Strength in Struggle

By Holly Martinez

My medical condition began at the end of 2020 where I went for a routine dental exam and my x-rays showed trauma. The dental hygienist did not want to alarm me but stated if I had not been in an accident or hit with a baseball bat to the jaw then I had cancer. I was referred to an oral surgeon who wanted to remove a couple of teeth and biopsy the tissue underneath. My teeth were immaculate—I refused to believe that it was necessary. I went to a holistic dental facility which was highly regarded and recommended to me by a close friend. Unfortunately, they were unable to save my bottom teeth. I had eight extractions, and removal of a tumor. They believed I still needed radiation and had a form of cancer called Follicular Lymphoma. My energy and health quickly declined, and I was preparing for the worst. I moved in with my family in late Spring 2021.   

I received an implantable venous access port in September 2021 and waited for chemotherapy to begin. This never happened. The oncologist that was supposed to treat me believed I never had cancer and refused to help me any further. I would continue to press the issue as my body never fully recovered and my jaw was continuing to fracture and deteriorate. My jaw had been locked for six weeks. The doctors that were supposed to help were no longer returning my calls or showing up for our virtual meetings. This was frustrating to not be taken seriously. I also had a nasty oozing of a yellow greenish liquid from my mouth that would spray out if pressed on. I checked myself into the ER and remained in the infectious disease unit for almost two weeks. At that time, I had my last two bottom teeth extracted and my jaw scraped. The technical terms are a mandible biopsy and a biopsy of mass in my neck. They had me on constant antibiotics given via iv in both arms. The best part of being in the hospital is my insurance covers speech therapy. I also had stage 3 trismus which makes my jaw lock up. The speech pathologist was awesome and taught me the exercises to unlock my jaw. No one educated me on trismus or prepared me for this ongoing issue. This was in November 2021, and I was discharged the day before Thanksgiving. 

 My face continued to change but I still ate what I wanted. I just had to be careful and cut it into smaller pieces. I was desperate to get back to my normal life and pressed for reconstruction surgery. I feared my jaw may dislocate and completely detach. March 2022, I had a mandibulectomy, tracheotomy, neck dissection (bilateral), free flap (left fibula), and placed a feeding tube through my nose. Simply put they cut me open ear to ear under my chin and took the bone from my leg, then cut the fibula bone into six pieces to create a new jaw which included a titanium plate for future dental implants. I found this fascinating and felt like a bionic woman. I used a walker for a few weeks while I learned how to walk, talk, and eat again. I was determined to get my health back on track. 

I recovered well and thought my nightmare was over with. Until summer 2023, one day I woke up with bruises around my neck and a little bit of swelling. It looked as if I had been strangled but at that time I had no pain. For the next year, my neck would consistently swell up with blood. My ENT had biopsied with no findings, but my pain was becoming unbearable. It had become exceedingly difficult to communicate and swallow. I continued to make doctor appointments. The unofficial term was that I had been labeled a medical mystery. I desperately needed someone to care for and assist me. My mental health had been affected, and I was depressed. I felt helpless and disconnected with my family. I felt like a freak.  

I lost track of all my ER visits with useless prescriptions of antibiotics, pain killers, opioids, and temporary relief with the use of steroids. I finally asked my aunt and uncle to accompany me on a follow-up appointment. They are both retired from the medical field and were suggesting some options and concerns with my doctor. We decided to put two drains in my neck and scheduled surgery. The following morning my otolaryngologist at the University of Arizona Cancer Center, called me and said he was up late the night before doing research and stated he believed I had Gorham Stout disease (GSD) which they explained was a disease that affects the lymphatic system. Better known as Vanishing Bone Disease. Of course, I had never heard of it before. He encouraged me to do research and stressed this is an extremely rare disease, most doctors have never heard of. I was traveling two hours each way to see him, so he referred me to an ENT specialist closer to where I reside. I met with this new ENT specialist who also is an otolaryngologist at the MD Anderson Cancer Center. He referred me to his colleague at the Seattle Children’s Hospital who specializes in Vascular Anomalies. I was extremely excited to hear this news, but unfortunately my insurance would not cover out-of-state referrals. While waiting for approval I continued to go back and forth to the ER. I had numerous CT scans which helped diagnose me. Finally, a doctor was found at the same center who specializes in oncology and hematology. He agreed to meet with me. Although he has no experience with this disease, I am still grateful for him to agree to treat me.

In April 2024 I was in excruciating pain that I almost gave up. I could no longer swallow, and my throat was huge. I could no longer eat and drastically dropped 12 pounds in 5 days. I would choke on my saliva and constantly drool. I had to sleep propped up or I would choke on my own saliva. I barely slept a few hours a day. I still wanted to fight and decided the only way I was going to live was by getting assistance with a feeding tube. I contacted my ENT and shared my plan. I traveled to a different ER over an hour away and admitted myself. My doctor met me there and since has been involved in everything. I finally found someone who cared about me. I spent 10 days and had sclerotherapy of the neck seroma via an existing drain performed. Per my request a gastrostomy tube was placed. While in the hospital I began treatment. For a few weeks after my discharge, I relied on a suction machine to assist with my overabundance of saliva. I am currently 8 months into treatment and am awaiting another major jaw reconstruction. I currently take Sirolimus and receive Zometa infusions. I hope that by sharing my experience it may help someone get diagnosed sooner. I have found my purpose in pain and will advocate for Rare Disease patients. This experience has taught me the importance of patience, and the unexpected strength I found in my struggle.

Thank you for taking the time to read about me.