A reminder of what it means...

On Wednesday, after my last and final radiation therapy session, I was once again reminded what it means to be held, what it means to be loved.  As we pulled into our driveway, there were my friends anxiously awaiting for our arrival.  Our house was decorated with balloons and with one large sign saying "You Reached The Finish Line."  Immediately the tears started  

flowing and I couldn't believe that these people would go out of their way to help celebrate this milestone in my life.  Words cannot explain how I felt other than I simply felt loved and held.   It was a special time for me to give each and every one of them a hug and to thank them for the endless words of encouragement and the support they have given to me and my family these past months.  But the surprise did not end there.  A huge basket with a multitude of gifts were sitting on my front step.  Each of them carefully selected to reflect the things that I missed during treatment, things I am looking forward to the most once I am through recovery or things that were had special meaning .   The basket included a Diet Coke, marshmallows for the fire pit, fireworks, books from our book club,  a beautiful plate with a birds nest on it...the list could go on.  There are few times in my life that I can tell you about that I have been deeply impacted by the act of love from others.  This is one of those times.

So these past couple of days I wish I could tell you that I have been on the fast road to recovery. Unfortunately, I am not.  Nausea has set in again and I am fighting trying to keep things in my stomach.  It is hard to be patient and not get anxious about the healing process.  Of course, I wish I could go out and eat a steak tomorrow, but that is just not going to happen.  But it could not come soon enough.

I placed some pictures of the celebration on this blog, but I also posted a picture of what it was like for me during radiation therapy...mask and all.  Thought you might be interested in seeing it.   

Please continue to pray for quick healing and that I will have the patience to get through this. Again, again and again, thank you all for everything you have done for me!!! I feel so blessed.

Mixed Emotions

I have been very emotional this morning....experiencing all types of emotions as I approach the end of my therapy.   Part of me is on a high knowing after today I only have one day left of radiation and that yesterday was my last day of chemotherapy.  I had a big smile walking out of the infusion center after it was completed.  Yet, I was scared to look back knowing that there is a chance I might be back.  This is the core of what I am struggling with today...knowing that there is no guarantee this cancer will be gone after all treatment has been completed.  Fear is starting to overcome me and I wonder if this will truly ever be done.  I want to celebrate..jump for joy that I have made it through the hardest thing I have ever had to go through in my life.  But because of the fear I cannot.  Plus, the side effects from the radiation will take some time to go away so it will still be difficult to truly celebrate for awhile.  I look forward to the day I can eat, drink, exercise and feel normal again.  I pray this day will come soon.  I also pray that I can feel peace and hope as I wait to heal and then get the results of the treatment in a few months.

"He who dwells in the secret place of the Most High shall remain stable and fixed under the shadow of the Almighty [whose power no foe can withstand]." Psalm (91:1)

I have been spending a lot of time thinking of the things I hope to accomplish when I feel better in the next month or so.  Most of these things are very simple, but they sound heavenly to me.  Here is my list:

1.  Drinking a big Diet Coke with a lime (I normally do not drink soda, but for some reason this sounds so good)

2.  Munching on chips and salsa

3.  Going to Wildfire with Jason and ordering the Macadamia nut crusted Halibut

4.  Going to a movie in public

5.  Taking the girls to buy their school supplies and school clothes

6.  Eating a footlong corn dog plus more at the State Fair (gotta put some weight back on...what a great place to do it!)

7.  Waking up in the morning and feeling great

8.  Having a cup of coffee and reading the newspaper

9.  Going to church again

10.  Going on a family trip before Summer is over

11.  Hanging with my girlfriends

12.  Taking care of the girls and Jason, being a family again

13.  Roasting marshmallows by our fire pit

14.  Being free of IV ports and feeding tubes

15. Having a nightstand free from medications

16.  Driving - I haven't driven a car in a long time.  Too many narcotics.

17.  Going to the mall

This list could go on and on.  

PS - Yesterday, Mushroom the caterpillar changed into a chrysalis.  I was at chemotherapy and missed the transformation.  I knew it was about to happen as he was in the J formation in the morning.  

Mushroom the butterfly

The other day my sister brought over a tiny monarch caterpillar on some milk weed.  She wanted us to experience first hand the miracle of a caterpillar transforming into a beautiful butterfly.  So every morning I come downstairs to check out what the caterpillar is doing.  (By the way, Kendall so lovingly named him Mushroom)  Mushroom grows twice his size every day. He is getting so big now that I am anticipating that the day of Mushroom turning into a Chrysalis is coming very soon.  I don't want to miss it so I try to keep an eye on him as much as possible.  

The gift of Mushroom has given me something to look forward to every day.  And at this point of time, I will take every distraction I can get.  These past couple of days have been extremely rough.  I have been experiencing a lot of nausea and having hard time keeping anything in my stomach.  Just when I thought I had hit an all time low, I think I hit it yesterday.  I was begging and pleading for Jason to not take me to radiation.  I just did not have it in me anymore.  So we went to the Oncologists first to see if there was something they could do to help.  They gave me some IV fluids and IV medications to help give me a boost.  Luckily that did the job and I was able to complete my radiation therapy for the day.  It is hard to be in this situation...there are days you just don't have it in you to go to radiation.  But if you skip a day it just gets added on to the end.  To add it on to the end at this point will not help my mental state as I am desperately clinging on to the idea that next Wednesday is the last day!  So as of today, I have one more round of chemo on Monday and radiation therapy will be completed on Wednesday.   

