On Monday we needed a trip to the grocery store. So we hopped into the car, I turned it around in our driveway (yes, I drive again, and mostly it’s just ok) and asked my husband: “Where to? Which store?” “How about Prisma”, he answered, and I was all: “Yeah, good idea. I can get some more shampoo from there then too!” For the shampoo I and the girls use, is only available in Prisma, out of our regular stores.

We got to the intersection where I had to decide which Prisma to go to, and instead of heading to the one in Jumbo the shopping center (“it’s full of Tamperelaiset on their winter vacation anyway”), I turned to Tuusulanväylä and Ring1, and drove down to Kannelmäki. It’s a bigger and newer one (well, ok, been there as some super market forever but newly renovated and enlarged) and lacks the shopping center buzz.

Being as cold and dreary and stark as it is now outside, I drove to the underground garage. Tell you the truth, the weather is never ok for above ground parking if you ask me – it’s either too hot or too cold or too wet or too dusty or… So garage it was. Got a spot quite conveniently, there were no huge crowds there on a regular Monday mid-afternoon.

We got out of the car and immediately I was greeted with cars and people everywhere, all different sounds coming from different direction, and a cleaning machine making its way accross our path, coming from our right, but it still seemed like it came from out of nowhere, and at least somehow from my deaf spot. I grabbed my husband’s jacket and hung on to it until he gave me his hand and I felt safe again.

We climbed to the store, using the escalator. I took the backpack, while my husband took a basket for us. Very rarely do we use the shopping carts, for they’re such a nuisance, people blocking the aisles with them and bumping into other people and the wheels being all crooked and pulling the carts to different directions like they’d have a mind of their own.

That Prisma had been remodeled again. Not hugely, but enough to have us confused for a while, when things weren’t where they used to be. We went walking down the wide aisles, picking items into our basket as we went. We walked over to the produce section and by then, the store was starting to spin in my eyes. Not like totally or in an I-will-pass-out kind of way, but my head was swimming. Best way to describe it would be sea sickness. Vertigo.

We still had some stuff to be gathering into our basket, so I pushed the sickening feeling away as best I could and carried on, with the Finnish sisu flowing in my veins. I almost got frantic, when we couldn’t find the Digestive graham cookies needed for the key lime pie we were planning to make. “Calm down, go systematic, they’ve got to be somewhere around the bread section”, I told myself and went looking, while my husband set the basket down and waited for me. And I found them.

We started towards the cash registers, via the shampoo aisles, when this sickening high-pitched squeaking hit my eardrums, making me feel like my head would explode. A lady was pulling one of those bigger baskets with wheels and the wheels were screetching and squeaking as they went. We passed her and the basket as quickly as we could, got the shampoo and some body milk I needed as well, and were ready to pay.

We got out of the store, and headed down to the parking garage again. I handed my husband the car keys: “You get to drive home. I’m feeling too dizzy.” “I was just about to ask if you wanted me to drive”, he said as he took the keys from me. We drove home, made some dinner and the key lime pie (out of Mexican limes though, for you can’t get key limes around here). I still felt dizzy, but pushed it away while things needed to be done. After dinner and a walk with the dog, I was ready to be flat for the rest of the evening.

I didn’t sleep too well that night, for whatever reason, either. Yesterday I was mostly feeling sort of ok, despite that, but when we went for a longer walk with the dog in the late afternoon – 45min. or so, 3km or so – I started having a bad case of dizziness – or vertigo – about 300 meters from home.

“I don’t always know if it’s better to rest or to push myself when my head starts to feel strange and dizzy”, I told my husband. “Probably it’s good to push a bit, and then rest”, he replied. “Well, walking here I don’t really have too much choice if I want to get home…” I trailed off. I lowered my eyes to my shoes, it helped a bit.

At home I crashed on the sofa, for the first time in probably two or three weeks feeling so bad after just a little bit of excercise. It must’ve been that my head was still tired from the Prisma ordeal the day before. I may look fine, I may seem to be “normal”, just like before, but I’m not. I wear out easily, and I seem to get vertigo easily. I’ve got a handicap, want it or not.

Today? So far so good. We’ll se how I feel in the evening, after some walks with the dog and another trip to the store – not Prisma or any other store as big as that one, though. I hope I’ll be ok at work again, in a week and a half, and not get overly exhausted and dizzy there.

