Well, doneski. RTX done yesterday. Knocked me on my buttocks but it's done, and again I wave nostalgically to my dead B-cells with each toilet flush. I was quite emotional today and realized that after round one, two weeks ago, I was also quite emotional after the infusion. Me thinks the pred has figured out a way past my Bulgarian defence system. I was talking to Brian today about how totally lucky I've been with that aspect of the pred side effects. I've heard of some really bad horror stories about pred and emotion and mine has been kept in check throughout the last almost two years. I do feel it now though. But as I mentioned to the Medical Anthro students at the UofA tonight (they were very gracious and didn't make fun of me once - thanks you guys if you are reading this) I've been primed to notice unnatural emotional reactions just from being a goil, and having to go through PMS (a long lost and un-missed acquaintance, PMS that is).
I haven't talked to my doc and after the chickenpox freak out two weeks ago I'm hesitant to bug her again. I've decided to make a couple of decisions on my own using my experience, and the knowledge that I've acquired thus far. I WILL go down on the pred by 1mg. I was holding off until after the infusion - just in case - just in case what I don't know, but I thought I shouldn't change status quo before such a drastic treatment. I was meant to go down at the beginning of the month, so I'm going to bring it down 1mg tomorrow. I've also decided that I'm going to stop the Imuran until I get home and get a blood test. I haven't had any here in the city (other than the v-zoster one) and even if I did, I wouldn't have access to the results (Dynalab won't give them to me) - I love living in a small town. In Jasper I can go and get the results the day after I get the blood test at the hospital. I can see where my White Blood Cell count is at and then decide if I go back on Imuran now or wait a bit. I just want to make sure I don't deplete my immune system completely because then I am very susceptible to potential invaders that I can't fight off. Last time (in March) when I had my RTX, I completely stopped taking cytoxin the day before I got the infusion and then didn't take any chemo for a few months, so I don't think that there would be any issue with stopping the Imuran for a bit to make sure I don't deplete completely.
There, I'm being a pretend doctor again. But I have my own best interest in mind and plan on living a very long and hopefully healthy and normal life, so I'm not just being foolish. I'm making educated decisions based on more information than most docs (other than rheumys) have on this disease and on knowing my body and having the experience with Wegener's.
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Hi Marta,
ReplyDeleteI just wanted to thank you for taking time out of your hectic schedule to come talk to Heather Young Leslie's Anthropology class yesterday. I do not live with chronic disease, but I found your story very heartfelt and inspirational. What you are doing for the AI community is amazing. Thanks for sharing a bit of your life with us :)
Oh wow, thanks for saying that. I was a little nervous to tell the whole thing... what to say, what not to say... did I talk too much, did I miss out the important stuff.... you guys were wonderful and no tomatoes were thrown at me (ha ha). Thanks for sitting through and listening to me talk for so very long. And thanks for the wonderful message above.
ReplyDelete