Project Apollo was launched by a group of patients with complex, chronic, undiagnosed or other difficult medical conditions. Sharing our stories is an important part of developing our community. Each of us had overcome significant challenges – with our health and with the healthcare system. We urgently wanted to better understand our conditions and to make the healing path smoother for others.
Here are some of our stories
Tyler Orion
Although I had a long career supporting early-stage science and technology entrepreneurs, I spent the first half of my life as a professional dancer. My identity is very closely tied to my ability to stand and move in space. In 2007 – literally overnight –my legs seemed to stop working – and I needed to consciously command them just to walk. And, along with a growing list of autoimmune symptoms, the muscles in my lower legs began to soften and shrink.
So I took early retirement and began a diagnostic odyssey. I saw rheumatologists and neurologists – underwent 4 spinal surgeries, and was privileged to be a patient of muscle specialists at the NIH. Along the way, many possible – and scary – diagnoses were considered, tested, and abandoned. As it turns out, although I’m not officially diagnosed, I likely have a form of adult-onset muscular dystrophy, complicated by spinal stenosis.
Along the way, I discovered I had several genetic mutations as well as some specific blood markers which are implicated in degenerative muscle diseases, but the mutations are not yet well-studied, so there’s a lot that researchers don’t yet know. The biggest challenge during my diagnostic quest was finding doctors who would listen and respect the fact that I really know my own body. I have a great team now, but it took a lot of “selection” to get here.
Through Larry Smarr, I was introduced to Dr. Kurisu, and I’m bringing to Precision Healthcare Ecosystem & Project Apollo an eclectic ‘basket of skills,’ includes a career in incubating, launching, and managing both non-profit and technology-based companies, and an MBA in Health Services Management. I’ve also learned to navigate our fragmented healthcare system. But having gotten to this point in my life, I very much want to help other patients – the quest for a proper diagnosis should not be this daunting. And as a patient, I’m a work-in-progress, and I am committed to deepening my understanding of my own condition and exploring possible healing options.
Janice O’Connor
In 2010, after a radiofrequency ablation to relieve chronic pain and migraines, I felt a bolt of lightning go from my neck into my right shoulder. My right arm went completely numb. Suddenly, I couldn’t move my arm and the paralysis spread through the right side of my body.
I transferred to the ER as a stroke victim. Multiple scans of my head revealed no evidence of a stroke. However, I knew the problem was in my neck. I kept telling the doctors to scan my neck. I was lucid. I was speaking clearly, but they wouldn’t listen to me. Instead, they repeated the MRI of my brain. After 8 hours of insisting, they finally scanned my neck. The scan revealed multiple air emboli entered at C4 and came to rest at C1.
I thought I was in trouble here, but I knew my diaphragm was intact. I knew I was going to survive. I needed hyperbarics.
I immediately said, “You’ve got to get me into a hyperbaric chamber. “How would you know that?” they said. I knew it because I am a certified diver. The way to get rid of emboli is in a hyperbaric chamber.
My daughter, an ICU nurse, asked for a prognosis and was told, “What you see is what you get.” I felt insulted. He should have said, “I don’t know.”
I knew I needed hyperbaric. I immediately said, “You’ve got to get me into a hyperbaric chamber. “How would you know that?” they said. I knew it because I am a certified diver. The way to get rid of emboli is in a hyperbaric chamber.
I immediately said, “You’ve got to get me into a hyperbaric chamber. “How would you know that?” they said. I knew it because I am a certified diver. The way to get rid of emboli is in a hyperbaric chamber.
My daughter, an ICU nurse, asked for a prognosis and was told, “What you see is what you get.” I felt insulted. He should have said, “I don’t know.”
I lay there for 24 hours before I was transferred to a sister hospital with a hyperbaric chamber. A week of dive treatments worked. I could move my right leg and arm.
After 8 days in the ICU and 5 weeks as an inpatient at a rehab facility, I could walk with a cane. However, from those first days and through the first five months of traditional rehab, I was told that spinal cord injury victims plateau at 18 months.
Then I began seeing Dr. Kurisu for osteopathic treatment. He helped me understand there are no limits to my recovery. I see Dr. Kurisu twice a month and Dr. Mignosa once a week. In addition, I go to VIP neuro-rehab twice a week. I am always working on rebuilding myself. These ongoing treatments, neuro rehab, and the incredible support and learning of being in Project Apollo keep me healthy and improving.
