Thursday, April 29, 2010

Better than a Hallelujah

Lord have mercy on me. Why another surgery? I can't do this anymore. It seems as if it will never end. My faith is exhausted. I have no more words. I don't know how or what to pray anymore. What are you trying to show me? What are you trying to teach me? Lord please show me the way. Please heal my fragile skin.

Better than a Hallelujah
by Amy Grant

God loves a lullaby
In a mothers tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkards cry,
The soldiers plea not to let him die
Better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.

The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Are better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah
Better than a church bell ringing,
Better than a choir singing out, singing out.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

Better than a church bell ringing
better than a choir singin' loud
singin' loud

Tuesday, April 27, 2010

There will be days like this Part 2

This is part two to my last blog. I had to share with you a couple of events that happened after I wrote it. Just a couple of more examples of God telling me to not give up hope and that he is always there.

A couple of hours after I wrote my blog, I was feeling really down. This is typical for me for the past couple of days. I am just having a hard time. I was watching TV as the girls were coloring at the kitchen table. All of a sudden, Kendall yelled, "Mommy, the blue bird is back!" I didn't believe her, but thought I should get up and look. And there it was, the male blue bird perched on our gazebo looking into our sliding glass door. I couldn't believe it. We were all so excited and watched to see if it would go into Kendall's birdhouse again. It just sat there for awhile and then flew off. After the death of that robin, the appearance of the blue bird could not have come at a better time. Unfortunately, the visit from the blue bird was short lived, and we have not seen it since. The next day we saw a couple of birds on our deck. They were beautiful birds with blue feathers, but they were not the same kind of blue bird that came to us a year ago and the day before. They were a kind of swallow. They have seemed to show an interest in Kendall's bird house and have been hanging out on our deck quite often. I am beginning to wonder if that visit from the blue bird and the appearance of the new birds was God reminding me of his faithfulness this past year, but that I need to move on and start thinking about the future and the newness it brings.

You can call me crazy when it comes to me and these birds. Yes, it may seem like I have lost my marbles and have nothing better to do with my time. But birds have always been very symbolic to my extended family in rough times. If you were to live with us for a long period of time, you would be amazed at what we see and how ironic the appearance of the birds are. They seem to come at just the right time when we are searching for hope and encouragement.

Later on in the day that I wrote my blog and saw the blue bird, I sat down and spent some time reading the new Bible Jason gave me for my birthday and my book titled Streams in the Desert. The passage I began reading was an answer to the many questions I wrote about in my blog. It was about the story in the Bible of Mary Magdalene and Mary sitting in the garden by the tomb grieving after Jesus had been buried. All they could see was that Christ was gone and not the triumph of the next two thousand years. What they regarded as the end of life was actually the preparation for coronation, for Christ remained silent that He might live again with tenfold power. The book goes on to explain that it is the same with us. Each of us sits "opposite of the tomb" in our own garden and initially says, "This tragedy is irreparable. I see no benefit in it and will take no comfort in it." And yet right in the midst of our deepest and worst adversities, our Christ is often just lying there, waiting to be resurrected. Where darkness seems the deepest, the most radiant light is set to emerge. And once the experience is complete, we find our garden is not disfigured by the tomb. This was it...the answer to my questions in my blog. My tomb is this past year and everything I have been through. It has been hard for me to look past it and see the good things that have happened and the good things to come as a result of my cancer....especially these past couple of days as I am feeling down and frustrated. God has been there this whole time and I know he has done amazing things for me this past year. I just need to work harder on not focusing so much on the bad and remember the good that came from it. I think I am just so tired of having to go through this..I have been pushed almost as far as I can go and am desperate for an end. But God continues to give me these reminders...birds and all...that help keep me afloat.

