Oh, how I wish I had gone to MD Anderson last week and came home with a plan packed full of hope for a cure. A plan with an end in sight. Unfortunately, I did not.
Based on a 50 gene test, we learned that my cancer growth is being driven by a gene called KRAS. Our clinical trial doctor didn't spare any time when he told us there is no current treatment or trial that has identified a targeted treatment that hits this gene. Ugh........ It's surreal to sit there and know that what you prayed for is not what you are getting......again. Instead your unanswered prayer gives you only one direction to go. The current standard treatment. Is this a blessing I didn't know I needed, I wonder?
One year ago when they found I had spots in my lungs and began to watch so closely a new chemo cocktail was being put into mainstream treatment around the world. This cocktail is now my best chance to shrink or slow the growth of this KRAS driven adenocarcinoma. I wonder if anyone with my rare gyn cancer (primary vaginal adenocarcinoma) has ever been given this cocktail? Perhaps it is a cure for me, though not for cervical cancer. Will God give me a miracle and allow me to beat the odds and live far outside of the "norm", according to science? Might I have life much longer than ever dreamt of because I realize God is bigger than my cancer? Might God choose to give little me, with no giant impact around the world, a miracle that shines His light in my small circle? Will the master potter create me to a be a beautiful unique masterpiece that lives this life with a small crack in my side? Much like Paul's thorn, my "small crack" will always remind me who is in control of my destiny. The one who pulls me up out of bed in the morning with joy in my heart and strength to put my feet on the floor once more. The risen Savior. Abba. Yahweh. Jehovah!
My Savior is the lamp unto my feet shining light only on THIS day. I find it no mistake that as I remember being in the hospital at MD Anderson on Good Friday 2 years ago, fighting for my life, against multiple infectious bacterias in my body, I now set out on yet another life threatening journey. I could face tomorrow during that time because I knew my Savior lived! He lives still. He is faithful still. He had bigger plans for the world on Good Friday all those years ago when Jesus died on the cross. He has bigger plans for us on this day as well. His ways are beyond our understanding. They are more dramatic than any theatrical climax. It is too much for my human mind to take in. I long for understanding, but for now, I choose to trust. I choose to find hope against the odds. I'd rather be a scared and tired soldier in God's mysterious army than a strong and powerful commander purposed to chase the wind.
God, help us to fight with purpose on this day. We are sinful, scared and tired people who cannot come close to deserving your unending love. May we choose to be faithful today with the moment in time you've given us. May we remember that you alone are in control of this universe. You created the world and everything in it. This sinful world has caused so much pain and ugliness around us. May you lift our eyes away from the pits, and toward you so that we can find our way through this battleground. Thank you for the gift of eternal life through your son Jesus Christ. Thank you for the gift of the Holy Spirit to help us until the day we get to meet you face to face. My you alone receive all the glory in our lives. Help us to choose to trust and hope in you alone. Amen.
Philippians 3:10 " I want to know Christ and experience the mighty power that raised him from the dead."
Monday, April 6, 2015
Tuesday, March 17, 2015
Next Step
My sister, Amy, and I will head back to Houston on Wednesday April 1st to meet with two people. One is for Integrative Nutrition/Medicine and the other is to learn about any clinical trials that I may qualify for. Thankfully, the Houston rodeo month is over and we are able to get MUCH better rates so that we can fly via Southwest again this time.
Please be praying that God goes before us and makes it clear the path of treatment that we should follow. Thank you for your prayers and encouragement once again.
Please be praying that God goes before us and makes it clear the path of treatment that we should follow. Thank you for your prayers and encouragement once again.
Wednesday, March 11, 2015
Be Still and Know I Am God
"Be still, and know that I am God; I will be exalted among the nations,
I will be exalted in the earth." Psalms 46:10
If you've seen my story in the KLRC mailings lately you know we listen to Christian music in our home and cars all the time. Hence, I'm sure I've heard this song, but it never stuck with me....until today. I was scrolling through Facebook this morning and came upon a post (by KLRC actually) and it led me to watch this Casting Crowns music video for the first time. I watched it several times because the lyrics stood out as if they were speaking my heart right this minute.