When I first came home from the hospital after my acuostic neuroma surgery, my husband told me that he had been googling a bit and had stumbled upon this site with Carol’s AN story and a bunch of links to AN resources. He gave me the URL and I ventured to the site, but was too tired to read through the story. I was getting better myself, day by day, not feeling the need to read about anybody else’s experience, simply plodding through my own.

A few days later I decided to read Carol’s story anyway. It was a long read, and the length of the recovery process surprised me. As said, she had links to some resources including the AN Associaton on her site, and mentioned the forums there a couple times, and I clicked to the ANA site to have a look. I think it’s a pretty good site, but I was still thinking to myself that ok, some people may need peer support, but I will just heal here and get on with my life.

Then, the very next day, I woke up crying with desperation and frustration, and started the day off by googling Mark Ruffalo a bit. I had noticed on the ANA site, that he, too, is one of *us*. As little as I still wanted to be part of that us, still thinking that I’ll just make it here on my own, my own way. Which is of course the way, my own way, as we each have our own way, but I didn’t want to recognize that I would be a patient for the rest of my life. In a way.

I also found this Finnish guy, Janne’s blog and his post about his AN experience. I read through that, read the comments, and realized there’s a lot of us, and that it may well be worth it to share experiences. I started to write mine in my Healing Diary page, too, and left a comment in the blog. The comments there are hardly a group or any kind of society of Finnish AN people. Not a discussion really, though interesting to read through.

Slowly I started to warm up to the idea of joining a support group in order to talk with others who have gone through and are undergoing similar things as I am. For like it or not, this seems to be life altering process, a long one, with possibilities of all sorts of complications and this and that. And want it or not, I am an AN patient for the rest of my life. Especially since there still is a bit of the tumor left in my head anyway, and that requires monitoring and with any crappy luck, another treatment of some sort.

At first, I ventured back to the ANA site, looking for their forum. I almost signed up, but then decided against. The forum seemed a bit too organized to my liking. I didn’t have any questions to ask, I simply wanted to find other people like me. So I thought about Facebook, and searched for acoustic neuroma groups there. Ia found two that I asked to join: the Acoustic Neuroma (tumor survivers) and the Acoustic Neuroma Association groups.

Just like me, there are many who belong to both groups. And both groups seem to be great 🙂 There are active people who seem to genuinely care and support each other, share experiences and positive thoughts as we all struggle with different issues in our quest for our own New Normal – and some more or less are there already.

We all have our own story, our own issues, but we all share one thing: we have or have had an acoustic neuroma tumor. Most have had it treated in some way, some have facial palsy, some live with unrelenting pain, some with fatigue, some can work normally, some not. Most (if not all) of us have SSD – single sided deafness. That alone is a big factor in the New Normal.

One of the things I love about those groups is that the conversations can eventually end up being abut almost anything. It can start with a question about driving, or flying or hearing aids or what ever, and end up being about the Aurora Borealis of Lapland or sunsets at the Bahamas. Anything! Because the life of us is not only AN stuff either.

So, through some amount of sneer and resistance, I finally realized that I, too, not only need but even crave for some peer support. I hope, that I can make it through the headaches and fatigue and all to a relatively normal life (of an SSD), being able to work and do stuff with the daughters and all that. Find my New Normal a decent one. And live and laugh and cry with others like me on my way.

It’s not like I had an option. I had a tumor, acoustic neuroma. It was already almost three centimeters big, pressing my acoustic nerve, my trigeminal nerve, my balance nerve, my brain. It was already causing tinnitus, hearing problems, balance problems, head aches, neural problems (numbness points in my face).

Had it grown much bigger, bigger problems would have started. Delirium/disorientation (see Carol’s story), eventually whatever problems a tumor in the head can cause. Brain blood circulation problems, worse neural problems, worse any of the above, and eventually probably failure of all sorts of functionalities and death, I guess.

So yeah, I didn’t think twice when they told me it needed to be removed. And to be honest, I didn’t do much research on the operation and what life would be like after it. I didn’t want to know. I was scared enough of the surgery without knowing it all. The surgeon and ENT doctor did prepare me some, so no, I wasn’t totally clueless. But I only started reading other people’s stories after my own operation.

And now? Almost three weeks after that golf ball was removed? I walk the stairs ok, I have taken the dog out once yesterday, and will again today, for a couple hundred meters walk. I can stand (as opposed to sitting on a stool there) in the shower and wash my hair ok. I have energy enough for some normal house hold tasks, one at a time and then I need to rest again.

