RTX check, UofA talk check, remission - checking

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.

Read some more Weggie stories

Since there is so much on my little plate (apparently that's a good trick to loose weight, eat from little plates) I just don't see being able to publish the book in the foreseeable future, I've asked some of the people who have submitted stories if I can post their stories on here. There are more at home, but I can't make Brian look through my disorganized email folder and send me all of them. He's sent me a few and I've asked the owners to post their stories and they have graciously agreed. Thanks guys. To read their stories go to the tab above that says Other Weggie Stories. We're making a difference, one little 'ouch' at a time.

Well I'm stuck in the city

Found out that I don't have any v-zoster antibodies. Blah. So I'm in the city, separated from my family waiting to see if Hana gets anything and if I get anything. If I do, then I have to go on an antiviral and see where that takes me. I've been checking for spots every day and so far so good. I'm also feeling that with each passing day I'm a little bit more out of the woods. 28th will be the full 21 day gestation period, so that will be the magic date. I still go on the 23rd for RTX number two and on the 24th to the U of A for a guest blah blah, so things overall are moving smoothly aside from this one little pox speed bump. Thanks friends for all of your support.

Peace y'all.

Don't Panic

If you were an intergalactic traveller and had the Hitchhikers Guide to the Galaxy in your pocket for advice, one thing you would know (because it's written in big, bold letters on the front cover) is DON'T PANIC. Well, I apparently lost my copy of the Hitchhikers Guide because I panicked last night. Big time panic. I'm calmer now, but man did I ever get worked up. I found out that Hana's friend who she hung out with on Saturday got spots on Sunday and was diagnosed with chickenpox on Monday. I also saw her friend on Saturday and got all of my B cells blown to smithereens on Monday. So I panicked.

Why did I panic? Because there are two things I've been afraid of contracting since being immune suppressed - pneumonia and chickenpox. AND chickenpox in an immune-suppressed folk like us Weggies, can lead to pneumonia (and encephalitis - ughhh). Again, I panicked cuz those things can kill us. I know, I know, it sounds so melodramatic, but I've been really good and calm about the whole process so I'm allowed to have a freak out once during the disease process. This was my freak out. When your B cells are gone, your immune system goes back to being where it was when you're a newborn, not much memory of what you've had or have been immunized against. I know that there are still some B cells that aren't killed so I'm hoping I have a few of those that can pull me through this, probably overblown, crisis.

I spoke with my doc and she ordered a blood test to see if I have antibodies for the virus and if I don't then we'll treat with blood product to protect me (IgG - I think). We'll hopefully know by Friday where I'm at with all of this and where we go from here. We will separate me and Hana for a bit just to be sure - which is a total bummer. Total! But gotta do what we gotta do to make sure we're around each other for a long time in the long run. I hope this doesn't mess up my RTX treatment ( I have a second round in two weeks time) as that will be a huge waste of time, money (the treatment is worth $10,000) and health. 

I panicked my friends too on Facebook, so I feel like a bit of  a putz. There's nothing I can do about that now though.

I keep telling Hana that a big rule in life and survival is DON'T PANIC. You can never make sound decisions or control your body or surroundings if you're in a state of panic, apparently though I should listen to my own advice a little better.

Fastest Girl or Best Sport - which award would you rather get?

Best Sport. That's my answer.

I was at a function the other night and the awards were being handed out for fastest male and fastest female in a fun ski race, then came the Best Sport award.... I thought about that after, and figured that this is the award I'd like to have for the race of 'life'. Why? For a couple of reasons. To be the fastest male or female depends on having a collection of qualities and attributes, some of which are beyond one's control, whereas being the best sport is totally and completely within anyone's reach and is completely dependent on how you approach and perceive life. So it doesn't matter what your situation, what your physical shape, what your health condition, 'Best Sport' is within your reach, which is why I think that this is the award to get and the award to strive for. We can all be best sports and imagine what kind of awesome place this planet would be if we all worked on being the best sport. Besides, when you get fastest male or female, you might be going too fast to notice what amazing things life has to offer during the journey, and you definitely wont have enough time to stop and smell the roses, or see the beauty of each individual snowflake. So kudos Dan. May we all be the Best Sport just like you.

My shoes got their innogural wearing on
the day of my RTX infussion. Raging Baby.

Today I had another drip drip drip moment (moments - seven hours worth of moments). You know what, even some nurses don't get it. I asked one if most of the people in there are in because of autoimmune diseases and her reply was that no, all kinds of doctors send people for infusions... nephrologists, respirologist, neurologists.... But then I asked a few people around me what they were in for and everyone I spoke with had an autoimmune disease of some sort and were sent there by different doctors. Then  I spoke with a wonderful lady beside me who had MS and another disease that was way too long for me to remember the name but it was basically a distal neropathy (both AI diseses) and we started speaking and I gave her all of my babble that has made me so passionate about my new adventure and after a pause (we were both getting RTX so we were both there for a loooong time side by each) she looked at me and said - "I've never thought of it this way, you have a very good point". That's the thing, we don't think about the effect AI disease has on our society, and how many of us there really are out there, and how closely we're all related, and how few people really get how AI diseases work and how they affect our medical system as a whole. We are standing on the edge. We need to get together and push for a cure, rather than just treating our symptoms and making us weaker in the long run because of a myriad of nasty drugs we have to take for the rest of our lives to keep us alive.

More cool stuff to come. Like really really really cool stuff. Stuff so cool that I might actually get to meet some of you in person in the not too distant future. How's that for a cliff hanger?

Now I go to bed and rest while my B-cells are the victims of genocide. Tomorrow a toilet bowl will be a mass grave of the innocent bystanders who have been confused by another drug intended to make me stronger (H1N1 vaccine). Peace out friends.

Here we go.... best year ever....

Since you can't hear the tone in my voice I'll just clarify that there is a bit of a wishful thinking tone as I say that. I know it can get worse, it can always get worse... no matter how bad  you think you have it, it can always get worse, so I try to enjoy all my moments of relative health that I am given. I am also thankful for the fact that I'm at that point in dealing with this disease where - although there will always be an element of uncertainty (moreso than the everyday life type of uncertainty) - I am getting more acquainted with the goings on with my body and how it responds to the drugs and to the disease process.

My apologies for the hiatus. It's been a crazy busy holiday season, and well, guess what... there's a little wildfire within that needs to be put out by some super expensive designer drugs - my only option. As I mentioned before RTX and CTX are the only big guns that will put this beast into remission and I've done my life's allotment of CTX so RTX it is. The positive of it - no hair loss. I now have crazy Einstein hair, too bad the brain ain't following suit.

So, I'm going in for another zap of RTX in a few days, followed by another one in a couple of weeks. There go my B cells, about to get obliterated again. I forget how it is to be completely immune compromised and the dangers that lurk everywhere when your body can't fight anything - a cut on your finger, a scratch on the roof of your mouth, a fingernail that breaks, a cold, a flu, pesky little wart virii... the list goes on and on... gotta be careful getting a massage, can't ever go for a mani or a pedi (not that I ever do that anyways). My mom asked me if she could take Hana and me to Puerto Vallarta in February and I begrudgingly have to decline as I will be completely immune compromised at that time. It's time to lock myself up in the house again for a little while (a little while has taken on a whole new meaning since I got sick).

I will be playing on my computer as energy permits and continue on our quest for the 'holy grail' of autoimmunity. I now have a Facebook group - FIND THE COMMON THREAD, as well as the site where I'll put the posters and supporting info as it gets done. There will be another interview on Global but this time it will be about the common thread gig. This will be later in January.

Take care my friends and keep it real.