Wow, why is it that I have not blogged since JUNE?! I suppose being busy with Believe In The Cure is a good excuse J
This entire journey has really transformed me in ways I never knew possible. Me, Jo, the gal who always controlled every minutia of my life, was handed a life plan where Step 1 is to let go of the control. There is no control in CLL. Zero. Zilch. The only thing I can control is how I look at my life and learn to peacefully live with this. Although, up to this point, I have felt pretty much in control of every aspect of it (as long as I had no symptoms and blood work was normal) because I was in remission and running this fabulous successful-becoming charity!
Well friends, guess what? This girl, yeah me Jo, lost all control last month. I LOST IT and had many, many moments of weakness because of some darn persistent lymph nodes that WOULD NOT AND DID NOT go away after my cold symptoms went away.
Uh oh…not in my plan. Not in my control. What the heck? Why won’t they go away? I mean, I have had other colds and those darn things never showed up and the only time they were ever present was when I was going through all this junk 5 years ago. Guess what happened to this girl? I got scared, really scared and was really not ready to face it again. Even though what I preach is acceptance, I was really conflicted with it at this time. Maybe I can’t handle it. Maybe what I have been telling all my Believers is a bunch of garbage? How can I be such a hypocrite and not follow my own advice? Here we go again…doubt, fear, doubt, fear…and ANGER.
So, I went to what I know, what I do when crisis happens. I prayed, I told my dearest friends that I was scared and feeling so weak, I cried, I hugged my children more and more, I lost a ton of sleep, and I called Dr. Flynn.
What I found out by having this scare is profound and a lesson that I will never ever forget.
I made the appointment with Dr. Flynn and usually when I see him I jump up and give him a big hug. Not this time. I couldn’t even bring myself to smile, almost like I was afraid to disappoint the guy who is responsible for putting me in remission. I wanted to beat those statistics and make him proud and I was ashamed because I was certain I had come out of remission.
I cried as he felt around my neck and felt the lymph nodes. I will never forget this next series of events: He sat down, logged into his computer, pulled up the results, and they were NORMAL. What? Are you sure it’s today’s date? Please check again and again. Oh my gosh, I drove him nuts. The look in his eyes when he said they are normal meant so much to me. I saw relief, assurance, and sadness all at the same time. Relief for obvious reasons, assurance for obvious reasons and sadness because he knew my struggle and fears and most likely wished I would find peace with it.
I have found peace finally. Peace because I have learned acceptance. Peace because for the first time I actually understand my disease. Here comes the education aspect of my blog. Remission does NOT mean a cure. I expressed to Dr. Flynn that I can live with it coming back and I know how to deal with that, but I can’t live with or deal with the constant fear of it coming back. His straight-up answer to my statement gave me peace. He explained to me that it never left so you can let go of the fear of it coming back because it is still there. It’s in remission which basically means that it is asleep and it is likely that it will eventually wake up.
When I got an infection this last time those white cells rushed to the site to clean it out. They did their job and I was feeling back to normal within 10 days. The lymph nodes are still swollen and may always be swollen because my white cells still have CLL and always will, they are just currently not multiplying. Because of the nature of the cell my body doesn’t recognize it and it takes a longer time to dissipate and actually may never even leave the site.
As long as I feel good and my labs are normal (and normal for CLL is different because labs are pretty much considered normal until I start having physical symptoms) we move on and live on. My labs currently are totally all within the actual normal ranges. If and when I do experience symptoms (fevers, infections that don’t go away, night sweats, decreased red blood cells) I will take a NON CHEMOTHERAPY pill that very recently passed through the FDA to knock me right back into remission. Easy- breezy- lemon- squeezy.
Not only has Dr. Flynn been pivotal in the remission of my cancer, he also has healed my spirit. Who woulda thunk ? I now know how to let go of the control and live with My Disease…and it really ain’t that bad J