It was a Saturday morning in December. I had just finished doing what I do best on Saturday mornings...sleeping in. I came down the stairs, still attempting to wake up, and as soon as I reached the bottom step a little hand with a piece of paper was waving in front of my face. It was a Christmas card Kendall had been working on all morning while I was milking every possible minute I could to stay in bed. Kendall had a very strong determination to show me what she had done and to give me specific instructions on what to do with it. It was a Christmas card she made, clearly on the computer paper I have told her endless times that was not to be used for coloring. Yet, I did not have it in me to remind her that computer paper was too expensive to use for drawing as I soon read the front of the card. It said "Gloria", the theme of the Christmas concert we had attended at church the night before. Underneath it was a carefully drawn star. Inside the card included a Bible verse that Kendall received in Sunday School. It was one of the first Bible verses she had ever memorized and coincidentally it was a verse that was near and dear to my heart throughout my battle with cancer. The card read....
"Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." Matthew 11:29
After reading the card and basking in the moment that my daughter had memorized a verse that I cherished, Kendall said the card was created specially for our Pastor and insisted that I send the card to him immediately. He has become near and dear to our family as he has supported us over the past couple of years. I set the card on the counter, and walked away not realizing the importance of the card. Kendall once again insisted that I mail the card to our Pastor. My strong willed daughter was not going to give up, so I got out an envelope, addressed it, and put the envelope in the mail on the following Monday. Little did I know what God was doing in the heart of my little girl and about to do for the person on the receiving end of the card.
Within a few days, I got a call from our Pastor. He was so touched by the card. He wanted Kendall to know that not only was it his favorite Christmas card he had received, but it meant more to him that she would ever know. For it could not have been better timing for him to receive the message of hope that the card and the Bible verse in it gave to him. I could tell it in his voice and in my heart that it was something he needed to hear. God had clearly used my little girl to show encouragement to someone that needed it at that time.
I have the card with the Bible verse Kendall received in Sunday School taped to our refrigerator. It is next to our family calendar that helps to keep our family somewhat organized. Since I look at this calendar at least 2-3 times a day to make sure I get everyone where they need to be, including myself, I read the verse every day.
This verse will once again be giving me much needed hope and peace in the upcoming weeks. The long awaited, much planned, and much anticipated surgery to fix my face has finally been scheduled. After waiting almost one year and spending countless hours meeting with surgeons reviewing the risks, potential complications and plan of action to fix my face, the surgery has been scheduled for March 27. It is going to be a difficult surgery that will involve three different surgeons. It will most likely be as involved and as intense as my maxillectomy requiring bone, skin and tissue to be transplanted from my shoulder. Should everything go as planned, the surgery will fix the contour of my face, the droop of my eye lid, provide better support for my eye, and replace missing bone and teeth.
On Monday, we got back from our annual trip to Florida. We sailed away on another Disney cruise and spent some time in the Disney area. It was a wonderful time spent with Jason and the girls as well as Jason's parents. It was much needed time to spend together before we embark on this next journey. I am anticipating this year to be another long year filled with surgeries and recovery. For it may take several surgeries to get the end result that my surgeons and I are looking for.
Surprisingly, I have felt very at peace about the surgery. It may be because I am still feeling the high of the happiest place on earth that Disney gives. But knowing myself all to well, I am sure my anxiety level will increase as the date approaches. Memories of the pain and discomfort I felt after my last surgery are starting to loom in the back of my mind. I am beginning to prepare the girls for what is to come as well as map out how to make everyone's life easier while I am in the hospital and recovering. Despite the risks, I am so excited to have a new face....to hold my head up high again...to be comfortable in my own skin again.
I am thankful for the help that many of you have already offered and for the assistance that our parents will be giving. Please keep me and my family in your prayers over the next few weeks. I will continue to keep you updated through this blog.
Love,
Sue
Thursday, March 8, 2012
Wednesday, January 11, 2012
Mackenzie's Gall Stone
It started a couple of nights ago...Mackenzie was experiencing severe abdominal pain and nausea. She was in so much pain she was doubled over, vomiting and screaming in bed....unable to sleep. I spent the majority of the night in bed with her trying to keep her calm. Due to complications of being born at 23 weeks, Mackenzie has lost half of her intestines and colon. Stomach issues are not abnormal for her. But this time was different. This pain and discomfort started to happen at the beginning of the school year and has kept her from going to school on several occasions. Her last attack was a couple of weeks ago and this time it was worse. I asked Mackenzie where the pain was and she pointed to the area of her abdomen where her gall bladder is located. My instincts started telling me she had a gall stone.
The next day I called her Gastroenterologist and he scheduled an ultra sound and x-rays of her abdomen. While Mackenzie was laying on the hospital bed watching TV, I was closely watching the ultra sound screen. As the tech started looking at her gall bladder, I quickly noticed a round object, a rather round large object. It quickly confirmed my instincts...Mackenzie had a gall stone.
After speaking with her doctor this morning, it is clear that Mackenzie will need to have the stone removed. Typically this procedure is simple, however in cases like Mackenzie, it is complicated. Due to the many surgeries (we have counted over 20 surgeries in her lifetime) on Mackenzie's intestines, she has a lot of adhesions. Her intestines are fragile and have a tendency to perforate any time she has a surgery.
