Blogging…is it for me?

With so many thoughts running through my head on a daily basis, I’ve thought more and more about blogging – hubby does it, friends do it, hell, half the world does it – so why not!

A little background on me…I’m a 49 year old Norwegian/Brit, who came to the US in 1993 after I met and fell in love with a GI named Greg! Before that I lived life pretty much traveling and living…everywhere! Life started out in Norway, but brought me to the UK when I was only 16. After the UK, I traveled around A LOT!! Lived in Greece, back in Norway, Canada, Holland, Germany and that is where I met the love of my life! I was under NO circumstances going to marry a GI and move to the land of the big BX, but, life intervened and I ended up in Montana for 7 long and miserable years! True love I tell ya!

We got orders to FL and lived there for a few years before Greg retired and we moved to Virginia, the hot-bed of government jobs and we spent 10 years there before ending up in Huntsville, Alabama – the best kept secret in the world! We’ve been here for just over a year now and this is where we’ll stay – we have a great life, a great house – trying to stay alive and healthy!

This blog will cover some of the past, some of today and whatever happens in the future – since I haven’t blogged before, it’ll be trial and error and I am sure I’ll change EVERYTHING in the next few months!

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Waiting…

One thing that we learn as cancer patients/survivors is waiting!! For results, scans, appointments…always waiting! Not one of my strong points, rather the opposite!!

My appointment is on the 25th, then I’ll find out what the Onc/Gyn has planned to do with the pre-cancerous VIN III cells…if I were a betting person, I’d say surgery – but, he might have other plans – and I trust him, 100%, always have – he’s aggressive and I like that in a doc, any doc!

I had a min-meltdown last night…of course at 3 AM, so hubby wasn’t around to unload on – I ended up hugging the kitties and waited it out! Not sure exactly why I had the melt-down, not my usual MO, but, hubby told me his boss’s wife is having serious liver/kidney issues and they are checking to see if it possibly could be cancer! Seriously! Are there anyone in my life who’s not affected by this damned disease in some way or another? A friend, a family member? Or was I naive and thought it only affected a few? Having lived with cancer so closely, with my mother, my mother-in-law, my aunts, I naively thought it only affected “us”…but, every day I see people posting on FB, on Instagram…them, their friends, their families. So, yes, cancer SUCKS!

When I started this journey it was a “oh, I have cancer now” – it was always a question of when, not if, in my mind…I didn’t go through the 7 stages of grief – but, after getting the news, picking my jaw off the ground and started fighting…options, doctors, hospitals, trials – you name it, I looked at it…I joined FB groups, chatted with others, did my research – which by the way, can be extremely dangerous – too much information is a bad, bad thing, especially if you don’t know how to interpret the information! One thing I discovered was that a lot of ladies felt very sorry for themselves, or clueless – AND, many of them had little to NO support system…which was completely foreign to me – I still don’t feel sorry for myself and…I had, and still have, the worlds best support system in place!!

So it makes me wonder (for the 100th time), is THAT the reason I got cancer? To help others? Spread awareness? Mentor others? Learn about the illusive “patience?” I think I’m at the 1.5% mark on that one! I reached out to one of my FB groups, and got exactly what I needed, support and understanding about my mini-meltdown – apparently it’s normal! 😉

I know this post is rambling…it was like I had a freaking aha moment at 3 AM…more thoughts and ideas after 26 months of this shit…really?! It was like my mind was in complete overdrive, and I just could not shut it off! Today is much, much better – I got my head in the right place, I know I’ll be fine and there will be a plan come Tuesday. Until then…cancer will continue sucking, but, I’ll deal with whatever!

More cancer, biopsies and follow up…

Went to see my Gyn/Onc last week for my 3 month follow-up…about 2 weeks beforehand, I felt “off”…unable to decipher this off feeling, I just went with it and knew I was seeing the doc & would (hopefully) get answers. Then I got this “fluttering” feeling a couple of times, radiating upwards from my “lady bits” and I remembered them from before I got diagnosed…hmmmmm

He found a couple of tiny lesions, and instead of waiting and having them done at the hospital under anesthesia, I was a brave (& in hindsight stupid, really!!) – and had him do them in the office!!! Holy crap! That hurt! They told me 2 weeks for results and I drove home, sore as hell and cursing all the way! I mean really, I coulda had a perfectly painless procedure and been legally stoned at that!

