FML

Scrap the previous post that I did earlier today - it appears that I am not allowed to be on the trial because I have had a second line of treatment (being my red devil chemo).

My trial doctor is fighting it out with the German company that is performing the trials. Seems to be a hectic disagreement lost in translation from both parties.

Right now I am {insert swear word here and here and here and here} M.A.D. Universe - cut me some freaking slack will you!?!

Trials and Tribulations

So since my last blog posting it seems as if the whole world has passed by in a complete blur.

I have been caught up with just so much and had so many hassles with medical aid it's been unbelievably frustrating. Medical aids are really stressful to deal with - especially mine it seems.

My doctor gave me 2 options originally:

1. To take part in the trial which is testing a drug called Navelbine or,

2. Go privately and have Xeloda & a drug called Tykerb.

My decision making process was quite easy. The Trials department pay so much attention to what's going on in your body and they observe you on a weekly basis. This is the kind of care anyone could really ask for at the end of the day - besides. It's free! No more niggling and fighting with medical aids for authorisation of scans. Regardless though my Oncologist tried to authorise my other option just in case I didn't qualify for the trial. Surprise - they would not authorize it so option 1 it was!

I am still in the screening process but I will most probably start the new chemo in close on 2 weeks. It sounds like  a bit of an 'easier' chemo but as experienced throughout my journey we all know I am 'special' and the crappy stuff normally happens to me... for example:

Last Thursday I was scheduled to have some Bone Juice (medical name: Zometa) administered through a drip. Now - I was told before that this drug didn't really have symptoms for this  Bone Juice. Only a few handful of people really feel joint pain similar to the feeling of having flu. Was I one of the poor 'handful' of people to get this symptom? You guessed it - Lucky ol me. Having flu like symtoms was putting it very mildly. Day 1...sure. Call it flu - day 2 got worse and really uncomfortable. I had pains that felt almost like strong growing pains. Day 3- extreme pain. 1 minute I was watching the grammys - the next minute my better half found me collapsed in a bundle with my butt in the air on the bed crying in pain. Now I had been taking myprodols like they were smarties for those few days and they didn't do much except for take some of the edge off. I managed to call the doctor on call *stiffling through tears might I add* and she prescribed something else to try help. If that didn't help I would have been admitted into hospital. Thankfully by the next day the pain was about 80% gone and I was back to my normal self.

Unfortunately now with trials there is a law in the agreement contract that should you be of 'child bearing abilities' that you have to use a double contraceptive method. My options were a diaphragm and condoms or have the IUD copper T inserted into my 'lady nether regions'. Now - my options were quite limited because believe it or not we don't have diaphragms in SA so IUD it was. Until I have this done trial will not even touch me with treatment. Sounds harsh but makes sense with chemo being extremely dangerous to a fetus or infant.

I will have my various scans administered this week so they can measure out my leisons before they begin. This is how they keep track of your progress. 

Excitement amounts at the moment. My brother will be coming down in a few days to do the Argus cycle tour and visit good ol home. It's always great to have the family together. Hopefully I will get a few days off with him before he goes back.

Speaking of the Argus cycle tour. My good friend Helen who I call my cancer twin (sounds harsh but we have the exact same diagnosis and going through the same tribulations) will be doing the Argus with her fiance and they will be raising funds for BreastBuddies and the Pink Drive. I am so proud of her and how strong willed she is. Unfortunately my body is not as 'fit' as her but I hope to be doing the 110km race with her in the future. Good luck my warrior friend!

If anybody would like to help her raise funds for the cause give me a shout. For those of you who want to join the cheering in this race...The entire area of Hout Bay will be 'turned pink' for the big climb up Chapmans or as the Pink Drive are calling it 'The Climb for Cancer'. It's going to be a lot of fun if you're thinking of watching the race.

Here we go again...

Yesterday was quite a long day for me. I went through to my moms where we made our way to the PET scan centre. After much waiting and seing people be called up but not to return it was my turn.I was ushered through to a recovery room where I waitied for my radioactive drip. Struggling to find a vein as per usual the doctor eventually found a vein in my wrist. It all made me think really - This radioactive drip...would I gain super spidy powers so I could climb walls and make webs apear from my fingertips? Would I glow in the dark?? Alas - nothing quite as exciting. The injection of the actual radioactive juice was plugged into my drip via 1 hell of a contraption - it looked like something you would find on a workshop table in a garage. Confused, I looked at the doctor and asked 'whats the need for the contraption?'. 'I can't touch it, I deal with so much of this on a daily basis that it's a bit too dangerous'. Ermmmm - and you're injecting that into me? Gee thanks!