We will be meeting with her surgeon on Friday to discuss the options. It will be the surgeon that operated on Mackenzie many times when she was a little itty bitty baby. It will be fun to see him again and I know he will enjoy seeing Mackenzie and the progress she has made over the years. But at the same time, I know he will be sad to see her back in his office and operating room again.
After spending a few days with Mackenzie at home while she was sick, our refrigerator and pantry became bare. I was unable to do any grocery shopping forcing us to be creative with coming up with an option for dinner. Today, Mackenzie felt good enough to go back to school allowing me to finally make a trip to Target to buy much needed food for my family. Grocery shopping is one of my least favorite things to do. My goal is to get through Target quickly as I cross off the items on my list. Yet to no avail, I always bump into a friend or neighbor and find myself visiting with them. Before I know it I am leaving Target after being there over an hour due to these frequent encounters. Today, I bumped into an old friend and we spoke quite sometime catching up with one another and filling her in on how I was doing. Soon my friend began telling me how I should publish a book utilizing the posts from my blog during my battle with cancer. I have been encouraged by many others to send my blog entries to a publisher.
This afternoon I decided to read through my blog entries beginning with day one...my diagnosis. I wanted to see if they truly were worthy of being published. As I was reading each blog I was listening to my cancer playlist in iTunes...all of the songs of hope I included on my blog. Tears streamed down my face as I was reading through each blog and each of the posts by friends and family. My mind was flooded with memories of the pain and suffering I experienced. It was difficult to read. But at the same time it reminded me of the TREMENDOUS love I felt throughout my battle. But more importantly it reminded me of the lessons I learned about trusting in God and leaning on him in difficult circumstances. Something I needed to be reminded of as I began to worry about Mackenzie and her gall stone.
Amazingly, I have been pretty calm. Well, not completely calm, but calmer that I would have been three years ago. Reading the blogs today also helped me to become aware of how much I have grown and how much more I trust God with difficult situations. Three years ago I would have allowed myself to be overwhelmed with fear as I think back to what Mackenzie experienced 10 years ago. Something I would not not want or nor want Mackenzie to relive. Today, I am entrusting Mackenzie to God and giving full control over this situation to Him. As always, she is so strong and such a trooper. Every day she amazes me with her positive attitude and fearless nature with all of that she struggles with in her life - more than any child should ever have to face in life.
As for my surgery, the plan remains the same...to have it done in March. A lot of planning is going on right now and I am frequently visiting with the surgeons that will be involved in the surgery. A plan has been set with utilizing bone and tissue from my shoulder to reconstruct the orbit underneath my eye. The grafted bone from my leg in my face will be taken apart and repositioned. Should my skin not stay intact, skin from my shoulder will also be transplanted. It will be complicated surgery, but as the days go I am becoming more and more ready for it to happen.
Please keep Mackenzie in your prayers over the next week. Pray the stone will not move into her intestines and that the surgeon will be able to remove it without any complications.
With love,
Sue
The next day I called her Gastroenterologist and he scheduled an ultra sound and x-rays of her abdomen. While Mackenzie was laying on the hospital bed watching TV, I was closely watching the ultra sound screen. As the tech started looking at her gall bladder, I quickly noticed a round object, a rather round large object. It quickly confirmed my instincts...Mackenzie had a gall stone.
After speaking with her doctor this morning, it is clear that Mackenzie will need to have the stone removed. Typically this procedure is simple, however in cases like Mackenzie, it is complicated. Due to the many surgeries (we have counted over 20 surgeries in her lifetime) on Mackenzie's intestines, she has a lot of adhesions. Her intestines are fragile and have a tendency to perforate any time she has a surgery.
We will be meeting with her surgeon on Friday to discuss the options. It will be the surgeon that operated on Mackenzie many times when she was a little itty bitty baby. It will be fun to see him again and I know he will enjoy seeing Mackenzie and the progress she has made over the years. But at the same time, I know he will be sad to see her back in his office and operating room again.
After spending a few days with Mackenzie at home while she was sick, our refrigerator and pantry became bare. I was unable to do any grocery shopping forcing us to be creative with coming up with an option for dinner. Today, Mackenzie felt good enough to go back to school allowing me to finally make a trip to Target to buy much needed food for my family. Grocery shopping is one of my least favorite things to do. My goal is to get through Target quickly as I cross off the items on my list. Yet to no avail, I always bump into a friend or neighbor and find myself visiting with them. Before I know it I am leaving Target after being there over an hour due to these frequent encounters. Today, I bumped into an old friend and we spoke quite sometime catching up with one another and filling her in on how I was doing. Soon my friend began telling me how I should publish a book utilizing the posts from my blog during my battle with cancer. I have been encouraged by many others to send my blog entries to a publisher.
This afternoon I decided to read through my blog entries beginning with day one...my diagnosis. I wanted to see if they truly were worthy of being published. As I was reading each blog I was listening to my cancer playlist in iTunes...all of the songs of hope I included on my blog. Tears streamed down my face as I was reading through each blog and each of the posts by friends and family. My mind was flooded with memories of the pain and suffering I experienced. It was difficult to read. But at the same time it reminded me of the TREMENDOUS love I felt throughout my battle. But more importantly it reminded me of the lessons I learned about trusting in God and leaning on him in difficult circumstances. Something I needed to be reminded of as I began to worry about Mackenzie and her gall stone.
