Julie was able to drink a small amount of water, a small amount of apple juice diluted in water, and a small amount of chicken broth today and tolerated it well. She could have probably had more, but she was strongly encouraged by the doctor to take it very slow.
Julie also walked today without the walker (I walked with her as a safety net) and is gaining in strength (ability to get up unassisted, etc.).
Overall, I would say this is probably the best day we have had since before surgery.
Ben
Monday, October 30, 2017
Sunday, October 29, 2017
10/29/2017 Update
The labs continue to come back as expected. Also, today is the last day for antibiotics for the UTI -- all of the labs and the symptoms indicate that it is gone. We did get get moved into a regular room yesterday afternoon just in time to watch the GA/FL game. We are thankful for being able to get more rest as it is quieter up here. The Heparin IV was removed as scheduled as she is now getting a shot twice a day of a medicine that we can and will administer at home to prevent new clots.
Julie has been continuing to improve in strength and general well-being. She was up walking 3 times today and walking 2 full laps on each time out. She is now starting to actually want visitors (but if you come visit please make sure you are not sick or been around people that are sick), watch TV, check Facebook, talk on the phone, etc.
The clamping of the NG tube did not work out so well -- she was having problems with nausea even before they clamped it and eventually vomited -- forcing them to turn it back on. Friday afternoon the doctor decided to keep her on it throughout the weekend and try clamping again on Monday. However, tonight the tube came out by itself so they are going to try leaving it out. Pray specifically that her bowels start up fully and that she not experience nausea or vomit -- if she vomits they will have to put a new tube down her.
We still expect to be in the hospital for a number of days as they are keeping her on the TPA (feeding tube) until she is able to slowly progress through the various diet stages to slowly introduce food back into her intestines and is able to eat enough calories without the TPA to continue to heal appropriately.
Julie is experiencing no pains and is not receiving any pain medicine (not even the Tylenol).
Ben
Julie has been continuing to improve in strength and general well-being. She was up walking 3 times today and walking 2 full laps on each time out. She is now starting to actually want visitors (but if you come visit please make sure you are not sick or been around people that are sick), watch TV, check Facebook, talk on the phone, etc.
The clamping of the NG tube did not work out so well -- she was having problems with nausea even before they clamped it and eventually vomited -- forcing them to turn it back on. Friday afternoon the doctor decided to keep her on it throughout the weekend and try clamping again on Monday. However, tonight the tube came out by itself so they are going to try leaving it out. Pray specifically that her bowels start up fully and that she not experience nausea or vomit -- if she vomits they will have to put a new tube down her.
We still expect to be in the hospital for a number of days as they are keeping her on the TPA (feeding tube) until she is able to slowly progress through the various diet stages to slowly introduce food back into her intestines and is able to eat enough calories without the TPA to continue to heal appropriately.
Julie is experiencing no pains and is not receiving any pain medicine (not even the Tylenol).
Ben
Thursday, October 26, 2017
10/26/2017 Update
Things are progressing well now. Dr. Robertson cautioned us that we are not "completely out of the woods yet, but there is more sunshine than clouds"; meaning there is a slight risk of problems with the colon due to the previous lack of bloodflow. The good news is that all of her labwork is continuing to come back consistent and within expected ranges indicating there are no problems of that nature and no bleeding as well.
They have now clamped the NG tube (the tube that pulls stuff out of her stomach) with a plan to keep it clamped for 4 hours then measure how much bile is pulled out with a syringe. They have not yet had to reconnect the NG tube to the suction device today so there is a good chance of having it removed tomorrow. After having it removed, this is the first step to preparing to introduce clear liquids (starting with water). If this goes well the next step would be to try it with some water and repeat and eventually take it out if all continues to go well.
We had orders to be moved out of ICU and into a regular room, but the floor she needs to be on is full so she is still in ICU tonight. This means that as soon as somebody on that floor is discharged and they get the room clean we will be moved back up to the 8th floor.
They are also taking her off of heparin IV tonight and going back to a therapeutic dose of Lovenox injection, which is what we will continue to do at home.
We still expect to be in the hospital for a number of days as they are keeping her on the TPA (feeding tube) until she is able to slowly progress through the various diet stages to slowly introduce food back into her intestines and is able to eat enough calories without the TPA to continue to heal appropriately.
Julie has no pains now other than tenderness where they went in for the procedure the day before yesterday.
If you are on Facebook, I have created a group that you can join where I put out updates as we get information throughout the day. I am trying to summarize the information here at night, but you will get more real-time data there.
Link to group: https://www.facebook.com/groups/AgeeCancerFight/
Ben
They have now clamped the NG tube (the tube that pulls stuff out of her stomach) with a plan to keep it clamped for 4 hours then measure how much bile is pulled out with a syringe. They have not yet had to reconnect the NG tube to the suction device today so there is a good chance of having it removed tomorrow. After having it removed, this is the first step to preparing to introduce clear liquids (starting with water). If this goes well the next step would be to try it with some water and repeat and eventually take it out if all continues to go well.
