Blog entry preceding this one is "The Reason".
(Viewer advised - photos of tumour included)
Lily: This is probably the part of a novel that you want to skip. It's the chapter at the beginning that explains things, sets the mood, the necessary background information that is almost yawn worthy. However, it is necessary...especially for those of you who may came across this blog and not have a clue as to why Death is being featured in our lives so predominately. So bare with me, and I'll try and make this as quick as possible.
In the beginning...I was the member of our little family who had the medical condition that needed treatment and constant monitoring. Periodically having operations to correct deformity of the facial bones and taking morphine on a nightly basis just to be able to sleep painlessly. My disease was something I was born with, something that had started playing havoc with my life at the age of 11, becoming worse during high school (the very worse time for it to make me stand out for all the wrong reasons).
Besides breasts on a female the next place men would often look at would be your face - and while my breasts were and still are quite spectacular, my face went through dramatic changes. At times I would be pretty, once or twice beautiful but for the most part not exactly who the boys paid attention to. During my early twenties before I met Jeff I had a brief, shiny period of gorgeousness (the time of the black dress photo) yet forever the wounds of my childhood will I carry, in which my looks will always be something I devalue - the wounds are deeply ingrained upon my soul.
Now I mention this for the following reason. When J.J and I were married, a person at the wedding asked J.J if he was sure he wanted to marry me with all my medical dramas. My lovely husband replied " Of course!" (Bless your cotton socks my love).
Sidebar: J.J and I are extremely competitive with one and other. We make wagers (not money, usually things like "If I win, you have to do the dishes" etc) , play games using trash talk banter which will result in me giving J.J. the bird or alternatively responding with the effervescent lady-like "Fuck you, mother-fucker!"
Sidebar Two: Yes ladies and gentleman I swear like a fucking sailor reserving the "C" word for when I am utterly beyond anger....so a great deal of "fucks" will be coming your way.
As I was saying I was the medical freak of this family and J.J the healthy one. In fact for seven and a half years he was the healthy one - yet.... , I'm the healthy one now " take that biatch" :)
If only it wasn't the case... :(
J.J: You see it all started with a birthmark and a rash, neither of which located on my person. Our daughter Arwyn (yes we know her Welsh name is spelt as the male variant - you need to speak to Lily about that), was born with a large coffee stained circle on her back and six to eight months into her little new life eczema started to plague her skin. For the next two years Lil and I took her to the local doctors for various creams to abate the scratching that took place daily. Lily trimmed our little girl's nails weekly trying to keep the self-inflicted damage to a minimum.
To no avail...
Finally we were sent to a specialist, a Dermatologist in the city. He looked her over, noted the eczema, noted the multiple cafe au lait marks which now seemed to mark her skin as a dot-to-dot drawing, she now refers to them as her Scooby-doo spots. He asked to see Lil's skin and then mine - which were covered in small lumps that some of you will know that I have had for the longest time.
I have never thought anything of these lumps. Perhaps put it down to a side-effect of my Scoliosis but before any more thoughts could be given to my own lumps (not lovely lady lumps - thanks Fergie) the specialist said:
" Your daughter has two out of seven key indicators for a disease called Neurofibromatosis. You need a clinic diagnosis however so I'll refer you to a Geneticist out of the Royal Children's hospital - but all points point to Neurofibromatosis (NF). For now here is a steroid cream for Arwyn's eczema. Good Luck."
Happy we now had a cream that seemed to alleviate her itchiness we waited for the Geneticist appointment.
From memory it was roughly two to three months later. The Geneticist took a family history from both Lily and I. She looked at Arwyn, looked at Lily and then looked at me. As soon as she saw my lumps (Damn you Fergie - that song will forever ruin the word lumps) which we now call "fibromas" she said,
"Yes, definitely Neurofibromatosis, Type One". It's a genetic disorder that is usually passed down from parent to child or can be a spontaneous mutation and can occur without being inherited".
Lily asked " Well, what does this mean then?"
"Well, Neurofibromatosis is a genetic condition. It is due to a mutation or change in the gene called neurofibromin. It is a very large gene and because of this it is very difficult to test and we tend to make the diagnosis clinically. It is not an uncommon condition - about 1 in 3000. The condition can be variable. There are a number of health issues that it is important to be aware of in NF1. The name refers to the neurofibromas which are a feature of the condition. Because of the potential for the optic nerves to have these thickenings around them it is important that Arwyn is reviewed by an ophthalmologist. These types of tumours are generally only present until the age of six and are extremely rare after that. Certainly most other neurofibromas tend to develop later on, in late childhood rather than at her age. In Jeff's case this has not led to any particular problems. They do have potential risk of malignancy but as with anything, if they become hot, inflamed or suddenly painful it would be important to seek medical attention straight away".
