Searching for Hope

Yesterday I met with my surgeon who will be performing the surgery on Friday. It was a difficult meeting for both me and my surgeon. We are both equally frustrated with my situation. During the meeting I was able to communicate, with many tears, the frustration, hurt and pain I have been experiencing these past few months. At the same time, he expressed how he wishes he could give me what I want, but he too has limits on what he can do to help me heal. Most importantly, I wanted him to know that I have lost hope and unfortunately we are at a point where he can give me very little. There are a lot of risks going into surgery on Friday. The biggest risk being the fragile bone in my face. My surgeon cannot guarantee what will happen when he burrs down the bone. And I did not sense a lot of confidence in his voice that it would not break. I am feeling very shaken and overwhelmed with anxiety. I so desperately need an end to my story. I am trying so hard to find it, but it just isn't there.

Since I have this week off of hyperbaric treatment, I have spent a lot of time desperately searching for hope. I have been looking for it in everything I do, everywhere I go and everyone I talk to. I am just not finding it. Throughout this journey I have always had hope...it was there through the chemo, through radiation and even through the big surgery. There were always positive results I could cling to knowing these treatments were working giving me much needed hope. This time is different. Nothing seems to be working. I am faced with disappointment after disappointment after each surgery and hyperbaric treatment. What I wouldn't give to have a few months before my next MRI free from worry, fear and surgeries. I would give anything to have time to live my life with all of this behind me.

My prayers this week are not only consumed with pleading for mercy and for healing but also pleas for hope and encouragement to get through this. Without hope, it is hard to feel at peace. I know it is out there and this week I am learning and trying really hard to be patient to wait for it.

"I will have reached the point of greatest strength once I have learned to wait for hope." George Matheson

Sue

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