We had orders to be moved out of ICU and into a regular room, but the floor she needs to be on is full so she is still in ICU tonight. This means that as soon as somebody on that floor is discharged and they get the room clean we will be moved back up to the 8th floor.
They are also taking her off of heparin IV tonight and going back to a therapeutic dose of Lovenox injection, which is what we will continue to do at home.
We still expect to be in the hospital for a number of days as they are keeping her on the TPA (feeding tube) until she is able to slowly progress through the various diet stages to slowly introduce food back into her intestines and is able to eat enough calories without the TPA to continue to heal appropriately.
Julie has no pains now other than tenderness where they went in for the procedure the day before yesterday.
If you are on Facebook, I have created a group that you can join where I put out updates as we get information throughout the day. I am trying to summarize the information here at night, but you will get more real-time data there.
Link to group: https://www.facebook.com/groups/AgeeCancerFight/
Ben
Wednesday, October 25, 2017
PRAISE GOD!
[Hab 3:17-18 ESV] 17 Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, 18 yet I will rejoice in the LORD; I will take joy in the God of my salvation.
This verse was our devotion from yesterday. I read it before they took Julie down for the procedure yesterday, but in the activity that was going on never was able to read it to Julie.
Before I share an update with you I want to say that God is worthy of Praise because of who he is and not because of what he does for us. Habakkuk witnessed the collapse of most of what mattered to him, but he said, "yet I will rejoice in the LORD; I will take joy in the God of my salvation." So we praise God for who he is.
AND
Today we also praise God for what he has done. Several people have shared that they were praying and others fasting and praying. I saw where God had several in our church up all night the night before praying for Julie as well as another member of our church who was in ICU in another hospital. Julie's blood clot is dissolved and gone and blood flow has been restored to her colon with no indications that the colon was damaged and with none of the very serious risks that she faced with the aggressive treatment. There is no explanation for this other than God heard the many prayers of his saints and performed several miracles. He also heard the prayers of his saints and performed a miracle in Bo (the other church member) in that he is now responsive.
So please join us in giving God praise and glory not just for who he is but for what he has done!
In His Name and To His Glory!
Ben
Tuesday, October 24, 2017
Update on Surgery 10/24/2017
Procedure is complete. Dr just talked with me. They were not able to get all of the clot because it had been there too long. They are going to continue another treatment of focusing clot busting medicine into the clot for 2 to 3 days while she is in ICU.
Ben
Ben
Monday, October 23, 2017
10/23/2017 Update
First, the good news -- Julie reported this morning that she was more comfortable last night than any night since surgery. This was encouraging to us and made us feel like we are making real progress on this clot.
Around 2:45pm this afternoon, she had a Ventricular Tachycardia heart rhythm event and hear heart raced up to 180 bpm while she was sitting in a chair. Thankfully the nurse was able to give her some instructions, which she followed and ended the event without having to be shocked. It was a scary 15 to 30 minutes for us while her heart was irregular and they were running emergency EKGs, etc. to find out what the cause was. The end result was that they found that the picc line they put in yesterday to feed her into the veins was too close to the heart and interfering with the electrical signals of the heart. They moved it out by 3cm and seems to have solved the problem. We though we were going to go to a regular room today, but obviously that is not going to happen now.
Early this evening, the doctors came back to us and after they all reviewed all of her records and discussed they were in agreement that she needs to have a procedure done tomorrow to remove the clot. This is not full-blown surgery because they are not cutting her open, but it is not without risks. As we understand it they will be going into through the liver and the vein into the clot to break up and remove the clot. We do not yet know the time of the surgery as they are working her into the schedule. As soon as I know the time I will make that information available here.
Ben
Sunday, October 22, 2017
Even If...
Several people have asked me how I am doing? The honest answer to that can pretty much be anything. There are times where I am energized and motivated and there are times where I am exhausted. There are times where my faith is strong and times where I am frankly mad at God. There are times where I know God is present and with us and times where I wonder why he has left us. There are times where I am strong and times where I am an emotional wreck. God is growing me and slowly pruning out those bad branches, but sometimes I don't want to be pruned. I am by nature a "fixer" -- you bring me a problem and I go into the mode of fixing it, but God is showing me that I cannot fix everything and I frankly don't like not being able to fix it. It breaks my heart to watch the love of my life experience pain that I can do nothing about or to have emotions that I can't comfort. I am learning that I am not supposed to be her rock -- only Jesus can fill that role. I have been collecting my thoughts throughout this process and feel like now is the right time to share them.......
When we first got back to the US, Randy and Kim Hendrix were very gracious and loaned us a vehicle for as long as we needed it. It had a 6 CD changer in it and one of the CDs that Kim had in the mix was Mercy Me. For the first 6 weeks or so of Chemo as we arrived at Mayo the song "Even If" was playing. After we completed Chemo and I drove around to pick up Julie and get her in the car, their song, "We Win" was playing. These two songs have come to speak so much to us.
I want you to pause right now and click on the link below and listen to Even If and read their lyrics as you listen. then come back here and read the rest of this blog.
