{ DAY 750 } ❤❤
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UPDATE:
Complex Venous Malformations
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I gotta admit…it's been a bit of a bumpy, hilarious start to 2020…
But I kinda knew this might be the case when on New Years Day (and feeling sooooo positive about the upcoming year) I was greeted by a GINORMOUS BIRD EATING SPIDER right above my vinyl player….🎶🎵🕷
I mean c'mon!! 😱😱🤷♀️🤷♀️
I haven't seen a spider in this house for 5 years and it could have been anywhere else….
But not my vinyl!
It truly was an ominous moment…😂
So as the standoff proceeded and we stared each other out…
A feeling of dread started to creep over me…
The knowing feeling that 2020 was gonna throw a few curve balls and perhaps be a little tough…
The Gargantuan bird eating spider was surely THE SIGN…?♐♉☦🕷
The most hilarious thing was that my beautiful old home has high, pressed tin ceilings…
I couldn't reach the damn thing if I tried…
So inevitably, we were forced to co-exist with each other for 2 days…
For two whole days I stood under the huge damn thing and said a prayer for it not to move… 😂😂😂😂 🙏🏽🙏🏽
And the funny thing is…it actually listened and didnt move…🙏🏽🙏🏽
Soooooo fast forward to today…
And the strange 8 weeks of back pain which I thought was maybe a torn muscle?…
Actually turns out to be a large, ill- defined and irregular complex cystic lesion within my right ovary…and its gotta go 🔪✂️✂️
After a few appointments with my Oncologists in Sydney and Perth and a bit of research…
It turns out that the magical chemotherapy drug Sirolimus…
Which is supposed to shrink the VM lesions in my neck, skull base and cervical spine…
Isnt quite so magical after all…
While it works effectively in children and adolescents…it is known to cause an uncommon side effect of ovarian cyst overgrowths in older ducks like me…
How ironic…😂
Unfortunately my Sydney Oncologist has advised that Sirolimus is of no medical benefit to me whatsoever…
After feeling a little disappointed.
We now go back to the drawing board to figure out a treatment plan to stop the VMs continuing to grow and causing such head/neck pain/pressure …
An option currently being used in America is the new Breast Cancer chemotherapy drug PIQRAY which is also used for VMs…
This targets the PIK3CA cell proliferation which is also found in Venous Malformations.
It is known to positively shrink the VMs…
This drug was approved for use in America May 2019 but is not currently available in Australia…
However the good news is that a young girl in SA has been approved for compassionate use by the American company Novartis which now makes it a possible option …
So on the advice of my Oncologists I am now unexpectedly having an Oophorectomy (my right ovary and fallopian tube removed - luckily I didnt need it anyway) this Monday so it can be sent for histology to rule out malignancy…
(Very low chance, 10-37% but checking just in case. Im sure all will be ok )❤❤
The blessing out of all of this…
Is that I will not only be pain free but also recovered just in time to fly to Sydney on the 22nd for the next round of treatment…🙌 #SuchABlessing 🙏🏽
Even though this surgery may clip my tennis wings over the coming weeks, I am so fortunate to be fit in so quickly by my specialist…🙏🏽🙏🏽
My message out of all of this:
- Is that BIRD EATING SPIDERS are truly pure shit. Like actually pure, utter shit…😂😂🕷
- I kinda think it's a real possibility I have runover about 40 Chinamen in a previous life and now my current life is the Karma 😂❤
- But more seriously…
Please always get your bodily pains checked out. I fobbed off this back pain for weeks until it got so bad I couldnt walk.
So please go and see your GP and get all you odd aches and pains checked out…
For me…
This unexpected surgery feels like one of those 'One step forward, twenty steps back moments' ..But like my surgeon said last time, at least we are still moving forward…❤
I once again share this ongoing medical journey with LOVE and accept all of it with a loving, grateful heart xx❤❤❤
#VM #VenousMalformation #PIK3CA #Gene #InterventionalRadiology #Sclerotherapy #Bleomycin #Sirolimus #Rapamune #Rapamycin #Oncology #Immunosuppressant #Aneurysm #AneurysmRepair #Sydney #Immunotherapy #EndovascularCoiling #VascularAnomalies #VascularBirthmark #Rare #RareCondition #AneurysmCoiling