Blessings came from this injury. It helped reunite my family. It brought me into contact with many amazing practitioners. After 12 years of hard work, I’m still regaining strength and sensation. I’m part of Project Apollo because this is where doctors listen, patients connect, and hope resides.
I’m here today to tell you that I’m still standing. I also want to share a special song that tells my story. It was created by that Rachelle Babler for her Advocating Through Music Project™ project.
Dennis O’Connor
I’m here because I’m Janice’s husband and primary caregiver. We’ve been married for 42 years. We’ve been through the fire together. Surviving together, we are stronger now than we’ve ever been.
In 2009 I had Prostate cancer. Thanks to the incredible skills of Dr. Christopher Kane the robotic surgery was a success.
In 2010 I was rebuilding myself when Jan’s spinal cord injury shattered my reality. I was dislocated and lost but found the focus to care for her and our family.
In 2012, we were coping. Jan was making remarkable progress with Dr. Kurisu, but I was stressed out, overweight, and overworked. My thinking was clouded by denial and depression.
I had the classic symptoms. I was short of breath. My jaw kept aching. My thinking was fuzzy. I was overwhelmed. Eventually, I went to see a local doctor I didn’t know. He ordered nitro tabs and arranged for a stress test the following day. Even then I kept thinking this isn’t anything. This will go away.
I failed my running stress test. I just couldn’t get my heart rate high enough. I was told to wait a week and return for another try. I sat in the office exhausted. There was a problem with insurance that stalled the appointment. Janice worked with the office staff as I sat there, feeling terrible. The time dragged. 45 minutes later I’m still there, unable to stand, decompensating. I remember being put on a gurney and wheeled across the street. During an exploratory angioplasty, I had an MI and received two stents. I had a 95% blockage. The time bomb went off.
As it turned out, this was a great way to have a heart attack. Surgeons on hand to place the stents minimized the damage to my heart. I spent 3 days in the hospital. I was briefly counseled on health and nutrition. I was given a handout on nutrition to take with me.
One of the doctors told me I was a lucky guy, “You can be healthy again. Diet and exercise and the right medication will bring you back 100%.”
I said, “Okay that’s what I’m going to do. I am really going to change.”
One of the doctors, a big man leaning against the wall with his arms crossed, suddenly said, “Bullshit! I know guys like you! You’ll be back in a year for more stents!”
I was furious and really motivated to change. I’d show him. I was going to get better. But my idea of rehab was pushing a wheelbarrow full of rocks uphill. I’d consistently ignored good advice on diet and exercise for so long, I really was clueless.
Janice, a long-time patient of Dr. Kurisu asked him for help. Mike referred me to Dr. Mimi Guarneri a world-class cardiologist with a passion for prevention and integrative health. I met Mimi and entered her lifestyle change program at Scripps. (Scripps no longer offers a lifestyle change program. Dr. Guarneri continues her great work at Pacific Pearl in La Jolla. Seeing her remains a joy. )
The lifestyle change program taught me how to heal myself. It was three months of transformation. We met three times a week. I put everything I had into the program and it worked so well. It truly changed me for life.
- I learned about integrative medicine.
- I learned to meditate and practice mindfulness-based stress reduction.
- I learned yoga.
- I exercised and lost weight.
- I became a vegetarian.
- I attended support groups that lasted for years after I graduated.
The program also helped me overcome my denial about cancer. I’d skipped the follow-up treatments for my 2009 surgery. I went for the tests. I learned the cancer was back. I took radiation treatments. Mindfulness-based stress reduction meditation, a healthy diet, community support, and exercise made the treatments a complete success.
All these years later I’m still living what I learned.
- Today I’m cancer-free.
- Today the wellness habits I learned are still in place.
- Today I stand by the love of my life.
- Today I am part of Project Apollo and working with Precision Healthcare Ecosystem to help others find their way to health.
I am very grateful to be alive!
Jennifer York, MSN, MSRS, RN
I’m a Breast Cancer Survivor and Lyme patient passionate about studying quality of life and fatigue issues in myself and others living with chronic diseases.
A large mass began to grow during pregnancy, and a biopsy suggested that it was a giant fibroadenoma of the breast, with less than a 1% chance that it could be cancer. After the baby was born, I had a lumpectomy and discovered that it was a rare form of stage 3 cancer called a malignant phyllodes tumor.
