Most of you probably already know that I have a type of brain tumor called an acoustic neuroma. For those of you who didn’t know, now you do. Here is my very long story of how we came to find out and how we’re dealing with it now.
Just before Christmas of 2009 I noticed that I was having a hard time hearing on the phone when I held it to my left ear. It seemed to get better, but then it seemed to get worse, so Logan forced me to go get the free hearing test here in town. I felt a little out of place in the waiting room, being the only one without a walker. I took the hearing test and the technician showed me that I was having slight difficulty hearing low tones out of my left ear. He said it was nothing to worry about and to come back in six months if I was still having trouble. So I left and felt better with the peace of mind.
Over the next couple of months it didn’t get better and I actually felt like it might be getting worse. So once again Logan made me go take the hearing test. This time I felt a little like a hypochondriac when he told me that my hearing really wasn’t any worse than it was before.
In May, I went to an Ear, Nose and Throat doctor in Bloomington, because Logan and I still felt like it was getting worse and we were getting nervous. He told me that it may have been a virus that had destroyed some of the nerves in that ear. He also told me not to worry about it and to come back in six months if it was still a problem. We were relieved. We tried to put it out of our minds.
This Fall it continued to get worse. It got to the point that I could no longer tell whose voice it was on the phone through my left ear. I couldn’t hear if someone whispered in my left ear in church. One night, we were riding in the car with our best friend, whose sister once had a golf ball size brain tumor. He overheard us joking about my hearing loss and he said, “My sister lost her hearing in one ear.” The car got quiet and in the backseat I thought, “Oh crap.” But I didn’t really consider it as an actual possibility. I mean, we were in the middle of an adoption and surely that is enough excitement for one year. Besides, the only thing the doctors had said about a tumor- was that it definitely wasn’t a tumor.
Between Thanksgiving and Christmas, Logan and I started to realize that my hearing had gotten really bad. I couldn’t distinguish a single word on the phone through my left ear and if I covered my right ear with a pillow I couldn’t hear Logan’s normal speaking voice with him standing right in front of me. He once again demanded, this time in a not so subtle way, that I see the Ear, Nose and Throat doctor. So we scheduled an appointment for January 18th, 2011.
Logan went with me to that appointment, even though I couldn’t imagine why he would need to. The doctor once again assured us that it was nothing more than a virus, but that if my hearing was truly worse he would order an MRI just as a formality. So I went for my fourth hearing test and I very quickly realized that my hearing was without a doubt much worse. I found out later that my ability to recognize words in my left ear had dropped from 80% in May to 16% in January. At one point in the test the technician actually told me that my hearing had gotten significantly worse and she asked if I had ringing in my ears. I told her I did, but only about once a day for the past couple of months. I could see a thought register on her face, and something about her expression made me think “Oh crap” again. I started crying as soon as I saw Logan in the waiting room, and I was really glad that I had let him come with me.
They scheduled an MRI and we went that Friday night. Turns out I am horribly, horribly claustrophobic. That was the most miserable experience of my life. Next time, I will request drugs.
That Sunday, Archie preached from the book of Job. He reminded us that we are all too happy to accept the good things that God gives us, but when he brings us something bad, we often shake our fists and say, “Why me?!” As if in response to his words, there was a high pitch ringing in my left ear. And once again, I thought, “Oh crap.”
Monday afternoon, alone at Smidgens with eight children, I got the call. I have a tumor, called an acoustic neuroma, on the left side between my inner ear and brain. I had just enough time to call Logan, call my mom, Google “acoustic neuroma” and read a few brief articles before the kids started to wake up from their naps. I didn’t cry or panic or crawl off to a corner to die, like I would have assumed I would have reacted. I doubt that the mothers noticed I was any more frazzled that afternoon than I am on an average Monday afternoon.
Just before Christmas of 2009 I noticed that I was having a hard time hearing on the phone when I held it to my left ear. It seemed to get better, but then it seemed to get worse, so Logan forced me to go get the free hearing test here in town. I felt a little out of place in the waiting room, being the only one without a walker. I took the hearing test and the technician showed me that I was having slight difficulty hearing low tones out of my left ear. He said it was nothing to worry about and to come back in six months if I was still having trouble. So I left and felt better with the peace of mind.