It's a very surreal feeling to realize and believe with my whole heart that I serve a God who is able to do anything I ask of him, but instead He's chosen to leave me in this trial. A trial that I do not believe God put me in, but he allowed it to come upon me because I live in a fallen world. I find myself needing to do the mundane tasks of keeping my home clean and folding laundry, sorting mail and so on....but I'm not able to focus on them. My time goes by and I wonder what I did. I'm realizing that these times are spent sitting quietly with Jesus as I soak in the realness of this situation. Accepting that I have been chosen by God to authentically live out this teeny tiny role as part of a humongous story. A story that will one day end only with joy, peace, and pain free glory to the sovereign One. Although this is a painful realization, I become more willing as I sit. "Be still and know that I am God" is taking on an entirely new meaning.
I will be exalted in the earth." Psalms 46:10
If you've seen my story in the KLRC mailings lately you know we listen to Christian music in our home and cars all the time. Hence, I'm sure I've heard this song, but it never stuck with me....until today. I was scrolling through Facebook this morning and came upon a post (by KLRC actually) and it led me to watch this Casting Crowns music video for the first time. I watched it several times because the lyrics stood out as if they were speaking my heart right this minute.
It's a very surreal feeling to realize and believe with my whole heart that I serve a God who is able to do anything I ask of him, but instead He's chosen to leave me in this trial. A trial that I do not believe God put me in, but he allowed it to come upon me because I live in a fallen world. I find myself needing to do the mundane tasks of keeping my home clean and folding laundry, sorting mail and so on....but I'm not able to focus on them. My time goes by and I wonder what I did. I'm realizing that these times are spent sitting quietly with Jesus as I soak in the realness of this situation. Accepting that I have been chosen by God to authentically live out this teeny tiny role as part of a humongous story. A story that will one day end only with joy, peace, and pain free glory to the sovereign One. Although this is a painful realization, I become more willing as I sit. "Be still and know that I am God" is taking on an entirely new meaning.
If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will
And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will
And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands
Monday, March 9, 2015
The Results - March 2015
If you follow me on Team Kristi Prayer Warriors via Facebook, you have some of this news....
Billy, my brother Joshua, and I left a week ago Sunday to drive to Houston. We had planned to go to church and leave early afternoon, but because of the recent snowstorm we took off early in case of bad roads. God went before us and melted the ice and snow off all the way through the Dallas area.
Monday, I had a CT with Barium (on my least favorite things list) and Contrast to look closely at my hip pain site and throughout the pelvic/abdomen. The amazing news is that they found NOTHING in this area. My Total Pelvic Exenteration, with its 50/50 chance of a cure got rid of all the cancer in this area. This is a huge praise and gift from God because if the cancer returns in this "radiated field" (as the dr's refer to it) my outcome would be dire.
Tuesday, I had a CT assisted biopsy of my right lung where the largest "spot" is seen on the prior CT scans. They had me lay on my tummy, which required creativity in itself, as I haven't been able to do that well in over 2 years now. The went in below my right shoulder and got a good sampling without any complications at all. We learned that 30% of patients have a lung collapse during these biopsies and I did not. Thank you Jesus for that too!
We enjoyed an afternoon and evening out on the big city of Houston while we waited for results. The laughs and distraction was just the right thing for us on this trip.
Wednesday morning I woke up pretty nervous. I had this feeling that God wasn't through with this story yet. This wasn't the miracle story that would have the impact He wanted. I thought about two conversations with strangers from the day before. One was a man who had glioblastoma (brain tumor) 5 years ago. They had given him a very slim chance to live 18 - 24 months and here he was to tell us about it 5 years later. We also met another sweet woman who passed on a book called "Praising" to me and told us her daughter had breast cancer at age 25 with a double mastectomy. Her doctors didn't expect her to live at that time and here she is almost 40 years old....15 years later, beating the odds.
We always talk to people about their stories, but they are usually in the thick of the battle. This is the first time I've sat and had people share their stories about beating the odds and I began to feel that this was God encouraging us for what was to come. It made me very nervous.
