January 19 - A date to remember

I was lying in my bed longing for answers. I just finished crying my heart out to God asking him WHY? Up until now I prayed fervently for healing...for the hole to close. But my prayers were not being answered. I was beginning to question the purpose of prayer. If prayers don't get answered...why even bother? I felt like giving up on the one thing that has carried me through this long journey.

I looked over on my bedside table and as I was looking at the book of devotions I had read throughout our journey with Mackenzie and my battle with cancer, the date JANUARY 19 came to mind. I picked up the book and immediately turned to the devotion for January 19. It was clearly a message that God wanted me to read...

"Then Jesus told his disciples...that they should always pray and not give up." Luke 18:1

"Prayer that uses previously unanswered prayers as an excuse for laziness has already ceased to be a prayer of faith. To someone who prays in faith, unanswered prayers are simply the evidence that the answer is that much closer." Streams in the Desert by L.B. Cowman

I am still extremely frustrated and have a lot of anxiety of things to come. Prayer is the one and only thing I can do take matters into my own hands and do something about my situation. As a control freak, I need prayer especially when I cannot control my circumstances. And when I am done praying, it is the ONLY time I feel truly at peace. It allows me to pour my heart out to God and to get my feelings off my chest. Prayer is the one and only way to get help from the one who is in control. This message was clearly meant for me on the day that I read it. It pushed me to re-evaluate my feelings on the effectiveness of my own prayers.

Surgery has been scheduled for Friday, October 1st. No more hyperbaric treatments until surgery is completed. For this I am so thankful. I needed a break. The goal of the surgery on Friday is to remove my flap and stitch up the hole that has not closed. Before the hole is closed, the bone will need to be shaved down. This will be extremely risky and may cause my bone to break. This is my biggest fear. If the bone breaks, there will be more surgeries to come. If it does not break and the surgery is a success, I may finally be at the end of my journey.

Please pray for my upcoming surgery. Pray for wisdom for the surgeon. Pray my bone will be strong and not break. Please continue to pray for the infection in the bone. Pray the hole will be able to be stitched closed. And pray for strength and peace for me as I am anticipating the upcoming surgery.

Thank you to those of you that have been sending wonderful gifts, cards and messages to help keep me going this past week. They meant so much to me and uplifted my spirits.

With love,
Sue

I FEEL

I am sitting at my laptop right now trying to find words to convey how I feel. I think I have erased the first sentence I typed several times now. All I know is that any hope for a miracle is quickly fading.

On Friday, I will be reaching 30 treatments at the hyperbaric chamber. By now, there should be some signs of healing, unfortunately there are none. The hole is still there and now my eyelid is starting to fall behind the bone that is exposed in the hole. This causes my eye to not close completely when I blink or when I sleep so I am experiencing a lot of dryness and discomfort. I can't leave home without lubricating eye drops. In order for the hole on my face to close, the bone needs to be burred down, however this does not come without risk. The bone is already thin and fragile as a result of my maxillactomy. So there is a chance if they burr the bone down it will break.

Next week I will be scheduled for surgery. I will finally have the flap removed and the surgeon will make an attempt to burr down the bone. If he does so successfully without the bone breaking, he will then stitch the hole shut which should also correct the drooping of my eyelid. Should the bone break, it will be removed through my nose. Then the surgeons will watch carefully to see if my face with start to cave in or if my eyelid will droop down even more. If this happens, I will be required to have an extensive surgery again to replace the bone under my eyelid with the bone from wrist and the radiated skin completely removed from my face and replaced with skin from my leg. After surgery, I will have to complete 10 more hyperbaric treatments.

I feel.....SICK AND TIRED OF ALL OF THIS!!!!! I FEEL SO MAD!!!!!! I FEEL SO LET DOWN!!! I FEEL TIRED!!! I NEED A BREAK!!! I NEED THIS TO END!!!!

