Archive for February, 2012

God Moves Mountains!

Posted: February 28, 2012 in Uncategorized

Hello everyone! Sorry it has been a little while since I have been
able to update. Yesterday was just so weird. Though it was an amazing
day, I just didn't have the energy to stay up. I ended up sleeping a
total of eight hours yesterday. And I guess I slept through the entire
night as well. But right now after a nap I'm finally ready to update
everyone a little bit!

Yesterday which is Monday, was the most amazing day! It started very
early in the morning when I was actually excited and sent out a quick
email to out leadership team here at Palm Bay Christian Church. It was
very simple, short and right to the point. I was thanking them for
supporting me during this entire amazing journey. Not too many
churches would keep a minister on staff that is not been able to
effectively stay at her job. I ended by saying that I just felt like
God was about to do something big! I really did feel that but I don't
know I just felt like I needed to share it with the guys today. I
remember ending the entire email by asking them to pray for God's will
to be done and for mountains to be moved. I actually used that phrase
a couple times throughout the email.

I was praying specific. I wanted God's will to be done and mountains to be
moved. Nothing more. Nothing less.

Two hours later I found myself again about to begin another round of
radiation. I remember thinking “okay God this is it. it's now or
never. if Youre going to show up, now is the time.” Granted, I knew He
was there but I didn't know if the others knew He was there. I wanted
Him to display His power so everyone knew without a shadow of the
doubt that God was in control.

I wanted it, but there is no given fact that it was Gonna happen. I
felt so strange. There's just nothing in this world that could explain
how I felt, lying there, waiting for my radiation to begin. I felt
sick. I am sick. Am I going insane? Why is it taking so long for them
to start. I wish I was allowed to keep my hearing-aid in. They are
probably talking about me right now. God give me patience. God give me
strength. God give me more patience…

The radiation did start after a long delay. They shine a red light
above me as my cue that they are ready to begin. I shut my eyes and
try to relax. Everything seemed to be going smoothly. No cardio
alarms. The IV went in fine.

But suddenly everything stopped and they yanked me out. The team was
all standing there. I was lying there, deaf. Awkward. My hearing aid
was handed to me and once it was clear that I was ready, Dr. A.
started with “Bethany, we are done for the day. We were able to treat
5% of the tumor.”

I knew he was talking, but my mess didn't get the message that my
treatment was over. The more I tried to listen, the more tired I got.
I just sat there.

Dr A. continued, “Bethany, the reason we could only treat 5% is
because the tumor shrank by 95% before we even started our procedure
today.”

Math was never my strong subject. I was already having a very hard
time comprehending what was going on…why was he mixing in math? I
literally missed the point. I just sat there.

At this point someone stopped the medication through the IV. They had
me rest for a few minutes and checked my blood pressure. After getting
dressed, Dr A. tried again (poor guy). He was much more blunt this
time, “Bethany, your frontal lobe tumor is almost gone. It shrank
before our treatment today started. You understand?” I nodded and
smiled. He then went on to explain how on target he was for developing
this new treatment plan and how my radiation last week combined with
the new chemo made it work. He knew it was a risk with my CIDP, but it
was a risk he had to take. He was happy his plan worked. He then
reminded me about my 2 chemo treatments this week and next week's
radiation and chemo.

I made it to the parking lot before it all registered. My tumor
shrank…by more than half! Good thing I had radiation last Monday….

Wait, I had last Monday off. He wanted me to start the new chemo, so I
didn't have radiation. Or did I? Checking calendar…how does this new
iPhone work? “Siri, did I have radiation last Monday?” Not even Siri
had an answer.

I wobbled back in and told the receptionist with Dr A standing there
that I did not have radiation last Monday. “It was Presidents Day, but
we were open” she said. Dr A's eyes got big and leaned over at the
computer as she checked my records. “Well, it looks like you were not
here after all” she said. I heard Dr A ask if that was a mistake
saying my treatment required the radiation…that there was no medical
way this (bleeping) tumor could respond this well just on chemo. He
looked straight at me and said it all again. He was angry, I was
smiling…and suddenly really lightheaded. Dr A was still ranting when
I walked away to sit down.

I sat there praying not to pass out…the cardio team had left and Dr
A was, well, preoccupied. A woman sat beside me and just started
talking. I said nothing…I barely even made eye contact. She said she
heard Dr A say my tumor shrank and there was no possible way. She told
me God did it and that He was so evident in my life. She said her
grand daughter was here getting some treatment, but she couldn't go
back with her. She had a son that passed away from cancer…she
couldn't go through that again. She didn't even want to be here today.
She hated God and she's been running from Him for a long time. Then
she looked at me and said, “But today, I see Gods not done yet…He is
alive in you. Young lady, you've got a story and you gotta share it!”