Please continue to pray for healing. My skin is so fragile due to the radiation. This makes healing difficult. I am experiencing some more skin breakdown due to incisions and surgery and we are holding our breath hoping it will heal and not require more surgical intervention. The only thing I can do is continue to apply as much Aquaphor as possible to promote skin cell growth. I think I am going to keep Aquaphor in business. Thank you all for the many birthday blessings, gifts and messages last week. Although my birthday was not what I wanted it to be, I experienced a lot of love from others on that day.

Enjoy the birds!

Love,
Sue

Saturday, April 24, 2010

There will be days like this

It happened very quickly...all that was left were feathers in a pile on our lawn...just beside the tree it had laid its nest in. It was the robin that laid its nest there last year. Poor thing had no chance. The hawk just swooped down and the robin was gone in just a few seconds. It made me sad as that robin was a gift from heaven during a difficult time last year. She brought hope to our family. We enjoyed watching the eggs hatch and the babies eventually leave the nest. Her return this year was exciting and meaningful. How quickly the meaning of that robin was taken away.

I am in a slump right now...feeling very sorry for myself. I am focusing too much on everything I have been through and wondering if it will ever end. I am desperately searching for the strength to get through this next period of waiting and healing. So hard to do when all I want to do is crawl in a hole and hide. I hate showing my face. I often wonder if this will be the last and final stretch or if there will be another hurdle waiting for me just around the corner. At times, it doesn't seem like this will ever end.

My immediate reaction to the death of the robin was that it was a bad sign. A bird that was so symbolic of good things to come was taken away. Or was the robin's death telling me to stop focusing on the past? Does its death mean it is time to look to the future and the hope it will bring? Do I need to start looking for hope in other things? It is easy to get really angry and frustrated when I dwell on all of the struggles I have been through. So maybe I just need to work harder on looking to the future even though it seems it is unattainable right now. Looking back does me no good. And as always, I need to continue looking up...and keep close to my heart the promise of better days.


When it's not always raining
there'll be days like this
When there's no one complaining
there'll be days like this
Everything falls into phase
like the flick of a switch
Well my momma told me
there'll be days like this

When you don't need to worry
there'll be days like this
When no one's in a hurry
there'll be days like this
When you don't get betrayed
by that old Judas kiss
Oh my momma told me
there'll be days like this

When you don't need an answer
there'll be days like this
When you don't meet a chancer
there'll be days like this
When all the parts of the puzzle
start to look like they fit
Then I must remember
there'll be days like this

When everyone is upfront
and they're not playing tricks
When you don't have no freeloaders
out to get their kicks in
When it's nobody's business
the way that you wanna live
I just have to remember
there'll be days like this

When no one steps on my dreams
there'll be days like this
When people understand what I mean
there'll be days like this
When you bring out the changes
of how everything is
Well my momma told me
there'll be days like this

Oh my momma told me
there'll be days like this
Well my momma told me
there'll be days like this
Oh my momma told me
there'll be days like this
Oh my momma told me
there'll be days like this

Thursday, April 22, 2010

It's complicated

One of these days I wish I could give you news that everything went as planned. Unfortunately, once again surgery was more complicated than anticipated. The hole in my face was too big to be repaired by the skin in between my eyebrows. So the skin had to come from my forehead. My face is not a pretty sight. I have an incision from my hairline all the way down to my nose. Some of the skin from my forehead and to be left on the top of my nose until the blood vessels start connecting to the forehead skin that was used to cover the hole in my face. This should take about 4-6 weeks then the excess skin will be removed and the rest of my face will be repaired. Yes....another surgery. I had to spend the night in the hospital as well.

These complications are extremely frustrating for me. But not as frustrating as knowing that plans need to be put on hold AGAIN. All of the fun things we were planning for May, including a family vacation, will need to be postponed. It is so hard when I felt we had finally reached the end of the tunnel only to find we still have a ways to go. Yet the toughest thing for me right now is the ugliness I see when I look in the mirror. I feel like a monster with the incision and the lump of excess skin on my nose. I just cried and cried when I looked in the mirror for the first time this morning at the hospital. I vowed I would never leave the house and show my face. I got enough stares before the surgery...now I am bound to scare a few kids at Target. When I got home Kendall was alarmed at the way I looked. I could see the fear in her eyes and it broke my heart.