Over the next couple of months it didn’t get better and I actually felt like it might be getting worse. So once again Logan made me go take the hearing test. This time I felt a little like a hypochondriac when he told me that my hearing really wasn’t any worse than it was before.
In May, I went to an Ear, Nose and Throat doctor in Bloomington, because Logan and I still felt like it was getting worse and we were getting nervous. He told me that it may have been a virus that had destroyed some of the nerves in that ear. He also told me not to worry about it and to come back in six months if it was still a problem. We were relieved. We tried to put it out of our minds.
This Fall it continued to get worse. It got to the point that I could no longer tell whose voice it was on the phone through my left ear. I couldn’t hear if someone whispered in my left ear in church. One night, we were riding in the car with our best friend, whose sister once had a golf ball size brain tumor. He overheard us joking about my hearing loss and he said, “My sister lost her hearing in one ear.” The car got quiet and in the backseat I thought, “Oh crap.” But I didn’t really consider it as an actual possibility. I mean, we were in the middle of an adoption and surely that is enough excitement for one year. Besides, the only thing the doctors had said about a tumor- was that it definitely wasn’t a tumor.
Between Thanksgiving and Christmas, Logan and I started to realize that my hearing had gotten really bad. I couldn’t distinguish a single word on the phone through my left ear and if I covered my right ear with a pillow I couldn’t hear Logan’s normal speaking voice with him standing right in front of me. He once again demanded, this time in a not so subtle way, that I see the Ear, Nose and Throat doctor. So we scheduled an appointment for January 18th, 2011.
Logan went with me to that appointment, even though I couldn’t imagine why he would need to. The doctor once again assured us that it was nothing more than a virus, but that if my hearing was truly worse he would order an MRI just as a formality. So I went for my fourth hearing test and I very quickly realized that my hearing was without a doubt much worse. I found out later that my ability to recognize words in my left ear had dropped from 80% in May to 16% in January. At one point in the test the technician actually told me that my hearing had gotten significantly worse and she asked if I had ringing in my ears. I told her I did, but only about once a day for the past couple of months. I could see a thought register on her face, and something about her expression made me think “Oh crap” again. I started crying as soon as I saw Logan in the waiting room, and I was really glad that I had let him come with me.
They scheduled an MRI and we went that Friday night. Turns out I am horribly, horribly claustrophobic. That was the most miserable experience of my life. Next time, I will request drugs.
That Sunday, Archie preached from the book of Job. He reminded us that we are all too happy to accept the good things that God gives us, but when he brings us something bad, we often shake our fists and say, “Why me?!” As if in response to his words, there was a high pitch ringing in my left ear. And once again, I thought, “Oh crap.”
Monday afternoon, alone at Smidgens with eight children, I got the call. I have a tumor, called an acoustic neuroma, on the left side between my inner ear and brain. I had just enough time to call Logan, call my mom, Google “acoustic neuroma” and read a few brief articles before the kids started to wake up from their naps. I didn’t cry or panic or crawl off to a corner to die, like I would have assumed I would have reacted. I doubt that the mothers noticed I was any more frazzled that afternoon than I am on an average Monday afternoon.
We started researching websites, physicians, and I joined an acoustic neuroma yahoo group. We briefly decided that radiation was the answer, but we’ve since decided that surgery is probably the right choice. We met with Dr. Fritsch, an otolaryngologist, in Indianapolis who explained everything really well. The tumor is not cancerous and it is slow growing. My tumor (which my lovely family has named Earl, spelled capital E-A-R little l) is only 1 ½ centimeters long.
It really wouldn’t be that bad of a thing at all, if it weren’t for the location. This kind of tumor grows off of the balance nerve and presses again the hearing and facial nerve. After surgery I will probably lose all of my hearing and will learn to compensate with just one balance nerve. There is a risk of facial paralysis if the facial nerve is destroyed. I can deal with losing the rest of my hearing on this side and some balance problems, but I am praying that I won’t have any damage to my facial nerve.
