These last few days have been a blur. I'm sitting comfortably in our family room, wearing my pajamas and it's going on 2pm on a Wednesday. I'm never home at 2pm on a Wednesday! I'm usually at church, preparing for the night of activities for our PBCC kids and families.
But this Wednesday is different. My body is enduring the side effects on Mondays guided radio surgery and Tuesdays chemo and ivig treatment. I went to bed last night somewhere between 11 and 11:30PM. I didn't even blink an eye until 11:30am this morning! Twelve hours of sleep…am I reverting back to my teen years?? I just feel completely not myself…like I'm living someone else's like…it's just surreal.
Yesterday was HORRIBLE!!! No sooner had I updated the blog, my heart rate dropped and my little world of calmness came crashing down. The team was trying to cut down my time by using a Y tube, which allows chemo and ivig to be administered at the same time. A bit into the treatment my heart rate dropped, which led to break number 1. After the pacemaker was checked, we restarted the IV and a few minutes later my heart rate dropped even lower, leading to longer break number 2. Now with a heart monitor we go at it again and 30 minutes into things, my legs start throbbing and then shaking uncontrollably. I lost it…I never lose it, but I did then. The team was right by my side the entire time and within a few minutes my legs were still again, but the pain was horrible. We decided to take a longer break…I needed it, they needed it…I think we were all on edge at this point…and very frustrated. After some Sprite, we regrouped and decided to just administer the ivig itself, then the chemo. After another quick leg seizure (which is a CIDP issue…just one I've never encountered before), the rest of the treatment went fine. I was also given more meds to help me relax, which pretty much sent me to my happy place for the rest of the day. I checked-in for treatment at 8:30 and left somewhere after 4pm. As I was leaving I heard someone say, “See you Thursday Bethany…we will be waiting for you.” I remember thinking, “Oh crap…I have to go through this again!”
After treatment, I opened a few more emails and cards. The first card I opened was so weird…it opened in different ways, had text upside down…I wasn't sure if it was me or the card that was messed up!! Then I read, “Sometimes things don't always go as planned…but God is in control.” WOW! That couldn't have been any clearer! Leave it to God to slap me over the head when I needed it most. The neat thing was, this person had NO clue what my day was like and this was my Tuesday card…not Wednesday or Friday…but picked exactly for this day. It's okay, I got chills too!
I also opened a card with the coolest angel pendant reminding me God is always with me. I haven't found the right place to keep this yet, but it really helps to remind me of YOU…it's so easy to forget that I have people not only interested, but praying during my journey. This is now my reminder…I will find that right place.
I have been reading my texts, though I haven't been with it enough to respond much…sorry! But know that they are encouraging to me so much! So much so, my cell phone is on the brink of its death I think. I told Steve I wanted an iPhone…he laughed, I guess that means no.
How am I feeling? I'm numb, both physically and emotionally. I get tongue-tied during conversations so easily…it's frustrating to me. My energy level is, well, not. But I haven't exactly done much to help…I have absolutely no appetite, so I haven't eaten anything. I think the last time I ate was late Monday night…homemade soup by a church friend. But I am drinking Sprite, keeping up with all of my meds and trying to stay hydrated…I HATE DRINKING WATER RIGHT NOW!!! I'm not sure what it is…but the taste is making me gag…I just force myself to drink a glass every few hours to keep myself hydrated. It's a blast really…and Steve has everything down and is TRYING to be my mind and mouth right now…poor guy!!
I know this is out of order, but GO KENTUCKY WILDCATS!!! These guys are the reason I stayed up last night…watched the game thanks to a friend allowing me access to the ESPN live feed app on my iPsd!!! I can finally watch my Cats at home…YAY!!!! We don't have cable…and now we really don't need it!!
I'm about to post another update related to the Strong Enough post. It will be a good read…I think you will enjoy it. This post was way too scattered to post here.