Tuesday, March 30, 2010

Easter celebration is on!

I am sitting by a pool in the Doubletree Hotel in Rochester watching the girls swim. I am consuming the fresh baked cookie we received when we checked in and of course, a Dr. Pepper. I am thoroughly enjoying watching Mackenzie and Kendall have fun and be free from worry. Jason is off visiting customers at the Mayo. I am sad he can't join us today for all of the fun. It is nice to not be here as a patient but as a guest getting away from it all. Getting away from the cancer, the surgeries, everything! Tomorrow we will head to Platteville to spend Easter with Jason's family. I got the word yesterday afternoon at 4:00 that surgery will be on April 8th. Later on in the evening we decided to move forward with our plans to go out of town and began packing as quickly as we could.

I am doing much better since I found out the results of my scans. I was very angry for the first couple of days. Angry that I would need another surgery. Angry that the fear of cancer has returned. But most of all angry that my children would have to watch their mommy be sick and recover from yet another surgery. It has been very difficult for the both of them and they are always asking when mommy will feel better. Today, I feel at peace. I have a gut feeling that everything will be OK. Yes, there is an ounce of fear still there, but I am not as scared as I was the day I found out. And how ironic is it that the day of the surgery will be the one year anniversary of my diagnosis. It would be awesome to find out there is no more cancer on the same day of my diagnosis. I have felt your prayers and God has answered them by giving me the peace I needed to get through this.

The surgery should be pretty easy. There is a concern about my eye AGAIN! The mesh that will be removed is supporting my eye. So another doctor will be involved in the surgery to come up with a solution should my eye need more support. So your prayers for my eye again would be greatly appreciated. And please pray for the best possible outcome from the surgery.

Thank you all for your support and prayers.

Love,
Sue

Friday, March 26, 2010

Surgery Again

This entry will be brief....I need sometime to process the news I just received.

The results of the scans were not what I was hoping for. There is an infection and inflammation and a couple of spots that are questionable. My surgeon wants to go back in and take a look around. He will remove a portion of the mesh that is infected and check to make sure the questionable areas are not cancerous. He is hopeful it is not cancer because the cancer is slow growing and he cannot imagine it would have grown that much in such a short amount of time. The surgery will most likely be scheduled for next week.

I am very upset, disappointed, scared and angry. Facing yet another surgery is hard for me. I am so emotionally exhausted that I am finding it hard to fight on. I just wish for once I could just get good news without complications. In the past, when the doctor has said it could just be infection and inflammation it has turned out to be cancer. So I don't have a lot of confidence right now. I feel like the rug has been yanked out from underneath my feet.

We could use your prayers. I am going to need a supernatural strength to get through this next hurdle. My family is also exhausted from all of this. Mackenzie is having some emotional issues from the stress of this past year. When will this all end? When will we catch a break? How much more can we take? I am feeling like this is never going to end.

Sue

Monday, March 22, 2010

It's a New Day

Life is doing the best it can to get me to move forward. Life is no longer at a stand still but taking its course all around me. Yet I find myself with my feet planted saying "NO, it is not safe yet." Plans are being made for the future...exciting plans and I find myself hesitant and scared that something is going to happen to prevent them from coming to fruition. Plans for vacations, plans to finish our basement, plans for the Summer. I am scared these will all be taken away with bad news. My commitment to the future has a condition or an out clause. My ability to move on seems to depend on the results of this weeks scans. Should I receive good news, I may be able to move on. But will I really be able to do so? Will I finally be able to let my guard down? This roller coaster is far from over. I have more surgeries to face in the future. Will I be able to step off of the ride to rest every now and then if I find out the cancer is gone?

Recently, a friend gave me a book to read called "The One Year Book of Hope" by Nancy Guthrie. The author lost two children within 6 months of birth to Zellweger Syndrome. Through her grief she wrote this book about finding hope in the midst of pain and suffering. I have identified with the author on many levels as a result of my own pain and suffering. The book has allowed me to put into words my own feelings as as result of going through cancer. She writes...