We are planning to have my surgery at the House Ear Clinic in Los Angeles. I will have to be in LA for two weeks. Certain members of the family (Tyler) think they are going to make a nice vacation out of my misfortune.
After I was diagnosed, I spent the first few weeks feeling pretty good, but I think I was in a little bit of denial. It’s a lot to get your mind around. A brain tumor. How can that be? I’m 29 and I feel fine. But slowly it has sunk in and over this past week I have had a few very bad days.
But that is where the friends part comes into play. Of course Logan and my parents and his parents and our extended family have been supportive and wonderful. Logan has been amazing and I wonder if I would be able to do as good of a job for him as he is doing for me. And my parents are taking care of us in ways that only ones own parents would.
My friends have also been amazing. They have offered to do everything from working at Smidgens, to cleaning my house and bringing me food. (DO NOT ever clean my house, I would be too embarrassed. DO bring me food, anytime. Like, even right now.)
Beyond even those who have known me for years… there has been this new layer of support coming to the surface these past few weeks. These are the people who really amaze me. I’ve talked to Amanda in San Francisco who made this amazing blog called Think like a Ninja to document her own acoustic neuroma experience. I’ve spoken on the phone and through email with Ella, a woman who had surgery at the House Clinic just two weeks ago. She called me just days after her own surgery to tell me how it went. And the group on the America World Adoption YahooGroup has come through for me with well-wishes and prayers like I had never dreamed. I told them my story one night at 8:30 and by noon the next day I had almost 40 people respond with the most thoughtful, meaningful words I’ve ever read. Three different people who live in the Los Angeles area have offered to help us out while we’re there.
When I combined all of the responses and emails from YahooGroup alone into a Word file it was 13 pages long.
Finding out that I have a brain tumor has really stunk. I wouldn’t wish it on anybody. But the friends and family that have circled around me have made this completely bearable. They have made it awfully hard to find time to feel sorry for myself.
So I want to say thank you. I know there is a long road ahead of us… but it helps to know that I won’t be alone.
After I was diagnosed, I spent the first few weeks feeling pretty good, but I think I was in a little bit of denial. It’s a lot to get your mind around. A brain tumor. How can that be? I’m 29 and I feel fine. But slowly it has sunk in and over this past week I have had a few very bad days.
But that is where the friends part comes into play. Of course Logan and my parents and his parents and our extended family have been supportive and wonderful. Logan has been amazing and I wonder if I would be able to do as good of a job for him as he is doing for me. And my parents are taking care of us in ways that only ones own parents would.
My friends have also been amazing. They have offered to do everything from working at Smidgens, to cleaning my house and bringing me food. (DO NOT ever clean my house, I would be too embarrassed. DO bring me food, anytime. Like, even right now.)
Beyond even those who have known me for years… there has been this new layer of support coming to the surface these past few weeks. These are the people who really amaze me. I’ve talked to Amanda in San Francisco who made this amazing blog called Think like a Ninja to document her own acoustic neuroma experience. I’ve spoken on the phone and through email with Ella, a woman who had surgery at the House Clinic just two weeks ago. She called me just days after her own surgery to tell me how it went. And the group on the America World Adoption YahooGroup has come through for me with well-wishes and prayers like I had never dreamed. I told them my story one night at 8:30 and by noon the next day I had almost 40 people respond with the most thoughtful, meaningful words I’ve ever read. Three different people who live in the Los Angeles area have offered to help us out while we’re there.
When I combined all of the responses and emails from YahooGroup alone into a Word file it was 13 pages long.
Finding out that I have a brain tumor has really stunk. I wouldn’t wish it on anybody. But the friends and family that have circled around me have made this completely bearable. They have made it awfully hard to find time to feel sorry for myself.
So I want to say thank you. I know there is a long road ahead of us… but it helps to know that I won’t be alone.
RSS Feed