We sat across from Dr L and learned that the biopsy showed metastasized cancer in my lungs. This means it is the same type of cancer from before, not a new kind, but it has moved in the body. I have multiple spots in both lungs and so surgery is not an option. This news is such a hard blow to accept because we know we serve a God who is big enough to intervene, to give miracles, to answer our cries for help. Yet, he didn't.....again. But when I look at the full picture, I know without a doubt that God is the author of this story and He has me close at heart while He writes. My emotions don't "feel" this way, but my heart knows. If these spots had been found before my Total Pelvic Exenteration they would have refused to do the surgery that has given me these two years of life. And now, 2 years later, there are some new clinical trials that I may be a candidate for.....and who knows. I may be the evidence that it can be a cure! This is such a stretch and nothing our "scientific" doctor would even let us believe right now, but we're fighting to stay positive and full of Hope. We are fighting with constant remembrance of Gods faithfulness over and over in this journey. We know this story is not over because when I am weak He is strong. Jesus is the ultimate Healer! He is the healer of our bodies, our hearts and our souls. As hard as it is to face cancer a 4th time we know without a doubt that God has us in this place for a purpose. A purpose much bigger than we can comprehend.
Now, we wait for an appointment to learn about treatment options in detail so that we can choose. Six months ago there wasn't a choice...it would have been standard chemo. Today we hope and pray for a clinical trial option so that we can have a choice in treatment. Praise God for this timing.
Thank you for holding us up with your prayers, cards and messages of encouragement. We all need it so much and appreciate you.
Today's verse of encouragement to stay bold in the Hope of God.
"Therefore do not throw away your confidence, which has great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised." Hebrews 10:35-36
Billy, my brother Joshua, and I left a week ago Sunday to drive to Houston. We had planned to go to church and leave early afternoon, but because of the recent snowstorm we took off early in case of bad roads. God went before us and melted the ice and snow off all the way through the Dallas area.
Monday, I had a CT with Barium (on my least favorite things list) and Contrast to look closely at my hip pain site and throughout the pelvic/abdomen. The amazing news is that they found NOTHING in this area. My Total Pelvic Exenteration, with its 50/50 chance of a cure got rid of all the cancer in this area. This is a huge praise and gift from God because if the cancer returns in this "radiated field" (as the dr's refer to it) my outcome would be dire.
Tuesday, I had a CT assisted biopsy of my right lung where the largest "spot" is seen on the prior CT scans. They had me lay on my tummy, which required creativity in itself, as I haven't been able to do that well in over 2 years now. The went in below my right shoulder and got a good sampling without any complications at all. We learned that 30% of patients have a lung collapse during these biopsies and I did not. Thank you Jesus for that too!
We enjoyed an afternoon and evening out on the big city of Houston while we waited for results. The laughs and distraction was just the right thing for us on this trip.
Wednesday morning I woke up pretty nervous. I had this feeling that God wasn't through with this story yet. This wasn't the miracle story that would have the impact He wanted. I thought about two conversations with strangers from the day before. One was a man who had glioblastoma (brain tumor) 5 years ago. They had given him a very slim chance to live 18 - 24 months and here he was to tell us about it 5 years later. We also met another sweet woman who passed on a book called "Praising" to me and told us her daughter had breast cancer at age 25 with a double mastectomy. Her doctors didn't expect her to live at that time and here she is almost 40 years old....15 years later, beating the odds.
We always talk to people about their stories, but they are usually in the thick of the battle. This is the first time I've sat and had people share their stories about beating the odds and I began to feel that this was God encouraging us for what was to come. It made me very nervous.
We sat across from Dr L and learned that the biopsy showed metastasized cancer in my lungs. This means it is the same type of cancer from before, not a new kind, but it has moved in the body. I have multiple spots in both lungs and so surgery is not an option. This news is such a hard blow to accept because we know we serve a God who is big enough to intervene, to give miracles, to answer our cries for help. Yet, he didn't.....again. But when I look at the full picture, I know without a doubt that God is the author of this story and He has me close at heart while He writes. My emotions don't "feel" this way, but my heart knows. If these spots had been found before my Total Pelvic Exenteration they would have refused to do the surgery that has given me these two years of life. And now, 2 years later, there are some new clinical trials that I may be a candidate for.....and who knows. I may be the evidence that it can be a cure! This is such a stretch and nothing our "scientific" doctor would even let us believe right now, but we're fighting to stay positive and full of Hope. We are fighting with constant remembrance of Gods faithfulness over and over in this journey. We know this story is not over because when I am weak He is strong. Jesus is the ultimate Healer! He is the healer of our bodies, our hearts and our souls. As hard as it is to face cancer a 4th time we know without a doubt that God has us in this place for a purpose. A purpose much bigger than we can comprehend.