After waiting about a hour and  a half it was my turn next - I climbed on up to the machine and was told it would take 20 minutes of going in and out scanning my entire body. My nerves were shot until this point. Everything from here and out I was leaving in the big man aboves hands. 

The results would be ready by the time I went to my oncologist.

Woke up this morning with a really nervous stomach - please, please may this go right for me for once. It would be so nice to know I was in remission.

Alas, on sitting down with my mom and my doctor she revealed results that I did in actual fact have cancer in my liver again and a really small leison in my groin area that she was not too worried about. I'm not sure how but I managed to keep my calm and discuss how we were going to get through this. There were a few options but it looks like I may go on trial again for chemo. At the moment I'm still quite frustrated with life. Take a few steps forward - take a few steps back. It's just so f*&%ng irritating. When will this be done with already?

I will fight it and never give up of course - just my day of frustrations and venting. Warning - not good company at the moment and may bite anyones head off at any given time.

Will update everyone once I have talked things over with the trials team sometime next week. There are a few options with chemo so we shall have to see.

Just come back from an amazing cruise this week. We managed to get a good deal on Groupon for the 2 of us and left Thursday night from CT to Durban for 3 nights. Wish I were still on it! It was so amazing just having some time to relax, no phone signal, lay out on the sun deck, spending time with my hunni and friends, to be waited on hand and foot and having the occasional swim. The coolest thing of the trip was celebrating my finishing of treatment - Yaaaay! We spent a day in Durban as well at Ushaka Marine World and stayed in a nice Hotel on the beach. Was a short 3 day off work holiday. Hopefully I can take a few more days off when my brother is down in March. Can't wait to see him!

On The Thursday of our departure day I said goodbye to my last radiation session. 45 sessions overall were done. My skin was not too happy with me I must say. Over Christmas period my skin got a bit of a break. My neck area looked terrible with skin peeling and how red it was. Skin is still healing from my last few sessions. The skin almost looks a bit dirty from the radiation. Still peeling a bit but it will get better.

My radiation nurse saw my skin on the last session and told me I should not wear a bra. I looked at her with complete disbelief. 'Where do you expect my prosthesis to go if I don't have a bra?'. 'Don't wear it, you should not have a bra on because it will irritate your skin even more'. 'Errrrrm - do you know how lopsided I will look?'. "It's ok, it's not forever' she says. My reply was 'Do you know what it's like to be so young and have 1 boob only that you look like a deformed freak? Do you really expect me to walk out in public and work like that?, do you have any idea how many stares you get? Walking out my house without a prosthesis is not an option my dear!' Really now...I like to feel normal as possible and not like a 1 boobed freak thank you very much. I have gotten used to it but looking at your mutated chest is not a pretty thing.

After a lot of struggle with the medical aid I finally got authorised for my PET scan. After doing some questioning with some old trial nurses I bumped into they told me that the technology down here is quite more advanced than what they have in Joburg and Pretoria hence being cheaper and more likely be authorised. They managed to negotiate a rate of R10 000 instead of R18 000 and I would not have to pay in a cent. What a relief. Helps to complain and speak to people higher at Discovery I guess. Don't ever throw in the towel when it comes to medical aid. May that be my advice to any of you!

On Board The MSC Melody with my <3

I am really nervous just thinking about having the scan. It'll be on the 1rst of Feb and the reason of course would be to see if anything has grown at all and what really is in my liver now. On the sonar scan there was a shadow of some sort left over but it did not appear to be cancer according to the doctors. It'll take a day to reveal the results - most probably the longest day of my life!. Just so nervous about it because I worry something is growing. I know I always will in any case but there's always that little thing that plays on the back of your mind saying what if? The writer, Lisa Lynch who inspired me to start blogging after her fight with breast cancer recently revealed that she now has cancer that spread to her brain and bones. I read her blog now and still as amazing as she writes it's sad to see her not really have a fighting chance left. It's scarey and I felt like a bus had hit me when I read the news - she was my inspiration to kick cancer up the ass and change my whole attitude. I will remain positive as hell and people seem to think - you're over it. Live your life and be happy - stop stressing. You never do though and it seems as if it's only a cancer survivor/ fighter who understands that.

