A little background to this post...I wrote this post while at chemo on Saturday, April 21st. I saved it as a draft to edit later (I've learned that the iPad loves to correct words...just not the words I want). I edited later, but left the majority of the post untouched.
This post has been my most challenging to write. Perhaps it's because I'm sitting here in chemo and the effects are clouding my thoughts. Perhaps it could be due to my overwhelming exhaustion...constantly feeling gravity sinking me down with every step I take. But really, I think it's due to the fact that when the God of the universe intervenes in your life, it's really difficult to put it into words.
But I wanted to post, mainly because the news of my clear scan from yesterday is traveling all through Facebook, I wanted to shine a bit more light into how this came to be and other ways God has been moving in my life. So, brace yourself...this may be a longer than normal read!
First, let me start out by saying that I truly believe God works in the lives of every human being, in one way or another. Some see it easier than others. But there are times that Gods presence truly is visible, even to those without a relationship with Him. I'm not going to try to determine how or why God displays His presence and power in the ways that He does...but all I can say is that I'm sitting here now going, "God, I know it was you. Is this permanent or just a break before the next storm?" I have more questions than answers, yet I'm celebrating in my confusion. It's a really weird place to be.
Here's my story...
Last Sunday night, I started experiencing mild leg pain caused by my CIDP. This is a normal routine for me at this point being that I have not been able to take prednisone or IVIG to help with my CIDP symptoms (as an effort to give the chemo and radiation a fair, interference free chance to have some effect). I knew that my scan was scheduled for Monday, April 23rd (it was changed later) and I admit, anxiety was building. The doctors had already sat down with me about the reality of the situation. I have 2 malignant brain tumors that have not responded well to treatment. I have CIDP that is such a rare condition, no doctor in our area has had experience with it directly. My heart is reliant upon a pacemaker and my muscles from this operation has still yet to heal correctly. Nobody wants to take the risk of surgery...nor were there any other doctors that had experience with all of these areas that felt confident to take on my case. I had just signed a release of records document up to John Hopkins center in Maryland that was interested in looking at my case (and has a neurologist on staff that has dealt with CIDP directly as well as various types of brain tumors...just not both at the same time). My records had been sent to several other locations, each denying the case due to lack of knowledge or treatment options. Medically speaking, our family was preparing for the storm to continue. I knew God was with me...His presence is obvious to me now in these uncertain times more than any other time in my life.
But, I was scared. Being I don't know anyone with 2 malignant brain tumors, CIDP, cardio conditions and Charge...it's just fair to say that nobody really understands what I was feeling, thinking and going through. Maybe that's why I felt God more during this time? Eventually, my pain would lessen or I would finally get to the point where I drifted off to sleep. Starting Sunday night (Monday morning) I had the most unexplainable dream. It would start by a dark, clouded sky, filled with rain, thicker and hard...it appeared like solid ice pouring down. I literally felt like the storm was pressing down on me. The thunder was loud and vibrated my entire body, head to toe. I was drenched and I remember looking up to the sky with my arms stretched out...I knew I was asking God, "Why" but I never said anything. Then suddenly, the clouds broke apart, the rain stopped and the sun poured down. It was silent...I felt my heart pounding hard. Then I heard, "Trust ME Bethany. I will make everything clear in time. You are not a mistake. You are Mine." Literally right after that last word rang out I would wake-up to Josh's voice or Steve trying to wake me up again.
This dream occurred every single night. Every time the dream ended, I felt uneasy, almost like God was going, "Do you really trust Me?" Reality was...no. I was tired of trying to trust God and going into chemo and radiation with no real results. I was tired of the pain I was going through. I was tired of trying to adapt to all of these lifestyle changes. I was mad watching my son Josh literally freak out when I can't be with him. I was angry that we are still not sure where we would be living next week because of our home search saga. Everything seemed like it wasnt making sense. I believed in God. I felt God. But I didn't really trust what He was allowing to happen with my life...and He was calling me out.
Tuesday afternoon I got a call that my scan was being moved to this Friday. With the dream on the back burner I was silently questioning if this had any connection...no, I really need sleep.
Around Wednesday I finally snapped. This dream was occurring no matter what I tried to do to avoid it. Then after it happened, I was stuck dealing with the reality that I really had lost my trust in God. It wasn't the greatest place to be...and who in the world would really believe this dream? I really believed it was coming from God, but my mind has become so foreign to me lately...I have been second guessing myself...a lot. Perhaps I had finally gone off the deep end? I found myself shutting my eyes and just describing everything that was going on to a wise friend of mine...I couldn't even look at the reaction...I just blurted it out and held my breath. I literally felt like I was going insane.