Why this keeps happening...I don't know. Each time these setbacks take place, it takes me a day or two to get through the frustration and anger. I seem to have a pattern I go through each time I am faced with these disappointments. My family too has discovered this about me. They know to let me be angry at God and the situation and then eventually I calm down and start looking for hope to get through it. I know God just sits back and with understanding allows me feel this way and awaits for me to call on him for strength when I am ready. And he does give it to me when I am ready and willing to let him.

Tomorrow is my birthday. I was hoping to be able to celebrate it big this year since my last birthday was spent in the hospital getting chemo. Unfortunately, it won't be the birthday I was hoping for. But I will cherish being able to spend it at home and with my family.

Please pray for quick healing and that everything will heal in the right way. No more complications! And continue to pray for strength so that I can get through this next setback. Thank you!!!

Love,
Sue

Sunday, April 18, 2010

Spring, Birds and Joy

What a wonderful time of year. The sun is shining, the trees are budding and the birds are back! The two robins that made nests last year have reappeared. They are in the midst of making nests again in our yard. One has taken residence in our front tree again. And I have yet to discover where the other one is making its nest. We have yet to see the blue birds. Kendall's bird house is sitting in the same place the blue birds found it last year. But I am wondering if their visit was a one time event. They were once a symbol of God's love and faithfulness to us during a very difficult time. It somehow would be more meaningful if they did not return.

These last couple of days I have spent a lot of time on the deck under the gazebo. I am enjoying listening to the sounds of spring. The sounds are so much more beautiful to me. At this time last year I was just beginning my battle and was unable to sit and enjoy the change of seasons. However, I don't think I would have appreciated it back then as much as I do now. What a great feeling to know the hard stuff is behind me and that we can start moving forward. We are beginning to make plans again and talking a lot about this Summer. After the surgery on Wednesday, I will not have an MRI until the end of July and the next surgery will be done during a time of my choosing. I am thinking I will wait to fix my cheek bone and teeth until the end of Summer. It will be so nice to have a break and be free from worry for awhile.

This morning in church our Pastor talked about Joy and the importance of having Joy in our lives no matter what season of life we are in. He emphasized how important it was to have Joy even in the midst of trials and suffering. I know I lost my Joy in the middle of my battle. It was so hard to find it and get it back. It made things very difficult for me and my family. Joy is finally returning back to the Karrmann house. It is amazing to see our moods changing right before my eyes. The stress is leaving, the kids are carefree again and Jason and I are closer than ever. Joy does wonders...and I truly understand the power of Joy in our lives. It was a lesson I needed to learn and hope to live out when things get tough again in the future.

Surgery is on Wednesday at 1:30. My Plastic Surgeon will be repairing the hole left in my face from the mesh breaking through my skin. It will be an outpatient surgery so I should be going home that day unless there are complications. Please pray the surgery will be a success and that there will be no complications and minimal scarring. And pray for peace on the day of surgery.

Love to you all!
Sue

Tuesday, April 13, 2010

The end is near

There is an end in sight! Yesterday I received wonderful news...after much discussion among a group of Radiologists, it was determined no more biopsies are needed. I am officially cancer free! It hasn't really hit me yet. I think it will take some time to sink in. The fear is probably preventing me from fully embracing this news. My doctors will continue to follow me closely. Another MRI will be scheduled in June. Unfortunately, the journey isn't quite finished...more surgeries are to come.