"I would like to tell you that our desire to trust in God erased the fear we had about the future - but it wouldn't be true. What I will tell you is that we determined to trust God with the future of our family. And it wasn't a decision we made one day for forever. It is a decision we made again every day (or at least most days) and a decision we continue to make every day."

I found this to be true in my own life. I have to make the decision to trust God with my life and future every day. And on the days that I fall apart and start feeling afraid...it is good to know that I can start all over again the next day. No matter how hard I work on letting go and letting God, fears will always be there. Yet, when I wake up every morning asking God to help me get through the day it makes a big difference and easier to commit to the future.

Lamentations 3:22 "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness."

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!


My appointment with the doctor today went well. He wants me to finish my current course of antibiotics. I should be finished with them in about one week. Should the infection not go away, they will then schedule surgery to remove the mesh in my face. At the same time, they will remove the IV port in my chest. We also discussed a future surgery to fix one of the bones that was transplanted my face. It will need to be corrected down the road.

My scans are on Thursday. I should know the results by Friday afternoon. My stomach is knotted up inside and I am filled with anxiety about the upcoming scans. But every day I ask God to get me through this week with good news to follow.

I am not feeling confident about the infection going away. It is going to take a miracle. So please pray...pray it will go away. And please pray for good news this week. I just want to be able to celebrate the upcoming holiday with family with joy and happiness knowing the cancer is gone and no surgery will be needed in the near future. It has been along time since we have been able to celebrate a holiday without fear and disappointment.

Thank you all!

With love,
Sue

Friday, March 19, 2010

Source of hope in the midst of suffering

After experiencing tremendous pain and suffering, it is a challenge to not succumb to feelings of hopelessness and despair. There are days I feel sad and I just want to stay in bed to avoid facing the reality of cancer. Most days, tears are always close to the surface, just waiting to be released. It is hard for me to talk about what I have been through without fighting back the tears. There will always be mental snapshots of this past year reminding me of the pain I felt, the fear I felt and the disappointment that swallowed me. It is a battle every day to avoid getting swallowed by all of these feelings and the negative thoughts the enemy tries to place in my head. The only source of hope and escape in the midst of it all is remembering God's love through it all.

"He shot his arrow deep into my heart. The thought of my suffering and hopelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss. Yet I still dare to hope when I remember this: the unfailing love of the Lord never ends! By his mercies we have been kept from complete destruction." Lamentations 3:13, 19-22

It may seem daring to make room in your mind for what you know is true about God, and honestly, it is difficult when it feels as if he has shot his arrow deep into your heart. But the truth of God's love transforms our thoughts and our feelings when we choose to remember and choose to BELIEVE. - The One Year Book of Hope by Nancy Guthrie


So my constant prayer is that God will always make the reality of his faithfulness more vivid than the pain I have experienced this past year. When I think about what I have been through and what is still to come, I find myself easily getting lost in all of the pain and suffering. But when I think about everything God has done to pull me through chemo, radiation and surgery I find myself hoping again. A day does not go by where I am reminded of the message to BELIEVE. This message is in everything I see, read and hear.

The weather these past couple of days have been a tremendous blessing to me. The warm weather has allowed me to be outside again. I have been able to hop on my bike and get some exercise. All of this has lifted my spirits and brought me much needed JOY! Being outside has given me some time to get my mind of the infection and the upcoming scan.

I was invited by my church to be a part of a team starting up a new cards for encouragement ministry. It will be an opportunity to encourage those that are experiencing pain or suffering in many forms through cards handmade and written by the ministry team. The cards of encouragement I received by many of you this past year gave me much needed hope and support. Each of the cards were a tremendous blessing to me. I am so excited to be able to take what I was given and now in turn give it to others that are in need. I am hoping this is the first of many opportunities to take my experience this past year and use it for good.

The antibiotic I was on was not working so now I am taking a different and stronger antibiotic. I think this is the last shot at fighting the infection. Should it not work, surgery is the next option.

Physical Therapy is working. I am getting more motion in my leg and foot. I am not close to running yet, but I am heading in that direction.