Sue

Stuck

Have you ever felt like you have prayed so much that you can't pray anymore? I have been feeling like this lately. I have spent almost every moment of every day spending time in prayer....praying and pleading for God to heal my face. The hole in my face. I am beginning to feel frustrated and depleted. I am tired of the stares. I am tired of going to hyperbaric treatment. I am tired of waiting and watching for some sign of healing, seeing no change and having fear of another hole starting. There have been no signs of the hole closing. Panic is starting to set in. These next couple of weeks are crucial. I have come to the point in my hyperbaric treatment when things should start to heal. Should the hole not close or show signs of closing in the next couple of weeks, I am facing yet another surgery. More disfigurement to my face.

What I wouldn't give to be able to move on in my life. To leave this all behind. I feel as if life continues to go on all around me and yet I am stuck in the same place. Trying to heal, going to doctor appointments and having surgery after surgery. School has started for the girls and the change of seasons has begun. Yet I am finding myself stuck and it feels like nothing has changed since this time last year.

So my purpose for my blog today is to ask for your prayers. Please pray that this hole will close and that no more surgery will be required. Pray that I will soon see an end in sight. A wise person told me once that when you feel like you can pray no more to rest in peace knowing that others are praying on your behalf. This has helped me throughout my battle with cancer and will help me today knowing there are many of you out there still praying for me.

My hope is that the next time I update my blog I will be able to share with you good news of healing!

Blessings to you all,
Sue

Inside the Chamber

There are about 5 of us that undergo hyperbaric treatment at the same time. One of my chamber companions is Bill. Bill has severe diabetes. He suffers from foot and leg ulcers, one of the many side effects of extreme diabetes. He has already lost one leg due to the ulcers and is undergoing hyperbaric treatment to treat the ulcers in his other leg. He has been in the hospital for the past few months, and has battled this illness for years. Every day I am greeted by Bill with a smile and a friendly hello. He is always positive and is rarely in a bad mood despite being confined to a wheelchair and a hospital room every day. One thing I have learned about Bill is that his faith remains steady despite his suffering. Today, I arrived at the hyperbaric chamber early so I sat in the waiting room. Bill was also in the waiting room as he was just dropped off by the transport services that take him to the chamber from the hospital. Another chamber companion of ours was also in the waiting room and he was intently listening to Bill talking about the point in his life where he had to completely give everything to God. Soon the other patient was called into the back to be examined by the doctor, but before he left the room, he put his hand on Bill's shoulder to let him know how much he needed to hear Bill's words of encouragement. Soon, Bill's attention was soon directed to me and he began to tell me a story...one that I have been carrying with me throughout the day. Here is the story:

There was a group of men carrying their crosses, plodding along and dragging crosses on the ground after them. One of the men suddenly stood up from his trudging and asked, "Lord, can I make my cross smaller?" Despite God's silence, the man decided to hew off the end of his cross with a little hacksaw. Throughout his journey, he continued to ask God to make his cross even smaller. After the cross had been whittled down to a manageable size, the man picked up his modified cross and fairly skipped along with it, praising God saying "Thank you! This is so much better!" The group of men reached a canyon. Everybody laid their crosses over the crevasse and walked upon the crossbeam to reach over the other side. The man with the smaller cross did the same. Alas! It was too short. He couldn't make it across and watched the others move on without him.

After Bill finished telling me this story, the chamber staff came into wheel Bill to the back to prepare him for treatment. As he was wheeling in, he was telling me that we need to be patient while carrying our heavy loads and to accept the load that God has given us. I was left to ponder the meaning of this story and I felt like I was just given a lesson I needed to learn. There have been many times I have asked God to help take away the cross I carried and continue carry as a result of battling cancer. Bill's story gave me a completely different point of view of my suffering: carrying my cross, the cross God has given me, is something I should do with pride and purpose. My cross will help me to someday cross an seemingly impossible obstacle or to help me get where I need to go. My cross will also allow me to help others carrying their own cross that aren't quite long enough to cross over their own obstacles.