Please keep me in your thoughts on the 1rst of Feb - will keep positive and hope that I have the Big Man above looking out for me.

I had to giggle at myself driving the other day. I was getting ready for work the other day and on my way 2 blocks down the road I look down and notice I'm ever so lopsided on my chest. I forgot my fake boob at home. This was something I simply had to go back home and fetch - my 'deformed' form would never go un noticed!

Theres moments like this and onces where I loose it in my house because if it's too hot I just whip it out and throw it somewhere. Then, just as I am about to go out I'm frantically looking for it. The thought came across to many girls I know growing up and saying 'If only books were detachable' - naaaaah. No thanks. Here - have this one!

With this hot weather it's a bit torturous at times. It's either so hot to have the prosthesis is/ not being able to wear low cut tops & dresses outside of home and not being able to wear a swimsuit so I can take a dip in a a friends pool. Think I might invest in a surfers rash top so I can maybe go to the beach or swim at my moms place if I have the need.

With the new year upon us it made me think quite a bit about what I want out of this year - something has gotta change and fast. I see this year as a fresh start where my 'clock' goes back to the beginning and I can make some change for the months ahead. I may be freakishly unfit but that's got to change - I started doing a bit of walking to get slowly fit. I'm eating a bit better and trying to make changes in my life for the good.

In a conversation the other day with my better half we were talking about the last year and a half we have been through. It's been bladey rough for us and now we're just trying to look forward and hope for the best. The thing is - it's better said than done. It's not so easy to 'undefine' yourself
because now I have the challenge of staying cancer free, I want to write my book and we're going to have to get through this lawsuit as well. It's not something you can just transform from - it's a very long process and what I have been through has defined who I am majorly now. It's quite strange.

I'm sitting with the frustrations at the moment with my Medical Aid - nothing in the world makes me as stressed out as them. My doctor wanted me to have a PET scan done in this month 
so we can define what my treatment plan will be. Discovery calls me yesterday and says 'sorry, your application got declined because there is nobody in the western cape who can carry out this scan on the network.' Uh hem - excuse me? What would I have to do in order to get one? ' Well - you would have to live in Pretoria or Joburg'. I beg your parden? How is it that Nobody in CT has ever needed to have a PET scan done here? Regardless of things I called my broker up 
to sort it all out - my nerves are shot every time I speak to them.  I feel like I am dealing with  complete bafoons. Not a chance I can afford about R20 000 for a scan!

Woosaaaaaaah.

I'm hoping everyone had a really good Christmas. We had a relatively quiet one with the family.
Christmas eve was spent with my family with a divine dinner fit for a king and as per tradiation visiting the Christmas lights in Bothasig. Christmas day was spent with the better halfs mom for Christmas lunch. What a feast...

I got some news last week that my radiation is actually scheduled for longer. I thought that this would be my last week when in fact my doctor wants me to have a 'booster' round for my scar tissue areas where the mastectomy was performed. I was so disapointed by the news - I was hoping the New Year was going to start off with a clean slate and a 'new me' but sadly I will only be completed round the 13th of January. I trust my doctor with these choices - it's just been a long haul. My skin is starting to hurt. It itches, peels, burns and resembles something like a surfer has when they chafe their skin with their wetsuit. I still won't be able to use creams and fragrences for a while after and I need to stay clear of the sun. Believe it or not I can't even use sunscreen because of the ingredients in it. It causes reactions and makes your skin react in quite a bad way.

The news recently is still all very surreal. It's really hard to take in mentally and realise that 'I'm alright now'. It's a strange comparrison but it's as if I'm this puzzle thats been built since I have been diagnosed and there is a piece or 2 missing to make me complete. It's unbelievably hard
to process and leaves my emotions all over the place. You would never have thought so...

Over the Moon!

Today I am the happiest girl in he world - I am so amazingly overwhelmed right now that

I should probably let everything settle in before I update my blog but I thought while

everything is so fresh I should probably get a start on it all...

