A new twist...

 I haven't written here for over  three months.

 My reason was a simple one.A health crisis.

  My hearing birthday was on May 22nd , and it was my 3rd Hearing Birthday.Three years since activation.Wow.I was feeling great.I have friends all over the globe through FB , and I was feeling very loved and supported.

 I just had experienced my first travel abroad , even with all the mishaps ( that might be detailed in a later post ) in February.Visited a friend , got surprised , had a fantastic birthday!

 All that can be turned over in an instant.The night of my hearing birthday , I was feeling great.Had dinner outside ( treated myself ) had a good walk , and was chatting with friends , when a pain that kept coming back for a few months , came again.I rubbed it to relieve it.

 A lump.My mind froze.

 A month later , under the know of some close friends and family , and with their support , I had gone through all the testing.Result of the lump : Breast Cancer. ( DCIS , Stage II ). Every other organ in me was clear.And I was heading again to the OR , for removing the whole breast. I had decided on a left mastectomy , and reconstruction.The reconstruction wasn't going to happen if the lymph nodes were positive though.SNB ( Sentinel Lymph Node Biopsy ) was going to happen halfway the surgery.I had raced through all the doctor appts , breast surgeon , plastic surgeon , everything , did every scan , every exam that I was ordered to.

 My mind was on survival mode.But...I have to thank friends , dear friends that I've had either before the journey , or made while I started the journey , that supported me , laughed with me , heard me , and helped me keep my sanity.One in particular , was ALWAYS there for me.Won't name, but.....she knows who she is.

 Fortunately...I survived the OR..And now , I'm halfway through chemo.Doing treatments , recovering from breast surgery and reconstruction , learning to live with a new normal.And feeling sometimes , very grateful , for friends.And for my own luck to have discovered it early enough.

I'm doing treatment #2 on Tuesday.And today I'm officialy a bald head with a CI on.

 Voila!

   My ear ( aka my CI ) wasn't affected at all.There were some risks , but I weighed it out..and I just followed my own gut.

 - NO MRI - even if I could with my Freedom , under certain provisions , but I didn't trust that the guidelines would be followed closely.Not Going to Risk it.
- I did not want to do radiation therapy.There was not much evidence on the radiation therapy affecting the CI or not , so I decided instead to avoid it all together ( there were also other reasons for that decision ) and did instead mastectomy surgery.
 - However , I did bone scintilllation , which was completely safe - nuclear medicine , but it was clear , ( not totally , I found another underlying problem , but cancer-clear , which was all I cared about )
- I did an CAT scan two days ago , and that one was CLEAR too.
- Chemotherapy was completely safe for the CI , as all it affects is the cancerous cells.So , I felt safe doing that, even if it was a poison.Loss of hair did not interest me.I wasn't excited to lose my hair , but I preferred being able to have a long life , rather than hair!

  Why did not I say it publicly before ?  Mostly because I wasn't ready. but also because I needed to process it.It's hit home for me now, that I've had chemo once , and I feel like I can do it.

Also , I felt like I was ready to share.It's a hard and personal decision.Not everyone shares , and I wasn't thinking on sharing...but..there has to be someone that might need this , someone that I can help in the future with this admission...

 And I'm helping myself too in this process.I found it early , cancer is off my body , but because of the staging , I have to do chemo.So what..let's admit it.And be loved.

 Life's too little to care about petty things.Just go and hug your loved ones.Find friends that you haven't caught up in a long while and talk to them.

 Just spread love all around you.I'm fashioning my new do with caps , rags , skullcaps , and I love the versatility!

3 years post surgery...

In honor of my surgery anniversary ( already 3rd one?? Time sure FLIES ) I'm reposting below an excerpt of my Surgery diary that corresponds to the day of surgery...

Thursday 22th May 2008


Nurse's aide wakes me up at seven , and she gives me a calming pill.Which never WORKED.I was SO nervous.I started again walking all the ward , and when I get kicked out , the hallway.Does that make you remember something ? :P I get some last pre op stuff done , and around 8 or so , my parents come in..A nurse brings in the surgery clothes..uuuuh , how do you wear these?
I start joking that with these I'm all ready for psych ward , and everyone laughs!