Amazingly, I have been pretty calm. Well, not completely calm, but calmer that I would have been three years ago. Reading the blogs today also helped me to become aware of how much I have grown and how much more I trust God with difficult situations. Three years ago I would have allowed myself to be overwhelmed with fear as I think back to what Mackenzie experienced 10 years ago. Something I would not not want or nor want Mackenzie to relive. Today, I am entrusting Mackenzie to God and giving full control over this situation to Him. As always, she is so strong and such a trooper. Every day she amazes me with her positive attitude and fearless nature with all of that she struggles with in her life - more than any child should ever have to face in life.
As for my surgery, the plan remains the same...to have it done in March. A lot of planning is going on right now and I am frequently visiting with the surgeons that will be involved in the surgery. A plan has been set with utilizing bone and tissue from my shoulder to reconstruct the orbit underneath my eye. The grafted bone from my leg in my face will be taken apart and repositioned. Should my skin not stay intact, skin from my shoulder will also be transplanted. It will be complicated surgery, but as the days go I am becoming more and more ready for it to happen.
Please keep Mackenzie in your prayers over the next week. Pray the stone will not move into her intestines and that the surgeon will be able to remove it without any complications.
With love,
Sue
Tuesday, December 20, 2011
The Christmas Gift of Knowing You
The Christmas season fills our hearts with joy; bright, happy days bring special kinds of pleasure.
We're wrapped in the excitement of it all, the sights, the sounds, the smells, the tastes we treasure.
Yet when we have some quiet time to think, about our finest blessings all year through. We focus on our family and our friends, and appreciate the gift of knowing you!
Merry Christmas to all of you!
Love,
Sue
Wednesday, December 7, 2011
Yes, Virginia There is a Santa
"I stopped believing in Santa Claus when my mother took me to see him in a department store, and he asked for my autograph." - Shirley Temple
I wish it had been this simple for my girls to find out the truth about Santa. Unfortunately, it was not. Up until a week ago, my girls firmly believed in Santa and the Elf on the Shelf that visited our house throughout the month of December until Christmas Eve. For it was on Christmas Eve that the Elf, lovingly named Buttons, flew back to the North Pole to help Santa get ready for delivering presents. I knew my girls were getting to an age that it was time to tell them the truth. Questions were asked liked "Why does Santa look different every time we see him at the mall?" The girls were getting teased by their peers about their belief in Santa and received many puzzled looks when they told their friends about the elf that was living at our house. However, it wasn't until last week when Kendall said, "Mom, please tell me the truth. Is Santa and Buttons for real? I don't want to be made a fool of." My heart sank and I soon realized the day had come. After much discussion, Jason and I knew it was time to tell the girls the truth. It broke our hearts to know the magic that Santa and Buttons created in our girls lives would soon be taken away.
The morning after Thanksgiving, we were sitting at the breakfast table and it was time to spill the beans. Mackenzie handled the news very well. She said, "Oh" and that was that. Kendall on the other hand was very angry with us and was broken hearted. Tears streamed down her face as we also broke the news to them that the Tooth Fairy and Eater Bunny were not real as well. Thus the conversation began about what Christmas is really all about.
In an unsigned editorial of the New York's Sun issue on September 21, 1897, an anonymous writer responded to a letter written by Virginia O'Hanlon to the newspaper. As many of you recall this letter said, "Dear Editor: I am 8 years old. "Some of my little friends say there is no Santa Claus. Papa says, "If you see it in THE SUN it's so. Please tell the truth; is there a Santa Clause?" The anonymous writer's response is as follows:
Yes, VIRGINIA, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! How dreary would be the world if there were no Santa Claus. It would be as dreary as if there were no VIRGINIAS. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished. Not believe in Santa Claus! You might as well not believe in fairies! Only faith, fancy, poetry, love, romance, can push aside that curtain view and picture the supernatural beauty and glory beyond. Is it all real? Ah, VIRGINIA, in all this world there is nothing else real and abiding.
It is for this very reason, I do not regret encouraging the belief in Santa and Buttons. It did teach the girls about the love, generosity and devotion that the anonymous writer mentioned in his response. It taught them to have faith in things not seen. It provided the foundation for their faith and belief in God. Yes, I was afraid by telling them there was no Santa it would then cause them to question the existence of God. Thankfully, there was never a doubt. Thus, I believe encouraging your kids to believe in Santa is not a bad thing to do.
"If you can't believe, if you can't accept anything on faith, then you are doomed for a life dominated by doubt." - Miracle on 34th Street
This Christmas I will be focusing more on the magic that the Birth of Jesus brings to our family, friends and to the world. I hope to teach the girls more about the love God showed to mankind by sending his Son to earth to eventually die for our sins. I changed our advent calendar this year to include activities that will give the girls opportunities to share this love with others. Even though Santa is no longer real in their minds, I am hoping this Christmas will be better than ever and that the girls will experience a magic more powerful than Santa. Yes, there is a God. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! How dreary would be the world if there were no God.
This week I received one of the greatest Christmas gifts. I am happy to report my MRI has shown that I am still cancer free!!!! I have officially been in remission for two years. I have overcome the odds that were given to me when I was diagnosed. I was given a 50/50 chance to live. After my surgeon saw how extensive the tumor had invaded my face, he was unsure that this cancer would not return. He was happy to see the results of my MRI…in his experience he rarely sees this cancer return after two years. I am so thankful and happy. Tears of joy have streamed down my face several times these past couple of days. I now feel like I can truly experience the joy of Christmas.
