Yes! The treatment is working and the good news is that my blood test results are right down in the remission zone…the best result I could have asked for. I’m absolutely stoked!
Thank you! Thank you! Thank you!
I am really feeling exhausted now. Very, very tired but I really wanted to share my good news with absolutely everyone who is traveling along this journey with me, beside me or especially going down the same or similar roads themselves. We are not alone and we all have to believe in miracles. Have faith. After the success of skiing down the mountain in Perisher last year only to run straight into pneumonia and a life threatening flare up of my auto-immune disease, I really doubted that I still had the strength or capacity to turn my mountain around again.
Well, to be perfectly honest, I didn’t. It took a team of highly specialised doctors, toxic drugs, fabulous nurses, support from family and friends, a highly entertaining and philosophical driver to and from my treatments provided by Carer’s Respite. A wonderful husband who is married to a mad writer with a chronic illness (I’m not sure which is worse but unfortunately being married to a writer or any other form of “creative” doesn’t entitle you to a Carer Payment or any other kind of practical support. My chronic illness does.) My parents and brother, particularly my Mum, have looked after the kids as well which has given me the capacity to rest and heal. They also let me stay in their soon to be home at Palm Beach in a most stunningly inspirational location. I’m sure this has really boosted the healing process. I’ve also been swimming in the pool to improve my lung capacity. This result has taken a lot.
Above all else, I believe it took God. I firmly believe that he is with me. I still don’t understand why he didn’t stop me from getting this disease in the first place. Yes, I do actually. The way I see it, everyone has their lot…their challenge. I don’t know whether this is designed to stretch us and help us to grow but that’s certainly been the end product of my experience. That said, I have also chosen growth over anger, stagnation and bitterness. Our lot isn’t easy either. It is very tough on our entire family, extended family and the ripples resonate out to friends and even strangers. When it flares up, it is pretty demanding and all-encompassing.
My situation isn’t what I’ve call a healing. I’ve gone into remission and this more a case of management, rather than cure. This chemo was round one. I will now have 4 fortnightly sessions until my specialist gets approval for my next treatment a drug called cellcept. I haven’t looked this up yet so goodness know what that’s going to do to me but as I’ve said before, I’ll do anything for love and the list of nasty toxic drugs I’ve taken is adding up.
Here is a quick photographic tour of my day. I had intended to take photos of me actually having chemo and lugged my huge SLR around the hospital. Took other photos and forgot the main one. Anyway, as it turned out, it wasn’t my last chemo treatment so further opportunity awaits.
I also wanted to share with you my immediate response when I found out my treatment had worked. When I was first diagnosed with this disease, I had called it “Dermie”. Dermatomyosistis was way too long and unpronounceable. Anyway, soon after my diagnosis I was sitting in the food court in the old hospital when I wrote what turned out to be a very cathartic story about it. In the story, I was being pursued by Dermie, a very possessive lover who was relentlessly stalking me. Anyway, the story ends with a comic twist when I introduce Dermie to the Internet dating site RSVP and he races off and meets someone else. I still remember how much I laughed when I wrote that twist. It felt so good and was so cathartic! I felt all this negative energy immediately pour out of my system. It was just fabulous!
Anyway, today when I heard the good news, I pictured this little cartoon character with twin pistols both barrels pointed straight at Dermie . Bang! Bang! Not only did he shoot Dermie blowing him to smithereens, he was also jumping up and down on the spot laughing. He was actually happy! Thrilled! This character was totally warped!
Now, as much as I wanted Dermie dead and out of my life for good, I’m not into violence and had no idea who this gun-slinging maniac actually was until asked my dearly beloved husband. Turns out it was Yosemite Sam who I can’t even remember with my conscious brain so I have no idea here he found his way inside my head. (Turns out he’s from Bugs Bunny. Obviously a deeply repressed childhood memory! More therapy sessions required).
However, I’m sure I’ve already mentioned that I’m on a lot of drugs with these treatments and they are definitely doing strange things to my brain. This is absolute confirmation!! I actually packed a much more wholesome and even spiritually minded book in my bag when I left for the hospital this morning: Conversations with God: An Uncommon Diologue by Neale Donald Walshe. There were no gun slinging cartoon characters of any description!
Perhaps, the devil made me do it…