In 2004, several months after chemo #1, I started suffering from excruciating pain in my limbs, muscles and joints. I could no longer stand up without help except that I would start screaming to the top of my lungs because my skin felt like it was on fire whenever someone was touching it.
I had been quite sensible about cancer and its ‘enemies’ (my 'friends' - surgery, chemo and radiotherapy). But suddenly I was feeling like I would not be able to survive such pain and I was quite vocal in my distress.
This crisis happened when we were in Brittany for Christmas. By the time we came back to Paris, it was getting worse and worse. I truly was going out of my mind.
To make the story short, the doctors at the AHP finally made the right diagnosis - It was an acute onset of fibromyalgia caused by an overdose of stress (PTSD)... mainly due to chemo.
They put me on TCA (Laroxyl) plus Clonazepam (Rivotril) plus Bromazepam (Lexomil) plus pain killers... The dosage was quite high. You’d think that I would turn into a zombie. Not at all. The pain disappeared and I resumed a fairly normal life, even with the suppressant.
A few months went by. The neurologist was talking about downsizing the treatment. I was already off painkillers and bromazepam.
And then in 2005, my world exploded again. Cancer was spreading fast while becoming a potentially swift killer.
I had two big operations before they could even start chemo.
The doctors were adamant. No way the fibromyalgia treatment was to be downsized after all. I was back on bromazepam. And they doubled the dosage of TCA and Clonazepam... to be on the safe side...
Chemo was hard and long. But fibromyalgia did not come back! Wonderful, isn’t it? Cancer, yes. Fibromyalgia, no! A miracle!
I left the hospital in August 2006... hoping I’d survive without chemo. It had been such a terrible experience that I even quit thinking about the fibromyalgia treatment.
Years went by. Lucky me. Obviously my oncologist had managed to scare Cancer #2 away, once and for all! Talk about being positive!
Two years ago, I was feeling so good (and surviving so well) that I started dreaming about discarding the suppressants.
I had long talks with my neurologist who just didn’t like the idea. Not at all. But he’s a kind and understanding man... I made my point. I was just asking about downsizing the treatment and I’d do it very slowly and very respectful of his prescription.
I am not this crazy. I know that those drugs are very addictive and that the weaning would take time. I did not care how long it would take. I knew I was ready to get rid of them all.
I knew there wouldn’t be any substitute to make my journey through freedom easier but I was so willing to start!
One year ago, I finally managed to reduce the intake by half without any problem. I was very surprised actually. I never thought it would be this easy. My doctors who worked again as a team monitoring my weaning were quite surprised but very pleased... They joked about it.
The unsinkable Olive Oyl had done it again... defeating (probably) cancer and getting rid of such a strong treatment! Laughing at doctors! Like a child. ‘See, I told you. I told you!’
They had asked me to wait for one whole year before getting on stage two, which for me meant complete weaning, once and for all.
Six months ago, I got the green light. I managed to reduce the new treatment by half. I was no so cocky about it. From time to time, it became a little bit hard.
I’d feel faint while walking around. So dizzy that I had to stop and sit down on the closest bench. Then I’d feel allright again...
No way I would quit ‘quitting’. I was pretty adamant about my ‘journey to freedom’. It would take quite a long time... but I would do it.
In November 2011, the posology was down to 10 drops of Laroxyl and 5 drops of Rivotril. Quite a success if I tell you that in 2010, I was still ingesting 50 drops of Laroxyl and 25 drops of Rivotril every night.
The funny thing about it was that I could not tell the difference. I did not feel ‘undrugged’... probably because I never really was aware that I had been this drugged after all.
I had excuses.
It was so hard going through the whole experience of the cancer relapse and so very hard to recover from a very strong chemo that my mind probably forgot that I was on TCA, etc.
In January, on the day we left Venice, I told Popeye I was more than willing to quit taking all those drugs even on a very low dosage. Once and for all.
We talked about it. It had been quite easy... despite the fact that I had been very moody, Popeye added.
I made an appointment with my neurologist who knew exactly what I was going to say! I hate it when I am so predictable. And he said no. And I said yes. Please. And he said no. And I said yes. Please! Please!
He gave up as I knew he would because he knows me well and he trusts me. Besides the fact that I’m never too far from the AHP... He checked his schedule to make sure he wouldn’t be away while I was going through the last part of the journey.
And I left with a new prescription. On my way to complete weaning.
Last night I took my last drop of Rivotril and within ten days, I’ll be off from Laroxyl as well.
And yes, it has been an awful experience from the very start. Very surprising actually. It had been so easy...
I imagine my brain finally registered it would never get access to these drugs again (hopefully) and fought a very mean battle against my will!
I’ve quit sleeping... No kidding. Last night was grand! I slept for four hours! (My average - two hours per night for the past two months!)
I feel dizzy most of the time. I quit eating (well, this is NOT the worst part). My body goes through hot flashes while I am shivering and feeling utterly freezing... anytime anywhere...
I have the hardest time to keep my eyes focused... the hardest time to read... (No wonder being so sleep deprived...)
At first I thought it would be a great idea to keep walking and walking for hours whenever I was in Paris until my legs gave up on me. I really was hoping I’d feel so tired that I’d fall asleep and I’d sleep for hours and hours, maybe days...
Sleeping it off...
I don’t feel tired though. I am exhausted. And yet I feel hyperactive... and totally numb at the same time.
I go through weird gaps... forgetting my phone number, for example. But when I try hard, it comes back, don't worry! It just feels weird and spooky for a few minutes.
I almost forgot to mention that I am always in a very bad mood! (There, I said it...) Foul temper aft starboard. Worse mood aft on the port side... Poor Popeye!
Hello, brain, why can’t you accept that your drugged bliss is gone?
Hello, brain, we are going to have a brand new life, you and me! A fun life! A drug-free life!
Hello, brain? Hel-lo, brain?
Do not worry, my friends. I won’t give up. ‘Brain’ shall understand. I am the unsinkable Olive Oyl after all!
|©E. C. Segar|
*Good Luck, and Good Night*