This has been my experience in the hyperbaric chamber. I have encountered some amazing people, all with a strong faith and positive attitude despite their own sufferings. I feel like I have been put into that chamber for a reason, and at the right time. I am so blessed to have met my chamber companions.

Treatment has been going well. It is too soon to tell if the treatments will work, but my doctor is confident the hole will close. At 30 treatments, I will FINALLY be able to have the flap of skin across my face removed and I will then finish the remaining 10 treatments. If all goes well, and the hole closes, I should be done with treatments and surgery and be able to move on with life.

Please continue to pray that hole will close as well as this chapter in my life. It will be a glorious day when I can start looking towards the future and leave this all behind.

Luke 9:23-26 (The Message) "Then he told them what they could expect for themselves: "Anyone who intends to come with me has to let me lead. You're not in the driver's seat - I am. Don't run from suffering; embrace it. Follow me and I'll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self. What good would it be to get everything you want and lose you, the real you?

Warriors

(Please watch movie clip above before reading. It is a clip from a movie titled "Letters to God". The main character, Tyler, has a rare form of cancer and may not live much longer. He and his best friend, Sam, are at her grandfather’s house, and her grandfather is trying to give Tyler some much needed encouragement.)

I finally mustard up the courage to watch a movie about cancer. For me, this was not an easy task. Up until now, I have avoided any book, movie or TV show that approached the subject of cancer. I had to stop watching some of my favorite TV shows like Grey's Anatomy or Brothers & Sisters because the subject matter included cancer. But I came across this movie on Netflix titled "Letters to God" and I felt compelled to watch it. Inspired by a true story, the movie is about a young boy fighting cancer who writes letters to God, touching lives in his neighborhood and community and inspiring hope in everyone he comes in contact. He learns that God can receive Glory by how he dealt with his suffering. I have been thinking a lot about this movie for quite sometime. Especially about the clip I included above. I was nearly in tears as I watched the boy being told by a neighborhood friend that he was chosen by God to receive the honor of being chosen as one of God's warriors. This boy chose to proudly accept the role as God's warrior and as a result his life's story of battling cancer he impacted many of those in his community.

I have decided that anyone faced with an illness or difficulty in life has been chosen by God to be his warrior. After being diagnosed with cancer, I have become more and more aware of how many people in this world are hurting or battling an illness. Never before have I had this awareness. I lived in a bubble and did not pay attention to the many people in my life, stranger or no stranger, that were facing cancer, health issues, financial difficulty or were part of a broken family. As I have become more and more aware of these people in my life, I am in awe of the strength, faith and positive attitudes that they demonstrate in the midst of their suffering. These people are warriors, chosen by God. Their suffering has become a testimony to me and to many others of the power of God's healing and grace. After watching the movie, I too considered myself one of God's warriors and at times felt that the reason for my cancer was to reveal God's truth and glory. I am not sure of how good of a job I did or am doing, but if I impacted at least one life through this journey, it was worth it. To this day, I am still amazed at the strength and resilience of the human spirit including my own. I continue to meet survivors, or warriors, that inspire me to have faith and ride forth victoriously in truth, humility and righteousness. From this day on, I am going to open myself to learning from other warriors and will not hesitate to offer a helping hand in any way I can.

My days are now filled with hyperbaric treatments. I wish I could say that the monotony of going to treatment every day is nice for a change. But I am already for these treatments to be done with. I have about 30 more treatments to go. The new flap that was taken from my cheek is healing really well. However, I still have the hole that doesn't seem to want to heal. My doctor still hopes that with hyperbaric treatment it will close on its own. It takes about 20 treatments before a patients starts to see results. I am happy the hole has not gotten any bigger.

Please continue to pray for healing...especially for the hole that needs to close!