Aggressive chemotherapy was suggested, but with very little data available about whether or not it would help me, I researched additional treatment options. I learned about precision cancer therapies and became determined to find a way to obtain a liquid biopsy, analyze the molecular makeup of the tumor, and to design a personalized cancer treatment with targeted and immunotherapies to precisely treat my cancer if it recurs.
I searched the country and went for consultations at a variety of the country’s top Universities. Right here in my backyard was the program I was seeking. The Rare Tumor Clinic within UCSD Moore’s Cancer offers an Experimental Therapeutics program featuring personalized oncology approaches to treating cancer.
A molecular analysis was conducted on my blood and primary tumor, and a precise cancer treatment containing a 2-3 combo immunotherapy/targeted therapy regimen was designed from 4.5 million potential treatment combinations. I have been in remission for almost 3 years, but if I have a recurrence, I’ll be enrolled in a Phase 1 Clinical Trial and pursue this personalized cancer therapy approach to treat the cancer.
While searching for this treatment option, I had experienced strong feelings of “fear or recurrence.” Through Project Apollo, I obtained a wearable device called Oura ring to self-track elements of my health including sleep, physical activity, and stress. I enrolled in a 6-week Mindfulness-based Stress Reduction Course. through UCSD Center for Mindfulness. I observed through subjective and objective data, a significant decrease in my stress levels. There was also a clear trend in increased Heart Rate Variability (HRV) through my Oura data. I felt less anxious after the six-week course. This trend continued to improve for many months thereafter, as I continued to practice mindfulness-based meditation.
My experience as a cancer patient has inspired me to study “Measured Survivorship”. Fall of year 2020, I enrolled in the Doctor of Nursing Practice (DNP) Program at Point Loma Nazarene. I’m designing an eHealth Promotion Program for Breast Cancer Survivors for my DNP project. Survivors will be provided with an Oura Ring and eHealth education on nutrition, physical activity and stress reduction guidelines provided by the American Cancer Society, American Society for Clinical Oncology, and the Society for Integrative Oncology. Participants will set health and wellness goals and learn health tracking methods designed to elevate health-promoting behaviors.
In addition to cancer, I have recently been diagnosed with Lyme, Bartonella, and Babesia. I have been having mysterious cognitive and perceptual issues, extreme fatigue, and neck pain. I went to a number of specialists over the past 1.5 years to finally discover the cause. I’m currently designing a study to measure my recovery as I engage in treatment.
Rachelle Babler
Rachelle Babler is a singer/songwriter and TEDx ideation coach. Her mission is to empower patients to advocate for their cause on stage or by creating a song that tells their stories. She explains her work in her recent TED Talk.
During the last trimester of her pregnancy with her second child, Rachelle started to experience severe vertigo. Her OB/GYN attributed it to her pregnancy and mentioned it would mostly subside after she had her baby.
It did not.
It actually got worse.
To find answers, she went to her Primary Care Physician who then sent her to an Ear/Nose/Throat (ENT) specialist. The ENT physician suggested she do physical therapy but she said no. She wanted an MRI. Having been a former paramedic, she knew a lot about the body but she also knew one thing very well – her own body. She has lived with it her whole life and she knew something was seriously wrong.
After sharing her concerns and advocating for the MRI, the ENT physician agreed to order the MRI. The MRI revealed that she had a rare brain tumor. 1% of all brain tumors – a facial nerve schwannoma.
Her diagnosis led her to a year-long journey to seek answers, opinions, treatment options, etc… due to the rarity of her condition. After collecting all the data from her appointments, research and opinions from various physicians, she found what treatment she wanted to treat her fast growing tumor.
Her insurance denied it. Even after having sought out expert opinions at Stanford University Medical Center.
She didn’t give up there and found an attorney to help her appeal her case. After months of waiting, on December 31, 2008 she found out that she had won her appeal and within weeks, she received Cyberknife Radiation. She is now 14 years post diagnosis and has helped numerous friends and family advocate for their health conditions and/or diagnosis’.
Rachelle says, “Always listen to your intuition – it’s usually right. Don’t take no for an answer and seek those who can help you navigate your health journey.”
Be your greatest advocate!
To promote patient empowerment and advocacy, Rachelle has created the Advocating Through Music Project™.