As told Jacquelyne Froeber
«I’ve never seen anything as invasive as this in my life,» said my surgeon.
He was still stunned by anesthesia, but the expression of his face meant that what I heard was true. Apparently, I was in surgery for six hours, not two, and what was growing in my ear was also in the layers of tissue that protected my brain.
«It seems cancer,» he said.
Shock does not even begin to describe what I felt at that time. I entered a ear infection. Now I have brain cancer?
It all started innocently. In January 2011, my right ear was full of pressure and everything sounded damping, as if it were underwater. But I didn’t think it was too serious. January was actually a really happy and exciting moment. It was the month in which my first granddaughter was born, and I couldn’t think of a better way to start the New Year.
I was diagnosed with a mild infection for the ear, so I took antibiotics but they didn’t help him. Nothing did. Finally they sent me to a specialist in ear, nose and throat (EV), but it took months to get an appointment. When I finally entered to see the specialist, I had a scan of my ear. The images showed that there was a dough, so they did a biopsy immediately.
It was after biopsy surgery that I knew that the dough was also in my brain and probably cancerous. But the pathology report became negative. «How is that possible?» I asked. My supplier was perplexed. He said that tumors acted as cancer, so we were going to treat it as cancer, very aggressively.
I underwent surgery to eliminate tumors, and that surgery was a success, but six weeks later, the dough had returned. And two weeks after that, another dough was growing on the left side of my head. Five surgeries were needed to eliminate that.
We still had no confirmation that tumors were cancer, but I started radiation to try to avoid growing. I am a radiological technologist by profession, so I understood the effects of radiation treatments, but I did not know how terrible the side effects for me would be. The treatments left me weak and drained from all my energy. He was also having weakening headache attacks that felt like a skull mallet.
In addition to everything, radiation did not work. And at that time, the mass had damaged the auditory structures in my right ear, and needed surgery for a cochlear implant.
(Photo/courtesy of Sabrina Riddle)
By November 2013, it was worn. Exhausted. Depressed and unable to hear out of my right ear. With my granddaughter’s second birthday, I could only think one thing: I have been in this fight for two years and here comes another year that I will have to deal with what this non -diagnosed thing is.
I had seen many specialists in an effort to obtain a diagnostic and treatment plan. But a particular rheumatologist was curious enough to ask for a spinal tap. When the results of the spinal tap arrived, she said: “I think I know what you have, but I cannot diagnose yourself. I need you to go to Massachusetts to see the leading researcher of this disease. »
She didn’t have to tell me twice. I packed my bags and met with the specialist next week. His name was Dr. Stone, and he told me that he had G4 immunoglobulin-related disease (IgG4-RD) – An extremely rare inflammatory disease. He explained that IGG4-RD makes tumors form in different parts of his body and looks and behaves like cancer because it is very aggressive, but it is not cancer.
I only relieved right there in his office. I finally had a diagnosis. But I was also crying during the last three years of my life. All surgeries, multiple hospitalizations, the large amount of steroids, and have their own set of problems, none of that helped. I don’t culro doctors for any of that, but it had gone through a lot. And if that were the treatment for cancer, what would the treatment for a rare disease like this?
Dr. Stone is known as the godfather of IgG4-RD, and assured me that my new treatment plan was going to work and was not as hard as radiation. I started a biological infusion and immediately began to see signs that the disease went to remission. It felt like it was a weight of my life. For the first time in a long time, I felt hope for the future.
I began to feel better: I had much more energy, less headache attacks and visual disturbances, and better joint pain. I even got a little arrogant, thinking that it was one and I could leave the disease behind.
But that was not the case. In 2015, I had a relapse. It began with blurred vision and severe headache attacks, and this time the cognitive decline was fast and shocking. It was devastated. I had the treatment infusion, and in about two months, I began to feel more like me again. But when I relapsed in 2017, I realized that this would probably be a pattern for the rest of my life.
It has a toll every time. The effects of IgG4-RD disease on the layers of my brain (called Meninges) They can cut oxygen to the brain and arteries and cause seizures, so I am really worried about each Bengal because I don’t know what could happen every time I return.
Last November, I was talking with my sister and lost it. I felt that the disease was coming over my life, even when I was in remission. The loneliness that entails having a rare disease adds another layer of sadness and despair. I did not have a single person to talk to who I really knew what was happening to me or understood that I looked good on the outside, but I was the farthest from OK. I told him that I wanted more defense around the disease.
Approximately a week later, I got my wish. A defense group called me and asked me if I would be interested in talking at a conference on IGG4-RD. I was so surprised that I almost dropped the phone. In December, I was on a plane to the conference, and since then I have been working as a defender of the IGG4-RD patient.
Through my new platform, I connect with other patients with IGG4-RD, as well as caregivers and medical care providers who try to advance the treatment of the disease. Having a community has been a change of life for me. Having a rare disease is exhausting, especially one that affects your brain. But now I know not on the way just along this path.
At this time, I am going through a relapse and it is difficult. Pain is sometimes unmanageable and the heavy doses of pain medications weigh. But in the last year I have seen so much defense and research that make me hope for the future. And sometimes all you can do is keep hope alive while waiting.
This educational resource was created with the support of Amgen, a member of the Corporate Advisory Council of Greetings.
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