Thanks to all of your wonderful messages and support on this blog and Facebook. I am so thankful to reconnect with all of you. I am blessed by each and every one of you. This year, I hope all you experience the magic of Christmas!
Love,
Sue
I wish it had been this simple for my girls to find out the truth about Santa. Unfortunately, it was not. Up until a week ago, my girls firmly believed in Santa and the Elf on the Shelf that visited our house throughout the month of December until Christmas Eve. For it was on Christmas Eve that the Elf, lovingly named Buttons, flew back to the North Pole to help Santa get ready for delivering presents. I knew my girls were getting to an age that it was time to tell them the truth. Questions were asked liked "Why does Santa look different every time we see him at the mall?" The girls were getting teased by their peers about their belief in Santa and received many puzzled looks when they told their friends about the elf that was living at our house. However, it wasn't until last week when Kendall said, "Mom, please tell me the truth. Is Santa and Buttons for real? I don't want to be made a fool of." My heart sank and I soon realized the day had come. After much discussion, Jason and I knew it was time to tell the girls the truth. It broke our hearts to know the magic that Santa and Buttons created in our girls lives would soon be taken away.
The morning after Thanksgiving, we were sitting at the breakfast table and it was time to spill the beans. Mackenzie handled the news very well. She said, "Oh" and that was that. Kendall on the other hand was very angry with us and was broken hearted. Tears streamed down her face as we also broke the news to them that the Tooth Fairy and Eater Bunny were not real as well. Thus the conversation began about what Christmas is really all about.
In an unsigned editorial of the New York's Sun issue on September 21, 1897, an anonymous writer responded to a letter written by Virginia O'Hanlon to the newspaper. As many of you recall this letter said, "Dear Editor: I am 8 years old. "Some of my little friends say there is no Santa Claus. Papa says, "If you see it in THE SUN it's so. Please tell the truth; is there a Santa Clause?" The anonymous writer's response is as follows:
Yes, VIRGINIA, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! How dreary would be the world if there were no Santa Claus. It would be as dreary as if there were no VIRGINIAS. There would be no childlike faith then, no poetry, no romance to make tolerable this existence. We should have no enjoyment, except in sense and sight. The eternal light with which childhood fills the world would be extinguished. Not believe in Santa Claus! You might as well not believe in fairies! Only faith, fancy, poetry, love, romance, can push aside that curtain view and picture the supernatural beauty and glory beyond. Is it all real? Ah, VIRGINIA, in all this world there is nothing else real and abiding.
It is for this very reason, I do not regret encouraging the belief in Santa and Buttons. It did teach the girls about the love, generosity and devotion that the anonymous writer mentioned in his response. It taught them to have faith in things not seen. It provided the foundation for their faith and belief in God. Yes, I was afraid by telling them there was no Santa it would then cause them to question the existence of God. Thankfully, there was never a doubt. Thus, I believe encouraging your kids to believe in Santa is not a bad thing to do.
"If you can't believe, if you can't accept anything on faith, then you are doomed for a life dominated by doubt." - Miracle on 34th Street
This Christmas I will be focusing more on the magic that the Birth of Jesus brings to our family, friends and to the world. I hope to teach the girls more about the love God showed to mankind by sending his Son to earth to eventually die for our sins. I changed our advent calendar this year to include activities that will give the girls opportunities to share this love with others. Even though Santa is no longer real in their minds, I am hoping this Christmas will be better than ever and that the girls will experience a magic more powerful than Santa. Yes, there is a God. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! How dreary would be the world if there were no God.
This week I received one of the greatest Christmas gifts. I am happy to report my MRI has shown that I am still cancer free!!!! I have officially been in remission for two years. I have overcome the odds that were given to me when I was diagnosed. I was given a 50/50 chance to live. After my surgeon saw how extensive the tumor had invaded my face, he was unsure that this cancer would not return. He was happy to see the results of my MRI…in his experience he rarely sees this cancer return after two years. I am so thankful and happy. Tears of joy have streamed down my face several times these past couple of days. I now feel like I can truly experience the joy of Christmas.
Thanks to all of your wonderful messages and support on this blog and Facebook. I am so thankful to reconnect with all of you. I am blessed by each and every one of you. This year, I hope all you experience the magic of Christmas!
Love,
Sue
Monday, November 14, 2011
Believing and Persistent Prayer
My sister recently wrote an article on prayer and it was purchased and published in the The Lutheran Magazine. The article was about the transformation that takes place when one prays. The article included a brief story on my battle with cancer and how prayer was important to me during that time. Prayer was my way of taking what little control I had in my life at the time and using it in the only way I knew would be the most effective - by praying and casting my cares upon God. Prayer gave me power to move on and face whatever was ahead of me whether it was good or bad.
I am now finding myself relying on prayer once again as the long awaited surgeries to fix my face will be started within the next few months. However, I am learning something different this time. I am learning the importance of praying persistently until the answer itself has come or until I have received the assurance that it will come. I am also learning to pray with belief that my prayer will be answered. This is what faith is all about.