My day started off a bit emotional - I seem to get these waves of emotion at times for the silliest things. I was sitting in the woolies parking lot after getting a snack to eat for breakfast and I saw a pigeon get knocked over. I didn't realise it at first because the culprit car did not realise at all until I saw the pigeons mate viciously circling it's mate in a worrisome way wondering why their fellow flyer was not getting up. I was all of a sudden a weeping mess. I feel so much for anything that looses their mate in life. I could not think of anything worse. Life is seriously just too precious - even for a pigeon!

Anyways - So after radiation I set off for my doctors appointment which was a follow up up for my radiation sessions. I was really quite nervous about this. I didn't mention it before because I didn't want anyone worrying more than what I was but my last CT scan results showed some spots on the lumbar colum. I was really worried it started spreading to my bones. So - I sat down with my doctor and she started going through the report with me. I had the report previosuly when I was in ICU but you never understand doctor jargon talk. She said that my liver area was clear and the spots on my lumbar column was not cancer (as I had feared) it was instead my dense bones causing little holes from all the treatment and the chemo closing the holes up. These are the holes that were seen. I sat there in question with all the info going through my head - is what she saying for real here? I have no cancer then? are you sure? I was clear of all traces of cancer!

I will finish my radiation around about 28 dec and in the New Year my doctor wants me to go have a PET scan to see if anything creeps back or to see if we missed anything along the lines. Should it stay negative (which I really hope for!) then we can just go with monitoring or alternatively have a course of 'maintaining' medication thats similar to Herceptin. Should something come up then I can go on the trial that has just opened up and that my dear friend Helen is on. We don't want that so positive thoughts all the way here people!

(a few days later...)

Recent news still hasn't really sunken in - it's all so surreal. I have been living this life of having treatment to treatment and now it's almost like - 'now what?' kind of thing? There are so many mixed emotions that I'm not sure how to feel. Happy - yes, very! but it's almost like
playing a game of russian roulette. You see - with my original diagnosis it was quite bad and I was always told that this would be a very hard thing to fight off and reoccurence is quite
a common situation in these cases. Remain positive sure - call me miss positivity but I fear this feeling of a 'bullet going off' at some point. After speaking with a few people who have been through the same kind of story they told me that no matter what stage you are at - you will always have that feeling. It does get better though. Just gotta keep fighting the fight and believe in the big man above.

Last Thursday on telling my boss the news I asked her if I could hand out an award to a very special person who plays a big role in community service within RE/MAX PA. Gary ran for me with several others at the Darling Marathon this year. I felt like I wanted to break the news at the year end function that evening and ofcourse to take that oppertunity and thank Gary as well as all the other collegues and friends who support me so much. It all seemed very suiting.

The response of everyone was phenomenal - clapping and some even with tears in their eyes. I was a babling mess as usual when I talk and half my planned speech was forgotten but none the less Thanks to all for their support was mentioned. So many hugs and kind words were said to me after it was truley amazing. For people to call me an inspiration and someone to admire is extremely humbling. I'd never in a million years think of myself as that. I always tell people that if they were in the same situation they would do the same but they don't seem to believe me... I posted a saying on Facebook the other day saying 'You never know How strong you are until being strong is the only choice you Have'. Never have I heard something so true in my life. The day I was told how bad my diagnosis was - a million things went through my head - The no.1 thing was 'I can't do this' and 'I can't put my loved ones through this'. I really didn't think we would be able to get through it all but we did. My family who was always there especially my mom who took me to all my appointments and was
there for me whenever I needed someone. Always changing her shifts to accommodate me
and be there no matter what. My better half who has been through so much with me. Sat through the tears and always helped me out with difficult situations and mild stones and cheered me up when he was already bearing so much on his shoulders already. Without you - I would not have been able to do this. I love you all so much.

This may sound like the cheesiest paragraph ever but never can such a sickness open your eyes more. Even without such predicaments in my life - lately in the last month life has seemed ever so precious. Even without such diseases and illness in life - Life is just so short. I have heard so many stories around friends and aquaintances lately that involve loved ones dying and the surprising thing is - nothing was wrong with them whatsoever. They were all young and fit as can be with nothing wrong! Anyones life can be taken away in a heart beat whether you have cancer or not. Seriously - stop fretting the small things in life and just enjoy the beauty in every day that you have been blessed with with your loved ones.

Ok - enough already with the cheesey supreme paragraph above.

If I don't blog before xmas - have a blessed one and thanks for keeping up with the posts.