Mercy Me -- Even If
This song so describes where I am at with my faith as we go through this awful thing called cancer. You see, the things I KNOW about God don't match my feelings sometimes. Sometimes I think, "God we gave up everything to move to Honduras to serve you -- why did we have to leave that work to come back to fight such a cruel disease?" God has been amazingly faithful to be right here with us to comfort us and to provide for us. Each week, we were encouraged as Julie went through Chemo with very little side-effects compared to what it could have been. Then we get to the surgery, and praise God for the news that the surgeon was able to get all of the cancer visible to the naked eye, but it was overwhelming everything they had to do to accomplish that. Then she progressed after surgery so well that we were so ready to get back to chemo and finish this fight, BUT she got a Urinary Tract Infection and had a pretty bad reaction to the medicine. From that point to now, we have had some pretty bad ups and downs (more downs than ups) where we pretty much took one step forward and three steps backwards. She is doing better today than yesterday, but still has a long way to go to get rid of the blood clot and to get strong enough to start chemo. We think we may be in the hospital a couple of weeks at this point, but will likely get back to a regular room tomorrow. So as Mercy Me sings, it feels like "right now I'm losing bad". But I do know that God is able and I do know that he can remove all of this by just speaking. But, for now, it looks as if God has chosen to leave mountains unmoved, but He is continuing to give me the strength to say "it is well with my soul". You see, like Mercy Me sings, even if God don't move the mountains, My hope is still in Him alone. As Julie mentioned in her blog, one of the ways God is giving us this strength is through you. We know so many are praying for us. I want you all to know that though I am sure we don't see every single comment on Facebook (when our posts are shared we sometimes don't see the comments unless we are tagged in the post), we see most of them and they are very encouraging. There are so many that it is not possible for us to acknowledge them as I would be doing nothing but commenting or liking posts on Facebook, but we read them and it blesses our soul so please don't stop the encouragement just because we don't acknowledge each one individually. We both at times read comments and break down into tears at the amazing grace of God in how he speaks just the right thing into our hearts at just the right time through you.
The other song (We Win) that spoken to us, was more the chorus and the bridge that spoke to us as the song is really about something other than the type of thing we are going through. But God spoke to me through the chorus that He is not done with us and He is continuing to use us and will continue to do so. You see, God didn't ask us to give up all of our earthly possessions to go and serve Him and that is not what He asks of you either -- He asked us to give up EVERYTHING and to turn it all over to him. So like Paul, whether we live or die, we want to be used by God for his glory. It don't mean that we don't struggle with how He is choosing to use us, but our lives are his vessels to pour out in whatever way best accomplishes his will and glory. The following lyrics of this song is what has spoken to me so much.
There is a saying that is popular with people that have fought the fight against cancer or have loved ones who have and it is "cancer sucks". Yes, cancer sucks, but sin sucks even more. Sin is even more deplorable to God than cancer is to us. I think cancer gives me a glimpse of how much God hates sin -- he hates sin so much more than I hate cancer and I couldn't imagine how much that is right now. God can love infinitely, but He can also hate infinitely. As Pastor Mark said this morning, we will all live forever. I hope you choose to live in the presence of the love, honor, glory, mercy, grace, and eternal worship of God, who is worthy of our praise and not in the presence of his absolute wrath for eternity.
To His Glory,
Ben
When we first got back to the US, Randy and Kim Hendrix were very gracious and loaned us a vehicle for as long as we needed it. It had a 6 CD changer in it and one of the CDs that Kim had in the mix was Mercy Me. For the first 6 weeks or so of Chemo as we arrived at Mayo the song "Even If" was playing. After we completed Chemo and I drove around to pick up Julie and get her in the car, their song, "We Win" was playing. These two songs have come to speak so much to us.
I want you to pause right now and click on the link below and listen to Even If and read their lyrics as you listen. then come back here and read the rest of this blog.
Mercy Me -- Even If
This song so describes where I am at with my faith as we go through this awful thing called cancer. You see, the things I KNOW about God don't match my feelings sometimes. Sometimes I think, "God we gave up everything to move to Honduras to serve you -- why did we have to leave that work to come back to fight such a cruel disease?" God has been amazingly faithful to be right here with us to comfort us and to provide for us. Each week, we were encouraged as Julie went through Chemo with very little side-effects compared to what it could have been. Then we get to the surgery, and praise God for the news that the surgeon was able to get all of the cancer visible to the naked eye, but it was overwhelming everything they had to do to accomplish that. Then she progressed after surgery so well that we were so ready to get back to chemo and finish this fight, BUT she got a Urinary Tract Infection and had a pretty bad reaction to the medicine. From that point to now, we have had some pretty bad ups and downs (more downs than ups) where we pretty much took one step forward and three steps backwards. She is doing better today than yesterday, but still has a long way to go to get rid of the blood clot and to get strong enough to start chemo. We think we may be in the hospital a couple of weeks at this point, but will likely get back to a regular room tomorrow. So as Mercy Me sings, it feels like "right now I'm losing bad". But I do know that God is able and I do know that he can remove all of this by just speaking. But, for now, it looks as if God has chosen to leave mountains unmoved, but He is continuing to give me the strength to say "it is well with my soul". You see, like Mercy Me sings, even if God don't move the mountains, My hope is still in Him alone. As Julie mentioned in her blog, one of the ways God is giving us this strength is through you. We know so many are praying for us. I want you all to know that though I am sure we don't see every single comment on Facebook (when our posts are shared we sometimes don't see the comments unless we are tagged in the post), we see most of them and they are very encouraging. There are so many that it is not possible for us to acknowledge them as I would be doing nothing but commenting or liking posts on Facebook, but we read them and it blesses our soul so please don't stop the encouragement just because we don't acknowledge each one individually. We both at times read comments and break down into tears at the amazing grace of God in how he speaks just the right thing into our hearts at just the right time through you.