"Have faith that whatever you ask for in prayer is already granted you, and you will find that it will be" (Mark 11:24)
More and more, as we live the prayer life, shall we come to experience and recognize this God-given assurance, and know when to rest quietly in it, or when to continue our petitioning until we receive it. --The Practice of Prayer
The plan to fix my face started back in March. It has been another long road for me to travel and I have had to be patient and wait on God for the right time to come. After much time spent meeting with several different doctors I finally have a team of specialists that have experience with facial and oral reconstruction in someone who has radiated bone and skin. The surgery I will undergo will be risky...I soon discovered this as I was turned down by several doctors who avoided working on patients like me. It has been a long process, but I now see an end in sight and feel like there is a solution that does have its risks, but can be done. I met with an Oral and Maxillofacial Surgeon this week who will be doing the surgery along with my Surgical Oncologist. Over the next few months, he will be deliberating with specialists around the world, performing a simulated surgery and mapping out the best way to fix my face with as little risk as possible.
As of now, the plan is to reposition the transplanted bone in my face so that it is not so prominent and lower to accommodate future teeth implants to replace the teeth that were and will be extracted. In addition, a plate will be placed underneath my eye to raise it up and fill in the space that was once occupied by the bone I lost during my maxillectomy and later by the infection. After healing for 3-4 months, additional surgeries will be required to tweak anything that does not look right and implants will be placed 6-12 months down the road. The risks involve infection, rejection of the plate and skin breakdown. The surgeon feels the risks are low, and all precautions will be taken to avoid what happened to me in the past. When I asked the surgeon if this was his face, what would he do...he said he would do it with no hesitation.
Up until now, it has been a wonderful year filled with NOTHING but school homework, driving my kids to and from sports or activities, boating and swimming up at the cabin and spending time with family and friends. There is happiness in our house again. Plans, activities and vacations are made with no hesitations. I am able to RSVP to invitations with a confident YES I WILL BE THERE! Life has been normal and this normalcy was much needed to gear up for another year that may be challenging for me and my family. It has been wonderful to experience normalcy again, but I still don't feel quite like myself. I am trying to figure this out…could it be that although I have recovered physically, I haven't recovered mentally or emotionally from battling cancer? Or could it be because I am living with a face that makes me feel uncomfortable in my own skin and insecure when I am around others? Whatever it is, it isn't allowing me to feel complete peace. Ultimately, I sense my journey hasn't quite ended yet.
My next MRI will be in early December. Should this next MRI be clean, it will be two years that I have been cancer free. My surgeon said this will be a huge milestone in my remission. He rarely, if ever, sees this type of cancer return after two years. I am clinging to this hope.
Today, I am praying not for my life as I did when diagnosed with cancer, but I am praying for the ability to have my face fixed in a way that I will no longer be embarrassed to go out in public or be ashamed of the way I look. I am doing my best to have persistent and believing prayers for the following:
-Wisdom for the doctors to make the best decisions on how to go about fixing my face
-Wisdom for myself to decided what is in my own best interest and the interest of my family
-Peace when the right decisions are made
-A positive outcome after surgery with no complications
-Quick healing
-Insurance coverage as much as possible
I was taking a break from blogging so that I may be able to move on in my life. But I did miss it, and feel the need to get my feelings and experiences written down again. It is somehow healing for me and it brings me courage to read the many messages left from my friends, family and people I have never met before. And if my blogging brings hope and healing to anyone out there reading, it gives purpose to my journey.
Much Love,
Sue
I am now finding myself relying on prayer once again as the long awaited surgeries to fix my face will be started within the next few months. However, I am learning something different this time. I am learning the importance of praying persistently until the answer itself has come or until I have received the assurance that it will come. I am also learning to pray with belief that my prayer will be answered. This is what faith is all about.
"Have faith that whatever you ask for in prayer is already granted you, and you will find that it will be" (Mark 11:24)
More and more, as we live the prayer life, shall we come to experience and recognize this God-given assurance, and know when to rest quietly in it, or when to continue our petitioning until we receive it. --The Practice of Prayer
The plan to fix my face started back in March. It has been another long road for me to travel and I have had to be patient and wait on God for the right time to come. After much time spent meeting with several different doctors I finally have a team of specialists that have experience with facial and oral reconstruction in someone who has radiated bone and skin. The surgery I will undergo will be risky...I soon discovered this as I was turned down by several doctors who avoided working on patients like me. It has been a long process, but I now see an end in sight and feel like there is a solution that does have its risks, but can be done. I met with an Oral and Maxillofacial Surgeon this week who will be doing the surgery along with my Surgical Oncologist. Over the next few months, he will be deliberating with specialists around the world, performing a simulated surgery and mapping out the best way to fix my face with as little risk as possible.
As of now, the plan is to reposition the transplanted bone in my face so that it is not so prominent and lower to accommodate future teeth implants to replace the teeth that were and will be extracted. In addition, a plate will be placed underneath my eye to raise it up and fill in the space that was once occupied by the bone I lost during my maxillectomy and later by the infection. After healing for 3-4 months, additional surgeries will be required to tweak anything that does not look right and implants will be placed 6-12 months down the road. The risks involve infection, rejection of the plate and skin breakdown. The surgeon feels the risks are low, and all precautions will be taken to avoid what happened to me in the past. When I asked the surgeon if this was his face, what would he do...he said he would do it with no hesitation.