Now, we wait for an appointment to learn about treatment options in detail so that we can choose. Six months ago there wasn't a choice...it would have been standard chemo. Today we hope and pray for a clinical trial option so that we can have a choice in treatment. Praise God for this timing.
Thank you for holding us up with your prayers, cards and messages of encouragement. We all need it so much and appreciate you.
Today's verse of encouragement to stay bold in the Hope of God.
"Therefore do not throw away your confidence, which has great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised." Hebrews 10:35-36
Thursday, February 19, 2015
Suspicious Lung Spots - Here We Go Again.
My heart hurts as I write this post. Not because of what I have to do next, but because of what it means for all those around me. This journey is long and hard for the cancer patient, but it is so long and hard for the caregivers and the prayer warriors as well. Bad news not only deflates my joyful spirit, but it has a domino effect in all directions. I'm keenly aware of this as I continue on with my quest to be honest and transparent in hopes to keep others up to date. To inform those who stumble upon my story in search for their own answers. Yet, most importantly to glorify God in the midst of the trial He's entrusted to me.
This week Billy & I left our kids behind, now 12 & 9 yrs. old, to return for a quarterly follow up in Houston at MD Anderson. I had blood work and scans of my chest. The blood work showed some low function in my kidneys and indicated the spots in my lung have once again grown larger. The largest spot is still small at about 12 mm and growing slow, but steady. My doctor is suspicious enough that this is metastasized cancer that he has ordered a biopsy on March 3rd. He is basing his current concern solely on the scientific trend he has seen in cervical cancer cases, not hard evidence of my own case .... yet.
In addition, I am having some pain in my hip that he is going to have a CT of when we return as well. Cervical cancer (which they lump me into) has a tendency to move into the hip area as well.
My doctor began telling us that he would do some research for treatment if it comes back cancer. He shared how this has been unsuccessful in the majority of cases when treated with chemotherapy, but that is the primary plan. He will research clinical trials to see if anyone is seeing new success with other procedures as well. He explained that each person responds differently and that my age and health are on my side.
During this conversation Dr. L held my hand, but the pit in my stomach began to form and Billy was looking a bit pale as well. The word clinical trial brings hope, but fear as well. Are we really to this point, I wondered? That there is not another known cure? He said that our goal would be to shrink the cancer, but that there is not success in ridding me of it completely.
Long. Hard. Road. These words have stuck with us since we first heard in November 2010 that I had a rare vaginal adenocarcinoma at a young age of 34. Here we are facing the "fear" of a 4th round with this disease. But, I enjoyed an acronym shared with me this morning that fits the situation perfectly.
FEAR = False Evidence Appearing Real
According to Science & Fear they believe I have cancer, but according to Fact and Faith......we have yet to see what God will bring about!
Join us and......
...Boldly ask God to intervene on my behalf and allow me to be cancer free after these next tests. (Hebrews 4:16; Isaiah 63:7-9)
...Ask God to give Billy & I the words to update our children tonight, but not scare them in the process. We want them to know truth so they can feel and see God at work no matter what the outcome. (Matthew 19:14)
...Keep asking God to show me favor in this situation. Providing peace and strength while we wait, and joy and laughter when we hear the good news! (Matthew 7:7 NLT; Daniel 10:19; Proverbs 15:30)
Thank you for your continued love and concern this week. Billy & I are so grateful as we have felt your prayers and the burden became lighter at times. Galatians 6:2 says, "Carry each others burdens and in this way you will fulfill the law of Christ." We are blessed beyond measure with people who are willing to carry our burdens with us.
Here we go again...with God on our side!
This week Billy & I left our kids behind, now 12 & 9 yrs. old, to return for a quarterly follow up in Houston at MD Anderson. I had blood work and scans of my chest. The blood work showed some low function in my kidneys and indicated the spots in my lung have once again grown larger. The largest spot is still small at about 12 mm and growing slow, but steady. My doctor is suspicious enough that this is metastasized cancer that he has ordered a biopsy on March 3rd. He is basing his current concern solely on the scientific trend he has seen in cervical cancer cases, not hard evidence of my own case .... yet.
