Sunday, May 17, 2015

So it's been a while since I last wrote here.

 A very LONG while. I've been so busy the past three years. And I dropped off blogging in favor of FB .

 You can't beat the instant interaction there. But also something else snuck up to me. This Friday, is my SEVENTH surgery day. It's been seven years since I got my robot ear.

 A long time, isn't it?

 But it's also  my fourth cancerversary. Few friends know that I found my tumor on my own, on a day  that for me was a happy day. A day that started my journey into something new.  And a day that I had to swallow a bitter pill as well. Because, yes, I have a surgery day for my mastectomy, but I consider that journey started from the moment I touched it.

 You can't describe the joy of hearing.

 You also can't describe the panic of the what if it's cancer?

 You can't describe the thought of feeling like your life started with hearing better than before.

 You can't describe the thought of death - because that's what you think when cancer comes in your mind.

 Yes, I can hear. Yes, I'm here. Yes, I love hearing. Yes, I found the tumor early and I've had a happy ending with that.

 But...I've gotten to both wanting for May to come here, and dreading it as well. It's a bitter thing to have.

 Before, I ignored it. I used to say, "so, what? I'm not the first, and neither I'll be the last one"

 Today, I'm facing it, and I'm embracing it. Because the day will always hold both sweet and bitter memories for me,  but, I'm lucky.

 I've gotten a lot of amazing things.

 I've gotten some amazing friends. Some are near, some are far, some are in the far flung corners of the world. Some have a robot ear or two , like me. Some are just genuinely hearing. Some wear HA's. Some have been through the same breast cancer journey as me. And , I've gotten some amazing friends, whom I consider my second family. Wherever they are, they're in my favorites list on my phone. I always reach out to them.

 I've gotten some amazing trips. Some memories that I'll hold dear. Some conversations I'll hold dear. (Hi Kasigirl , whenever you are! )

 The biggest gift I have is the love I receive, and it's the most beautiful gift!

 I thought I'd start this blog with describing how I found my tumor, but it ended up in a completely different vein. And that's ok.

 Just try to be happy, each of you, K? and do your annual check ups. They're done for a reason.

Monday, July 23, 2012

Nearly there...

<p>Hello everyone. As I type this I'm enjoying a crepe at some restaurant. I've been neglecting this space due to my health issues plus I had a lot to think about. </p>
<p>My hair is growing, I've gone to a vacation (and saw a lovely friend getting hitched) and am already planning another one. </p>
<p>I hope I can be back because I enjoy writing here and maybe I will, soon.

I miss the blogging interaction to be honest.

I'm sharing one of the lovely sunsets that I have on my phone(yes I'm blogging through my phone)

Saturday, January 7, 2012

About time to update something that is called my blog...

Oh my god , I haven't blogged for four months.

 But you all know I had a very good excuse ( THIS time. dunno about next time )

 From my last post , you probably know I'm undergoing chemo..To say it was smooth sailing , it would be a lie though.

Always something crops up.Some problem will rear up.But I've managed to do my best with what I was given with.
Plus , I'm blessed with some friends that I'll never forget.I even received some fabulous Christmas cards that I loved! Oh , and cookies!!The box will be a keepsake...I'll pull it out again next Christmas.

 So , you wonder..what's I'm writing in the blog for? Ok , let's get the most exciting thing out of the way first!

  This coming Tuesday , 10 January , will my my LAST Chemo treatment!

 Can I get a cheer for that? I've made it! I thought I couldn't make it , and I had lost heart halfway through the treatment.It's not all cake and roses you know.

 At the last treatment with the first medicine , I had quite a bit of throwing up that left me with a serious nerve headache that nothing could get it off.And I had a messed up arm from a blunder nurse  ( blood draw ) that managed to go through my vein and get a nerve.I couldn't straighten my right arm or reach high bc of that , and always kept it bent.I still favor it btw.It wouldn't have been a big deal as I'm a leftie , but it hurt.And my left arm hurt in the SNB scar area in my armpit.

 Painkillers and exercise helped a lot , but I was grouchy for a time about that.And I started to get scared of any vein needles , and am very nervous about them still.I think I always will be nervous and never will blow off a blood draw like it's no big deal..because I learned it IS if it's not done right.

 The second chemo medicine , was a bit more brutal at start..I wasn't throwing up , but I had some serious bone pain.
Really.I ended up taking some heavy painkillers that also messed with my stomach.After that , it was just being tired.Thank god for that.

 But by then ,  I learned that nothing is smooth sailing.Red cells were lower , they just decided to accompany , now I'm on a weekly injection regime to see if they'll come back up.

I would never have made it though , without the support and love of my friends and family.Really.Even my nephew , unwittingly helped , as he seems as devoted to me as I am to him.When I hear Vivie from  him , I always smile and get excited.He loves anything I'll get him , and he was all over his Christmas present , or so I hear.We also went to the carousel together , and made memories.I have some pics , but not going to post , you understand.Just imagine me though , with little guy on my lap.

 Now on to Christmas , it was a really low key no-present holiday , but that's okay , as long as I don't get any more pajamas! I have quite a few pairs of them , and I'm kinda sick of them now! I used to not wait to get home , change into pj's and relax..ummm that can change! Changed into 2012 with family! Really nice , a nice meal , a LOT of desserts ( birthday cake for my cousin , vasilopita , saraiglakia just to name a few ) and just chatty family.I did get some holiday cash in , that can be either spent on a new alarm clock for the deaf , save up for a trip I want to make , or save up for an iPad that I've been coveting...hmmm decisions , decisions!

 On to hearing news - since I was into bed much of the time , I got into the (bad) habit of not wearing my ear again.I really don't like it , but I have to cope somehow.I am trying to get into wearing it again and upping the time from there , but it's hard bc my energy is fluctuating like crazy.One minute I'll be bright and alert and suddenly , I'll crash and burn.I've stuck to mostly movies , FB and some rare outings with family or on my own , keeping it low key.Fortunately , most of my family and friends are VERY understanding and they say all that I have to finish chemo and then have a stab again.I'm thinking of e-mailing my audiologist and come clean , and ask to start over.I did manage to wear it for a couple hours today.It's a start.

 I don't admit it on Facebook because I'm ashamed , but some people privately know about it , and are very supporting.I'm hoping everyone will not gossip my decision , because it was my own  decision and it's my own life.I do not take kindly to orders, and if you do , you'll experience my rather bitchy temper..

 After my last treatment , I will be considered PFC (= Post Final Chemo ) and will move on to my next stage of treatment.Hormonal treatment.I'm not looking forward to that , not much , but at least that means I'm moving to the right direction.I'll do hormonal treatment for 5 years , be monitored  , and after that I'll be declared officially cancer free.

 My immediate plans after I recover is to go on a trip to recover from the shit year I had.I thought I had kicked it off nice , last year..but , no , I didn't.So , my plans are to go somewhere in possible destinations are England ( for the 3rd time ) , or somewhere Northern Europe.Maybe Austria , or Iceland? Finland? We'll see.

 My dream destination would be either the US or NZ but the tickets are too expensive.And I've never been in a long-haul flight.And flight changes make me a little , maybe if I win the lottery , I'll go bilateral , I'll pay off my condo loan , I'll travel , I' get the drift.Oh , and get a proper DSLR.Yeah , the things you can get IF you had the money.

Oh well. Time to wrap up this missive.

 See you in the next few months , I guess? or whenever I get off to blog again.



Sunday, September 4, 2011

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.


   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!

Sunday, May 22, 2011

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 , 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 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 :)
I'm happier
I'm so appreciative of everything

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 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'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*

Friday, May 20, 2011

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 :)