I always thought when I found out there were no active tumor cells I'd be elated. I am so very excited and so thankful to God, but it's just not like I thought it would be. And I'm kinda frustrated because I don't know why. I know this is all Gods doing because there is no way we could have done this or made it this far without him. I still have complete faith and trust in his plan but I also can't help but think this fight is far from over. I try so hard not to compare my situation to other brain cancer warriors, but these things don't just give up and go away. And this is where I'm struggling. I know God can heal/do anything. But I'm still stuck on the fact that this will probably be my life now and a battle I will more than likely face for the rest of this life. And yet I'm so thankful to have this life!!  Am I making any sense here? It's so confusing for me to even try and explain what I mean. I guess I just thought that if the tumor was gone, things would be normal again.  Things would be  "right". But I'm finding the things I used to think would make me happy really dont. I feel like I'm contradicting myself. But I'm not sure how else to explain it. I'm guessing that this is yet a another lesson God is teaching me through this tumor.
 I've never really been a "materialistic" kind of person. But one of the things I've really been looking forward to is having our own home again. Not for the stuff but to make a home for our boys. I've always said it will be an amazing day when we can move into our own place again. But now, the thoughts of it really don't  fill me with excitement like it did before. I know I've talked about that feeling that I get before. The one that comes out of no where. I think this is the joy that God wants me to focus on. The joy that comes from him. Not the joy from a home and not even the joy that comes from a negative PET scan. The joy of trusting Him and just taking it one day (sometimes one moment) at a time. I've always said I don't care if the tumor ever goes away, as long as I can live with it. I think I mean that more now than I did when all this started. My life is so much more "God centered" now and I love it.

Ya know, I never thought I'd find another doctor who was as amazing as my obstetrician who delivered the boys and Faith. He always prayed with us and showed so much compassion. I will never forget the words he used to tell us our precious Faith had passed away. He told us "it looks like she's gone home...." when he was unable to find a heartbeat on the ultrasound. I will never forget him or the compassion he shared with us. God definitely knew we'd need him.

Once again God has provided 2 amazing doctors for us. My oncologist and his PA. Doctors that have cried with us, celebrated with us and that are there for us constantly. We are so blessed and I am more than thankful for them. I truly look forward to seeing them every other week.

Things like this are where I'm focusing my joy. Amazing people to care for us, totally sent by God. The treatments they provide. And the treatments that are now helping others with brain tumors. Praise God for that!!!

Im finding its true what they say.....the little things really are the big things.....I couldn't agree more. Going to my nephews award ceremony, sitting at the table drinking tea with my mom this morning, the excited feeling I get when I know my husband will be home, listening to my Dad sing "soft kitty" to little g while reading a book with a cat in it, the emotions that come over me when my boys come up to give me a hug or a kiss... These things bring true joy. Thank you God for using this tumor to show me this. These are the precious things that truly fill my heart with so much joy.

The Lord has done great things for us, and we are filled with joy. (Psalm 126:3 NIV)

Humbled....

I'm having a hard time emotionally right now. I'm not quite sure that it's really sunk in....
When we found out about the "new growth" yesterday, I was initially devastated. New growth is not a phrase you want to hear in the cancer world. Not only does it mean that the tumor is growing, it means the meds you are taking are no longer working. Not something you really want to think about.

I was playing Mr. Potato head with little g when my cell phone rang and my husband said "this is it..."
 The call we had been waiting for. I was sitting with my back to him, but I was trying so hard to listen to what he was saying. When I heard him say "so there are no live cells...." I turned to look at him. As I did, the biggest smile beamed from his face. I leaned over and asked little g for a kiss as the tears, once again, ran down my cheeks. Could it really be?
When he finished on the phone I immediately looked to my husband, waiting, very impatiently, for him to fill me in!! The dr told him the PET scan came back negative which means there are no active cells in my brain!!!
 I didn't really understand the whole PET scan thing but I guess when they inject you with the radioactive stuff, there is also glucose mixed in. Active cells will go after the glucose mixture for "food" which makes them "light up" during the scan. From what the dr said, nothing lit up on my scan. Nothing.  I'm still in awe... She did say that there could be dormant cells and that's why they are keeping me on the same treatment plan for now. At some point they might lower my doses but I will more than likely always be on some form of chemo. GBMs are very aggressive and grow very fast. I must say I'm very thankful to have drs that don't just wait around and watch.  I want aggressive treatment. I want these stupid cells to stay dead and gone!!