The other song (We Win) that spoken to us, was more the chorus and the bridge that spoke to us as the song is really about something other than the type of thing we are going through. But God spoke to me through the chorus that He is not done with us and He is continuing to use us and will continue to do so. You see, God didn't ask us to give up all of our earthly possessions to go and serve Him and that is not what He asks of you either -- He asked us to give up EVERYTHING and to turn it all over to him. So like Paul, whether we live or die, we want to be used by God for his glory. It don't mean that we don't struggle with how He is choosing to use us, but our lives are his vessels to pour out in whatever way best accomplishes his will and glory. The following lyrics of this song is what has spoken to me so much.
It's not overWe walk by faith not by sight. You see, if we walked by sight we would waver. My feelings and my sight are sometimes weak, but my faith is strong and unwavering. I have never doubted that God can remove this. I have never doubted that he loves us and will do what is best. The only "doubt" I have had is whether it is actually in his will to remove this or how or when. Only time will provide that answer, but in the mean time he continues to grow and shape us into what he wants us to be. He continues to grow compassion in us. If I am totally honest I have to admit that sometimes I don't feel like reading his word or talking with him, but he gives it to me anyway through a song or a comment, or a person sent to pray with us or a phone call. Oh, I don't know how anybody could experience this and not KNOW that God is real and that He loves us and is there with us every step of the way. He reveals his presence in so many ways.
Don't give up, don't throw in the towel
Just remember who you belong to
Let Me remind you how this ends
We win, woah, we win
We win, woah, we win
Hey, no stopping us
He's not done with us
We are more, more than conquerors
There is a saying that is popular with people that have fought the fight against cancer or have loved ones who have and it is "cancer sucks". Yes, cancer sucks, but sin sucks even more. Sin is even more deplorable to God than cancer is to us. I think cancer gives me a glimpse of how much God hates sin -- he hates sin so much more than I hate cancer and I couldn't imagine how much that is right now. God can love infinitely, but He can also hate infinitely. As Pastor Mark said this morning, we will all live forever. I hope you choose to live in the presence of the love, honor, glory, mercy, grace, and eternal worship of God, who is worthy of our praise and not in the presence of his absolute wrath for eternity.
To His Glory,
Ben
Friday, October 20, 2017
Lost in the Middle
Help.
I'm Lost.
Can you help me find my way?
I'm searching for this person.
But,
I have discovered something.
She's gone.
And I am
Lost
while looking for
Her.
-Julie Agee
Have you ever gone through something so much bigger than yourself that you aren't sure what it is you are doing?
Well--that's exactly where I am. I am wondering, searching, crying out. I'm completely lost. Lost to the person who was, and certainly lost to the woman who will one day emerge from this battle. (I'm kind of anxious to meet that woman--I think she will be a powerful force.)
I'm in the difficult part of the battle. One step forward, two back.
There are moments in the "middle" of this battle that I'm over-whelmed, moments of pure joy, moments of contentment, moments of chaos, moments of discerning, moments of weakness, and moments of unbelief. It's just where I am.
It's not necessarily a horrible place to be--ask any butterfly if they ever skipped the chrysalis stage before becoming the new creature.
But it's in the middle of the battle when the warrior gets weary. The enemy is roaming around looking for your weak spots. Looking for places to gain a stronghold. And you are hanging on. Sometimes even going through the motions. (One day this week--it was a few minutes by minutes.)
Even in all my lostness--Jesus has been right beside me. He has not let me drown in my sorrows, nor has let me stay searching incessantly. (The new me is still in development--not ready to emerge from the battle. Let me clarify--if God were to instantaneously heal me and allow me to step into my new role--I would, but I have the feeling I'm on the path of the butterfly--I'm struggling in the chrysalis for the moment.)
Let me tell you how Jesus has shown himself to be right here with me.
1) The scripture: God constantly puts His word in front of me. Sometimes it comes from my quiet time with Him, sometimes it comes in a card, text, or message from you guys, sometimes it comes from songs, and sometimes it comes through a prayer being prayed. However he chooses, he makes sure I keep His word in front of me.
2) His encouragers: All of you out there. I can't tell you how uplifting the calls, visits, e-mails, texts, and cards/packages in the mail all encourage me to keep fighting another day. I love yall so much!