I would appreciate your continued prayers that the infection will heal and that the rest of my wounds would heal as well. Thank you!

Sue

Monday, March 15, 2010

Infection is coming back

I could really use your prayers right now. The infection in my face is back full force. It is also affecting my eye. They are placing me back on oral antibiotics. If this does not clear up, surgery is inevitable. The mesh that is being used as a support to my eye and my sinus wall will need to be removed. There is a concern that if it is removed, the eye may not have enough support. They are hopeful that there will be enough scarring to hold the eye in place, but it is too hard to know. I don't know if I have it in me to go through yet another surgery. Please pray this infection will go away. I am really down about this and am trying hard to stay positive. I just want so badly to heal.

Love,
Sue

Thursday, March 11, 2010

Super Why!

Kids say the darndest things. Sometimes what they say is hilarious, embarrassing or inappropriate. Yet, sometimes what they say is profound. The other day Kendall and I were watching the cartoon Super Why! The characters on the show were spelling out a word. They gave the letters A and E and asked the kids to fill in the blanks to complete the word (_ _ A _ E). Kendall immediately said, "Mom, I know what the word is...it is BELIEVE." I said, "Not quite Kendall. The word BELIEVE does not have an A in it." After I said this, the rest of the letters in the word was given. The word was BRAVE. So I said, "Kendall, the word is BRAVE." Kendall said, "Mom...don't you know...BRAVE and BELIEVE are the same?" I had another one of those Aha! moments. Little did Kendall know that her statement reminded me of the relationship and importance of BELIEVING and being BRAVE during difficult circumstances. BELIEVING and being BRAVE are two things I have been working hard on this past year.

"Look to Jesus and BELIEVE - look to Jesus and live! In fact as you look to Him, unfurl your sails and BRAVELY face the raging storms on the sea of life. Do not exhibit your distrust by staying in the security of the calm harbor or by sleeping comfortably through your life of ease. Do not allow your life and emotions to be tossed back and forth against each other like ships idly moored at port. The Christian life is not one of listless brooding over our emotions or slowly drifting our keel of faith through shallow water. Nor is it one of dragging our anchor of hope through the settling mud of the bay, as if we are afraid of encountering a healthy breeze." - Streams in the Dessert

I think these past couple of weeks I was allowing my emotions to get the best of me and that the anchor of my hope was not where it was supposed to be. This passage I read in my devotions and Kendall's statement reminded me that I needed to refocus and start believing and hoping again and to be bravely face what is to come in the next few weeks.

Things are looking up. My infection seems to be getting better. The medicine they have given me is working. I was so scared that I would need more surgery to help get rid of the infection, so seeing the redness go away is calming my nerves. I also started physical therapy on my leg and foot this week. I came to realize that it wasn't getting any easier to walk so I needed some help. After an evaluation with a physical therapist, it was determined that as a result of wearing the cast for a long time the muscles and the tendons in my foot and leg are very tight. This is causing my range of motion to be very limited. The therapist has given me some exercises to do at home and I will be visiting her twice a week. She said that I will get back to normal and that I will be able to run again. I will also be working with a Sports Therapist to help me get me back into running shape.

Due to the trauma from surgery and radiation, my jaw has become very tight and it is very difficult to open wide. This makes eating quite the event. I often walk away from meals with spills all over my front because I can't get the fork or spoon into my mouth. I have to take little bites and I am limited in the foods I eat. My doctor said that if I don't nip this in the bud, it will be very difficult to overcome. So I do stretching exercises to get my mouth to open wider. I am not having a lot of success so I am getting a little worried. So if you could add this to your prayer list that would be a blessing!

I want to thank those of you that have donated money to support my participation in the Relay for Life. I have reached my goal! I am so amazed by your generosity!!! I am still taking donations, so if you wanted to donate and have not done so already, please feel free to click on the link on the top of my blog!

Thank you for your continued prayers. I have definitely felt them, especially this past week. I so needed them as I was at an all time low. Things are turning around.