God is just amazing. I've always loved and trusted him. And I still do. Very much. But I have to admit my relationship with him has changed so much in the last year. I have learned so much about him and have honestly gained a new best friend. I've learned that just because things don't go the way I want or expect them to, doesn't mean it won't be good. Actually in most cases it turns out better. I've learned to let go of things in which I have no control and have started to be less of a worrier and let me tell you, that in itself is huge!! Quite honestly I've learned far to much to list here. All I know is I'm not the same person I was before this tumor.

This journey is far from over and I've still got a lot to learn but I am so incredibly humbled and thankful for every blessing God has poured out to our family. I think I may actually be at the point where I can say I am thankful for this tumor.

Give thanks in all circumstances; for this is God’s will for you in Christ Jesus. (1 Thessalonians 5:18 NIV)

I can't say enough about all the people who have prayed for and helped our family. You have no idea how much you mean to us. We love you all and hope you will continue to be with us on this journey of faith. There's no telling what God has in store next, so for now, one day and one prayer at a time. 

Recalculating

Being the "planner" I am really wasn't a helpful thing today. We were supposed to have blood work done, see my Dr for MRI results and then head home.....Not exactly how the day went. My dr ended up ordering a PET scan and putting me on anti-seizure meds.

I've been having a metallic taste in my mouth off and on. I just thought maybe it was a side effect from one of the meds. But as it turns out, it can be an indicator of an oncoming seizure. Not at all what I was thinking. They have always asked me about having seizures and I've always been so thankful that I haven't had one. It's just a precautionary, low dose, but I'd rather be safe than sorry.

After reviewing my MRI she explained that the spot they were watching at my last visit had not changed and that was great!! I expected to hear nothing but wonderful news for the rest of the appointment. We'd hit the road early and be heading home to our boys soon.
But then came the big old smack in the face...the one that reminded me that I have no control over anything in this journey. The one that told me Gods thoughts are not the same as my thoughts.  The smack in the face that completely blocked out everything else that was being said in the room. Even though she used the words "slight growth", growth was all I heard. Of course I started to cry. I tried to pay attention  as my husband and my dr talked about options for treatment at this point but I just couldn't focus. How could it be growing??? This was not a part of the plan. Were shrinking this tumor, right??

She wanted to do a PET scan as soon as possible to see if the cells are fast growing, "live" cells. She said it would help us determine which way to go in our treatment plan. I was relieved to hear that there are other treatments available but I must admit at the time it really didn't make me feel much better.

Within an hour they had everything set up for the scan and the tech had taken me back to inject the radioactive dye. Kinda weird to watch someone push liquid from a steel container covered in radioactive stickers into your IV. I've learned not to ask questions in situations like these because most times I really don't want to know. I think I do, but quickly realize that I don't! The scan was finished in less than 10 mins. I had to lay there for a bit afterward and durning that time I finally felt my faith coming back. I don't think I actually lost it. I just Think I was overwhelmed by the change in "plans" and it took some time to get back to Gods plan and out of my own. Lots of praying and deep breaths.

Were driving home now and still waiting to hear the results. It may be tomorrow before we get a call. Waiting is always the worst part. But I'm actually kinda glad we have this time to just think and to get our focus back to where it should be. I'm hoping and praying the call will tell us these are not live cells, that instead it's scar tissue or some other simple explanation. I know God is still in control. I'm finding peace and reassurance in that. I know his plan is better than mine could ever be. So as our GPS would say, I'm "recalculating"......your plan Lord, not mine....

"For my thoughts are not your thoughts, neither are your ways my ways." declares The Lord.
Isaiah 55:8

Making a run for it...

God showed me this morning that all of this is in fact helping me to grow and most importantly, bringing me closer to him. Sometimes I forget that. I know he uses all things for good and to bring glory to him. But I do forget. Or I get so caught up in what's happening that I don't allow myself to to remember /focus on that.

There aren't many people I have really, deeply talked to about this, but when I was diagnosed and the dr told me I had six months to live all I could think about was I don't want to leave my boys and I don't want to leave My husband. Its a daily struggle for me. I know the bible tells us not to get caught up in earthly things, but my heart always goes straight to them.   I want to dance with my boys on their wedding day. I want to know what it's like to be a grandma and even a great grandma some day. I want to be old and wrinkly. I want to hold my husbands wrinkly hand. I want to be like my grandparents, who tend to bicker, not because they don't get along, but because they can't hear each other and just keep mumbling back and forth. It's so selfish, but I was, and sometimes am still afraid that someone else will have these moments....... and I won't. That's so incredibly selfish. I hate to even write it. But I'm being totally honest here.