I got in OR around 8:45.I feel something pinching my left hand..Ouch!The team's trying to put the cardio monitor stuff , but I get shy and hide my chest.Well they conked me out a bit earlier.

Deep breaths...count to ten..OK..one , two , three , five ( I remember skipping 4 and everyone laughs ) I start getting dizzy , I say six...I see this huge mask...and..I don't remember anything else!!

I saw SO weird dreams , I still remember them.Suddenly , I feel hands on me ..Wasn't I in cloud nine ? someone pushing me , slapping me gently...I want to sleep some more mum, I wanna say..but I notice , my mouth can't move much..I try to open one eye..I see something green ( I can't see without glasses much! ) then , my brain feeds me with memories..Jolt awake! The op , the running off , EVERYTHING.I think..I DID it.I pick up my free hand..and I pat myself , yup , bandage here.I start grinning.The doctors wanted me to frown , smile , do some expressions , to see if my side was ok , and , I was grinning.LOL.I did it!

I got disconnected from all the paraphernalia , and get wheeled in my room.While I try to crawl in my hospital bed , I think..whoa , I'm in a HIGH.No wonder druggies are ADDICTED!LOL.I couldn't make a coherent word.Nurse says that I'm not allowed to sleep for two hours , and that I should keep the oxygen mask on my face.They connect me with some saline , and I HATE that.I want my hands free , but I can't protest at all , seeing that I'm completely out of it!

Mum , in an attempt to keep me awake , gives me my cell phone , to start texting..I give it back , saying I can't..since I hadn't paid it.she gives it back , and gives her phone too.LOL! ( afterwards she complained of a high bill! ROFL ) I send the first text , but it was completely blank.Wow.I'm too out of it.she texts back with a question mark.I manage to stumble a response.I'm out.I'm ok.I'm drugged up.She replies back with a LOL, and goes to alert some common friends via net.I managed to text everyone , LOL, and by then , I was allowed to sleep!

Dad left straight back for his work , and mom stayed with me at the hospital , to look after me.I got in a 2 hour nap , and then nurse wakes me up in the attempt , to put some IV medicines.She also brings me some hot tea to drink.I DETEST tea.I drink some though.I couldn't feel the taste.My tongue is completely NUMB.


I even had some visitors the same day.I was feeling better by afternoon , but I didn't dare get up, I was feeling VERY weak ,very dizzy.
Kept napping and waking up and texting...and feeling nauseus!!

Today , I wanted to do something special..

I ended up going to the Salonica Pier where there is always something happening along the length of it , and walked it twice over , and while walking I was hearing other people talking , kids yelling while playing...
*thwack**thwack* Oooh , here's the tennis court!! I should sign up for lessons...
*aaaaaah* I look up...Airplane coming in to land in airport...Cool , I've never heard an airplane! *music* accordion street players!!

Later , I went to eat out..at Savvikos , a restaurant that is open since 1947 , passed from generation to generation , to celebrate..I do my order , and the waiter is a FAST talker , I can't lipread him at all..But I HEARD him and I gave my order and I could communicate...Nice!

As I was paying..another waiter that decided to carry more than he could slipped...and glasses , bottles fell from his hands..*smack**crack**tinkling of glasses being walked on* everyone was annoyed with him ...except me..I could appreciate the sound...all it takes is appreciation...

So , three years later..I've developed an appreciation for music , for sounds , and for voices..( my favorite thing is listening to my nephew 'talking' to me..)
I've gotten friends with CI all over Greece and the globe.
I've travelled.
I've gotten to host friends and tour other friends.
I'm expecting more friends to come over..
I've gotten more confident in myself.
I've realized more things about me..
I've accepted some things too..
I've become a DV moderator
I've gotten some amazing friendships that I think might last...at last :)
I'm happier
I'm so appreciative of everything

But..
I still slip and fall
I still have lousy balance
I still forget things
I still sometimes do slip ups and blunders
I still am deaf...as a doorknob
I still need some accomodations
I still am the same person I was before , I just changed in some ways.
I still want to know more


So..here's to a 4th year full of listening , full of more laughter , full of fun and also , full of knowing myself more , and opening myself to more travelling and more options to me..*raises ice cream bowl*

Knocking on doors.