Much love to you all,
Sue

Friday, March 5, 2010

Weariness

Weariness
By Phillip C. Vinson

Be not weary in well doing we are told,
Weariness in body also wants to have a hold.
Weariness just seems to creep in,
It all started with Adam's sin.
As I get older weariness seems to know,
But when time to leave it is slow.
Weariness sometimes just takes it's toll,
But gives me strength, there is no lack.
One day weariness will have to go,
It will be banned from my life, that I know.
Weariness can sure wear you out,
Satan enjoys that, that's what he is all about.
I can still come to God in those times too,
He refreshes me, He knows just what to do.
Weariness has visited many in it's day,
And many more it will visit before it goes away.
One day God will tell it to go,
That will be a wonderful day I know.
One day weariness will no longer be,
Jesus will have removed it from you and me.
That word will no longer be,
From getting old, tired, weary I will be free.
When weary in body or Spirit God helps us down life's road,
He will be there to help us with our heavy load.
We know one day this will all end,
Because an all new life we will begin.


It has been a long year of fighting, recovering and healing. My spirit is broken and I feel as if I have lost my inner joy. I seem to be going through my days emotionless and exhausted. This past year and the recovery from the surgery has taken its toll on me. I have given every ounce of my being to fight this cancer. Now, I am weary in body and spirit.

I am in desperate need of a break. A break from the doctors, the appointments, the anxiety and from the fearful thoughts in my mind. I would give anything to be able to live my life without worry and anxiety. No matter what I do, it is always there. I am still healing from my physical wounds, but have a long way to go to heal from the mental wounds this cancer has caused.

Like this poem says, one day God will tell it to go. How I long for that day. When I will no longer be weary. That once again I will find joy and be free from the burdens I bare. I know it will happen one day. That I will get through this. My only comfort is knowing that God is there to help me with my heavy load. That God has already given me the peace that I so desperately need.

Psalm 119:28 "My soul is weary with sorrow; strengthen me according unto your word."

Deuteronomy 31:8 "The Lord himself goes before you and will be with you, He will never leave you nor forsake you. Do no be afraid; do not be discouraged."

Hebrews 13:5 "He himself has said, I will never leave you nor forsake you."

Genesis 28:15 "Behold I am with you and will keep you wherever you go."

John 14:27 "Peace I leave you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

Please pray for strength both mentally and physically. Please pray this infection will go away. Please pray this cancer will STAY away.

Blessings,

Sue

I am so close to my goal of $1,000 for the Relay for Life. Please help me get there! If you wish to donate, please click on the link above. All money raised will go to the American Cancer Society and the fight against cancer.

Wednesday, March 3, 2010

Thank you for inviting me in

Valentines Day 2010 - the best Valentines Day I have ever had. I received a plethora of gifts and presents from friends and family filled with goodies for me and my family. It was like Christmas Day all over again and I had so much fun opening each and every gift I received! One of the packages I received was from two special college friends. The package included a little album of index cards written with carefully selected bible verses. Some of the verses were near and dear to my heart throughout this past year. And some of the verses were new ones offering much needed encouragement.

Yesterday afternoon I wanted to spend some time reading the Bible and in prayer to help me through the anxiety I have been experiencing these past couple of days. I remembered this book of verses my friends gave me, began reading the first verse and stopped there. This verse was exactly what I needed to hear and it could not have been more perfect for what I am going through at this time.

Philippians 1:6 "Be confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."

God has been doing great things in my life this past year. This verse was a great reminder that he will continue to do great things including helping me get through this battle with cancer. After these past couple of days, it was very comforting to me to read this verse. But this verse says so much more...not only has God began a good work in me, but through me as well. God has used my cancer to impact others. It is very humbling to know that through this blog God used me to touch your lives. That was not the purpose of me starting a blog. I was using it as a tool to communicate my thoughts, feelings and progress to family and friends. Little did I know that hundreds, if not thousands of you would read my blog faithfully. I feel honored that my experience has impacted and changed the lives of so many. This gives wonderful meaning to all of the pain and suffering I have endured this past year. Thank you for inviting me into your lives.

