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)
Saturday, March 22, 2014
Thursday, March 13, 2014
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)
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.
Wednesday, March 12, 2014
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
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
Subscribe to:
Posts (Atom)