After reading this post , I understood one more thing about me , that leads back from HA days.

I'm known to blunder into rooms , seeing not the best situations , and even with CI , I can't decipher sometimes the come in/wait a minute as in Greek they are roughly the same syllables and it's a hard to decipher sometimes , as I already said.

My most recent and most embarassing situation was ....nope , not going to tell you :) who do you think I am???

But , on the other side..sometimes , when you're deaf/HOH , you have to cut yourself some slack and recognise that sometimes you ARE going to be embarassed/embarass other people , or both.Happens to everyone, hearing or not.

I try to be respectful , but it's a hard balance , especially with friends that say I act like a hearing person ( I can hear a lot better , and I'm quite a good lipreader. ) so they almost always forget to come and open the doors for me , so , if I decide to not open , I will usually walk away after 5 minutes or so , thinking nobody is in the office/room/apartment/ house/ whatever.

We recently had a talk about that with my brother , as I managed to walk in on him in the BR , thinking it was empty ( in my defense , I was still NOT awake , and the only thought in my asleep brain was to relieve my bladder, plus I'm used in living alone and NEVER have bathroom holdups ) and he did realize that yelling he is in when the handle got turned wouldn't get my attention , as I was totally deaf.He did say that I should check the keyhole if there's light out of it , but that's impossible if the key is in , which it was.We actually had an argument of sorts about it , trying to find a solution.

One solution we had when I was a kid , was a sticker at the ON position for the bathroom.That indicated that bathroom was occupied.Another was locking the bathroom door , but if you're in the stage of almost peeing your pants , you don't have time to do that, plus , what if the key was lost ? Kind of defeats the purpose.A third , was usually , to check if everyone was present in whatever room we were usually ( living or kitchen room ), and then go.

Another incident was in the office of an acquaintance's.I was walking home , after a dentist appt , and thought to drop in and say hello, as I hadn't seen that certain person for quite a time, preparing myself to the fact if he was busy , I'd leave.The person WAS quite busy *ahem* , and to boot it , they forgot the door a couple inches open , so I got in the foyer , "Hello ____ , are you here?" and for response I heard what I thought was , Come in...*ahem*

What do you do in these instances? You just beat a hasty retreat.VERY hasty , and pray they did not see/hear you.

What if you've been ordered to see the principal?

My own principal always forgot I was deaf ,and he'd shout my surname , in a NOISY hallway , to get me in ( I wasn't in trouble THAT often , don't worry ) , and he always had to realize he had to tell someone else to get my attention it was my turn.

Or EVEN when you're on a break in a bus trip and you don't hear the announcement to get back on the bus?
There are many possibilities to get embarassed/stranded/felt awkward , and sometimes , being deaf isn't just that we can't hear or hear properly.It means planning ahead , thinking of any possible hazards , and above all , have a sense of humor.

Sarcasm on ourselves , helps quite a bit :)

Help little Luca to hear!

A few days ago , I was browsing in FB aimlessly , as I was on a short vacation at my parents'.

I stumbled on this Greek note , which I've translated in English for my English-reading friends.

Poor kid..I'm copy-pasting here my translated note off FB , in order to help him as much as I can.

HELP LUKA TO HEAR

Little Luka is a 3 year old kid from Bulgaria , Europe , that was born deaf.The past two years he got implanted with cochlear implants in his both ears so he can hear.Unfortunately , he lost one of his processors the day of his bilateral surgery , and the company told them there is no loss warranty for his cochlear implant processors and no warranty.If the money aren't collected , little Luka will not be able to hear from his new ear ( he currently wears the new processor on his old ear ) and the processor costs 5,000 € which is an insurmountable amount for the family.Help however you can , every donation will help.

I personally verified his family's story, and it is a genuine plea for help.His new ear's activation is April 15th , and he needs it to start therapy and mappings!

The account number is :02/0000000019288077

IBAN: BG85STSA93000019288077

BIC: STSABGSF

Name:LUKA LUBOMIROV TODOROV

DSK BANK bulgaria

The money is in a closed account that will be accessible for withdraw only from the cochlear implant representatives in Bulgaria , so Luka can get a new processor.Please share and help , even 5 euro will help to get to the goal.

