It is strangely ironic at how time flies when you are facing some massive hurdles. Why, you ask? I guess the biggest reason is because you start living to schedules. When you were a child life was all about the FUN; how much fun you could jam in to every moment because children live in the present. They don’t have the concerns of when they need to go to an appointment or when they need to have dinner ready or even when they need to have a bath, because usually all these things are done for them until they get to a ripe age and responsibility and independence starts creeping in! hahaha lucky buggers!
But for me these last few months have flown! And they have been busy! And I know that I have been absent in this arena… but for good reason; though I have still been very present on my social media pages!
In June I progressed with the commencement of Pembrolizumab (previously known as Merck’s MK-3475) and now referred to as “Keytruda”, which I receive infused treatments every three weeks. I have been fortunate to be granted access to this drug for two years on compassionate grounds. This immunotherapy drug has been deemed in many medical articles as ‘the miracle drug’ for its life extending success through current clinical trials and it is the first PD-1 inhibitor to gain FDA approval in the United States. Here’s hoping that this tagline has it’s own success on me and many other patients who are in similar predicaments with this disease. Since being on the drug I have had very minor side affects to date. Fatigue is always a lurking beast but sometimes I wonder if it is more from the mental preparation and anticipation of hospital visits and my dreaded ‘cannula-phobia’. You see it’s never nice when nurses pretty much deem you as “the worst veins they have seen in six months!” Not only do I have ‘cannula-phobia’ but I have ‘bloods-phobia’ too, because if I don’t get my favourite and most lovely nurse to take my blood then it’s all over red rover and my teeny-tiny little veins close up for business! I regularly look like I have had a bad case of Chinese Burn on my precious left arm because, I only have one arm that can play the ‘Needle Wars’ considering that the right one lost it’s battle to four major surgeries and an intense four weeks of daily radiation that has left me with a swollen arm; loss of some fairly decent nerves and it is now sporting this wicked sleeved burn that all identify it as ‘useless’ for our pointy friend!
I have had one set back so far on this particular drug journey when my liver enzymes decided they wanted some time out, so my treatment and my precious schedule were delayed a week! Other than that I have been doing pretty great!
The next major move in Australia is to get this drug approved by the Pharmaceutical Benefits Scheme (PBS) so more Australian’s can access this life extending treatment. Watch this space Nakeds!
So… here is the big SO! After only three treatments we saw significant reduction in all but one tumor. Pretty good going considering I have a multitude of fairly decent sized tumors on my lungs and one little bugger that was poking out like a gob-stopper on my stomach, which I am pleased to say is a shadow of its former self and is only a slight discolouration presently after having reduced dramatically. But don’t get too excited Nakeds… yes this is a huge “Yay!” moment and I will take any win on this journey that I can get, but the yellow brick road to the land of Oz is a very far off dream, but I am most definitely not putting it out of the equation, because amazingly dreams can come true! I am now five treatments in and expecting my next round of scans close to Christmas.
Are you exhausted yet? Hahaha well we haven’t even scraped the top of it Nakeds so leave that kip for later!
My family and I were blessed with the news that my sister (my best friend) is pregnant, hurrah bubba!!!!! And just like that… everyone started giving birth! I think I had eight girlfriends pop out their little bundles within two months and our own family were blessed with a new nephew as well, baby Ethan! Amongst all the baby news, our own little fur-baby was going through some of his own little battles of manhood… you guessed it! IT’S OFF WITH HIS BALLS! Hahaha! Has it changed him… hardly! He is still the biggest terror there is, sleeps a little more but give him an opportunity and he will take a mile! He thinks he is BOSS! Pffftttt!
Ant and I went on our first family holiday with the little dude to celebrate our two year anniversary in July and stayed in the most delightful cottage in Montville! Winston loved his adventure and the roaring fireplace! This dog is addicted to heat I tell you, it’s odd!
I have spent the last few months redesigning my blog transferring it from a hosted to a self hosted site and learning all things technical in the blogosphere! It has been a HUGE challenge! Costly, crazy and killer but I have enjoyed the challenges even when I have lost hope because I am learning so much as I go along. And for me, I do like challenges but I have found that it is so very important for me now that I am not working my executive life anymore that there is a need to keep my mind active and challenges mean that if I can find a resolution at the end of it, then I am winning! Plus I am doing two courses at the same time and throwing myself into my passions, and business ideas and really loving that I have the opportunities to learn and grow even with this black cloud over my head! So continue watching as the blog transforms!
I’ve thrown myself into yoga! In a massive way! I LOVE it! Yoga use to always be my thing, my escape from work and my one hour of sneaky “me time” that I enjoyed a couple of times a week! After the many surgeries I endured, I lost a lot of strength in my right arm. I have what is deemed as ‘high fracture risk’ in my elbow due to the extreme radiation. Hatha was out for a long time and gone were the days of the downward dog… but I was restless. Then after I decided my made up fear of fractures was chucked to the sideline, I threw myself in to Kundalini and I have never loved yoga more! I am still very inexperienced and damn the ‘breath of fire’ gets me every time (probably those pesky little buggers on my lungs who are hating the oxygen influx) but I love it and I love the sense of relaxation and peace that only meditation can bring! It truly has been a sanity saver for me!
I did a weekend Wellness Workshop with 48 Degrees Raw Café; increasing my knowledge further about all things raw, toxic-free and holistic health and I have attended some amazing events along with meeting some beautiful soul-inspired sisters!
I visited a magical land of crystals with my soulie Penny! And realized that I can literally chew a person’s ear off (in conversation of course!).
I celebrated my dad and Ant’s birthday’s and watched scotch guzzling acrobats perform musical heroics without harnesses!
I became addicted to The Bachelor Australia and Amazing Race Australia. Serious reality TV fixes right there! Don’t worry they are both over and Ant has reign once again of the Box!
And speaking of Ant… well he asked me to marry him! Fancy that! What a crazy chicken! In true ‘me’ fashion; amongst many tears I did ask was he sure about that… on bended knee and all, hahahha! But that boy has his sights on me and I on him and damn it he rocks my world like no other! So in a beautiful hinterland cottage, with roses, roaring fire, some jazz and some delicious food, my little romantic proposed and I said YES! And then in the wee hours of the following morning he whisked me down the mountain and floated away with me in a hot air balloon over the Gold Coast hinterland, ending it with champagne brekky (shhhhhh!) at a vineyard. Amongst all the dramas of our lives, our love grows like no other and I am so in love with this beautiful bearded fella!
On the weekend with about 80 or more friends and family in tow, we celebrated our engagement in the most iconic whisky bar there is, surrounded by vintage décor and old school music… so much laughter that my cheeks are still hurting! So like all good posts, they should end in celebration, and what better way to sign-off then to with a celebration of love! Through the darkest days there is always light, it is whether you choose to see those moments that tests you as a human. Love is a beautiful friend, that you either welcome or dismiss and when you know that you can’t escape it makes the beauty of it even more sweeter! Don’t fight it, open your heart to love! I have and it’s the best decision I have ever made!
Now… let’s plan a wedding!
With love, light and big sloppy kisses xx