I had an appointment today with one of my Plastic Surgeons. The incision that was left open when they removed the mesh has enlarged significantly since the surgery. The bone in my face is exposed and air is passing in and out when I breath through my nose. My doctor believes at this point the chances of it closing on its own are minimal because of the radiation and the damage it causes and the risk of the bone dying is greater. I have two options: to give it more time or to have surgery to repair it. As of now I am leaning towards surgery. I don't want to risk losing more bone in my face. And I don't want to spend the next month waiting and wondering if the wound will heal. To repair the hole, they will take skin from in between my eyebrows and move it down. It won't be pretty and it will leave a significant scar. This is hard for me to take as I already feel like my face has enough disfigurement. But it seems like the right thing to do at this point. I am so ready for all of this to be done so that I can move on and enjoy the Summer. After this surgery, I think I will wait to have my cheekbone fixed and my teeth implants put in until this Fall. Please pray for that I will make the right decisions for these surgeries.

As I look back over the events of these past few weeks, I can see God's hand in all of it. And as he promised, I have made it through and am now in remission. I have no one else but God to thank for helping me through it and taking the cancer away. It will be a challenge to not worry and wonder if the cancer is really gone and if it will come back. Each MRI will be difficult for me and the fear will be there. I just have to trust in God and his plan for me. I am not in control.

I have a lot of healing to do now....emotionally and physically. I would appreciate your continued prayers. Please pray for my leg to heal so that I can run again someday. Please pray my face will heal with minimal scars and disfigurement. Please pray my eye will stay up and not fall down. Please pray for the upcoming surgeries...that they are successful and that recovery is quick. Please pray for my family that we will be able to move on from this ordeal and that all of the emotional scars will go away...especially for Mackenzie and Kendall. But most of all, please pray that I will be able to continue trusting in God over the next months and years as the doctors track my health.

As many of you know, I will be participating in the American Cancer Society's Relay for Life on May 14th. The one thing I am looking forward to is walking the "survivors lap" with my Dad. It will be an amazing experience taking that lap around the track knowing that we both fought the fight and won! It has more meaning to me now that I know I am officially cancer free. The type of cancer I have is rare and there is not a lot of data or research on the best way to treat it. This is why it is so important to me to be able to support the American Cancer Society's mission to find a cure for cancer. My hope is that one day it is curable so that none of my friends and family will ever have to go through what I have been through. Our team has reached its fundraising goal, however we now are in the race to be the top fundraising team. We are currently second. If you wish to donate, please click on the link on the top of my blog. And thanks to those of you who have already donated. I am touched by your generosity!!!

I Will continue to keep you updated on my upcoming surgery. I hope to know a date within the next couple of days. Thank you all for your support and prayers and especially for celebrating with me that I am CANCER FREE!!!!!

Love,
Sue

Friday, April 9, 2010

There is surely a hope for me

Yesterday was my one year anniversary since being diagnosed with cancer. I was hoping to be able to celebrate the anniversary knowing I was cancer free. But that my have to wait...but not for long...

Today I found out the biopsies they took during my surgery were negative. And today, the Radiologist who works with the ENT doctors and head, neck and throat cancers took a look at my recent MRI (he was not able to last week due to being out of town). He believes the two spots in question are not cancer. He feels there is no reason to biopsy the area. He will be speaking with my surgeon on Monday about his findings and determine whether or not the biopsy needs to be done.

Things have been going well since the surgery. I had a follow up appointment today with the Plastic Surgeon who removed the mesh. The part of the incision that was left open needs to heal within 6 weeks. If it does not heal, they will need to repair it with another skin graft. It is too hard to tell what will happen with skin that has been radiated. We will just have to wait and see. As for my eye, they are not sure if there is enough scarring to hold the eye in place. Another wait and see situation. Over time the eye may fall or may not. But as of now, things are going well.

One thing I am learning through all of this is to wait and to have patience without getting anxious. Typically I have a need for immediate and powerful action from God and the doctors. Yet, most of the circumstances are such that I can do nothing. It takes every ounce of my being to not fall to pieces. Most of the time I do fall to pieces and get angry, frustrated, hurt and sad. But then after going through these emotions I am able to be still and wait. And when I am still I start to hear a still small voice in the depths of my being. This voice brings me the hope and the strength I am looking for to get over the next hurdle. It has taken me a long time to be able to do this. It is still a work in progress. But it is getting easier. So over the next few weeks as I am waiting for results, waiting to see if my wounds will heal, waiting to see if my eye will stay put I am going to attempt to be still and listen for God's voice.