I know God loves me. I know he loves me more than I can even think about. But this morning I read my devotion and this is what it said about His love.

"If we were to experience the fullness of Gods love right now, we would be overwhelmed to the point of feeling crushed."

For some reason those words made me take a deep breath..... If God loves me that much, so much that if I experienced it all, I'd feel crushed...why would he make a place in eternity for me where all I would do is think about and miss my husband and boys?

I have tears running down my face as I type this. I can't explain how my heart feels right now. For over a year I have struggled and I mean deeply struggled with this. I still don't want to miss a single one of those moments, but the words I read this morning really changed my heart. 

I know I'm going to die someday. We all will. I get that. But to experience a love so overwhelming.....what am I so hesitant about? I'm not saying I'm ready or want to die today. I'm just saying I'm getting more "ok" with the idea. Huge step for me. Huge. Really huge.

I remember, probably 10 yrs ago, I was working with my Aunt. It was storming horribly outside. Tons of lightening. It was time for her to leave so she grabbed a garbage bag, cut some holes in it and started to head out the door. I asked her if she was going to wait for the storm to stop. She said "Nope. If God takes me today, I'm ready." I remember thinking she was crazy and I may have actually told her she was! But out the door she went, running to her car, with the lightening flashing all around. After she left, I couldn't stop thinking that I wished I could say that I didn't care if I got struck by lightening and died. I didn't really understand how you could say that.

Just a few months later, I was standing with her in water, repeating the Confession of Faith, as she baptized me.

Does all this mean I'm ready to run out in a lightning storm dressed in a trash bag? Not sure about that one. But I do know for sure that God is working in ways that I am totally unaware of. He took something that weighs very heavy on my heart and with just a few words, gave me peace.

I just keep thinking that even when there is rain and lightening all around, I can without a doubt make a run for it. (I don't even need a trash bag!!) because I know who's got my hand and what kind of love is waiting on the other side.

He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm. Mark 4:39

“Sometimes God calms the storm. Sometimes he lets the storm rage and calms his child.”

The Ugly......

Today was an "ugly". Just a heads up this is going to be a bit of a vent session for me.

I'm tired. I'm tired physically, I'm tired mentally, I'm tired emotionally.

As I sat on the couch this afternoon, my body aching, my head hurting and feeling like I was going to throw up at any minute I looked over at my husband and without really knowing why, I started to cry.  As he comforted me he asked what was wrong. "I'm over it.." Was all I could say. And it's true..I'm over feeling like crap, I'm over all the meds, I'm over all the tests, I'm over the drs appointments, I'm over waiting for MRI results, I'm over always asking for help, I'm over wondering if ill be there to watch my precious boys grow up or to celebrate more anniversaries with my amazing husband. I'm over this stupid tumor. I know God has a plan in everything. And I do trust him completely. But I'm over it!!!

I often wonder if ill ever feel/be normal again. I want to so badly and I pray that I will. I'm also very thankful just to be alive. But days like today I just want all this tumor garbage to go away.

I hear people complain about a headache or bring tired.  I just think to myself "they really have no clue." And until all this, I didn't either. I'll take my old tired self over this any day. Chemo tired is something you can't explain. You cant understand it unless you've experienced it. The way it makes your body feel...ugh.. And a headache......ya, you get where I'm going with this one.

Please don't think I'm saying I don't care about anyone else or how they feel. I really truly do. I'm just saying that things I used to think were a big deal, I'd gladly take any day now. A changed perspective that I really am thankful for.

I feel like I'm not usually a complainer so it's actually really hard for me to think about posting this. But I said I'd include it all. So here it is. Thanks for listening.

My soul clings to you. Your right hand upholds me. Psalm 63:8

The good, the bad and the ugly.....

