Tuesday, August 9, 2011

Some good news!

I got all of my results back from my blood work and bone marrow aspiration yesterday. I already had a diagnosis of myelofibrosis but I didn't know if it was primary or secondary and until I knew, I didn't want to panic. It's secondary which is a great thing! I will be having blood work done on a regular basis and follow the course of treatment that I decide on. I'm not ever going to have an easy path but I'm so thankful to have a path to follow!

If I had been diagnosed with primary myelofibrosis, then the prognosis would have been pretty bleak. I would have been given a survival rate of between 5 to 7 years. There is no effective treatment for primary myelofibrosis in my case. Lupus complicates every health problem whether it's obvious or not. I'll always have to be vigilant because the only consistent aspect of lupus is it's inconsistency! I'm not going to hear hoof prints and think "horses" from this point on because sometimes it really is a zebra.

I'm still processing all of the information that I've been given and I haven't quite pegged down what I'm going to do for a course of treatment yet because I just didn't know what I was planning for. It's going to be complicated because I have multiple system involvement with lupus and it's not helping to still be in the same flare that I was in a year ago. Whatever I do, the biggest piece of getting healthier will be keeping opportunistic illnesses in check and keep up with regular blood testing.

While the news is awesome and I am thankful for it, I know how easily it could have gone the other direction. I know that I'm at risk for blood related cancers and today's negative isn't a guarantee for the results that I'll get the next time around. I'm just incredibly thankful for now.



Wednesday, August 3, 2011

Counting blessings

So, I decided to conduct an experiment with regard to miracles. My plan was initially to keep track of every miraculous moment from the moment that I woke up until 8:00pm. I didn't assign values to the miracles because I didn't want to spend all of my time waiting for the "real" miracle to happen. If I had been fixated on big miracles, then I would have missed out on some of the moments that often pass by without any acknowledgement.

It's funny how important keeping track of miracles become when it feels like those moments are few and far between. My concept of what I consider miraculous has changed so much that it bares only a small resemblance to what it was. I'm working on being able to let go of the ideal miracle. I'm taking baby steps in the right direction, so It's progress. Slow and painful progress but it's forward movement. This has been a challenge for me because there will always be a piece of me that believes that nothing is impossible. There will always be place in my heart that is home to a little kid who not only believe that everything is possible even if the science doesn't support her beliefs. Who knows? Maybe one day I'll achieve my career goal and become a fire truck. Note that my childhood dream job isn't to be a fire fighter...I had loftier goals. I wanted to be the fire truck instead. Now I'm not rocket scientist, but I'm fairly certain that the technology to turn a little girl into a fire truck hasn't been perfected...yet! I believe that a large part of the jump from impossible to absolutely possible is an open mind. Everything that exists now used to be impossible. That idea is a huge source of comfort when I hit a bump with my recovery. It's really more like hitting a huge pothole that I didn't notice until after the damage is done. I cling to my childhood concept of believing that I could do anything when I hit those potholes and feel hopeless. Believing big, for me, has been the difference between swimming in rough water with everything I have in me even when it hurts the most and being dragged under without even a moment of resistance. In either case, the setting remains the same. The water would be equally intimidating and dark. The terror of the unknown would still exist. If I take a chance and fight because I have a belief that anything can be done and drown, then I'm no worse off than if I had given up hope as soon as I realized that I was in trouble.

It's a struggle to redefine my definition of a miracle. It truly sucks. I've had to redefine "normal" and that continues to be a struggle. I agonize over it. I grapple with it. I resent it. I don't want to have that experience with miracles. It's not that I'm not open to mind blowing, awe inspiring miracles. It just means that I'm open to every moment that I could consider miraculous even if the rest of the world doesn't see what I see. I don't remember the last time that I had more than a few days that weren't filled with pain. I consider myself lucky now if I have a couple days in a row that aren't brutal. I think that being conscious of as many of the moments that I see as miraculous as I can will help me. I keep butting my head against a wall that has no intention of moving out of my way. It's exhausting. The exhaustion breeds fear and apathy and it's so hard to pick myself up again. Every time I have to pick myself up again leaves a scar. It's not a matter of logic. I understand my diagnosis. It's when I feel like I've turned the corner and I'm on my way to feeling better and being stronger and then I somehow end up being back where I started, except that I lost twenty minutes because I don't know where in the Hell I am. It's really hard to put on my "Big Girl Panties" when I would rather go hide in a corner and lick my wounds.

Being aware of my miracle moments today were instrumental in neutralizing some of the crippling fear today. I just needed to be open to receiving them. Olivia's first day of driving in her driver's ed. class was amazing and she was proud and that made me feel proud, too. Steve's toe surgeries are healing up nicely and that's a great thing! Cristi came over this morning at just the moment when I felt like I was going to burst into tears because of my body's decision to wage war with me first thing in the morning. That was a divine moment. Olivia's bedroom was clean and I didn't even have to ask. Brent gave me movie passes and Tammie gave me two cans of Mountain Dew. The weather was beautiful! Even though it was really hot out, the breeze was nice and it wasn't nearly as humid. Karen gave me some ridiculously cute Muppets socks and I wore a pair of them today. It made me smile every time I looked at my "Animal" socks! I took some time for myself even though I had tasks on my list of stuff to get done. I needed this day. I needed to believe like I did as a little girl. Whole-heartedly. I think that having that ability to believe that everything is possible is a miracle in itself!