Headed to FL on Tuesday and even if I swore I wasn’t going to call them, I did anyway and left a message this afternoon – aaaaand, they called back, biopsies showed VIN III, which is pre-cancerous and often referred to as Cancer stage 0. There are a few things they can do for that,  surgery –  a lovely procedure called a vulvectomy…don’t ask, you don’t want to know. Then there is laser removal and the jury is very much out on that one. The last is topical creams…not hearing good things about that and I am thinking I’ll go the surgical route – my Gyn/Onc is VERY aggressive and I KNOW he’ll do what’s best for me and try to stop this from becoming invasive.

So, for about 1/2 hr I had a tiny pity-party, had to collect my thoughts, and of course share on FB with all my family and friends – now, I’m ok…I’ll deal the same way I’ve dealt for little over 2 years now – whatever is thrown at me, it’ll work out.

I’ve come to the sad realization that I will have to live with the possibility of this happening on a regular basis, be vigilant and keep seeing my Gyn/Onc…but, I’m still alive & I’ll keep fighting to stay alive! Somebody has to share the “positive” aspect of cancer…and there are many, really! I need to stick around to help others, “gently” remind them to get their check-ups and mammograms (ok, not so gently, I’m like a pit bull with a bone!!)…sucks to be us, but we hafta take care of ourselves!!

Collecting!

I’ve always collected…well, that’s not quite true – I didn’t until about 20 years ago – I didn’t like anything my mother brought back from her numerous travels, her Murano glass, her Japanese dinner set…I was all about “less is best” and didn’t buy stuff in places I lived, I think I have like 3 things from my 2 years in Greece that I carried with me over the years! But, after I got married, started putting down roots (& discovered eBay) – I started to enjoy “stuff” – from things that reminded me of my grandmother and mother, to miniature booze bottles (I still have over 400 packed away) – the chase to find them became the thrill and I spent H O U R S searching for the best deals and neatest finds! I even drove to Canada once to pick up an auction I won – try explaining to the border guards what you’re doing with 25 miniature booze bottles!! The rest came from various stores, various countries and from various friends.

Then I went through a period of no collecting…only bought new, enjoyed what I had…some packed away, some displayed – until we moved to AL, got a new house and then my aunt sent me a link on to a group on FB and the damage was done! And this time around I’m having some serious fun finding deals – they all tell a story, they all have a connection to something, a place, a person and a memory! I’m primarily hunting for Scandinavian Retro, but, also have a few Italian pieces added in – I’m obsessed with 60′ & 70’s stuff…Cahrineholm, Gustavsberg, Figgjo, Egersund, Porsgrund…I decided to collect only a few pieces from each manufacturer, I SO don’t need 80 pieces of enamelware and what is the fun in that, really? When I can have a bunch of different pieces I can look at (dust) and admire! After I found Pinterest, Etsy and eBay my wallet has never been emptier and I have never had more fun! I know my mother is sitting up there, laughing – ’cause I was under NO circumstances going to collect anything! Come to think of it, I have become my mother! 🙂 From her collecting of shiny things to her love of high heeled shoes – throw in gardening, travel and love of food and yup, I can see her in pretty much everything I do!

Cancer…

oh, where do I start?

I guess from the beginning! I have always thought I would end up with breast cancer, like my mom and aunt. But, that wasn’t what happened – I had a hysterectomy in 2002, to ‘ensure’ I didn’t get cervical cancer, due to my family history and medical issues I had back then. So, when I found a swollen lymphnode in my right groin in the summer of 2012, I wasn’t overly concerned and neither was my doc when I went to see him – they did an ultrasound and were unable to see exactly what it was & I was sent to a surgeon, who thought it was a possible infection and mentioned “cat scratch fever” – I seriously thought that was just a song!! He did the surgery, sent the node off to labs and called me the following week and all I heard was”Mrs. Barath, I am sad to say we found Squamous Cells in the node, you need to see an oncologist!!” I was too stunned to react, I was supposed to get breast cancer!! I was referred to a local oncologist and Greg and I went to see him on Sept 21st, after I had a Pet scan done – that was a story in itself, sitting in a mobile unit, looking at containers with sculls on them…didn’t feel too optimistic! But, I don’t think it had hit me at all!

