it's quite a journey, the long road to healing ... exploring and making discoveries.