Updated: Jun 26, 2022
I remember that day sitting in a handkerchief of an excuse gown in a packed waiting room. I needed to wait for my mammogram results and speak to a radiologist. I waited, knowing something was not right. I am an oncology registered nurse of 10 years holding a certification in oncology working for one of the most world-known breast oncologists for her expertise and breakthroughs in breast cancer care, research, and treatments. I sat patiently watching the clock and waited. Finally, after an eternity of fifteen minutes, a radiologist walked into the room, avoiding eye contact, voice shaking. She said what I already knew. I needed a biopsy. It was a terrifying feeling, alone and half-naked hearing those words, so many patients I cared for in the past I know had heard.
In these times of our life, time slows down and reflects. I remembered the patients I had the honor to meet and the strength and inspiration they left me with after allowing me to care for them. They let me the opportunity to step into the darkest days and will enable me to show them the light. I thanked the radiologist with grace, and I went out to get dressed and schedule the biopsy.
Luckily knowing one of the best surgeons in Dallas with a fantastic sidekick, I was able to have the biopsy the next day. I kept thinking this was no big deal, and I was okay to go alone. However, walking into the exam room the next day, as I looked at the table with a hole in it I was going to lay down on, allowing my breast to fall through this hole as being biopsied, I broke. I cried so much I wondered if I would drown in my tears and snot on the table! Embarrassed, I got up quickly and dressed. I knew what the next steps were and t e wait. I needed someone, anyone. I needed to talk to someone who would listen without the glossed over "it will be fine" or without giving advice. I was not ready to hear or needed for the matter. I just needed an open ear.
I am not a church-going person, but I believe in God, the universe, fate, and angels, which I know I have many up there watching over me smiling. I spoke out loud in my car, knowing someone or something must be out there. Feeling the bruise already forming, I asked for guidance and s strength. Sometimes even with all the education possible, when it boils down, we are all human. Until you experience being a patient, it is challenging for anyone to comprehend or be able to. Please ear me. Do not resent those people. They shouldn't be held responsible for not ever being sick. It took me a long time to accept. Besides the jaw-dropping asking for $1500, before the biopsy could occur without notice, I was now scared and feeling more alone than I knew ever possible as I sat in my car. I was surrounded by many people, even experts in the field, yet I felt alone and lonely to the core. I wanted to talk to someone without feeling dismissed or as if I was a burden. I did not have time to dwell on it realizing what time it was, and I had to quickly shake it all off and pick up my two girls from daycare, be mom be wife, jumping right back into life as if it never happened.
I was not a stranger to being a patient before. Three months after giving birth to my second child, I began having minor daily headaches. It grew into migraines. Then it grew into migraines with aura. Then I started having neuropathy. I became miserably nauseated. I heard so many possible explanations on the probable cause, never finding one, just the permanent damage it was causing in my brain on the scans. I never dreamed five years later; I still would be at the same point in diagnosis and effective treatment. I went from my OBGYN to my PCP to a neurologist quickly. I had my first MRI and MRA on my lunch break from work. I received a call for me to be admitted to the hospital needing a lumbar puncture that evening and learning that the scans had shown I had suffered a stroke at a point unclear in the past; my body had the fantastic ability to build a capsule to control and prevent further damage. This type of occurrence only shows on an MRA of the brain and requires having annual MRA and MRIs. Later that night, I had a bedside lumbar puncture, sat up too quickly, and developed a spinal headache requiring two blood patches and a heart catheterization.
Everything was happening fast without a clear explanation or even anyone asking how I was feeling, which was intense nausea, vomiting, pain, and numbness in my hands a d toes. I felt scared, alone, as if I was on the side of the street as the world went on. I felt isolated by people I loved, trusted, and cared for in my life. I received so many " you will be okay's" or " call if you need anything." I did; I needed anything. My husband was trying to care for a newborn and two-year-old while working full time. I needed someone, anyone, and he did too.
Doctors threw medication after medication at me without a response. I kept working full-time in a fast-paced clinic, trying my hardest not to allow the pain to overcome me, yet it was. Worse, with a newborn at home, I was missing treasured milestones, irreplaceable moments with her and my young daughter, who was confused why mommy was so sick suddenly. My husband, my best friend in life who I adored, took on all our shared life responsibilities. He picked up and dropped the girls off, caring, cooking, and bathing them during the week as I worked later and later in an attempt to catch up t work. I was slowing down from the pain and nausea despite every effort not to. I feared losing my job, having had to fight, work diligently to prove deserving of holding, serving as the clinic's lead nurse. It was a part of who I was, and I was honored and proud to hold the position I truly loved. I lost friend by friend, and much more as it persisted. I heard it all-yes. I have tried it.
Long story shortened, and many experts later, today the symptoms are relentless and worsening. I have had good days and days I cannot leave the bed. I have learned to be an exceptional actress hiding symptoms or not mentioning them. I do not want my ailments to steal my life or be who others identified me; I push through it all and can most days. Without a diagnosis or successful treatment, I have no choice but for my family. The resentment of having people belittle the pain or doubt in some circumstances was intense, and some days I still must work through the hurt and replace the feeling wi h love. No one will ever know your path, challenges, and pain more t you. Most will not f ll ill. They will not have their marriage, friendships, and life challenged and tried by a health decline.