Up until now, it has been a wonderful year filled with NOTHING but school homework, driving my kids to and from sports or activities, boating and swimming up at the cabin and spending time with family and friends. There is happiness in our house again. Plans, activities and vacations are made with no hesitations. I am able to RSVP to invitations with a confident YES I WILL BE THERE! Life has been normal and this normalcy was much needed to gear up for another year that may be challenging for me and my family. It has been wonderful to experience normalcy again, but I still don't feel quite like myself. I am trying to figure this out…could it be that although I have recovered physically, I haven't recovered mentally or emotionally from battling cancer? Or could it be because I am living with a face that makes me feel uncomfortable in my own skin and insecure when I am around others? Whatever it is, it isn't allowing me to feel complete peace. Ultimately, I sense my journey hasn't quite ended yet.
My next MRI will be in early December. Should this next MRI be clean, it will be two years that I have been cancer free. My surgeon said this will be a huge milestone in my remission. He rarely, if ever, sees this type of cancer return after two years. I am clinging to this hope.
Today, I am praying not for my life as I did when diagnosed with cancer, but I am praying for the ability to have my face fixed in a way that I will no longer be embarrassed to go out in public or be ashamed of the way I look. I am doing my best to have persistent and believing prayers for the following:
-Wisdom for the doctors to make the best decisions on how to go about fixing my face
-Wisdom for myself to decided what is in my own best interest and the interest of my family
-Peace when the right decisions are made
-A positive outcome after surgery with no complications
-Quick healing
-Insurance coverage as much as possible
I was taking a break from blogging so that I may be able to move on in my life. But I did miss it, and feel the need to get my feelings and experiences written down again. It is somehow healing for me and it brings me courage to read the many messages left from my friends, family and people I have never met before. And if my blogging brings hope and healing to anyone out there reading, it gives purpose to my journey.
Much Love,
Sue
Sunday, May 15, 2011
Change of seasons
Last Saturday, I hosted a Farmers Market Breakfast for the ladies in my neighborhood. I held this breakfast a few years ago with the anticipation of making it an annual event. Unfortunately, I was a diagnosed with cancer and unable to host the event for a few years. This year's breakfast was more meaningful to me as it gave me the opportunity to honor all the wonderful friends in the neighborhood that supported me with prayers, gifts and meals throughout my battle with cancer. It was very emotional for me to let them all know how much each one of them touched my life. I was so thankful for the opportunity.
After breakfast, we braved the cold, rainy and windy weather and headed downtown to the Minneapolis Farmers Market for flowers, herbs and other goodies the market has to offer. We didn't stay as long as we would have if the weather was a little nicer, however it was enough time to purchase some flowers for one of my planters that sits outside of my front door. It is so wonderful to see flowers again along with the green grass and leaves on trees. I am enjoying watching the birds make nests under our deck again and the new goslings following their mother around on the pond. I have watched closely to see if the Blue Birds will come back but so far they are no where to be found. I think they have chosen to make their nests elsewhere. I am so ready for Summer to begin. This will be the first Summer in a long time that I will be able to enjoy without worry, surgeries or health issues.
Lately, I have been going to a lot of appointments with the doctors that will fix my teeth and hopefully fix my face. The appointments will continue until the doctors come to a safe solution for fixing my face. However, I have decided to avoid any surgeries until Fall so that I can enjoy my Summer.
At the end of April, I turned 40 years old. I had high hopes of celebrating this new chapter in my life. Unfortunately, due to a strain of strep that hit my family hard, I was hospitalized for one week battling cellulitis in my face. It was caused by the strep infection and it attacked the entire area of my face that was radiated. My face was extremely swollen, red and painful. I was placed on IV antibiotics and thankfully by the time I went home, my face was back to normal. I was released from the hospital the day of my birthday and because I was so exhausted from the lack of sleep during my stay I went straight to bed. Not exactly how I wanted to spend my 40th birthday. I can't remember the last time I celebrated a birthday not in the hospital.
Jason and I decided to celebrate all of the missed birthdays and anniversaries over the past few years, by going on a vacation just the two of us. I am so excited to spend some quality one on one time with Jason. We will be spending it at a beautiful resort where we can just relax and recuperate from all that we have been through over the past couple of years.
I am still enjoying a quiet and uneventful life. I have been spending a lot of time thinking about what I want to do with the rest of my life. Surviving cancer and turning 40 has caused me to think hard about my future and what God's plan is for my life. I have yet to come to a conclusion on what this plan is, but I am excited about what God has in store for me. My next MRI is in June. I am hoping and praying for more good news.
I will update you when I find out the results of my MRI. Enjoy the beautiful weather and the change of seasons!
Love,
Sue
After breakfast, we braved the cold, rainy and windy weather and headed downtown to the Minneapolis Farmers Market for flowers, herbs and other goodies the market has to offer. We didn't stay as long as we would have if the weather was a little nicer, however it was enough time to purchase some flowers for one of my planters that sits outside of my front door. It is so wonderful to see flowers again along with the green grass and leaves on trees. I am enjoying watching the birds make nests under our deck again and the new goslings following their mother around on the pond. I have watched closely to see if the Blue Birds will come back but so far they are no where to be found. I think they have chosen to make their nests elsewhere. I am so ready for Summer to begin. This will be the first Summer in a long time that I will be able to enjoy without worry, surgeries or health issues.