Some things that are lost to me right now will return. Like my balance, that is getting back to normal in leaps and bounds. And my energy levels will return back to normal eventually, if more slowly than the balance. And most probably I will be able to drive my car again. Unless I start getting seisures (again, see Carol’s story). Or if my hearing problems become too high of a risk in traffic. We’ll see.

Hearing is the major loss here. Even though the surgeon said after the operation that my acoustic nerve was not damaged badly in the surgery, I have come to realize what the ENT doctor said is true. My left ear will probably never hear properly again. It’s not 100% deaf, but not much short. I don’t know how much of a chance there is for that to change during my recuperation here, but I don’t have my hopes up. I am prepared to be half deaf.

It causes confusion to me, when I don’t understand where noises come from or even what they are, always. Walking down the street yesterday with the dog, I kept her close to me all the time, for I did not hear the cars as I have before, so just to make sure she didn’t jump to the street at a wrong time, just because I didn’t know to hold her tight at the right moment, I held her leash tight all the time.

I can’t hear our daughters speak if they don’t speak up or stay on my right side – haha, staying on the right side of me has got a whole new meaning now. Last week when I had made them some dinner and they were chatting at the table while I needed to rest on the sofa, I could not make out ny words even though I heard them talk. Only because I was resting my head lightly to a throw pillow, right ear down.

With any amount of background noise or people talking at the same time, I lose ability to understand words. My brain doesn’t separate fonetics; i.e. my ears don’t deliver the message properly to my brain. This has been something of a problem to me even before the operation, but now it, too, is worse. I have lost stereo and my good ear has yet to learn to compensate. If it does, and how much, I don’t know.

There might be help for hearing problems. Different types of hearing aids. I read about this implant for the deaf ear, that transmits the sounds to the hearing acoustic nerve wirelessly and creates a somewhat authentic stereo effect. But I guess those kind of apparatus cost a whole lot, and I should’ve had the right kind of insurance to get something like that. I didn’t, and don’t.

The ENT doctor at the puclic hospital said the hearing aids don’t help in these AN cases, so I’m guessing they don’t (yet?) issue those high-end thingamajiggies. So I guess I’ll just have learn to live with this.

And not having a navel piercing anymore. It bugs me a bit too, as stupid as it may sound. But I had a navel piercing, I liked it, and now it’s gone. They needed a bit of fat from my stomach in the surgery, to prevent CFL (cerebral fluid leakage) inside my head. And for that I had to take the thing out before the surgery, and naturally they had to take the fat from right next to my navel, so it was bandaged and bruised and stitched and whatnot for way too long.

Yeah, I can always get a new one. Maybe I will, maybe I won’t. Right now I don’t think I will. The first months of that were so uncomfortable. And right now I’m done with uncomfortable. Well, not done as in reality, unfortunately, but mentally most definately. Sick and tired of feeling sick and tired.

What more? The surgeon could not safely remove all of the AN from my head, with the risk of causing brain damage too high. So, though the tumor in itself is benign and won’t be metastasizing, the remaining part may well start growing back. So, want it or not, I’m still an AN patient and not over and done with it after the op. I will be monitored and with any amount of bad luck, need another operation sometime in the future.

In the mean time, my job here is to preserve my life as it is and as I best can. Get my balance back, learn to cope with the mostly deaf ear, get my energy back. Avoid stress, above all. As for right now, less than three weeks from the operation, I still am at some amount of risk for complications like meningitis, CFL, blood vessels breaking in my head. The most vulnerable times are over already, but still. And above of all, stress feeds the remnants of the tumor.

All in all, I could be much worse off. They say that if you need to get a brain tumor, AN is one of the best ones to get. It is benign, can be operated (or radiated, while still relatively small), and generally does not cause too huge damage once removed. And I am recovering quite nicely.

But when people ask how I’m doing and I respond “quite ok”, it does not mean that I’m enjoying my sick leave as an extra vacation. It means that I’m able to walk, shower, fix cappucinos in the morning, am not sleeping all day long though need to rest a lot, my head ache is moderate (to almost none due to pain killers), I’m slowly but surely taking small steps every day to full recovery. As full as it will ever get.

And that’s what I’ll need to learn to live with.