FDA OK's RTX for WG

Feel like you're watching an army flick with all those acronyms. Well that's what happens when you're immersed in the world of Wegener's Granulomatosis. You become acquainted with all sorts of goofy words you'd never have even considered looking up before...

The good news.... FDA has just aproved Rituximab (RTX) for the treatment of Wegener's Granulomatosis. This is great news as this powerful yet expensive drug has been one of only two 'big guns' used to get Wegener's under control when in a flare or at initial diagnosis. The other big gun is Cyclophosphamide / Cytoxin (CTX) which is a chemo drug that causes all sorts of other damage to the body. I've been on CTX for 10 months - EVERY DAY - and it sucks. It's kept me alive, but it still sucks. On that note, I finally decided to cut my hair. I lost, hmmm, I'd say about 70-75% of my hair but still had good distribution of the survivors and was holding on tight to the dream that it still looks OK. Meanwhile I was getting new growth underneath that was looking quite goofy. Soooo, I just cut all my hair to the length of the new growth and lo and behold, my new hair is CURLY.

So now I have a chunky pred face, neck, and back and short and curlies on top. Not a pretty picture to imagine, but ironically I feel much more human since the hair purging. Brian is still trying to get used to it, but all in good time.

I think I dodged the bullet

I think I might have had a little pred rant last time.

Hana ended up going through the cold/flu thing while she's with her grandparents and I think I might have dodged it. Pheeee-uuuf.

I'm noticing a considerable improvement in my sinuses in that I don't have to wake up 15 times a night to blow my nose and unstuff my breathing passages. Yeah! Headaches are also subsiding. I get the occasional 'zap' but I know how to deal with those now. There is no pressure or pain behind my eyes. My skin is not doing the 'Johny technicolor' show it use to, and my face feels floppier when I touch it - it doesn't feel like an overinflated balloon that might pop at any moment. On that note, love your wrinkles.... you have no idea how great they are until you loose them... I'm so looking forward to having my old wrinkles back. My hair is a circus show, but I am starting to get some new undergrowth (about an inch and a half) and my fifteen strands of long hair fighting for supremacy are keeping the peach fuzz underfoot slightly in control.

Now to the job of getting strong again. I have lost pretty much all of my conditioning (other than the basic minimal requirement to stay upright) so it's time to get it back.

Old Marta, here I come.

RTX ROX

So it's been just over a month since my first Rituximab infusion and things are looking brighter. I had a bit of a dip but it seems to be clearing itself up. One little downside is that after just one day back at Nursery School, Hana got some bug and now I think I might have gotten it from  her as well. That kinda bugs me. I know that those environments are little petry dishes, but it's so blatantly obvious that it makes me a little angry. I had been keeping her from school the week before the second infusion as I couldn't get anything or the whole thing would be a waste, a $10,000 waste as well as my chance at getting healthier. Then there were two weeks of holidays for Spring Break. We've managed to stay healthy for a long time while the world around is sniffling... then off she goes to school on Monday and is sick by Wednesday. I just started coughing this morning but I believe now that I have no B cells, my immune response is slower. Hopefully this blows over soon and healing continues.

Woo hoo Rituximab!

The Valley I didn't think about

I am now in a valley... which is normally a good thing when you're out on a back country hike, but in this situation it's a little unnerving. I didn't think about this before the infusion and am getting a good taste of reality, but I also know that this is the final umpapa before things start improving.

What's my valley? Well, cyclophosphamide stops working about a week after you stop taking it. I think it stays in your system a little longer, but I definitely know from experience that there is a week on either side of starting or stopping cyclo where you feel a definite difference in symptoms.

I just saw my doc on Friday and asked how long before the Rituximab kicks in and she said four to six weeks and for some people two to three months (I wont be one of those however). Sooooo, there is a few week period where symptoms will probably come back - I'm starting to feel the headaches and the shooters making an entrance.

I also asked about why some people are getting an RTX infusion every six to eight months and if I had misunderstood our goal. She reassured me that I had not misunderstood and in my case we will not re-infuse unless I have another flare. I am not interested in needlessly taking drugs and being B-cell depleted for the rest of my life. What I am looking for is a normal life with a drug free remission as the pillar holding that together - for a looong time.

I thought of something the other night. I have always been a strong believer that change is great. I have always loved change. I wonder if I got an 'in your face' from the universe.... but I still have to say that I love change. It keeps things fresh, even if it is with a stinky disease like Wegener's. There are so many people I would never have met and things I would not have done had I not been introduced to Wegeners's. So in YOUR face, 'in your face'.

Biological Weapon of Mass Destruction

Wa - ha ha ha ha..... I have set off a serious BWMD on some poor, unsuspecting, misguided B-lymphocytes. There will be another attack in 18 days to kill off the ones we missed and then a new/old life hopefully.

The event was quite uneventful - thank goodness. The nurses were awesome. There are a lot of people who are in there too often. It was quite the infusion dance hall. I got to see lots of people coming in and leaving as my infusion is one of the longer ones. I was there from 8:20am to 3:20pm. One dude came in (a regular) and slept for about 6 hours while getting his infusion. Apparently he works nights and schedules his infusions in the middle of his workweek so that he can get a good sleep before hand. They give him some Benydryl and off he goes to slumberland. It was an interesting vibe - way different from the ER vibe where everyone around is in a slight panic and unsure of the events to come. Here it was all relaxed and everyone that came in was at peace with their lot and what has to be done. The lady beside me said to me... regardless of the poking and prodding, it sure is worth it in the long run. The nurses are happy, relaxed, peaceful, as are the patients.

I felt a little tired after the event last night, and a little off today (tired wise) but other than that nothing out of the ordinary. I've been having dreams of running races, and through the forest, and doing all sorts of things from my old life that I haven't done in a very long time... so hopefully, like little Hana says, "your night dreams will come true".

Two more sleeps

Yup, it's fast approaching. I'm a little nervous but mostly excited. I was comparing it to buying an all-inclusive vacation. When you buy way ahead of time, you start to develop expectations because you're over thinking it, whereas if you buy it the day before you leave (like Brian and I have on a few occasions) you have no expectations, and everything is a treat. Landing in the hospital and having things done to you is more like buying the vacation the day before, you just take it as it comes. Now I feel like I bought my vacation in advance cuz I'm thinking about it way too much.

Of course Murphy had to come into the picture too. I've been keeping myself so safe from catching anything as they wont do the infusion if there is any sign of infection, virus, fever - anything. I haven't caught anything really that I know of since I got on the immunesuppresants in May, and last Friday night I started to feel off, and within a few hours my body was doing a full evacuation of it's innards from both ends. As I was holding on the 'puke bucket' all I could think of was - 'lovely, only five days before I have to go in'. Luckily it was a short lived body assault, and has now passed. All three of us had it too, so hopefully we're done with that game.

My next post will be after the wonder drug infusion.

Viva la vida, as my good friend Janet just sent me.

P.S. HAPPY INTERNATIONAL WOMAN'S DAY!

Rituximab here I come

March 10, 2011. Part one of two for Rituximab. March 28, 2011, part two.
Then, remission time.

In the meantime, here is some video of my little bunny skiing it up with momma duck (me) behind her just a couple of days ago...
http://www.youtube.com/user/TheJasperlife?feature=mhum#p/a/u/0/XId_dillfek

I love my family. Wait, I think I've mentioned that a few times before.