Much love,
Sue

Angels

This past week has been CRAZY! The days have involved visiting new doctors and preparing for hyperbaric treatment. In addition, Mackenzie is having surgery on Friday so between her and me we are keeping the calendar filled. My first appointment was with the Infectious Disease doctor. It was at this appointment that I started to get answers and solutions as to what is going on with my skin. I learned that my bone had a staph and fungal infection in it. A possible cause of the skin breakdown on my face and the reason there was a chip in my bone. The doctor placed me on a course of antibiotics for 6 weeks and will be following me closely to ensure the infections go away. This discovery started to give me some much needed hope and a change in course of action that seemed to be better than the course I was on.

The next day I visited with Dr. Adkinson, the Medical Director of Hyberbaric Treatment at Hennepin County Medical Center, which is the location of the hyperbaric chamber. It was at this appointment that we learned about the positive results after going through hyperbaric treatment, especially on radiated skin. Many of you have been asking about the hyperbaric treatment so to better describe the treatment, here is an article that was given to me on the principle of hyperbaric treatment. The author interviewed my doctor and featured the Department of Hyperbaric Treatment at the Hennepin County Medical Center:

The principle behind hyperbaric medicine is simple. Treatment provides one common benefit for all patients: It loads up blood with more oxygen that patients can get in any other setting. "Hemoglobin is fully loaded up by breathing 100% oxygen at normal pressure," Adkinson explains. "Hyperbaric oxygen treatment dissolves additional oxygen in blood plasma. At 3 atmospheres of pressure on 100% oxygen, the partial pressure of oxygen is about 2,300 millimeters of mercury. This allows oxygen to actually diffuse from the capillaries into tissues rather than being released by hemoglobin. Even if you don't have any hemoglobin, hyperbaric treatment will provide oxygen to tissue." One area where hyperbaric treatment makes a significant difference is in preparing for surgical flaps and grafts or saving flaps and grafts, in an irradiated field. Early treatment is also critical when a graft or flap is not healing properly. "Whether or not the tissue is irradiated and whether or not it's vascularized, the sooner we can begin treatment, the more helpful we can be," Adkinson stresses. "In order to salvage a graft or flap, we need to treat when it looks like it's getting into trouble and not after it's already necrosing."

Today, I had my first treatment. The best way to describe the chamber is that it looks like a nuclear fallout shelter or a large submarine. I almost felt like I was getting on the 20,000 Leagues Under The Sea ride at DisneyWorld. There are four chairs inside so there are other patients undergoing treatment at the same time. A nurse or tech is also inside the chamber during treatment to monitor our vitals and assist in case of an emergency. Upon looking around the room you see lots of hoses, fire extinguishers and valves. Once treatment begins, the first 10 minutes are called "going down" similar to being in a submarine. This is when the chamber is put under pressure and the room gets extremely warm. My chair is located by one of the gauges so I was able to watch the temperature reach over 90 degrees while going down. This was the time that all of the pain I experienced while they placed tubes in my ears was forgotten. I had no problems with equalizing the pressure in my ears and had no discomfort so I was thankful. Once going down is finished, I am placed inside a sealed "hood" which is attached to a hose sending oxygen into the hood. The treatment takes about 1 hour and 50 minutes total and during this time I need to take two 5 minute breaks from the oxygen hood to prevent seizures. Once treatment is done, going back up is a lot quicker and the room gets extremely cool. Fortunately, we are able to read or play cards during treatment to help pass the time. Below is a picture of the chamber and one of the patients is inside a hood similar to the one I wear during treatment.

I met a man today that was inside the hyperbaric chamber at the same time. The first time I saw him, I knew immediately that he had the same kind of cancer I had and has gone through a similar experience. After seeing his face, I realized how fortunate I was. My defects were not as noticeable and as severe as the ones he had in his face. It had been a year since his maxillectomy and he was still battling holes in his skin. He was a sweet and dear old man. We had a chance to speak to one another after treatment. We had a common bond and understanding between one another. When our conversation was done he said to me, "We are survivors." After a stressful and anxiety filled day, he made my day a little brighter.