3) Your Prayers: Daily I get a message from different people telling me that this group is praying, or their family is praying, or their church is praying. All of these prayers going before the throne, that will make a girl's heart just shine.
4) People: Do you know how many "strangers" have stopped me in grocery stores, craft stores, Mayo Hospital, etc. I have been prayed over in the aisle of Hobby Lobby, Walmart, and in a Hospital room in Mayo. Different people who crossed my path and were obedient to stop and pray right there in that exact moment. Bless obedient servants of the Lord who are His messengers of hope and faith.
Without these gifts from God, this lost woman wouldn't know how to keep in the battle, but He keeps sending you to me. Oh how that just ministers to me. Because there are times in my "chrysalis" when I begin to feel sorry for myself, or I take my eyes off of God and I focus on the problem staring me in my face.
My recent surgery has been such a struggle. Waking up to hear all that was done to my body was shocking. I was prepared for most of the changes, but removing my spleen was a total shock, and so was all of the blood that has had to be given. Also, I am now having to learn to live with other changes that I was hoping to avoid. My body is a testimony to God's Power. I HAD A HUGE, VERY BIG, SURGERY. God is healing me and I am on the mend. I've had some set backs (UTI, and major sickness due to a medicine), but I'm believing I am continuing to heal.
Right now I'm ok with being Lost and yet still looking.
It let's me know that I'm still in the fight and it gives me hope that God is still working in all of the details to bring about this new woman. Can we ever go through these events and stay they same? Of course not! I will never be the Julie before cancer again. All I can do is pray that I am open to the changes that God is up to in me though this experience. A couple of years ago I studied the book of James with some other women. Some of my favorite verses are from James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish it's work so that you may be mature and complete, not lacking anything."
You see I've lost myself, and I'm on the journey to find this woman who God is creating. And you are on this journey also--thank you for holding firm with me on the bumpy roads!
Julie
------------
The above was written by Julie a little over a week ago. She has gone through even more battles since then, but her message is still spot-on so I decided to go ahead and publish it on her behalf.
I'm Lost.
Can you help me find my way?
I'm searching for this person.
But,
I have discovered something.
She's gone.
And I am
Lost
while looking for
Her.
-Julie Agee
Have you ever gone through something so much bigger than yourself that you aren't sure what it is you are doing?
Well--that's exactly where I am. I am wondering, searching, crying out. I'm completely lost. Lost to the person who was, and certainly lost to the woman who will one day emerge from this battle. (I'm kind of anxious to meet that woman--I think she will be a powerful force.)
I'm in the difficult part of the battle. One step forward, two back.
There are moments in the "middle" of this battle that I'm over-whelmed, moments of pure joy, moments of contentment, moments of chaos, moments of discerning, moments of weakness, and moments of unbelief. It's just where I am.
It's not necessarily a horrible place to be--ask any butterfly if they ever skipped the chrysalis stage before becoming the new creature.
But it's in the middle of the battle when the warrior gets weary. The enemy is roaming around looking for your weak spots. Looking for places to gain a stronghold. And you are hanging on. Sometimes even going through the motions. (One day this week--it was a few minutes by minutes.)
Even in all my lostness--Jesus has been right beside me. He has not let me drown in my sorrows, nor has let me stay searching incessantly. (The new me is still in development--not ready to emerge from the battle. Let me clarify--if God were to instantaneously heal me and allow me to step into my new role--I would, but I have the feeling I'm on the path of the butterfly--I'm struggling in the chrysalis for the moment.)
Let me tell you how Jesus has shown himself to be right here with me.
1) The scripture: God constantly puts His word in front of me. Sometimes it comes from my quiet time with Him, sometimes it comes in a card, text, or message from you guys, sometimes it comes from songs, and sometimes it comes through a prayer being prayed. However he chooses, he makes sure I keep His word in front of me.
2) His encouragers: All of you out there. I can't tell you how uplifting the calls, visits, e-mails, texts, and cards/packages in the mail all encourage me to keep fighting another day. I love yall so much!
3) Your Prayers: Daily I get a message from different people telling me that this group is praying, or their family is praying, or their church is praying. All of these prayers going before the throne, that will make a girl's heart just shine.
4) People: Do you know how many "strangers" have stopped me in grocery stores, craft stores, Mayo Hospital, etc. I have been prayed over in the aisle of Hobby Lobby, Walmart, and in a Hospital room in Mayo. Different people who crossed my path and were obedient to stop and pray right there in that exact moment. Bless obedient servants of the Lord who are His messengers of hope and faith.
Without these gifts from God, this lost woman wouldn't know how to keep in the battle, but He keeps sending you to me. Oh how that just ministers to me. Because there are times in my "chrysalis" when I begin to feel sorry for myself, or I take my eyes off of God and I focus on the problem staring me in my face.
