Picture this…I’m happily walking down the street one moment and in the next moment, I’m riding in an ambulance. Well, it didn’t really happen that quickly, but close.

On October 15^th, 2013, I took a lovely drive on a beautiful fall day to see my good friend, who just happens to fit hearing aids. I was a little bit nervous, but mostly excited that I was finally going to be able to hear, get teased a little less by my kids, and have a snazzy new piece of technology behind my ear to show off. After all, I’ve been working for a hearing aid company for close to ten years, it’s about time I represent.

After she tested my hearing, and tested the hearing in my bone, which is apparently different than what your ear hears, she looked at me and said, “You have profound hearing loss in one ear. I want you to go to an ENT to see what’s causing it.”

“What do you mean ‘what’s causing it?’ I thought I just had hearing loss.”

She said, “There is a medical reason for your type of hearing loss, I want you to see a doctor to figure out what it is and then come back and we’ll get you set up with an aid.”

“You’re my good friend, can’t you please tell me what you think may be causing it?”

She said, “I really can’t. I’m not a doctor. It could be caused by several different things, possibly Ménière’s disease, or a tumor or any number of things. You need to see an ENT. Here, let’s get on Google and find one near you….”

Those words echoed in my head. Ménière’s disease. Tumor. See a doctor. In other words, something else is going on. You don’t have just plain-old, run-of-the-mill hearing loss.

We continued to chat and catch-up, we talked about kids, and work and life. She walked me to my car, we chatted a few more minutes in the beautiful sunshine, said our good-byes, I promised to keep her up-to-date on what I found out, we hugged and I was off.

Meanwhile, those words echoed in my head. Ménière’s disease. Tumor. See a doctor.

I called my husband on the way home, told him about the appointment, tried not to sound nervous, and reassured him that I would call around to find an ENT as soon as I got home.

Which I did. I called several. Many wanted me to see an Audiologist first and get my hearing re-tested. Most wanted to do their own test before they would see me again at another appointment to look at the cause. Ain’t nobody got time for dat. I finally made an appointment with one who could see me on the 29th. The 29th seemed so far away, two whole weeks, but ok, I’ll take it.

The next morning, I got up, showered, got the kids off to school and went to see my chiropractor. After my adjustment, I started to tell him a little bit about my appointment the day before. All of a sudden, his face changed. The normal, happy, laid-back (and might I mention good looking) guy was gone and there was a very concerned individual standing in front of me. Now he was asking me strange questions, you only have hearing loss in one ear? are you having any numbness in your face? And more questions that I couldn’t possibly hear because he was looking at me with so much concern, I got worried. And if you know me, I don’t get worried that easily. I would certainly not classify myself as a worry-wart.

I called my husband and told him about “the look” and that it worried me. I tried to sound calm, and reassure him and myself at the same time. I don’t know if it worked. I’m thinking now that it didn’t. He told me he thought I should go to the Emergency Room at the hospital where he works. I said, “No, this isn’t really an ’emergency’, I’m not bleeding or throwing up.” He said, “This qualifies as an emergency. You cannot wait until the 29th. You need to go now.”

I sighed and said, “you’re probably right. But I feel weird. I mean, honestly, I’m not sick.”

I called my sister-in-law who is a pharmacist and told her about “the look”. She said, “You need to go to the Emergency Room. And don’t leave until they give you a CT Scan. Something is going on, you cannot wait until the 29th.”

I emailed work and told them I’d be gone for the afternoon and off I went to the Emergency Room, hoping I’d get back in time to pick up my kids after school.

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Don’t let that name fool you. I don’t have cancer. I thank God every day that I’m not battling cancer. I have a benign brain tumor. Meaning that it’s a cancer-behaving bunch of mutating cells that want to have a party in my brain, but it won’t spread and it doesn’t invade tissue. Most of it is gone, but there is a remaining little bit…I say little because compared to what it was, it is little, but compared to what most people initially find, it’s not little. It’s about 1cm x 1.5 cm right now. This falls into the medium category as far as acoustic neuromas go.

So yesterday we, my husband and I, met with the Radiation Oncologist at the CyberKnife office. Contrary to the name, there are no knives involved. This was a nerve-racking appointment for both of us. We had a lot of questions that were weighing heavy on our minds and we still have a lot of unexpressed emotions about this whole thing that are just an elephant in the room, as they say.

The appointment itself went really well. The doctor was very nice, very thorough and very understanding. He sat and listened and then patiently answered every one of our many questions. He completely understood our concerns, a big one being that we are afraid radiation now is going to have some long-term effect that we can’t possibly know about. Is it going to cause cancer? Basically, what he told us is that there is just not enough documented evidence to make that a concerning factor. He tells his cancer patients about that risk, because, even though it is rare, it is more common with malignant tumors since the dose of radiation used for a malignant tumor is so much higher.

His attitude, his confidence and knowledge pretty much sealed the deal for me. I can choose not to do anything about the tumor right now, but in all likeliness, it will grow back in a time-frame where I would eventually exhibit symptoms. By that time, it may be too big to radiate. From my understanding, once they are over 2.5 cm radiation is no longer a viable option. And although he says they only grow about 1-2mm a year…I’m not so sure about that in my case.

In a nutshell, my options are to do nothing and wait for it to grow back, which it probably will, then face surgery again; radiate now and pray that it kills the tumor and have no surgery again; radiate and on the very small chance it doesn’t work, do another surgery to remove the rest of the tumor, knowing that I will most likely lose my facial nerve.

I chose door #2. And on the very off chance that it doesn’t work, we will know in about 18 months…then I know, without a doubt, that I will have to have surgery again.

I’ll do one (one hour-ish) treatment every day for three days in a row, most likely sometime at the end of May. They use a dose of 6 greys each day, for a cumulative dose of 18 greys. In treating a malignant tumor, they usually use a dose of about 50 greys over a long time period, so this method is mild, and can be fractioned as opposed to GammaKnife which cannot be split up over several days.

The side effects I can expect are fatigue, a flare-up of my tinnitus (I’m not looking forward to that!) and headaches (eh, I’ve had plenty, I can deal with those). The radiation often causes some swelling…in my case, even though my brain has resumed its sorta former shape and glory since they took the lemon out, there is a little bit of room for swelling. And, they will prescribe me some steroids to counteract the swelling, just in case. So I can expect to be a famished, tired, headachy hot mess afterward. Nice. Can’t Wait. Nurse Molli also explained that my shunt will help keep the fluids moving and draining properly so its better that its in there for this process.

Now, we wait for the call. They will have me come in, do a CT scan right at their facility, and do yet another MRI. Then the doctors, including my neurosurgeon, will proceed with the planning which should be about a week. Anyone who can look at my brain for a week deserves a medal…and a cookie. At this time, they will make a lovely plastic mesh form shaped exactly to my face. They use this during the procedure to screw my head to the exam table so while they are shooting the tumor full of radiation, I don’t move. Yikes. It’s quite space-agey and should be interesting…but according to Molli, I can breathe normally. Oh, thank God for that.

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