I was advised with the reality that this could be something due to medication, or it could be from God. (What? No...not me. that only happens in the Bible...not to people like me...I'm already weird!!). Then I was asked this question, "What if this was from God and you believed it. Would you lose anything?" My initial thought was...ummm...YEA! Hello...since August I've been going through medical chaos with no real options. I've felt pain that I never thought possible. I've missed family moments because I've been so sick. I hate having a cane and a walker. I don't know how any of this will end...and you want me to trust this dream...as in try to trust God with my life? Look where that has gotten me! I had accepted God in my life. I knew He was controlling my life. I had completely given up trust that He was going to end this storm...it's been constant for 9 months and now I'm supposed to believe that He will suddenly end it. Wait a second...end the storm? He never really said how exactly...just "Trust Me." Yea...I'm not liking where this is going.
I was challenged to "lay my cards out" before God. Really go to God and open up my fears, concerns, what I believe He can do through me if He would help me...so, Wednesday night I did just that. I journaled. I prayed. I laid everything out and finally told God that I will trust hIm...just needing Him to teach me how to trust again. I needed to renew my trust in Him on a daily...sometimes hourly basis. It's not just something that can be said or done once and then move on. It truly is a renewing commitment to Him. I've never felt so scared and comfortable in my life. Putting your life in Gods hands is never the safest place to be...but it will allow you to experience His presence like never before.
I had the dream Thursday morning...but woke-up smiling and at complete peace. It was really weird...but satisfying too. Josh had a bad morning, so I ended up picking him up early and taking him to the movies. He wanted to sit on my lap. He wanted time with "just mommy." Kids can read when something isn't quite right...it was so nice just blocking everything out momentarily with him. That night Steve woke-up around 1AM and spent some time with me...I was wide awake scanning Craig's List for free stuff. He turned on Netflix and we caught-up on a few shows we missed. We talked, laughed...it was so much fun! I don't remember what time he made it to bed...or I made it to bed...but I'll never forget just laughing with him at like 2AM in the morning!
FRIDAY...Got woken-up to the dream, threw on jeans and a t-shirt and booked it to my appointment...an 8 AM appointment is hard enough...without sleep makes it even harder. I get to the building and I remember looking at my watch going, "Man...I got here too early...they are going to think I'm anxious." Wobbled in, signed-in and took my seat. Bored. Looked at my phone and saw a message from a friend that simply read, "Praying." I smiled. It hit me that not a lot of people knew about my rescheduled appointment. I thought about blogging about it just to ask for prayer...but, what if it was bad news? The hardest part about having this blog is bringing a load of people with you through your adventure. It's great when you have good news. It's not so great when you have bad news. I decided to just remain silent (that should give you a hint that this dream really was getting to me a bit).
I was called back to prep. Took earrings, watch and rings off. I have a special box for my hearing aid that's within an arms reach after I get done (the doctors always start talking to me as soon as I get done...it's nice to have it close-by). Knowing the drill, I lay back, shut my eyes and start making deals with God. "If the storm could stop now, I'll do anything...umm...well, not anything...maybe anything...If you make the storm stop we will work out the details later..." While I was still trying to come up with something to offer, I get pulled out of the doughnut hole and reach quickly for my hearing-aid. Dr. A says, "Bethany, I'm sorry..." I'm thinking "Oh crud." Then he continues, "We need to restart the machine and verify that it is functioning properly." Ok...so, I grab a seat in the internal waiting room right outside the CT scan rooms. I'm sitting by a lady I met a few weeks ago, also with a brain tumor. She was talking on the phone about how she would give "him a call back" when she knew something. About a few minutes later, I get called back and my friend gets sent back to the other scanning room at the same time. Leaning back, again. Goung through the doughnut hole, again. Talking to God, but this time I gave up trying to bargain...at this point I'm praying to get a result...I don't want to wait for another machine. Just give it to me straight and I'll figure out the rest later.
I remember thinking, "I think they found something." I was in there for a while, but usually they scan and start radiation (with MRI). I didn't want to fall asleep...I remember thinking, "If I fall asleep here, I would be really out of it. I could drool all over this table and what would these guys think!" I started laughing...which prompted the red light which reminds me to lay still. I smiled. This really isn't how this should be going...something is wrong and I'm laughing. Wow...I've lost it.
Finally the table moves back to the original position, but no doctors...yet. So I quickly grab my hearing-aid and brace myself. Dr. A emerges slowly shaking his head. "Well Mrs. Boring, we couldn't find the tumors anywhere. I thought the machine was returning false results. It's as if the tumors were never there." My mouth dropped. He was still talking and I just sat there...finally he stopped. "Bethany, you have a clear scan for now. I want to schedule you for chemo as a preventative measure. You still have over a 65% chance that this cancer will return. I want to do everything I can to make sure it doesn't." I agreed and Dr. A left.
