Breaking point?

What a couple of weeks. How to even describe it? I feel run over, chewed up, spit out, exhausted, anxious, and 100% completely tired of dealing with the whole thing. This GVHD is just, well, it's too much. For the first time ever, I am actually scared that the cramps and stiffness I feel in my hands could keep me from working. As previously mentioned, I am back on Prednisone. That has helped with the stiffness. But, the cramps got way out of control. So, my doctor, not really sure it would help, said, "Let's try Rituxan." Rituxan is done through transfusion. 4 times over 4 weeks. Not a pill I could just pop. So, last Friday I went in and got my first transfusion. The cramps have subsided. Ahhh, relief. But, of course, I lowered the Prednisone and *BANG* the stiffness came back. So, I upped it again today after consulting with my doctor. He is hopeful though that the Rituxan will take care of the stiffness and the cramps. It will be a relief to be able to be off the Prednisone.

But, all and all, I am just plain tired. Tired of feeling like crap. Tired of running to clinic. Tired of taking piles of pills. Tired of being a cancer patient. Tired, tired, TIRED!!! I just don't want to do this anymore. As I've said before, cancer leaves you with very few choices. I don't want to give the wrong impression. Even with all the stuff that's been happening. Overall, I am doing well. I'm just losing sight of that right now. Constant pain has that effect. I need to dig deep and find a bit more strength. It's tough but, I need to.... or else I might just go crazy.

Back on the Prednisone Pony

Well, it finally got to that point. I kept swearing to myself that there was no way, NO WAY, I was going back on Prednisone. But, the stiffness, the pain..... it became too much again. Ugh. So, here I am, back on it. It's working. The stiffness is subsiding. I feel like I can get out of bed in the morning. I can move. It is a relief. This time I am only doing a "pulse" of prednisone. Just a 3 week quick course. Hopefully coming off of it won't be as bad as it was last time. It hasn't really helped with the cramps thought. They have found their way back and this time with a vengeance. My hands cramp up so bad in the evening that some nights I just sit there, rocking back and forth, crying. And, once again, I find myself back on GVHD roller coaster.

This Thurs. I will be speaking as survivor at Genzyme. It is for the Leukemia and Lymphoma Society. We are trying to start a walk team there for Light the Night. This will be the first time I have ever spoken about my experience to a group of people I don't know. I am not sure what I will say. I have an idea. But, how do you sum it up in 3 to 5 minutes, an experience that consumed a huge chunk of your life? I know I will figure it out. I am actually very excited about it. I hope my story will move the people at Genzyme to form a team. Wish me luck.

Vacation...it does a mind good

Just returned from my second vacation this summer. What a rarity. I never, and I do mean never, take 2 vacations in the summer. I guess when you face death and survive, you realize that more vacations are a good thing and that the world won't end if you're not working for a week.

What a nice week. It was just me and my girl. My husband stayed home since work is just crazy for him right now. We rented a house on the Cape. My sister and her kids came down for part of the week. We visited friends that live down there. It was a great chunk of mom and kid time. Also, I truly realized how strong mine and my sister's relationship has become. I credit us both for wanting the relationship to be stronger and working to make it so. Things like that don't just "happen". It takes work, love and forgiveness.

But, as I could have easily predicted, my anxiety started to swell. As I drove down, the tired old track that seems never stop whenever I start having fun began to play...."this is the beginning of the end....things are going too well.....it's all going to come crashing down again...." For about 3 days this feeling of anxiety and dread stayed with me. One night I talked to my sister about it. She listened and reassured me. It helped. But, it wasn't completely gone.

Then, without me even noticing it or thinking about it, it happened. I just plain forgot about all my worry. I think I was just having so much fun I didn't even notice the soundtrack of worry and dread had stopped playing. I was just living life, plain and simple. When I finally noticed that the anxiety had abated, I felt a sense of shock and relief. I actually managed to just enjoy myself and not feel like I was destine for doom. It was possible. So often it feels like an elusive goal I will never achieve. But, my husband always tells me that someday I will just say, "I had leukemia." and that's it. It was something that happened to me years ago and I passed beyond it. I will be able to say it and not feel the dread. I will be able to think about it and not begin to worry. It is not to say I will forget. That will never be possible. But, much like forgiveness, you can give it without forgetting. Someday I will live in that place.