It took me one month to get over something that I would qualify as being bad news.
No, cancer is not back. At least, I hope it is not.
In a blog about Marrakesh, I briefly mentioned that the reason why we had gone there was because I had been diagnosed with a rare genetic disease and that I was bound to loose my eyesight pretty fast.
In July 2001, I woke up on a very nice summer morning. I opened my eyes. (Don’t you open your eyes when waking up?) Everything looked blurry. I tried to blink the blurry feeling away several times to no avail. Still blurry. A few drops of eye lotion in each eye thinking it might be a bad case of an allergy to pollution (I was spending a few days in Paris)...
I only had one solution left... I took a cab and got an emergency appointment at the American Hospital with one of the best retina specialists in the world who happened to be there in-between France and the States.
We talked for a few minutes and then she sent me to get an angiography done across the hall. The radiologist was very nice and kind but he looked quite shocked as far as my blurry vision could tell.
Back to the ophthalmologist’s office, she had me sit down... and then she asked me to look, one eye at a time, at a picture she had above her desk. Actually not at the picture but at the frame. Kind of weird but I did it anyway.
Well, well, well... if I had not been so nervous (nice euphemism), I would have laughed because this was becoming so ridiculous... The frame was not straight at all. It looked a lot like a very choppy sea to my very startled mind. It could have been very poetic.
But usually picture frames are not meant to look like rough seas. At least hers wasn’t because as soon as I expressed my surprise (ok, let’s say shock), she said to me: “You are quite young to suffer from such an sudden onset of what we will definitely call Wet AMD. I’m very sorry for you. Things are going to get worse and worse. Etc. Etc. And you’ll be partially blind in less than two months.”
She added that since the onset had been very brutal, “my” Wet Macular Degeneration (she kindly dropped the “age-related” stuff) was genetic. And there was nothing to be done about it.
To make the story short, at the time, Swee’ Pea was working on his Master’s degree in the States. We then learnt that in the US, the FDA had approved a brand new drug that was supposed to help delay the total destruction of my retina!
Swee’ Pea sent me a few bottles that made it through the French customs because he lied about the content of the package he was sending me... Well sometimes it is just right to lie.
While I started being on the medication (a very powerful vitamins and antioxidants supplement), I decided that blurry or not, my eyes had to start working again.
Those of you who have been my faithful readers already know how tough I can get.
Actually I think I’m kind of a mutant, maybe a true E.T.
Who knows? My dear old mother always claimed that she had found me in a garbage can. (Her idea of a joke.) But maybe she was right considering all the illnesses that have plagued my life (not very healthy to leave a baby in a garbage can... but a very interesting way to build up extremely strong antibodies!)
End of digression...
I started to ingest the “PreserVision” (by Bausch & Lomb - no publicity there, just saying, that’s all). And I decided I had to start reading again.
One problem: There are no eyeglasses for WetMD. So when I started to try to read again, it was very hard. One of the hardest things I’ve ever done, including chemo.
Except that I did not know that the human brain is a magnificent computer and the eyes are just means to transfer whatever information they are set on. The brain does the rest.
By the time I felt good enough to read a whole chapter while understanding it... the “PreserVision” had been working wonders for me. My left eye slowly got rid of most drusen and I even started feeling more comfortable with my right eye.
I was walking normally and I had more or less quit bumping into doors and people. I was able to cross a street (very carefully) without getting hit by a car. (I never got hit by a car. Once I simply found myself sort of sitting on its hood or maybe its bumper. So thankful it had not been a truck.)
And there was a glamourous side to it too... I had to wear sunglasses all the time... During the day to protect my eyes from UVs and at night because having a choppy retina makes it hard to stand electric lights! So I had all sorts of sunglasses... until Popeye said to me: “Don’t you think you are overreacting?” meaning: “How many sunglasses will you keep on buying?”
After a (long) while, I started taking pictures again, training my left eye to replace my right one... Even though they say that only one eye can be used as a photographic eye... Usually. Not for me.
It wasn’t easy. Not easy at all. But I was fighting. I fought during chemos too. There were hard decisions to be made then. We made the right ones. Which means that we decided to fight cancer without worrying about my eyesight.
During chemos, I read with my ears. No, I did not turn into a monster! I simply discovered the pleasures of listening to recorded books...
My right eye was definitely not recovering at all but still no signs of neovascularization.
I finally ended up in a brand new WetMD research center in Paris where the first specialist I met there welcomed me with a big smile.
“I was hoping you would end up here one of these days,” he said. And he went to a big cupboard behind his small office. He opened a drawer and got a file out of it. My file.
Hard to believe it but when some hospital ophthalmologists started being interested in WAMD in France where there are only a few patients (too many though) suffering from this illness and some of them quite young, they asked all their peers who had met people like me to send them their files.
I had been consulting quite a few retina specialists ever since 2001. But my first file went back to 1998 when my ophthalmologist found out weird drusen on my macula during a routine eye test without even telling me anything about them. (Dry AMD drusen look different.)
By the end of 1998, I had moved to Belgium and only came back to the American Hospital in 2001.
The research center is quite new but there are brilliant researchers there who share their time between France and the US where there are (too) many cases of WetDM.
The doctor in charge of me was very surprised that neovascularization had not happened yet.
1998-2008 - This makes an awful long time considering that he was totally agreeing with the AH retina specialist. I definitely was an enigma for him.
He told me to start driving again if I felt like it. I did start driving in Brittany but only in Brittany when the tourists are gone and the roads are empty.
I did not have to tell myself to keep on taking pictures or reading though!
So there I was, very confident that after such a victory over cancer (hopefully), I would keep on challenging my eye specialist. Well, I almost did... I’m still challenging him though, in a way (a small way, now).
My right retina is looking like a battlefield without any abnormal blood vessels growth though.
But lately (one month ago almost to the day), I started feeling really weird while I was reading a book or taking a picture. I got really mad at my left eye. It didn’t help very much. I then started to be really nice. It didn’t help either.
Let’s face it! My left retina has turned into a battlefield too! A small one for now. But a battlefield anyway!
Swee’ Pea has given me a Kindle which has proved very useful lately. But I also have to thank Steve Jobs and Apple for the wonderful iPad 2 Popeye bought me two weeks ago. (Doctor's orders!) Thank you, Popeye, by the way.
I don’t know what my future will be like and I’m not writing this post in order for you to feel sorry for me.
I’m writing so that it may help people just the way my fight against cancer is helping my neighbor in Brittany to fight against his cancer because he’s seen me fight hard and survive. (I’m not bragging. He told me. And it made me cry because I never thought such a hideous experience would ever be useful to someone else.)
All I know is that for some reason (the garbage can?) the neovascularization hasn’t happened yet while research is making a lot of progress.
They still don’t know how to stop WetMD (especially not the genetic form) but they have developed new technics to clean the bleeding so that the patient sometimes regains up to 50% of his eyesight, even though it will be a constant fight once it starts.
Sometimes I get really mad like when I can’t see things that I used to see one month ago. I get really mad when I have to ask my friends to explain a painting to me or what we are looking at. (I usually get the general idea though! And I have plenty of imagination too!). I get really mad because I can’t read a real book anymore. But I still buy them.
And then I turn my computer on and it’s like magic... Such a very useful and wonderful technology...
I do not admit defeat... yet. Just to say.
*Good Luck, and Good Night*