As Jacquelyne Froeber tells
“I have never seen anything invasive in my life,” said my surgeon.
I was still dazed by anesthesia, but the expression on his face meant that what I heard was true. Apparently I was in the operation for six hours – not two – and whatever grew in my ear was also in the layers of the tissue that my brain protected.
“It looks like cancer,” he said.
Shock doesn’t even start to describe what I felt at that moment. I went to an ear infection. Now I have brain cancer?
It all started innocent enough. In January 2011 my right ear was full of pressure and everything sounded as if I were under water. But I didn’t find it too serious. January was actually a really happy and exciting time. It was the month in which my first granddaughter was born and I couldn’t imagine a better way to start the new year.
A slight ear infection was diagnosed for me, so I took antibiotics, but they didn’t help. Nothing did. I was finally referred to a specialist between ears, nose and neck (ent), but it took months to make an appointment. When I finally saw the specialist, I had a scan of my ear. The imaging showed that there was a mass, so they immediately made a biopsy.
After the biopsy surgery, I learned that the mass was also in my brain and probably cancer -like. But the pathological report came back negatively. “How is that possible?” I asked. My provider was amazed. He said the tumors had acted like cancer, so we would treat it like cancer – very aggressive.
I had an operation to remove the tumors – and this operation was a success – but six weeks later the crowd was back. And two weeks later, another mass grew on the left side of my head. It took five operations to remove them.
We still had no confirmation that the tumors were cancer, but I started radiation to try to prevent them from growing. I am a radiological technologist through trade, so I understood the effects of radiation treatments – but I didn’t know how terrible the side effects would be for me. The treatments made me weak and drained by all of my energy. I also had weakening headache attacks, which felt like a slanter for the skull.
In addition, the radiation did not work. And at that point, the mass had damaged the hearing structures in my right ear, and I needed an operation for a cochlea implant.
(Photo/courtesy of Sabrina Riddle)
I was worn out by November 2013. Exhausted. Depressed and not hear from my right ear. With my granddaughter’s second birthday, I could only think of one thing: I’ve been in this fight for two years and here is another year that I have to do with what this is not diagnosed.
I had seen many specialists to get a diagnostic and treatment plan. But a certain rheumatologist was curious enough to order a spine. When the results of the spine caught came in, she said: “I think I know what you have, but I can’t diagnose them. You have to go to Massachusetts to see the leading researcher for this disease. ”
She didn’t have to tell me twice. I grabbed my bags and met the specialist next week. His name was Dr. Stone and he told me that I had an immunoglobulin g4 disease (IGG4-RD)-an extremely rare inflammatory disease. He explained to me that Igg4-RD leads to tumors form in different parts of the body and behave as cancer, because it is so aggressive-but it is not a cancer.
I sobbed with relief in his office – I finally had a diagnosis. But I’ve also cried in the last three years of my life. All operations, several hospital stays, the boat charge of steroids – and they have their own problems – has helped none of this. I do not intend to do the doctors for doing a lot for it, but I had gone through a lot. And if that were the treatment of cancer – how would the treatment be for a rare disease like this?
Dr. Stone is known as the godfather of IGG4-RD, and he assured me that my new treatment plan would work and that it was not as hard as radiation. I started a biological infusion and immediately saw signs that the disease went into the remission. It felt like a weight was lifted from my life. For the first time in a long time I felt hope for the future.
I felt better – I had a lot more energy, fewer headache attacks and visual disorders and improved joint pain. I even got a little cocky and thought I was a one and I could put the illness behind.
But that was not the case. I had a relapse in 2015. It started with blurred vision and heavy headache attacks – and this time the cognitive decline was quick and shocking. I was destroyed. I had the treatment infusion and within about two months I caught myself more like me. But when I came back in 2017, I realized that this would probably be a pattern for the rest of my life.
Every time there is a tribute. The effects of the IGG4 RD disease on the layers of my brain (as meninges) can cut oxygen for the brain and the arteries and cause seizures. So I’m really concerned about every flare because I don’t know what could happen every time it comes back.
Last November I called my sister and just lost it. I had the feeling that the disease rejects my life, even if I was in remission. The loneliness associated with a rare disease adds another layer of sadness and despair. I didn’t have a single person with whom I really knew what happened to me or understood that I looked good from the outside, but I was the best of OK. I told her, I wish there was more advocacy in the illness.
About a week later I got my wish. An Advocacy group called me and asked if I would be interested in talking about Igg4-RD at a conference. I was so shocked that I almost dropped the phone. Until December I was in a conference aircraft and have been working as a patient for IGG4-RD since then.
Via my new platform, I banned myself with other patients with IGG4 RD as well as with nursing staff and healthcare services who try to advance the treatment for the disease. Having a community was a life change for me. A rare disease is exhausting – especially one that affects your brain. But now I know that I don’t go this street alone.
At the moment I am making a relapse and it’s difficult. The pain is sometimes unmanageable and the heavy doses of pain medication weigh me. But last year I saw so much advocacy and research that I am hopeful about the future. And sometimes you can only get hope while waiting.
This educational resource was created with the support of Amgen, a healthy member of the Corporate Advisory Council.
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