FYI - the Bulgaria's currency is the leva , which is weaker than the euro, which is to the kid's advantage!

I wish he can hear...!

An update

I'll do a bullet list since it's been so long without an update..almost three months...ughhh..

• I made my first trip on my own.Went to London , to stay at a CI friend , who also is a very dear friend to me , but the trip was both exhilarating and scary.Had to face myself in a few ways , and some of my biggest fears had to be tackled head on.I'm glad I did the trip , but I also feel half-regret that I did it.Does that make sense? I'm still processing it...I've learned some very HARD lessons, and I have to reinforce them so some things won't happen again...
  
• Also , when I was on the trip , I made a point of visiting Chinatown and the Chinese parade.While I did not see it - too much of a crowd , and me and one friend were very unnerved from that, it was quite the hearing moment to hear the fireworks and the crackers!I also tried Chinese food.It was DELICIOUS.
  
• While at the trip , I could understand almost everyone except my host , which had me frustrated to the highest point.We made it work , communicating via other ways , but I was resenting myself for that the entire trip.Feelings were run a big high...
• Since the trip though , even if it was in London , and I talked almost exclusively in English with a few exceptions , I've seen a LOT of improvement in my speech and my hearing.The most scary was today's speech session : I had to do my usual exercise - where speech recites from a text , and I have a xerox of the text and I follow along and repeat..well , today I did not have a xerox , we did a new text too , and other than having a few repeats, I could hear her..I had to look at her for a few new words , but that was it.That was scary and exhilarating , and when the session finished , I was feeling like it was something I must be dreaming..
• My laptop broke when I got back...since it wasn't worth it to get it fixed , I acquired a new one instead , but meanwhile , I had to make do with loaners for two weeks..I was TIRED of loaners.I got my new laptop yesterday , activated the warranty and I've set down to work that has been neglected for a LONG time.
• I celebrated my birthday while in London , twice.It was a very nice birthday , and actually the kind of the birthday I wanted - even if I never told my friends that , they DID ask me though what I'd like , but I would evade the issue.I always feel embarassed when they're putting attention on me , that's why.But , it was just what I wanted , with an additional surprise :)
  
• I have a new sound : I don't like hearing myself type on this laptop , it's a bit noisier.But , again , my old laptop was an store-brand that lasted 3 yrs , while this one is a well known brand , and I hope it'll last me for at least 4-5 years , if not more!
  
• My telecoil link broke last week , and I had to order a new one.I went today to get it , but they told me at the courier site , that I should have gone to a different shop...HUH?but yours is the closest to my home? I got confused.She told me to call...ummm, HELLOOOOOOOOOOO? she got it after a few repeats , thankfully.She told me , but you can't be deaf! You have impeccable speech! LOL.She decided to get it delivered in her shop , and I'd get there tomorrow to get it.
  
• Braces are going good.I was afraid they'd break while in London , and that wouldn't been the best thing , but they lasted ,and now I'm on a bit of a different regime..put some retainers myself , every morning.That one is clearly hard! Every time I remove one to replace it , I can't help myself but yawn really hard , lol!
  
• Today it's Mardi Gras day in Greece , which is a tradition to bake or fry things , mostly meat and whatever else we will deny ourselves in Lent.We're also in the swing of pre-Lenten Carnival.While walking to speech I saw several families in the pavement having meat on coals , the smell preceding them a block or two.Meats , sausages , steaks , bread , fries , souvlakia , whatever you'd want to eat , was on coals.I also saw SEVERAL motorbikes that were from delivery food places all over the way , one nearly mowed me in the way back! ( In my defense , he was going the WRONG way in an one way street! ).The Mardi Gras harks from the olden days in Greece , where we used to bake meat in fire , and the smell was the food of the Twelve Gods.
  
• Since I was ill the last few days , I'm not going to celebrate Mardi Gras , but stay in , and make a cake for the Carnival party I'm going to , tomorrow.Yummmm.I haven't decided what I will dress up as.
• I've been reading a book about American history , and it was VERY interesting..I haven't finished it yet , but I keep underlining things , googling details , and also , using my iTouch's dictionary apps for new words.I also have been catching up on news, and it's been quite the thump on earth.

That's it...Off to make the cake for the party :)