I try so hard to say positive. Most days I feel great. But I realized I started writing this blog as a sort of an "out" so why not include the "bad and the ugly" too, right ?? I mean life isn't always great. I try to just write things that are encouraging and uplifting but sometimes I really do feel like crap. Sometimes I'm on the verge of tears. Sometimes I would love nothing more than to just go to bed and spend the entire day there. I don't because I know it wouldn't do me a bit of good. (A nice long nap would be GREAT!!!) but I just pray and plow thru those feelings. I don't like feeling "sick". I know that I am and need to listen to my body but I don't like it. To be honest I hate it. My body is working harder than it ever has before. And it's handling all that I'm putting it thru so well. I'm so thankful for that. I know it's totally a God thing.  But there really are times I feel horrible. Physically and mentally. Today was one of those days. I've turned into "a human barometer" as my Dad would say and weather really effects how my head feels. It's been so yucky out lately and it makes me feel yucky. Someone very special to me messages me every morning. As I messaged back, I found myself telling her how I really felt. Her response brought tears to my eyes (and gave me a nosebleed ha ha!) someone really cared that I didn't feel good. And wanted to hear about it. Huh??? How could that be?? Everyone has problems of their own. Why should they be bothered or care about mine?? But I'm so thankful she does. I want to stay positive. I want to feel great. I want to be filled with joy, trust and hope. And I'm very thankful to God that I usually am. But the human side of me still struggles every so often. So I hope I don't offend anyone when I start to post the "crap" too.  It's all part of the journey so I guess it should be included. I must admit, it kinda feels good. There are so many struggles I face on a daily basis. Most times I keep them between God and me. I feel like no one wants to hear me "complain". Everyone is struggling with something. Besides, They know I have a brain tumor. They know it stinks. They know I'm tired. They know I need help. They know...... Well if I don't tell them do they know?? Do they really know how I feel? Hmmmm. I think I answered my own question. It's like on cartoons when that little light bulb pops up over their head! I had a light bulb moment. Maybe I should be more willing to "share” everything. Maybe some people really do care how I'm feeling and what I'm going through. So from now on, that's what I'm going to do. The good, the bad and the ugly. They all fit together somehow in this crazy adventure so it’s all or nothing, right?

My little dude is napping so I'm off to do the same. I'm going to try waking up on the other side of the bed!

Though you have made me see troubles many and bitter you will restore my life again from the depths of the earth you will bring me up again. Psalm 71:20

In His Time....

God has such an amazing way of letting us know he's there. Atleast to me he does. I have been feeling great all day. Positive and ready to go. As I walked into the MRI room I had my scriptures that I always repeat and was ready to close my eyes and pray.  As I sat down on the MRI table and they placed the headphones over my ears the words of the song playing immediately brought tears to my eyes. Here with Me by Mercy Me was on.

 " I can feel your presence here with me. Suddenly I'm lost within your beauty. Caught up in the wonder of your touch. Here in this moment I surrender to your love."

I've  heard this song a million times before but never has it touched me in this way. I knew at that very moment God was with me.  I could feel his presence  and was quite honestly overwhelmed. I know he's always with me. But it's times like this that seem to "confirm" it. As emotional as it can be, I truly love moments like this. I was actually quite thankful to be in the middle of a tube with a shield over my face so no one could see me crying. It was a good cry though. An at peace and sense of relief cry. I wasn't sad or scared. Just overwhelmed by it all. In a good way. I had no idea what the results of the MRI would be but I knew no matter what God was in control and he would take care of it. I love being able to say that and find so much peace in knowing that he will.

When we met with my dr this morning and found out about the new "spot" they are watching I wasn't afraid. A little bummed because I always hope they will come back and tell me I'm completely cancer free. But that's obviously not God's will yet.  It was a great reminder to me that as much as I want to be cancer free, that may not be what is best for my life at this point. Sometimes I get so excited and hopeful for things to come in the future that I look past the blessings of today. Sure God knows what's ahead and I know he's got an amazing plan for my life. But that's for Him to take care of and prepare. My job is to trust Him and take it one day at a time. Sometimes it's hard. Because I would love to be a "normal" Mom and wife again. To be able to drive, to go for a walk with my 2yr old, to be able to have our own home again. To help my husband more and take some of the financial and daily burdens off of him. To give my parents their sanity and their house back!! To give my husbands parents their "un-scheduled" life back instead of always having to help with the boys. But that's why I love times like this. Because it makes me even more thankful for all the ways we've been blessed. We can't do this alone. And honestly, who really needs a house? It would be great to have our own space but we have a place to call home. Yes, it would be nice to drive again. My vision has not improved enough for that yet. But I can still see my boys precious faces, so I'm very thankful for sight. My husband works so hard, and I'm very thankful for his job and the insurance it provides. Our parents are amazing and help in anyway they can. So really, Who could ask for more? Is my tumor gone? Nope. But it's stable. And you know what, It really doesn't matter to me if it ever goes away. I pray it does. But most of all, I pray that I will wake up each morning and see all the faces that I love. To see my husband laying next to me and to be able to kiss his cheek. To hear my boys laughing through the walls as they wake up. (The best alarm clock ever!!) To feel our dogs cold, wet nose shoved in my face as she checks to make sure I'm awake and that I hear that "her" boys are ready to start the day. Those are the daily blessings I need to focus on. The others will come in time. His time.

Psalm 71:14 As for me I will always have hope. I will praise you more and more.