The burden of my pain and illness was heavy on my husband's girls, and mainly it weighed heavily on m heart. I was missing my life, yet no medical professional cared for or wanted to help. I went from a happy smiling person to someone bitter, an angry person. I once waited five weeks for a response from a doctor after notifying the clinic of my vision changing, experiencing uncontrolled pain, and neuropathy. She still has not responded. I know how hard it is and how easy it can be to lose faith in the medical field when feeling unheard or just another task on a list. On the other hand, some fantastic people serve relentlessly and love in all that ey do. Find them.
The worst is when you advocate for yourself feeling as if you are a pest by calling, asking, and in my case, begging for help, and if you do not contact, you risk your wellbeing and emotional fitness to keep the peace. The healthcare system has many cracks. It is not fair, and frankly, not okay in some cases. Care providers and teams are tired from the pandemic and understaffed, not appreciated by employers.
I am seeing a new doctor soon after much research. I hope that this new physician will show more empathy and continue alongside me for a better quality of life to be the mother to my young girls. Regain my life for my girls and my husband for me. I have lost many in the past five years; I lost friends, family, and a job I loved. The path to today was not easy, and I have lost faith many times. What I experienced I value in a lesson and discovery to my calling and true purpose, empowering me more than ever to advocate for better care for oncology patients. Mediocre care is not acceptable. Life is too valuable, and the time is too short.
As a nurse, I always felt a calling and purpose of being a part of a movement to advocate for a patient's rights and appropriate care. If I can help improve a person's dark chapter, I will move mountains to do so. I am determined to contribute to changing the rising bar in care standards and interacting with patients and families with the demanded respect. That person in front of you should be seen for the person they are: a mother, friend, wife, brother, son or daughter, to you a patient but someone, that person is their everything.
Even before I felt ill or had that bad mammogram, I acknowledged the honor of being a nurse. Patients and their loved ones trust nurses immensely; this trust is the most cherished and sacred must. The patient is handing over their life. I have never taken this for granted in the various positions I have held and never will.
I am a strong patient advocate and will stand up for rights. I am testing to become a Board-Certified Patient Advocate at the end of January. I want to help patients in the dark chapters; I never want anyone to feel alone while surrounded by others. I want to maximize the time spent with the oncologists and experts. Preparing the patient with knowledge with the questions to ask and providing support to the c nic. Collaborating with the physicians and office staff will help take time off the clinical team and provider while giving the patient more time without any restraints, which will benefit o all. Primarily, it will benefit patient outcomes, reduce anxiety, and help to facilitate care needs. I want to check in with the patient at every stage and ask," Hey, how are you? No, how are you?"
As human beings, we all have many roles in life. The role carried in life changes when you become a patient. You have a new identity, and for some, it almost must be a full-time job to keep up with the appointments and action steps. You are not your diagnosis. You are the p son. I see you, but more importantly, I am you.
Living with a diagnosis and going through treatment does not have to take over your life, and I want to help reduce that burden by taking away the power of your diagnosis to interrupt your life as much as possible and in any way possible.
In time, Servant Heart Advocates will be joined soon by a dietician, life coach to assist with shifting roles in life, fitness instructor, assistance with finding support groups, financial resources, and a clinical trial options education specialist. I want Servant Heart to support the mind, body, and spirit. Cancer creates a ripple effect on all aspects of life, careers, and family dynamics. I want to assist by serving and helping with opportunities and resources to address needs and provide support. Our aim is precisely not to replace your oncologist or the care team. They will always be the first to call for emergencies or emergent needs. The nurse-patient advocate will provide education at every stage following NCCN guidelines and evidence-based, proven care standards. Still, your oncologist must be aware of all and the ship's captain overseeing all aspects of care. Advocates aim to support mind, body, and spirit and empower patients to take back control over their lives. A nurse-patient advocate can assist with pharmacy calls/questions/issues in the clinic if not req ired. The nurse advocate can help prevent gaps in care assist with how best to contact the clinical staff with concerns and needs and actions when a call has not been addressed. Most of all, the nurse-patient advocates support the patient from day one and onward in the moments' in-between visits. They help prevent and recognize any problems or issues. The goal is to teach patients that they are the most critical person in the care team and how and when to utilize their voice for proper care and decisions by using functional communication styles and channels. Every person has the right to excellent care every day and every time.
Many physicians are not aware of the patients have experienced and are not being told of any communication failures or breakdowns unless medically necessary. I challenge this. Care should be delivered by an interdisciplinary team approach utilizing collaboration in planning all aspects of care. Leaving a patient in the dark or scared because of a need warrants a physician’s attention. The most significant difference seen in nurse-patient advocates is there is no time restraint without a clinic's demands. Patients do not feel pressed for ending the call as soon as possible. As for myself, I have never been annoyed with a patient calling too often; however, I will when they are not reaching out enough or for needs. You are not and never will be a burden in our eyes.
This is my calling and purpose in my life to serve a population that has such a great need for people to lean on and trust in the dark swirling waters of the unknown. Besides my two girls, an amazing husband, and two golden retrievers, I am here to serve for this very reason. I am honored to serve patients and the opportunity that allows for patients to trust and lean on in times of need. I have the ability and experience to provide education, support, actively listen to the patient and family. No question will ever be too small. As a nurse advocate, I believe in better care in oncology, and I am lucky to have worked alongside expert physicians with similar hearts and desires to care for patients authentically. They, too, pursued their calling and purpose in l e. A patient advocate can allow a patient to exhale, reducing stress, lessening the burden, and not giving cancer an opportunity or power to control a patient's life as much as possible.
Today, I openly share my story to empower you to share or know you are not alone. I see you; I am you.