We walked into his office, he looked at the scans, turned around and calmly told me “this is very serious, you don’t have long to live and there is nothing we can do about it!!” The room went quiet, Greg and I just looked at each other with dropped jaws and all I could think was WTF!! We tried to ask questions about treatments, we tried to ask for information and all we got was negatives, nothing that could be done, treatment would only be palliative and give me some quality of life for the remaining 6-9 months I had to live!! Too stunned to do or say much, we left, determined to fire this guy and get more opinions, and while Greg had to go get something, I sat staring in disbelief…until I called Cancer Centers of America! I had seen their commercials and all I kept thinking was “no expiration date!!” I spoke to a lovely lady named Karen and she told me flat out “you need a 2nd, 3rd and 4th opinion!! Our insurance got contacted and they made it clear I would be covered for whatever…wherever and with as many doctors as I needed to see! Armed with this information Greg and I began to see and think a little clearer, still stunned, but clearer – all I kept thinking was “HOW?? I’m not sick, I don’t feel sick, I don’t look sick! How is this possible??”
We saw another doc, he gave us hope, hope that something could be done and should be done…I needed an Onc/Gyn, and long story short – I ended up at Walter Reed thanks to my most wonderful neighbor Tom…who surely helped in saving my life!

Now for a little background on why everyone but us believed I was surely dying for the longest time, along with the lymphnode & the cancer they could not find, my liver lit up like a freaking Christmas tree – I had 4 very distinct lesions and they didn’t look good! In my head however, I wasn’t sick and stuck with that belief – and it was decided to do biopsies of the lesions to verify – they had NO idea where the cancer had originated, I had nothing “down there” to have cancer in, but, Squamous Cell cancer has to start somewhere and they remained baffled – 2 painful biopsies later and I was told “nope, this is NOT cancer in your liver, we’re not quite sure exactly what it is, but it’s not cancer!!”…I felt vindicated! Fast forward and after TONS of tests & scans, it was decided on systemic chemo since it was still unknown source and with apprehension I went to my first round! I watched my mother go through it and it wasn’t good…:( As I watched the chemo dripping down the tube I was scared shitless…aaaaaand, nothing! I didn’t feel a thing, it didn’t hurt, it didn’t sting and all I kept thinking “this ain’t so bad…” – they gave me GREAT drugs to combat any side-effects and they worked! I didn’t get sick, I had no nausea and all I wanted was food! It took 5 hrs and after I was done we drove home and I was starving! This is how it was through the entire treatment, no side effects and I ate everything in sight! Gained 25 lbs and while I had minor stuff, like aches, pains, the obvious hairloss and some exhaustion/fatigue I made it through it rather effortlessly!

During all of this, the support I received (& still do) was incredible, from family and friends ALL over the world…prayers, cards, messages, gifts (of chocolate!! Thanks family!!), Greg was by my side every step of the way – until he had to leave for AL…during all of this he got a new job, I had pushed SO hard for us to leave, no way was he NOT leaving and Mom (in-law) came to stay with me – I had another scan to see how things were going and dammit, it lit up!! Now they had a specific area, so more surgery it was needed – doc removed another lymphnode and the source of everything, a Bartholin gland on the right side – but, didn’t get clean margins :(. I knew I was leaving and nothing was going to stop me…not even more cancer! After some searching I found the Doc that I wanted to see in Huntsville and set about selling, packing and leaving! Sold the house in record time, packed up the whole house, found a house here we both loved and when Greg flew up to get me I was SO ready to leave! We arrived in AL on May 5th, I saw the house for the first time & we signed the next day! Fast forward to May 8th and I met with my new Onc/Gyn here and I knew the minute I met him he would do everything in his power to cure me!

We decided on the most aggressive treatment, surgery and then radiation on both sides! Wow, surgery was tough and painful…I healed up for a few weeks and off to radiation it was – again, not as bad as I thought it would be – however, it lasted for freaking ever – 28 rounds and when the last day came, I was D O N E!! That was in September, just a year after I first got diagnosed – since then  I have had clear scans, a few biopsies of lesions that keeps showing up, but with an aggressive doc who doesn’t play the “wait and see” game I feel pretty confident I’ll be sticking around for quite a while longer – the fear I will have to live with for always, the possibility of lesions, the possibility of it coming back is always there – but, I have faith, I’m optimistic and most of all I have a strong will to live…I wake up every day, happy to be alive and while it’s been one hell of a journey, I firmly believe it happened for a reason…haven’t quite figured out yet what that reason is, but in the meantime I share my journey with others, to help and give hope!