My anxiety is getting a little better. Every now and then I have waves of fear of the unknown overcome me, but I am getting hopeful again that this cancer is gone and will stay gone. It just takes me a few days to calm down after I have a discouraging doctor appointment.

I am still battling the infection in my face. Today I started on a nasal irrigation antibiotic so I am hoping that will nip the infection in the bud. It has been wonderful not wearing the boot on my leg...however walking is difficult and I feel very unstable. I won't be walking around the block anytime soon, but I am able to do a lot more around the house now that I am free from the walker. Yesterday, I was able to drive my car for the first time in a couple of months. Today, I was able to go to Caribou have coffee with my sister and Kendall. A weekly tradition Kendall and I started years ago and have not been able to do it for quite some time. She was so excited to spend time with mom and have her favorite treat...lemon bread from Caribou. And even better, her Aunt Cheri was there too. It is such a great feeling knowing that I am not confined to the house anymore. I am not ready to drive a long distance, but a trip to the store is easy enough on my leg.

Please continue to pray for the infection in my face and that the cancer is gone and will stay gone. I continue to need your prayers and encouragement!

Thank you all!

Sue

PS - I am over half way to my goal of raising $1,000 for the Relay for Life fight against cancer. My fight is not over and I want to do whatever I can to prevent this from happening to someone else. I am starting to realize that cancer is so much more common than we think. Too many people have been afflicted by this horrible disease. I never ever thought I would be be diagnosed with cancer. But it can happen. Please help me get there my donating any amount you can. Click on the link at the top of my blog to visit my Relay for Life website and to donate! Thank you!

Monday, March 1, 2010

Setbacks

Today I came home from yet another doctor appointment very discouraged. I am starting to think that the rest of my life will involve battling this cancer.

The doctors are discussing whether or not to place me on a low dose chemotherapy pill. I am not too happy about this as I feel like my body has been through enough already. They said they are not sure if it would do anything, but more or less give them a peace of mind that I am taking preventative measures to prevent this cancer from coming back. What makes them feel uneasy is that because the sinus area is so small, the marginal area that can be removed to make sure there is no more cancer is so minute. Compare it to skin cancer on your leg...the doctor can take as much skin and tissue as he wants to make sure he gets rid of all of the cancer. In the sinus area, the doctors do not have the liberty to take as much tissue as they want. So the chances of all of the cancer not being removed surgically is a lot higher. My Surgical Oncologist is still confident he got it all, but time will tell. An MRI has been scheduled for March 25th. The first of many to be done.

Then there is the infection in my face. During the reconstruction of my face there was a mesh lining inserted to somewhat hold things together. It is also supporting my eye and is acting as a lining to my nasal passage. He was able to see the mesh as he was looking up my nose. Typically tissue grows over this mesh, but it hasn't happened yet. My doctor is wondering if this mesh has an infection in it. Should the antibiotics not clear up the infection, they will have to surgically remove the mesh. This will put my eye at risk again. But he is hopeful that there will be enough scarring to hold the eye into place.

I walked away from the appointment in tears. Just when I thought I was getting to end of the tunnel, I am back in one again. I am having a lot of anxiety about the upcoming scan and about the possibility of being place on a low dose chemotherapy pill. I know that I just need to let go and let God. I am not in control here. I need to trust he is going to get me through these next setbacks. I need to go back to that dwelling place with God I found when I was down and out. It was so comforting and safe. I don't know why I ever left it in the first place.

What is more difficult is knowing when it will be safe to make plans for the future. Jason and I have been talking about planning a vacation for our family. I know I just need to plan my life and move on without worrying about the what ifs. But it is so hard for me to take that step especially when I get news like I did today.

On the positive side...I got the OK to take the boot off and start walking on my own again. It does feel very funny and uncomfortable. But I am hoping after a few days of walking on my leg without the boot and the assistance of the walker it will get easier. Yeah!

Please continue to pray...especially for the infection in my face. Please pray this cancer is gone and that it will NOT come back. And pray for my peace of mind now and for the future.

Much love,
Sue