This has been a common theme for me this past week. Not only has the week been filled with appointment after appointment, but it has also been filled with encounters with cancer survivors like this old man. The other day I was at Pier One, a store I have been frequently visiting as I am attempting to decorate our newly finished basement. I was at the checkout counter getting ready to pay for some pillows I had purchased to put on the spare bedroom bed. One of the workers looked at my face and asked what happened. I quickly explained (I have an explanation I typically use for situations like this to avoid going into much detail) about my cancer and surgeries. Soon after she began telling me about her own battle with Melanoma over 30 years ago. She was 22 when diagnosed and it was so advanced she was given only 6 months to live. Her Dad bought her a ticket to travel around the world so that she could live the rest of her life to its fullest. Six months turned into 2 years into 30 years and she survived. She defeated the odds that were given to her many years ago. She credited it to having a positive attitude. Hearing her success story gave me hope. While we were exchanging stories, the customer that was standing next to me was intently listening to our conversation. She was amazed at the battles we had fought and empathized with my current situation. She immediately asked what my name was and with sincerity said to my face, "I am going to pray for you." I was so touched by her compassion and I simply said "thank you." But what I really wanted to do was give her a big hug.

As I look back over the past year, I have had many encounters with cancer survivors. Each and every one of them have been very special to me and much needed at that moment in time. I will never forget the woman at my oncology clinic that saw me sitting in a wheel chair deathly sick and barely able to sit up as a result of chemo and radiation. She came up to me and looked me in the eyes and said "You WILL get through this". And I am so grateful for the neighbor God put into my life that went through her own battle with cancer years ago. She helped me to believe. I valued the messages that a fellow cancer survivor wrote on my blog faithfully validating my feelings and frustrations. And most of all, I am so thankful for a Dad that had battled cancer himself years ago and was able to be there for me in ways no one else could. These cancer survivors were angels God put into my life to help me get through this experience. I hope to some day be an angel for someone else, whether it be a friend, family, or stranger at the store, battling cancer.

Please continue to pray. Pray the infection will go away. Pray the hyperbaric treatments will work. Pray no more surgeries will be required and that my skin will heal! Pray for strength to get through these next 6-7 weeks. They will be tough on me and my family.

Blessings to you all!

Sue

Fix Me

What I wouldn't give to be fixed...I feel so broken, unrepairable. I feel stuck in reverse...especially when it comes to my face. The surgeons are doing all they can to fix me. But there is only so much they can do.

Another surgery done and over with...one of many attempts to fix my face. I wish I could tell you this surgery was one step closer towards healing. Unfortunately, during surgery the surgeon made a discovery...the bone in my face had a chip in it. It was alarming enough for him to pull in my surgical oncologist to take a look. The bone fragment is either from cancer, an infection or simply from radiation. We are still waiting for the biopsy results. While this may be answer as to why the skin on my face continue to break open, I am feeling very discouraged and overwhelmed knowing I have a long way to go before this problem is fixed. In the meantime, next week I am meeting with an Infectious Disease doctor to find the best way to treat the bone if it is infected. I will also start undergoing hyperbaric oxygen therapy treatments. Hyperbaric Oxygen Therapy (HBOT) is the breathing of high concentrations of oxygen in an environment with greater than normal atmospheric pressure. The effect of this is a greater amount of oxygen dissolved in the blood than can be achieved normally. This increased amount of dissolved oxygen has a variety of effects that result in an improved ability to heal. We have discussed this option at length for the past few months. Finding the chip in my bone helped the surgeons come to the conclusion that now was the time to start the hyperbaric oxygen therapy treatments. In order to be prepared for the HBOT treatments, I had to have tubes put in my ears. I will not be able to relieve the pressure in my ears that normally takes place during the treatments as it may blow a hole in my face again. My surgeon put the tubes in during my post-op appointment on Friday. This was NOT a pleasant experience. I now understand why this is normally done while a patient is under anesthesia.
Please continue to pray for healing. Pray that this will be the last surgery. Pray that the hyperbaric treatments will work. Pray that whatever it is that is causing my bone to break down will be resolved. Pray that God will give my surgeons the solution to fix me.

Love,
Sue