Lately, I have been going to a lot of appointments with the doctors that will fix my teeth and hopefully fix my face. The appointments will continue until the doctors come to a safe solution for fixing my face. However, I have decided to avoid any surgeries until Fall so that I can enjoy my Summer.
At the end of April, I turned 40 years old. I had high hopes of celebrating this new chapter in my life. Unfortunately, due to a strain of strep that hit my family hard, I was hospitalized for one week battling cellulitis in my face. It was caused by the strep infection and it attacked the entire area of my face that was radiated. My face was extremely swollen, red and painful. I was placed on IV antibiotics and thankfully by the time I went home, my face was back to normal. I was released from the hospital the day of my birthday and because I was so exhausted from the lack of sleep during my stay I went straight to bed. Not exactly how I wanted to spend my 40th birthday. I can't remember the last time I celebrated a birthday not in the hospital.
Jason and I decided to celebrate all of the missed birthdays and anniversaries over the past few years, by going on a vacation just the two of us. I am so excited to spend some quality one on one time with Jason. We will be spending it at a beautiful resort where we can just relax and recuperate from all that we have been through over the past couple of years.
I am still enjoying a quiet and uneventful life. I have been spending a lot of time thinking about what I want to do with the rest of my life. Surviving cancer and turning 40 has caused me to think hard about my future and what God's plan is for my life. I have yet to come to a conclusion on what this plan is, but I am excited about what God has in store for me. My next MRI is in June. I am hoping and praying for more good news.
I will update you when I find out the results of my MRI. Enjoy the beautiful weather and the change of seasons!
Love,
Sue
Friday, March 25, 2011
A New Beginning
We have just entered the first week of Spring. However in Minnesota there are no signs of a season change as there is still snow on the ground and temperatures are in the 30's. Yesterday, I posted on my Facebook page a fact stating that there were a lot of crabby people in Minnesota. Many of my Facebook friends confessed that they were one of them. The recent snow storm was the last straw for the many residents of Minnesota aching for warmer weather. We had a brief taste of Spring before yet another snow storm hit this week. Temperatures were in the 50's and the snow was just about gone. People had emerged out of their homes and were outside enjoying the weather. Unfortunately this gift was quickly taken away from us. Strangely, I haven't been bothered by the weather. Simple reasons as high doses of Vitamin D or a recent vacation to Florida may explain my indifference to the snow on the ground. However, I am guessing it is because the weather has become low on my priority list of things to get hot and bothered about. It is amazing how this list has changed over the past couple of years.
The best medicine for the Minnesota winter blues is a warm and sunny vacation. I took this medicine in February and Jason, the girls and I headed down south. The prescription: a Disney Cruise to the Bahamas and then a visit with my parents in Orlando. It was a much needed vacation for my family after all we have been through. The week before we left I was convinced that something was going to prevent us from going. I carried around hand sanitizer and sterilized my family's hands until they were raw. I avoided any activity that would cause another hole in my face. No one or nothing was going to stop us from going on our trip. Needless to say the cruise was amazing, but what vacation by Disney isn't? We set sail on the new Disney ship called the Dream. From the second we set sail, our time was filled with fun and laughter. My low stamina and anxiety went out the porthole in our stateroom and we embraced every opportunity that was given to us on the ship by Disney. I felt as if my family had reconnected and we were back to normal once again. It was such a fabulous trip that we booked another cruise for February 2012 even before we got off the ship. A monumental step for us as a certain member of our family obsesses with spending hours researching every price point or option before booking a vacation. A step that signified how much fun we had on the cruise.
Life in the Karrmann household is back to normal. We are in a routine again…a routine I longed for while going through treatment. Jason and the girls have moved forward and are focusing again on work and school. However, it is taking me a little longer to feel content, confident and fearless. I spend a lot of time thinking about what has happened and what is to come in the future. Being consumed by a disease for two years has caused me to feel lost and in the midst of searching for my purpose in life. Feelings that have been easily identified by my Oncology nurses and acknowledged as standard protocol for many cancer survivors. Now what do I do with my life? I am ready for God to reveal his next plan for me…whatever it may be. Despite all of the pain and suffering, I never felt closer to God throughout my battle with cancer. It took very little effort to feel his presence and his love during a time I needed it most. Now I feel as if God is quiet and sitting back watching how I approach my life and my faith. I think he wants me to need him now as much as I needed him back them….to seek his will and to wholeheartedly trust him no matter what the circumstances.
I spend most of my days undoing what has been done since I was out of commission. I have cleared out almost every corner in this household items that have been stock piling over the past couple of years in closets, kitchen cabinets and drawers. Our house has become a weekly stop for charity pickup. Our family has never been more organized…notice the calendar on our refrigerator listing all doctor appointments, activities or engagements that each of us has for months to come. I am volunteering at the girls' school, spending time with friends, and reading lots of books. But most of all, I am enjoying having the ability to choose how I want to spend my time. A choice that I did not have for quite sometime. I have to confess I have been a bit selfish with my time and may have been known by my family to throw a little tantrum here and there if I don't get to do what I want to do and when I want to do it. But I am getting better.