The Geneticist, explained a few more details with regard to Arwyn and then sent us on our merry way with referrals for ophthalmologists, paediatricians, scans and letters to our local GP all concerning Arwyn - which at the time because my case had been so mild, I didn't even know I had NF1 until the age of 36, Arwyn was all that mattered.
Well, all of that changed in 2010. I had started working out at the gym again and after a few weeks noticed a small strain in my forearm. I wouldn't have even called it a lump. Being a typical boy - I ignored it. It got bigger, finally when it was the size of a pea I went and saw my GP. He felt that it was likely an intra-muscular hematoma, we had an ultrasound done and thought nothing more of it.
It got bigger.
After another few weeks I went to a different GP - she ordered a CT scan immediately and followed it up with a referral to a specialist. Within a week we were told it was cancer. I laughed, Lily had a bit of a cry.She promptly had a go at me for "Great, you bastard you'll do anything to go and beat me at losing weight won't you."
(Lily: Yes I said it, I have inappropriate humour :) - also at this point I'm pissed at the first doctor for misdiagnosing the lump)
J.J: We immediately got down to the business of curing it.
That meant, talking to surgeons, radiation therapy and Chemotherapy.
Problem was, it had been misdiagnosed again. It was originally identified as Rhabdomyosarcoma, which is bad but not dreadful as it responds exceedingly well to chemo.
Mine didn't, in fact just like Audrey in Little Shop of Horrors it was " Yummmm feed me more Seymour!" BIGGER!
From beginning growth, through to radiation treatment and finally the aftermath of surgery with radiation burn.
Chemo was cancelled and I was left waiting for radiation... waiting...waiting. You think when it comes to cancer that time is of the essence.
Two months go by while we wait for an available spot on the radiation roster. And finally, December 2010 radiation begins. Five nights a week Lily would drive us fifty minutes into the city after her work day to get treated by radiation. Lily & Arwyn would sit in the waiting room, usually Lil would feed Arwyn or play with her or try to stay awake by raiding the vending machines for all the available coca-cola possible while a beam was boring into my forearm.
Radiation sucks. The tumour got huge! It was even named (By Louie) as Sputnik. Eventually, the tumour begun to slowly, very slowly break down and ooze. The full extent of this ooze just isn't done justice. It constantly wept and the odour coming from it was at times quite unbearable.
Radiation finished on New Year's Eve.
February 2011 - Time for surgery, which went fantastic. Clear margins, full use of my hand, although a bit weaker. We were so happy.
During a routine wound review, the chest x-ray showed "areas that are cause for concern in the lungs."
Crap!
It was the surgical team that broke the news to me about the spread. Effectively telling me to get my affairs in order. I was left wondering if I was even going to leave the hospital that day. That was just after Easter 2011. The oncology team started chemo again. A different type this time and each course shrunk the tumours, which was fantastic. We thought we were on top of it, that a truce had been made between the cancer and my body. Soon I was going to go back to work.
But a tingling started in my fingers...
and then there was a lump up around my head. I didn't tell Lily about it, and I do not know why. When I did tell her, it resulted in her looking at me as a teacher looks at a child who knows they are in the wrong. After being badgered by her within an hour she was on the phone to the local G.P who fit us in straight away. She saw the swelling around my temple and by that afternoon, a cat scan and ultrasound was performed late on Friday afternoon. A phone call from the G.P surgery came through saying that the doctor wanted to see me Monday morning.
Shit! Shit! Shit! Shit ( Lily: Fuck! Fuck! Fuck!)
Over the weekend I had developed a fever, vomiting and abdominal pains, on top of everything I had a virus going around. Monday morning at the doctor surgery I am laying down in the doctor office, ready to vomit at any minute. Arwyn claims that she too is sick and then proceeds to vomit into my bag. Lily is just standing helpless in the room, watching me on the bed, dealing with Arwyn's vomit and knowing what the outcome of the scans is going to be. After a shot of maxilon the doctor said that the news wasn't good and that the cancer had spread to the bone of my skull and was pressing against the brain.
After another week, we waited for the specialist appointment that I had lined up and was told that the cancer was incurable and we would now be treating for quality and quantity of Life. So where do we go from here?
We wake up every morning, give each other kisses, hugs and celebrate the simple things that life gives us everyday in the company of those we love.
Blog entry that follows is "Their First date occurred after their engagement".
Hmmm, am I allowed to give you that teacher look as well for holding out on us on all these details? BTW - I did get referred to a geneticist here in Canada and was told I definitely did not pass on NF, so it was that defect that started with Jeff. Sorry Son. Dad
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