My recent surgery has been such a struggle. Waking up to hear all that was done to my body was shocking. I was prepared for most of the changes, but removing my spleen was a total shock, and so was all of the blood that has had to be given. Also, I am now having to learn to live with other changes that I was hoping to avoid. My body is a testimony to God's Power. I HAD A HUGE, VERY BIG, SURGERY. God is healing me and I am on the mend. I've had some set backs (UTI, and major sickness due to a medicine), but I'm believing I am continuing to heal.
Right now I'm ok with being Lost and yet still looking.
It let's me know that I'm still in the fight and it gives me hope that God is still working in all of the details to bring about this new woman. Can we ever go through these events and stay they same? Of course not! I will never be the Julie before cancer again. All I can do is pray that I am open to the changes that God is up to in me though this experience. A couple of years ago I studied the book of James with some other women. Some of my favorite verses are from James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish it's work so that you may be mature and complete, not lacking anything."
You see I've lost myself, and I'm on the journey to find this woman who God is creating. And you are on this journey also--thank you for holding firm with me on the bumpy roads!
Julie
------------
The above was written by Julie a little over a week ago. She has gone through even more battles since then, but her message is still spot-on so I decided to go ahead and publish it on her behalf.
10/20/2017 Update
After asking a number of questions throughout the day today, we ended up with the Gynecologist asking for a referral from a vascular surgeon who specializes in blood clots. After he examined Julie and we talked about a few things, he went back and consulted with another vascular surgeon and made a recommendation to move Julie to the ICU as a precautionary measure. We are now in ICU for 2 to 3 days. She was actually making some progress and had just managed to eat a small cup of chicken broth without pain or throwing up so we thought things were finally looking positive again. However, the location of the blood clot poses the risk of causing cells in the intestine to die off, which would become a medical emergency requiring emergency surgery if it were to happen and not get caught quickly. The doctor does not believe this is happening and did not recommend moving her to ICU because there is a problem getting worse, but rather as a precaution so they can keep a close watch on her. They are changing the blood thinner to something that is much more aggressive that requires close supervision to administer. They are also wanting her bowels to rest for a couple of days, so she will be fed through a tube of some sort starting tomorrow (bypassing her bowels) and will have the contents of her stomach pumped out. This will allow the clot to have a chance to break up some without adding the pain and pressure of the bowels needing to process food. It will also allow her to once again begin to get the nutrients she needs as she has not been able to eat in several days. Resting the bowels also removes several other risks of bad things that could potentially happen without taking this precaution. Thankfully all of the tests indicate that none of these bad complications have occurred nor even begun to occur and she is now being treated in a way that will prevent them from occurring.
Ben
Thursday, October 19, 2017
10/19/2017 Update
Just a quick update to catch all of our prayer partners up to date on what is going on......
Julie's pain continued to get worse and after several calls and visits with doctors, yesterday afternoon the decision was made to admit her back into the hospital to address the pain and dehydration and to do testing today. She had a CT scan this morning to find out what may be causing the pain in her abdomen that was so much more intense when she tried to eat. The results of the scan showed a blood clot on her bowel. They have significantly increased the dose of blood thinner that she was on and said that should resolve the issue, but we are not yet sure how long that may take. We will likely be in the hospital at least until Monday as we want them to do some follow-up scans before discharge to check the progress.
Please pray specifically for two things: (1) that the clot is dissolved quickly and she be able to eat and drink again and (2) that the clot not have been there long enough to completely cut off blood flow to the bowel which would cause death of tissue and cause a possible operation to address.
Thank you all for your prayers. I know God is working through you because as some of you have told us when you have had prayer meetings, etc. it coincides with when something major was going on at the time that needed God's hand of protection and voice of wisdom.
Ben
Julie's pain continued to get worse and after several calls and visits with doctors, yesterday afternoon the decision was made to admit her back into the hospital to address the pain and dehydration and to do testing today. She had a CT scan this morning to find out what may be causing the pain in her abdomen that was so much more intense when she tried to eat. The results of the scan showed a blood clot on her bowel. They have significantly increased the dose of blood thinner that she was on and said that should resolve the issue, but we are not yet sure how long that may take. We will likely be in the hospital at least until Monday as we want them to do some follow-up scans before discharge to check the progress.
Please pray specifically for two things: (1) that the clot is dissolved quickly and she be able to eat and drink again and (2) that the clot not have been there long enough to completely cut off blood flow to the bowel which would cause death of tissue and cause a possible operation to address.
Thank you all for your prayers. I know God is working through you because as some of you have told us when you have had prayer meetings, etc. it coincides with when something major was going on at the time that needed God's hand of protection and voice of wisdom.
Ben
Monday, October 16, 2017
Update 10/16/2017 -- A Little Longer Before Chemo
It has been a long 17 days since surgery. We praise God that the surgeon was able to get everything and we praise God for the rapid healing that Julie experienced through the point of being discharged 10 days ago. However, we have had some setbacks since getting home. She developed a UTI and was proactively put on a very strong broad antibiotic, which caused major stomach issues, which is not good with some of the work she had done to her. To make matters worse, the UTI she had turned out to be resistant to that particular antibiotic. All of this led to her losing too much liquid and we ended up going to the ER a few days ago to get her checked out and re-hydrated. She is now on a new antibiotic that seems to be working on the UTI and is much milder. She is still having side-effects, but not as pronounced and bearable. She began to progress in her healing again until Friday.