In addition to searching for the meaning of life after cancer, I will now begin to search for the meaning of life after turning 40. Almost every day, I see an old high school friend on Facebook share their feelings about turning the big 4-0. It will be my turn in April. A lot of women my age would wish for a facelift for their 40th birthday. My birthday wish this year will be for a "facedown". I am waiting for the date, most likely in April, when my surgeon will be shaving down the transplanted bone in my face and the broken bone in the orbit of my eye. It took me awhile to be emotionally ready for another surgery. But I think it is safe to say I am more than ready to be able to blend in with the crowds and to not be stared at by those I pass by. Friends and family that look at the photos taken during the holidays and on our Dream vacation will notice I am the picture taker and not the picturee. When I see pictures of myself I just want to break down and cry. It has been hard for me to accept the way I look and to be comfortable around people that don't know me or know what I have been through. In addition to my "facedown" I will also get implants to replace the teeth that were removed during my maxillectomy. I know my face will never be the same, but I have hopes that these next surgeries will help me to feel more comfortable in my own skin.
Overall, life is good. No, life is great! Yes, I could do without 3rd grade homework and sister rivalry…and probably winter. But I am enjoying my life being cancer free. I will continue to keep you updated as my surgeries quickly approach. My next MRI will be in June, and I hope I will be able to continue writing this blog from a cancer survivor's point of view. Thank you all for your continued prayers. Much love, Sue.
Blessings
By Laura Story
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home,
It's not our home
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
The best medicine for the Minnesota winter blues is a warm and sunny vacation. I took this medicine in February and Jason, the girls and I headed down south. The prescription: a Disney Cruise to the Bahamas and then a visit with my parents in Orlando. It was a much needed vacation for my family after all we have been through. The week before we left I was convinced that something was going to prevent us from going. I carried around hand sanitizer and sterilized my family's hands until they were raw. I avoided any activity that would cause another hole in my face. No one or nothing was going to stop us from going on our trip. Needless to say the cruise was amazing, but what vacation by Disney isn't? We set sail on the new Disney ship called the Dream. From the second we set sail, our time was filled with fun and laughter. My low stamina and anxiety went out the porthole in our stateroom and we embraced every opportunity that was given to us on the ship by Disney. I felt as if my family had reconnected and we were back to normal once again. It was such a fabulous trip that we booked another cruise for February 2012 even before we got off the ship. A monumental step for us as a certain member of our family obsesses with spending hours researching every price point or option before booking a vacation. A step that signified how much fun we had on the cruise.
Life in the Karrmann household is back to normal. We are in a routine again…a routine I longed for while going through treatment. Jason and the girls have moved forward and are focusing again on work and school. However, it is taking me a little longer to feel content, confident and fearless. I spend a lot of time thinking about what has happened and what is to come in the future. Being consumed by a disease for two years has caused me to feel lost and in the midst of searching for my purpose in life. Feelings that have been easily identified by my Oncology nurses and acknowledged as standard protocol for many cancer survivors. Now what do I do with my life? I am ready for God to reveal his next plan for me…whatever it may be. Despite all of the pain and suffering, I never felt closer to God throughout my battle with cancer. It took very little effort to feel his presence and his love during a time I needed it most. Now I feel as if God is quiet and sitting back watching how I approach my life and my faith. I think he wants me to need him now as much as I needed him back them….to seek his will and to wholeheartedly trust him no matter what the circumstances.
I spend most of my days undoing what has been done since I was out of commission. I have cleared out almost every corner in this household items that have been stock piling over the past couple of years in closets, kitchen cabinets and drawers. Our house has become a weekly stop for charity pickup. Our family has never been more organized…notice the calendar on our refrigerator listing all doctor appointments, activities or engagements that each of us has for months to come. I am volunteering at the girls' school, spending time with friends, and reading lots of books. But most of all, I am enjoying having the ability to choose how I want to spend my time. A choice that I did not have for quite sometime. I have to confess I have been a bit selfish with my time and may have been known by my family to throw a little tantrum here and there if I don't get to do what I want to do and when I want to do it. But I am getting better.
In addition to searching for the meaning of life after cancer, I will now begin to search for the meaning of life after turning 40. Almost every day, I see an old high school friend on Facebook share their feelings about turning the big 4-0. It will be my turn in April. A lot of women my age would wish for a facelift for their 40th birthday. My birthday wish this year will be for a "facedown". I am waiting for the date, most likely in April, when my surgeon will be shaving down the transplanted bone in my face and the broken bone in the orbit of my eye. It took me awhile to be emotionally ready for another surgery. But I think it is safe to say I am more than ready to be able to blend in with the crowds and to not be stared at by those I pass by. Friends and family that look at the photos taken during the holidays and on our Dream vacation will notice I am the picture taker and not the picturee. When I see pictures of myself I just want to break down and cry. It has been hard for me to accept the way I look and to be comfortable around people that don't know me or know what I have been through. In addition to my "facedown" I will also get implants to replace the teeth that were removed during my maxillectomy. I know my face will never be the same, but I have hopes that these next surgeries will help me to feel more comfortable in my own skin.
Overall, life is good. No, life is great! Yes, I could do without 3rd grade homework and sister rivalry…and probably winter. But I am enjoying my life being cancer free. I will continue to keep you updated as my surgeries quickly approach. My next MRI will be in June, and I hope I will be able to continue writing this blog from a cancer survivor's point of view. Thank you all for your continued prayers. Much love, Sue.
Blessings
By Laura Story
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home,
It's not our home
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise
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