I just sat there. I didn't pass out…but I listened. She tapped my
leg and left to join her granddaughter.

I knew God moved a mountain. I was so happy, yet so tired. I updated
Facebook late last night before going back to sleep!

I'm excited, but I feel alone. I can't help but want others around me
to have these experiences to. I'm just a normal person here…God can
move other mountains too. I think God has set a new passion in my
life…I want others to experience what living by faith looks and
feels like. It's a journey, but well worth it. I feel like God has
given me a second chance at life…to live it to its fullest.

More mountain moving to come…don't just stay tuned, come join in the journey!

-Bethany

Sent from my iPhone

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Lay It Down

Posted: February 26, 2012 in Uncategorized

The theme of my day in a nutshell is “late.” I woke-up at 2PM…I remember waking for a few minutes around 11am, but I was feeling so bad, I fell right back asleep. I ate lunch around 3pm, the entire family ate dinner around 6:45pm (nobody was hungry…I think I threw everyone off!) now I'm up late with an above normal amount of energy. Annoying. I hate being so out of wack. Really missing any since of normal.

We found out yesterday that our landlord has decided to raise the rent. Our lease ends the end of April and we agreed that we needed to move on. We lived in this amazing house just minutes away from church for almost 2 years…but it is a rental. Steve has already been looking at a permanent housing solution being that houses have finally fallen into our budget range. I told him he now has a deadline. Steve is REALLY enjoying this…I HATE it! I think I used to enjoy it, but all the different choices confuses me way too much. We agreed he would start house hunting with the realtor and if he found something that he thought I'd like, then we would troop out together and make a decision. It's weird deciding to move out without knowing where you are going.

I've been focused on this verse a LOT lately…
Then Jesus said to his disciples, “If any of you wants to be my follower, you must turn from your selfish ways, take up your cross, and follow me. If you try to hang on to your life, you will lose it. But if you give up your life for my sake, you will save it. (Matthew 16:24, 25 NLT)

This was in my devotional reading sometime this past week and with all of the insanity…those little “ifs” in our family's life right now, it just hit really close to home. On Monday I officially start plan B of treatment, complete with radiation on Monday. IF the tumor reacts well to this treatment, we will continue on this course. IF it doesn't, then my team will be looking for a better place for me to go for further treatment options (and just like you are thinking, there are more ifs there too). Steve is waiting to hear back from UCF regarding IF he was accepted into the nursing program that starts in June. IF he gets in, he will graduate 15 months later with a nursing degree. IF UCF is full, then I don't think we have really even wanted to think down that road yet. IF we find a house to move to, we should have a smooth transition IF the paperwork and closing can be completed on time. IF not and IF we don't find that right house…well, there will be temporary alternative plans.

Oh the fun “ifs” in life. You do realize the word “if” is smack dab in the middle of the word “life” right? God knew we were going to have these moments of uncertainty. For me, it's the lack of control over the situation. All of these situations are out of my control. I can't make my tumor shrink. I can't get Steve into UCF and I can't make a house open up in a great location in our price range. I really think I can sometimes. Sometimes I think if I do exactly what the doctors say, or if I call UCF on Steve's behalf and rationalize with the nursing department or if I find that perfect realtor then I can control the outcome. Truth is, I haven't done any of these things completely and none would help me gain an inch of control over my insane life.

But God wants control…but He wants our entire life.

Sometimes I really bite my lip letting go of things so precious to me and put them into Gods hands because I've seen things disappear before. I've seen money we had set aside for a vacation put in Gods hands for ministry…sometimes not even having that outcome I had in mind. I've spent time away from my family investing in people that I lose in the end. I've spent time trying to follow Gods lead to do creative trips with my kids to return and go “Really? I'm not doing that again.” There's a slight hesitation to say “Okay God, I'm putting my entire life in Your hands.”

Back in August, the day before I met with my doctor that started this entire health saga, I wrote in my prayer journal asking God to “show me what faith really looks like and the patience to see Your face.” And if once wasn't enough, I wrote it twice, underlining it the second time. I re-read this a few weeks ago. It took me off guard. I remembered writing it and wanting it, but had I known then what I know now, would I write it again? Yes, in a heartbeat. With suffering and trials comes the most amazing, intimate closeness one can ever experience with God. My journey has included SO many people…all which have helped me gain patience, learn what faith looks like and yes, I've seen His face through theirs.