On Friday, we spent 9 hours at the hospital for post-surgery visits. She had her follow-up with the surgeon's team, which removed the staples. She then had to receive 2 units of blood because her hemoglobin was remaining low (it was low all along, so this was not a surprise). She then had to get 4 immunizations because she no longer has a spleen. We are not sure which of these (or most likely a combination of these), but it set her back again to more new pain in new areas. The past 2 days have been pretty bad in the pain category for her.....
Today, we had a "normal" chemo day scheduled with the Oncologist hoping to be able to start chemo. They did blood work and then had the appointment with Dr. Colon (the Oncologist). Her blood counts are all looking good and based on that alone she could have had chemo today. However, Dr. Colon feels like (and we agree!) that she needs another week to continue to heal from surgery before starting chemo because healing will come much slower once chemo is started. Based on all of this, unless there are any major setbacks, we will resume the last 9 weeks of chemo next Monday and repeat every Monday until done. We did get a little concerned when we saw the blood-work because the CA-125 number was up, but Dr. Colon assures us that it is normal for it to do that when you have surgery. He said people that don't have any cancer will have a higher CA-125 after a surgery and it wasn't anything to be concerned about. He feels real good about where we are in the treatment process.
Some specific prayer points:
- For relief of some back pain Julie is having -- most likely where the epidural was given and because she is having to lay on her back so much.
- For relief of the new pains in her abdomen that we think is caused by new stretching since the staples were removed.
- For her appetite to be increased and for her to be able to retain liquids.
- For the overall healing of her body in preparation for the next half of chemo.
- For the chemo to finish doing what it needs to do.
- For Julie's emotional outlook. She has had some pretty emotional times over everything that was done during surgery and some of the adjustments that are mostly temporary. Of course, a lot of this is due to hormonal changes with the hormone producing parts being removed, but there are some other things that she is struggling with as well.
- For protection against infections -- her immune system will always be less now without a spleen and once she starts chemo, it will make it weaker again.
- For Sara's school -- her Hope Grant/Scholarship is at risk since we (not her) moved out of state. Thankfully, we have a great State Representative in GA that is working on her behalf to get an exception due to the circumstances.
- For ministry decisions that have to be made -- it is complex and involves a number of people and situations -- for now just pray as several people have decisions to make and we all want a clear direction from God to stay in His will. The ministry in Honduras will continue -- we are just trying to figure out exactly what that looks like going forward and it is impacted not just by our circumstances, but also changing circumstances in Honduras.
- For some unspoken requests for others close to us that I cannot disclose -- God will know who you are praying for :)
With Love,
Ben
Thursday, October 5, 2017
We are Home
Julie continued to stay ahead of schedule on her recovery of the surgery so she was discharged this afternoon and we are home at her cousin's in Jacksonville. She is scheduled to return next Friday (13th) to have the staples removed as well as to receive some immunizations required now that she doesn't have a spleen. Dr. Robertson believes that as healthy as Julie is other than the cancer that she may be ready to begin the last 9 weeks of chemo on Friday, October 20th. Dr Robertson attributed Julie's rapid recovery of such an extensive surgery as her young age, good health, and "the good Lord looking out for you." We think it was more of the last than anything and God honoring the many prayers of his children all over that have been and continue to pray for us.
On a different note, I have a minor outpatient eye surgery as a glaucoma preventative on Friday, October 13th. We have someone that is going to come stay with Julie while I am gone and get her to her follow up appointment to have the staples removed and the immunizations. The eye surgeon tells me that since I am only having one eye done that I can drive myself and it won't be a problem, but Julie wants me to have someone go with me, so if any of you men have the day off on Friday, October 13th and feel like riding to Glennville and back with me that day please let me know. I do not yet know the time -- just the day.
On a different note, I have a minor outpatient eye surgery as a glaucoma preventative on Friday, October 13th. We have someone that is going to come stay with Julie while I am gone and get her to her follow up appointment to have the staples removed and the immunizations. The eye surgeon tells me that since I am only having one eye done that I can drive myself and it won't be a problem, but Julie wants me to have someone go with me, so if any of you men have the day off on Friday, October 13th and feel like riding to Glennville and back with me that day please let me know. I do not yet know the time -- just the day.
Monday, October 2, 2017
Update on Surgery
Throughout the day of surgery and the first couple of days afterwards I was posting updates on Facebook, but I realized today that the Facebook prioritization system caused many of you to miss some of the updates. Therefore, so everybody is up to date I will provide a total summary here from the day of surgery through today.