Not in the turmoil of the raging storm,
Not in the earthquake or devouring flame;
But in the hush that could all fear transform,
The still, small whisper to the prophet came.

O Soul, keep silence on the mount of God,
Though cares and needs throb around you like a sea;
From prayers, petitions, and desires unshod,
Be still, and hear what God will say to thee.

All fellowship has interludes of rest,
New strength maturing in each level of power;
The sweetest Alleluias of the blest
Are silent, for the space of half an hour.

O rest, in utter quietude of soul,
Abandon words, leave prayer and praise awhile;
Let your whole being, hushed in his control,
Learn the full meaning of His voice and smile.

Not as an athlete wrestling for a crown,
Not taking Heaven by violence of will,
But with you Father as a child sit down,
And know the bliss that follows His "Be Still!"
-Mary Rowles Jarvis

Proverbs 23:18 "There is surely a future hope for you, and your hope will not be cut off."


Thank you for your continued prayers. THEY ARE WORKING!!!!!!!!!!!!

Love,
Sue

Wednesday, April 7, 2010

Happy Face

It was a happy face! But not for all of the reasons I was hoping for.

The surgery went extremely well. It could not have gone any better. My surgeons were very pleased with what they saw and what they were able to do. A small incision was made (THANK GOD) right under my eye and they were able to remove the mesh. The tissue inside looked very healthy. Some biopsies were done, unfortunately there were unable to reach the area in question. To avoid making more incisions, my surgeon decided he would biopsy the area within a few days with a needle.

I am disappointed about the biopsy, but extremely happy with the fact they did not have to cut my face open again. So it was good news. Thus, the happy face.

There is some swelling, but not as much as I thought there would be. Hopefully it won't take as long this time for the swelling to go away. The incision was made where the mesh was breaking through. The skin there was so fragile and thin that stitching it entirely closed would have been difficult. So to avoid a skin graft to repair the area, the incision was left partly open with hopes that it will close on its own. Should it not close, a skin graft will have to be done.

As you can see, this saga is not entirely over. I hope to deliver good news again in a few days that the biopsies they took were normal and that the biopsy they will take through the needle will be normal. Please continue to keep me in your prayers...pray the incision will close. Pray for strength. Pray for healing. Your prayers are being answered! I am so thankful for your prayers.

Love,
Sue

Monday, April 5, 2010

Waiting for hope

Tomorrow is the big day. Surgery at 3:30. I will either be jumping for joy with good news or devastated beyond belief with bad news. I am scared...not about the surgery itself, but about the after. Seeing Jason's face as he walks into the recovery room. Will it be a happy face or a concerned face? I will know immediately if the surgeon found cancer when I see Jason's face for the first time. Please God, let it be a happy face. I am also scared about what my face will look like....

Today I had an appointment with the surgeon that will be assisting my Surgical Oncologist. I learned that the mesh has been secured with 3 screws. To access these 3 screws, they may have to cut open my entire face again. They would cut along my current scar. As for my eye...time will tell. It will be too soon to determine whether or not my eye has enough support. Over time it may fall down or back. Should that happen, they will have to find a way to better support it or remove it all together. Recovery will take time again. My face will be swollen again. I am devastated...again.

I have had quite the conversation with God this past hour. He knows my heart and the disappointment I am feeling right now. I have begged him for Mercy and asked God for deliverance from all of this pain and suffering. I feel so alone. Yet, no matter how abandoned I feel, I am still drawn to God and seek him for hope and peace knowing his eyes see further than my own....