The point I'm getting at here is that I'm trying to lay my entire life down, all of the IFs included and let God take full control. I say “trying” because it's a continual process, everyday giving my life over to Him again (more of a reminder for me than it is to Him). Im excited yet terrified at the same time. It's a very interesting place to be…truly living by faith and really not seeing where your next step will land. It's not for everyone, but it's where I believe God is calling me right now.

God calls us to lay down our life before He can truly use our faith. The verse I shared is just a few verses prior to when Jesus makes this statement (to the same disciples that the first statement was to):
“You don't have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible.” (Matthew 17:20 NLT)

I've been hanging on to this mustard seed for months and boy, I've seen it move in unexpected ways…but no mountains…those huge walls in your life that requires God to intervene. Perhaps I hadn't given up all of my “ifs” yet…or maybe the timing wasn't quite right.

I have a feeling Gods gonna be moving…ever felt like something big was about to happen? I'm there. It most likely will not be in the way I would like or have done it, but then again that shows I'm not in control.

HE ain't done yet.
Lay it down and put that mustard seed to work…there's more than just one mountain that needs moving!

Sent from my iPad

Caden

Posted: February 24, 2012 in Uncategorized

I told you he thought it was his cup!

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Coming Out Of Hibernation

Posted: February 24, 2012 in Uncategorized

This week has been so out of even the new found normal for me. I'm very much a people person, but this week I have been so exhausted (physically and emotionally) I haven't really even been feeling up to trying to get out much. Steve decided to pick-up Josh early today from preschool and took Caden and myself with him. We drove around a bit with the a/c blasting…just the way I needed it.

As far as Thursday went, I was by myself again just so that they could monitor my cardio issues. At this point, the belief is that either the tumor or the CIDP is allowing my brain to send false signals to my heart, causing periodic heart drops in reaction to the chemo. I knew in advance that the chemo was more aggressive and would not play nice with my CIDP, but I underestimated the havoc it wrecked on my body this week. However, I am eating dinner every night now…Steve still says its not a whole meal, but it's all going down and staying down. I'm finding my balance is becoming a bit more of a challenge. I'm completely exhausted. My eyes have focusing issues at times. The leg pain hasn't exactly helped this week go much easier.

Yesterday, I returned from treatment completely exhausted. As soon as I made it passed the front door I was greeted by several boxes and cards! I literally sat on the ground for a few minutes debating if I should attempt to open right then or take a nap. Curiosity won. I received an AMAZING care package from Ashlee and her mom from Kentucky…a drinking cup (which Caden believes is his…boy is he wrong), soft socks, nail polish, lotions, earrings made by Karen and a journal! Everything even matched! I was SO excited…and Steve had to remind me I had more! Sarah (the girl I met last week) has a brother-in-law that works with cell phones. Sarah sent me an email earlier on in the week asking if I could use another phone…the one I have is constantly freezing, gps fails constantly, hangs up on itself and I can't get an upgrade. We are with Virgin Mobile, a pay-as-you-go company that operates off of the Sprint towers. When we were talking during treatment, my phone literally dialed three random people while it was sitting on a table a few feet away. She asked me then why I didn't get a new phone…between cost and trying to pay $50 bucks or less for my unlimited everything (talk, text and web) I wasn't finding any good deals. She agreed. In the other packages I received a new iPhone from Sarah's brother-in-law that operated off of the Straight Talk network…everything I need for $45 a month…wow. He even included an Apple warranty! I've been playing with it a bit today (I haven't ported over my number yet). Steve says I have officially crossed over to the Mac side. After waking up from my nap yesterday, I opened up 3 cards from friends here in Florida…all 3 made me laugh out loud with personal messages included. Late last night I realized I missed a package…Sarah sent me a new case for my new iPhone! It was beyond me how to even attempt getting the thing on, but Steve got it and wow…there's no way this phone is going to break(did I mention I've dropped my phone a few times??). I've already talked with Sarah and Facebooked with Ashlee…and my Florida friends will get a call over the weekend (from one phone or the other)….but WOW! I feel like I was ambushed by love!

John 10:10 “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”

Some translations have the term “abundance” instead of “full.” I thought of this passage as I went to bed last night. I finally really got it. All of these things I received were great and really, I hadn't really touched them last night…because I was celebrating the PEOPLE behind the gifts. friends in Kentucky that can support one another though far away, a new friend brought into my life through Gods perfect timing and my church family walking this road with me one step at a time. Never have I felt so terrified, yet so full of life. I have gained such a new perspective about what it means to truly live through the faces and lives that God has brought into my world through all of this. This is living life to its fullest.

