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.

International Rare Disease Day Today - Feb 28

Today is a special day for special people. I always thought I was special but now I have even more reason to think so. So join in and click away. Next year maybe we'll have a big party on this day, all of you are invited - Weggies Unite... wa ha ha ha.

what makes my soul soar?

....my soul soars when I see my little girl learning new things and getting excited about life and what it has to offer. My soul soars at the thought of watching my little girl achieve her goals as life unfolds for her. My soul soars as I see the sparkle in her eyes and her daddy's eyes each and every day. My soul soars when I hear those three little words from her and her daddy, for no apparent reason.... and to you both, I love you too.

Another snowy day in paradise

It's another beautiful day in paradise. I looove the snow. It makes everything look and feel so fresh and new, and this feeling of newness is more precious now than it has ever been in the past.

I've gone for a couple of skis in the last week. I can only pull of a couple of runs at a go, but man does it ever make me feel good. It really gives me that sense of 'normal' that I so yearn for. I forget about my cheeks, and my achy body, and my perma-headache, and my owy ears and stuffed up nose.... all I focus on is making those perfect little turns and staying upright and feeling the wind in my gigantic face. I'm also a huge fan of muscle memory, because despite huge deconditioning over the last year, I can still pull it off and feel like I know what I'm doing. Oh and Hana took a lesson yesterday (after skiing with us with a leash since last winter) and she can officially ski on her own, no leash, turning perfect little turns and stopping. I was watching her yesterday and bubbling over with momma pride. She's quite a little thing. I love that little thing. Still can't believe she came out of my gut.

I go for a CT scan on the 15th and see what's really going on in the vast empty caverns known as my head. Hopefully not too far behind that is the rtx infusion and then remission. Ahhh, that magical word - 'remission' . There is a lot of virus action going on in town and I have to keep myself from getting sick as that will keep me from getting the treatment. I have a snotty, coughy four year old who loves to cuddle (as do I) so there's a lot of hand washing and sanitizing going on. Gotta be ready for the big treatment at the drop of a hat.

Here here to fresh and new!