Dear Lord,
You have made waiting beautiful and patience divine. You have taught us that Your will should be accepted, simply because it is Your will. You have revealed to us that a person may see nothing but sorrow in his cup yet still be willing to drink it because of a conviction that Your eyes see further than his own. Father, give me Your divine power-the power of Gethsemane. Give me the strength to wait for hope-to look through the window when there are no stars. Even when my joy is gone, give me the strength to stand victoriously in the darkest night and say, "To my heavenly Father, the sun still shines." - A prayer from Streams in the Desert


If you could remember me in your prayers, I would appreciate it. Tomorrow will be a difficult day. Please pray that the surgeons will be able to use the least evasive measures to remove the mesh in my face. Pray that my eye will have the support it needs to stay in place. Pray for strength so that I may be able to handle whatever news I get tomorrow. Pray that recovery will not be long.

Thank you all,
Sue

Friday, April 2, 2010

Getting good at packing quickly!

Our trip to Platteville was cut short. We had to come home late last night and after a 5 hour drive we crawled into our beds at 2:00 a.m. The saga began two nights ago....

Wednesday night
I was blowing my nose and noticed in the mirror something dripping down my face. No, it was not from my nose, but my face. I had blown a hole in my face right where the infection is. The skin in the infected area has become so thin and fragile that it broke down and thus the hole. It wasn't a big hole but about the size of a pin prick. I quickly called the on call ENT Physician...doctor said it was not a big deal just keep it covered and apply Aquaphor. If it gets any bigger call us back. I did what the doctor told me to do and went to bed a little concerned.

Thursday day
Started noticing something shiny in the pin prick hole. Thought it was just dried up mucus. Decided to ignore and go on with my day. I refused to let this ruin our weekend.

Thursday night
Just got home from having dinner at Steve's pizza with Jason's parents. Decided to take a look in mirror at my hole to see how it was doing. The shiny part was not mucus, it was the mesh lining in my face breaking through my skin. Now is the time I started to freak out. I had a feeling our weekend was going to be cut short. Called the on call ENT Physician. He called my surgeon. It was time to head home. We needed to see my surgeon in the clinic the next day. I was to not eat Friday morning in case they decided to do emergency surgery. We quickly began packing the car and the girls in their jammies were put in their car seats with a pillow in hand to sleep during the road trip home.

Friday morning
Slept until 9:00. Started getting prepared for possible surgery this afternoon. Got up and started packing bags for the girls to potentially stay overnight at my sister's house. Spent some time trying to organize things around the house in case I was to not come home later in the day.

Friday Afternoon
Had appointment with doctor. It was decided the mesh lining needed to be removed. Now it gets complicated...the mesh lining is supporting my eye. So my doctor will be tag teaming with a plastics surgeon who specializes in eye support and moving tissue around in the face for reconstruction. The surgery will no longer be done endoscopicallly through my nose but an incision will need to be made in my face. At that time they will biopsy the areas that may have cancer. This was a serious appointment and there is a lot more at stake than I originally thought. Broke down crying in the doctors office. The stress finally got to me and I told my surgeon I could not do this anymore. He sweetly tried to comfort me, but there was only so much he can say. He said he would be surprised if it was cancer. But this isn't the first time I have heard this...it always ends up being cancer.

Friday Mid-Afternoon
Driving home from the appointment Jason told me about something that happened to him while driving home last night. He was having a personal conversation with God asking him if this will ever saga will ever end and if we will soon be able to move on with our lives. After his conversation, he saw a shooting comet quickly falling through the sky. An amazing sight he said and confirmation for from God that everything will be OK. I was asleep in the car at the time. Wish I could have seen it.

Friday Evening
Having a hard time finding hope in all of this. Hard to find it when it seems like we consistently get bad news. I know in my heart there is a purpose to all of this, but at the same time I am so frustrated with God. When will he have mercy on us? We are exhausted, tired and drained.

Surgery has been scheduled for this Tuesday at 3:30. Please keep us in your prayers. Pray surgery will go smoothly. Pray for wisdom for the doctors. Pray my eye will be supported. Pray the cancer is GONE!!!!!!!!!!!

Happy Easter!
Sue