RIght before I got to the door, the guy from the computer room got my attention. He asked, "Bethany, you got the scan I sent you from 3 weeks ago, right?" This guy told me 3 weeks ago that he would send me the last scan, which was from my last day of treatment, right before the radiation. They got a CT scan but also a MRI. He sent me the CT scan on...ready for this...Easter! Seriously, Easter morning right before the service my phone pulls up his email...with this huge blob, another weird blob and I start thinking, "Jesus has risen from the dead and I get two tumors in my inbox...Happy Easter to me!" I was nice to the guy and responded, "Yep...got em...thanks!" Then he asked, "Want to see the scan from today? I'll show it to you!" That was a no brainier...I always wanted to go back behind the glass. I make my way back and I peer, timidly, at the screen. He showed me the old scan first. At first, I didn't realize it was the old scan and thought Dr. A was really off today. Eventually, I realized where this was going when he said, "Okay, so I sent you that scan so you could see what Dr A was talking about. Sometimes you just need to see what you are facing, you know? But today's scan is so different. There is really nothing there." Then he showed me this:
My mouth dropped, again. You can see there are dark spots and the more he magnified the more uneasy I got...it was swelling, he assured me...but the tumors, they were gone. He went on to tell me that he had been doing this for over 20 years and has never seen a scan go CLEAR like this. "It's not possible in just a short amount of time to go from where you were to this. That's why we reset the machine because we thought we were getting the wrong image." By this time I was sitting down again. I remember shaking my head and saying, "I don't believe this!" The tech answered back, "You must feel like your storm just cleared up out of nowhere, huh!" Mouth dropped again and enter Dr. A. He got one word out before his phone started ringing...his ringer went, "I can see clearly now the rain is gone..." The tech and I just started busting out laughing. I couldn't quit...it was all too good, too perfect...too good to be true.
The tech told me he would email me the new scan with a before and after picture included. Technically I guess I'm not supposed to be sharing these pictures, but sometimes I think for some seeing is believing. So, it helps.
I ended up going to register Josh for VPK and while standing in line I called Steve to share the news. I went through the very shortened version of the story. He knew about my weird dream too. I remember him saying, "What? They can't find the tumors? What?" Then I had to tell him that after I got through this line, I'd be headed for chemo. He agreed that would be smart. I get off the phone and people around me are smiling. I pretend not to notice...but yea, I did. I was even allowed to cut line to get to my next appointment....I took it. Got Josh registered and checked-in at chemo.
The friend I saw earlier sitting outside of the imaging area was in the sitting area, again on the phone. I just heard part of the conversation, "I know. I don't want to do more chemo and radiation...but it's growing and we have no more options." I swallowed hard. Just a few hours ago her and I were in the same place. I knew her story and she knew most of mine. We met eyes as my name was called back...I stopped and gave her a hug (I'm not a hugger...but I felt like I neeed to do something) and tears filled my eyes. It didn't really hit me until right then...this is far from over. It was right then that I heard Dr. A reminding me, "You have a long road ahead...this is far from being over."
Was this permanent?
Is this a healing?
Will this cure my CIDP too?
Will I jog again?
Is this just a break from the storm?
Why me? God, can you "clear" her tumor too? Just tell me what to do and I'll do it!
Getting hooked up for chemo really put me back to the reality that this was far from over. I passed out twice and my heart monitor went off at least 5 times. Usually I get on Facebook or watch a movie...but today I just sat there, talking to God. As I asked the questions on my mind, it's almost like He reminded me to renew my trust in Him every step of the way. One would think after getting a scan such as mine that everything would suddenly make sense, the pain would end and it would be happily ever after.
I wonder (and now wish) we had a record from the Bible about the lives of people Jesus healed and how they were changed. The blind man that was healed was a beggar...did he ever get a job? Lazarus was DEAD...how long did he live?
I feel overjoyed that these tumors have been "cleared" and I'm giving God the credit...His fingerprints are all over this. But now I'm going, "Why?" Not everyone gets this. I'm sitting here in chemo today and every single person here would want what I got yesterday. What makes me special? How can I minister to those surrounding me? God has given me this gift allowing me to truly understand what they are going through. Is God putting another calling on my heart?
So far today, chemo has been uneventful (they even accidentally gave me nausea drugs...I was going to say something, but it was already in and going so yea...I deserve it. sssshhhh....). Yesterday (Friday) I threw-up multiple times and went to bed around 4:30PM...stayed there until around 8AM this morning. And my dream is gone.
So...I'm not sure where all of this is going. Perhaps this is the beginning of yet another adventure God is calling me to. But I'm taking it one day at a time, one step at a time, renewing my trust in Him each step of the way. Prayers still needed. I have a feeling that God ain't done yet.
(Edit) Chemo ended up taking longer than expected due to the heart monitor and vital checks. But I was sent home and hoping I can rest a bit s I can attend church tomorrow!!