In addition, I am having some pain in my hip that he is going to have a CT of when we return as well. Cervical cancer (which they lump me into) has a tendency to move into the hip area as well.
My doctor began telling us that he would do some research for treatment if it comes back cancer. He shared how this has been unsuccessful in the majority of cases when treated with chemotherapy, but that is the primary plan. He will research clinical trials to see if anyone is seeing new success with other procedures as well. He explained that each person responds differently and that my age and health are on my side.
During this conversation Dr. L held my hand, but the pit in my stomach began to form and Billy was looking a bit pale as well. The word clinical trial brings hope, but fear as well. Are we really to this point, I wondered? That there is not another known cure? He said that our goal would be to shrink the cancer, but that there is not success in ridding me of it completely.
Long. Hard. Road. These words have stuck with us since we first heard in November 2010 that I had a rare vaginal adenocarcinoma at a young age of 34. Here we are facing the "fear" of a 4th round with this disease. But, I enjoyed an acronym shared with me this morning that fits the situation perfectly.
FEAR = False Evidence Appearing Real
According to Science & Fear they believe I have cancer, but according to Fact and Faith......we have yet to see what God will bring about!
Join us and......
...Boldly ask God to intervene on my behalf and allow me to be cancer free after these next tests. (Hebrews 4:16; Isaiah 63:7-9)
...Ask God to give Billy & I the words to update our children tonight, but not scare them in the process. We want them to know truth so they can feel and see God at work no matter what the outcome. (Matthew 19:14)
...Keep asking God to show me favor in this situation. Providing peace and strength while we wait, and joy and laughter when we hear the good news! (Matthew 7:7 NLT; Daniel 10:19; Proverbs 15:30)
Thank you for your continued love and concern this week. Billy & I are so grateful as we have felt your prayers and the burden became lighter at times. Galatians 6:2 says, "Carry each others burdens and in this way you will fulfill the law of Christ." We are blessed beyond measure with people who are willing to carry our burdens with us.
Here we go again...with God on our side!
Saturday, October 18, 2014
No more Houston this year!
I'm beyond excited to share that the pulmonologist (lung specialist) has decided that the nodules in my lungs are too small to biopsy right now. I know my excitement may seem crazy to some of you. It does mean that I have to wait it out, not knowing what the nodules are......but right now it feels like good news. It means I will actually go 12 months without any surgeries!!! My last one was in December 2013 and now I'm in the clear until 2015 at least. I'm VERY excited about a holiday season with no trips to Houston! I'll go back in January or February depending on what the doctors decide. They will do another CT scan then to see if there has been any growth/change. Isn't it awesome how God knows just what we need! I physically, emotionally and mentally needed and wanted a surgery free 2014!
Please continue to pray that the nodes have no change between now and the next scans. We don't want any additional nodes, nor any node growth. Also, continue to pray that the granulation tissue is no longer a problem so that my reconstruction finally heals properly.
Please continue to pray that the nodes have no change between now and the next scans. We don't want any additional nodes, nor any node growth. Also, continue to pray that the granulation tissue is no longer a problem so that my reconstruction finally heals properly.
Thursday, October 9, 2014
MDA Check up Results
I've been enjoying LIVING so much that I skipped my summer appointment at MD Anderson and went on vacation with my family (first time just the 4 of us since 2012 - my 2nd diagnosis), moved to a new house, hosted Isaiah's 12th birthday bash on the 4th of July....lots of things keeping me too busy for appointments!
I did need to bite the bullet and go back, however, and Billy and I returned from the trip last night. It was nice to have a 6 month break, but the visit was necessary. One of the great benefits of going to Houston is that they have doctors that don't ignore anything, so things will be caught very early. They also have such high tech equipment and staffing through their university to approach everything with the utmost detail. I'm so grateful for this and do believe this has gotten me where I am now......WITH LIFE! However, with this benefit also comes some downside........they don't ignore ANYTHING!