When the hospital called on Thursday (9/28) to give us the surgery time, they told us to check in at the hospital at 10:00am and that we would be Dr. Robertson's 3rd and last surgery of the day (the other 2 were predictable out-patient surgeries). We arrived on time on Friday and she was taken back and changed clothes and got all hooked up with IVs, etc. Dr. Robertson came by around 11:30am and went over the surgery again and explained that he wanted Julie to be his last surgery so he could take whatever time he needed to make sure he got all of the cancer -- he was preparing us for a long surgery, but we didn't realize how long (neither did he). Around noon, they took Julie back to the OR to begin to clean her and prepare her for surgery and to begin anesthesia. At 1:55pm, we receive a call in the waiting room from the OR that actual surgery had just begun. We didn't receive any more information until around 9:00pm when the receptionist was leaving for the day and called the OR and they confirmed that she was still in surgery and that Dr. Robertson would come talk to us as soon as he was finished. Around 9:30pm, Dr. Robertson came out and briefed us on the surgery and said that his team was completing the installation of the J trap drains, and sewing her up and would be moving her to ICU and that we should go to the ICU waiting room and wait for them to let us know when she was in ICU and what the procedure would be for when we could see her, etc. Based on what Dr. Robertson had said he had done in the surgery and the time of the day it was, we assumed we would not get to see her, but would just get information. At around 11:30pm, the ICU nurse came out and said she was awake and asking for us. It turns out she had arrived in the ICU not long after Dr. Robertson had talked with us, but they had spent 2 hours trying to stabilize her vital signs. Mayo allowed Betty (a close friend and nurse) to spend the night with her in the ICU, which is absolutely unheard of in most hospitals.
Dr. Robertson had previously had Julie sign the consent of treatment, which had a fairly long list of possible things he could have to do in surgery (even though he didn't expect to do them all), and then a catch-all of "and anything else I have to do to get all of the cancer and to keep you alive." Without going into all of the details of what was done during the surgery, I will just say that I think there was only one thing on his fairly-exhaustive list that he didn't have to do and he did have to do one that was in the "whatever is necessary......." catch-all clause. During the 7 1/2 hour surgery, Julie lost 3 liters of blood and was given 8 units plus platelets, and blood volume builder (I don't know the technical name of it). The most important thing about the surgery though is that Dr. Robertson was able to achieve the R0 resection, which is a technical way of saying that he was able to find and remove all of the cancer that was large enough to be seen with the naked eye. There are no more tumors or cancer deposits, but there are still cancer cells, which is why she has to have 9 more weeks of chemo before they scan to see if she is in remission.
Julie stayed in ICU about 21 hours. About 16 hours after arriving in the ICU, they had her standing up and moving her to a recliner chair, but it was a very difficult move and it was all Julie could do to stand for the few minutes it took them to move the bed and put the chair behind her. After getting in a regular room late Saturday afternoon, they worked further to get her up and walking. On Sunday, she walked down the hall three times and on Monday she walked the full "block" around our part of the floor of the hospital and then walked 2 more times with a regular walker instead of the platform walker. As of tonight (10/2/2017), she has had most of the tubes, etc. removed. This afternoon was the first she was able to eat or drink anything other than a very limited number of ice chips. All of her digestive system finally started working again today, which made today the most difficult day because suddenly gases and digestive juices are flowing through a very raw digestive system that has been cut on, pulled on, poked on sewed on, etc. The doctors are very happy with her progress, but she has a long way to go.
I think my Facebook posts have confused a few people a little as I have chosen to emphasize the positive more than the negative. The positive is that it was a successful surgery in that they were able to remove the cancer. It is also positive that each time I have reported something it was a normal step in recovery that occurred either on a normal schedule or ahead of schedule. This means when I say she is doing "great" it means she is on a normal recovery schedule or better. However, my positive comments do not mean she is without pain or that there is anything about this that was easy or will be easy. Recovery was originally anticipated to be 4 to 6 weeks, but now just one part of it is typically 8 to 10 weeks without the delay in healing caused by chemo, which has to be restarted at some point. My positive comments does not mean she isn't on an emotional roller-coaster of having to learn to deal with the realities of some of the things she will now have to deal with as a result of some of the things that had to be done in surgery and of having to take longer to recover. When I am positive in my comments, I am giving God the praise He is due for the work He has done and continues to do to her body and I am not dwelling on the things that we will have to deal with or the difficulties and adjustments she and I both have to make.
We don't know yet how long we will be in the hospital. Dr. Robertson had told us Friday night after the surgery to expect at least 10 days. After we leave the hospital we should have a home health nurse come to the house every 3 to 5 days for some length of time. As of right now, I really cannot leave the room for more than a couple of minutes unless somebody else is here with her. This means that I am coordinating with close friends and family that are wanting to visit to have them come on different days so they won't overwhelm her with too much at once and also so that they can stay with her long enough for me to go get a shower and grab a bite to eat each afternoon or evening. We also do not yet know when chemo will begin again -- it was originally scheduled for 10/16, but that was "iffy" anyway as it was originally based on a 9/25 surgery date and Dr. Colon had already said it was possible we would have to push it back a week. However, pushing it back one week was not assuming such a difficult surgery to heal from so we will have to wait and see.
We thank you for your prayers and messages of encouragement. Julie is not quite in the frame of mind to be on Facebook yet, so please give her grace if you are messaging her there.
Ben
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