Thank you everyone for your encouragement!!! The timing was just amazing…and once again, God provided what I needed when I most needed it. You all have no idea the impact you are making in my life. LOVE YOU ALL!!!!

Quick Update

Posted: February 23, 2012 in Uncategorized

It just registered that I didn't update yesterday…almost didn't update today either. Nobody panic! The new chemo has really thrown me another curve all…truly, no two chemo types are alike. Tuesday I was upgraded to a private room because I completely passed out within 20 minutes of starting treatment. My regular cardiologist was not on scene, so I had to wait for him to arrive and then proceed. I never really bounced back…I was so tired I came home and slept until 7 then went to bed around midnight and slept until noon today. Tonight I kept chicken down, along with rice and a slice of bread…but I really had not eaten since….umm….okay, I was really hungry and my body decided to keep everything down.

Tomorrow (Thursday) is chemo again…then off until Monday. I do know my cardiologist is planning to meet me tomorrow morning. Leg pain is back and my head feels like it is constantly spinning. I've been reassured the spinning thing is normal and my team is beyond thrilled that I'm able to eat again. I ended up calling the doctor today just to make sure…you never know.

My energy is completely gone…boo. Not even pregnancy energy drain is this bad! I have found that Ale81 (soda from Kentucky with a boost of caffeine) helps, but I can only make it through half a can. I have re-added V8 to my drink selection and green tea is good too.

I feel like I'm rambling, so I'm getting off. Hoping tomorrow will be easier…if not, I'm making Steve update (and you know that will be REALLY short!).

HE ain't done yet….
-Bethany

Sent from my iPad

Made You Smile

Posted: February 21, 2012 in Uncategorized

Not really feeling good tonight but I wanted to share a pic from our nightly “video iPad time.” It's somewhat blurry because it used the front facing camera and because the bed was moving…a lot! I'm putting this in a few different places to keep me going over these next few weeks.

The Plan…B

Posted: February 20, 2012 in Uncategorized

Today has been in and out (fun times). However, I ended up really wanting a slice of pizza tonight. We still had a frozen pizza in our deep freezer, so I got my wish. It didn't stay down…but it was completely worth it! Steve and I have it down to a science now…instead of Lettermans “Will It Float?” we play “Will it digest.” Really…we are starting to have fun with it…it's been all laughter in our house today. We know, we are weird, but we like it that way!

Debra – I DID try the ginger ale and I really think its the carbonation that's just setting me on edge. However, tomorrow I'm trying green tea with honey and ginger. I wasn't even thinking about trying that one tonight.

I thought I would briefly (as promised) outline the new plan of attack outlined by my medical team.

Starting Tuesday I will begin a new type of chemo that is basically more aggressive towards the tumor and less empathetic with the offset of CIDP side effects. This means I will be getting a full dose of the new chemo, IVIG and then a combined IVIG with a different type of chemo for the CIDP. A lot to take in I know, but it's basically combining what I've already been doing with a different, in-your-face chemo. Sounds like a real knockout doesn't it? My infusion days will continue to be every Tuesday and Thursday. I rotate between two facilities, pending on who is on cardio duty. Funny thing is, I now feel comfortable at either place…everybody knows me!

Starting Monday, February 27th I'll go through 2 more rounds of guided radiation, along with my infusion days. March 5th will be my last round of radiation and March 8th will be my last day for chemo before a break (length to be determined by MRI results).

In summary…this week is JUST the new chemo on Tuesday and Thursday.
The following 2 weeks are radiation on Mondays and infusion days on Tuesday and Thursday.
Then a much needed break…I'm headed to the beach.

I don't know about you, but I'd really like March 8th to be my last chemo day…ever. Sound like a plan? So, I like to put dates with all my requests to God…that way I can mark down later how He responded. This is a first that I actually included a due date with the request. I really do believe in this little mustard seed of faith I've been carrying with me. I really do believe that all things (not just the things we think might be possible, or think we deserve, or think that we can do) I said I believe I can do ALL THINGS through Him who gives me strength. I've seen God move in amazing ways through this journey and like I've been saying…”He ain't done yet.”

Plan B starts Tuesday. Glad you are here with me friends and prayer warriors. Get ready for another crazy ride!

Sent from my iPad