Yesterday I had to have an in-office procedure that was extremely painful. Once again removing granulation tissue where my reconstruction never wants to heal correctly. Dr L did encourage me that it will heal eventually. I had pretty much given up on this idea because it has been over 1 1/2 years of "trying" to heal and get rid of pain that it causes. I'm recovering well from this and it will help me with the daily pain that has increased again in the last couple months. I've had this same procedure done 4 times before....but it helps so I am thankful after each time.
Also, my CT scans of the chest still show some 5 or 6 small spots that they don't have a name for. The largest spot is 7 mm and once they knew to look for it on the January 2013 scan they can see it was there at that time, though microscopically small. This being said....it has grown to 7mm VERY SLOWLY. This is not typical of lung cancer. Also, spots in the lungs come from many things other than cancer. Both of my Houston friends that had my same TPE surgery had spots in their lungs. Both turned out to be "nothing" that needed treatment. However, they are very cautious at MDA and do not want to ignore anything. There is not a huge rush to do a biopsy of the largest spot because I am not having any symptoms at all. However, they do want to have a biopsy done. This will probably take place in November and will be done as a CT guided biopsy by a Pulmonologist (Lung specialist).
Obviously we prayed that we would be told it was not cancer for sure, but that this would be God's story and we would be obedient to walk through the doors he opens. We are tired of November being a month of trials, tests, and bad news, but there is a glimmer of hope that we will be told this is definitely not cancer as we round the base to our 4th year anniversary of my diagnosis....November 15th.
An excerpt from the booklet "Your Life Without Limits" by Nick Vujicic says....
"What is hope? It is where dreams begin. It is the voice of your purpose. It speaks to you and reassures you that whatever happens to you doesn't live within you. You may not control what happens to you, but you can control how you respond. We cannot see into the future. Instead, we picture the possibilities for what might be. Hope is God's gift to us, a window to look through."
As we view our own little world, may we all view it through a window of hope.
I did need to bite the bullet and go back, however, and Billy and I returned from the trip last night. It was nice to have a 6 month break, but the visit was necessary. One of the great benefits of going to Houston is that they have doctors that don't ignore anything, so things will be caught very early. They also have such high tech equipment and staffing through their university to approach everything with the utmost detail. I'm so grateful for this and do believe this has gotten me where I am now......WITH LIFE! However, with this benefit also comes some downside........they don't ignore ANYTHING!
Yesterday I had to have an in-office procedure that was extremely painful. Once again removing granulation tissue where my reconstruction never wants to heal correctly. Dr L did encourage me that it will heal eventually. I had pretty much given up on this idea because it has been over 1 1/2 years of "trying" to heal and get rid of pain that it causes. I'm recovering well from this and it will help me with the daily pain that has increased again in the last couple months. I've had this same procedure done 4 times before....but it helps so I am thankful after each time.
Also, my CT scans of the chest still show some 5 or 6 small spots that they don't have a name for. The largest spot is 7 mm and once they knew to look for it on the January 2013 scan they can see it was there at that time, though microscopically small. This being said....it has grown to 7mm VERY SLOWLY. This is not typical of lung cancer. Also, spots in the lungs come from many things other than cancer. Both of my Houston friends that had my same TPE surgery had spots in their lungs. Both turned out to be "nothing" that needed treatment. However, they are very cautious at MDA and do not want to ignore anything. There is not a huge rush to do a biopsy of the largest spot because I am not having any symptoms at all. However, they do want to have a biopsy done. This will probably take place in November and will be done as a CT guided biopsy by a Pulmonologist (Lung specialist).
Obviously we prayed that we would be told it was not cancer for sure, but that this would be God's story and we would be obedient to walk through the doors he opens. We are tired of November being a month of trials, tests, and bad news, but there is a glimmer of hope that we will be told this is definitely not cancer as we round the base to our 4th year anniversary of my diagnosis....November 15th.
An excerpt from the booklet "Your Life Without Limits" by Nick Vujicic says....
"What is hope? It is where dreams begin. It is the voice of your purpose. It speaks to you and reassures you that whatever happens to you doesn't live within you. You may not control what happens to you, but you can control how you respond. We cannot see into the future. Instead, we picture the possibilities for what might be. Hope is God's gift to us, a window to look through."
As we view our own little world, may we all view it through a window of hope.
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