Right now, I do feel like I a lot like an ugly caterpillar like Mushroom.  How I wish I could just go and hide into a caccoon.   With a bald head and burns all over my face and neck I look forward to the day that I can feel feminine again.   I hope that I will too, transform into a beautiful butterfly again like Mushroom.  Not just on the outside, but on the inside as well.  I hope that I will take all of the lessons I have learned about life and myself and apply them in how I live my life from here on out.  I want to be a better friend, better wife and better mom.  I want to live life to its fullest!

Please continue to pray for strength to get through next Wednesday.  Pray that I will no longer have any setbacks and experience nausea.  Please pray that the cancer will get out of my face and out of the orbit of my eye.  And pray that I will be able to have peace and no anxiety as I wait to heal over the next few months and for the final scans to be completed in October.

Thank you all for all that you do and all that you are!  I appreciate each and every one of you!

Love,

Sue 

Countdown is on

The countdown is on!  After today, I will have 8 radiation therapy sessions left.  I have now entered into the "boost" phase during radiation.  This means that the radiation beams are now concentrating on my sinuses only.  It no longer includes my neck or the other areas that they were covering to be on the safe side.  The skin on my neck is just about to break open and get very sore so I am relieved it is no longer getting any radiation.  

My pain is finally under control.  It is amazing how my mental state can change when I am not in as much pain.  I am not an emotional wreck as I was last week and I am a little more positive.  The mucus drainage is still a problem and every now and then I will gag and throw up. But the antibiotic that I am taking seems to be helping a little.  

Yesterday, I had an appointment with my Surgical Oncologist.  I have not met with him since I was diagnosed.  I have been anxious to speak with him about my prognosis and whether or not surgery will be required in the future.  He said that the goal of radiation is to cure me of the cancer.  They are hoping it will be gone.  The only concern still is the eye.  They are doing the best they can to radiate the area in the orbit that has the cancer without doing too much damage to my eye.  However, it is too hard to tell if the radiation is reaching the area of the orbit the cancer is in.  So please pray that radiation is doing its job and that the cancer will be gone.  Especially in the orbit!!!  If it is, I am done and cancer free!!!

Now comes the hard part for me.  Believing it can happen.  I think "believing" is THE lesson I have been learning lately.  Not only being taught to me by God, but my many of you as well.  I am someone that has a tendency to not look on the bright side.  I always expect the worse.  So as you can imagine, to believe that I can be cured has been very hard for me.  I get scared to believe because I am afraid of being disappointed.  I have seen God allow bad things to happen to so many people where the outcome has not been good.  So why would he allow me to live and to get rid of this cancer?   I am struggling with completely trusting the goodness of God and his love for me.  In my mind, I know he loves me like no other.  Why can't I 100% believe this in my heart?  It isn't hard for me to trust God with the little things in life.  But when it comes to my life, I struggle.   I am learning more and more about the depth of God's love through this journey.  When I look back over these past couple of months I can see the many blessings he has given me and how he has carried me through some of the darkest times.

Yesterday, I read in my devotions about the passage in Matthew 8.   Jesus had just come down from the mountain and began healing people afflicted with illnesses and diseases.  One particular man had come to Jesus asking him to heal his servant.   The difference in how this man asked Jesus to heal his servant, compared to the others in the crowd, was that he asked him knowing that God could and would heal him.  He asked out of faith.  And in Matthew 8:13 Jesus said to him "It shall be done for you as you have believed."  

Although I don't know what God's plan is for my life, I need to at least start with thinking and believing that he loves me.  And I need to believe that whatever God does with his plan for my life that it will be good, and I'll be blessed.  

Grief and Anger

I spent most of my weekend grieving....grieving many of the losses I have felt over the last few months...loss of my hair; loss of my strength; loss of my body; loss of choices; loss of time spent with my family; loss of joy.   I also spent most of my weekend letting out my anger....anger at God.  Shaking my fist at him asking what it was that I did to deserve this.  Asking him what are the limits that he will allow in pain and suffering.   It felt so good to yell out at God and say "I AM SO ANGRY AT YOU GOD!!!   WHERE ARE YOU IN ALL OF THIS?  I DON'T UNDERSTAND!!!!"  I am so glad that we have a God that we can do this with and know that he will still love and care for us.

This past weekend was so tough.  Not only because all of the emotions that I have been experiencing, but because of what my body is going through.  I have been experiencing a lot of nausea due to all of the mucus and drainage from my mouth and nose.  I have thrown up a few times which is not fun with all of the sores in my throat and mouth.  It has been difficult to keep on top of the pain.  The sores in my mouth are breaking open.  I think I might have another sinus infection.  And I am just tired.  Last night I spent some time in the ER getting some pain medications for some temporary relief and IV fluids for dehydration.  It was so unbearable.  

I am really struggling with whether or not to keep updating all of you on what I am going through.  It is really tough right now and I worry I am being too depressing.  But all I can do is be honest with what is going on. There is nothing good about it.  This is the reality of cancer.  So I apologize.  But after reading the many messages left today on my blog, I decided I would sink into a deeper hole if I was not able to read your messages of encouragement and support.   So I will continue.  The blogs may not be as frequent so please be patient.  

 

I miss

I miss my girls.  I miss the time I spend with them.  I miss the days that I could hug and kiss them without being afraid of getting sick.

I miss Jason.  I miss date nights.  I miss sharing alone time with him.  I miss the days I could kiss him without being afraid of getting sick.

I miss Summer.  I miss playing outside with the neighborhood kids.  I miss talking with the neighbors.  I miss going to the pool.  I miss soaking up the warm sun.  I miss going to the cabin.

I miss me.  I miss myself running in the mornings.  I miss my laughter.   I miss my ability to choose.  I miss my hair.  I miss myself enjoying life. 

I miss food.  I miss chips and salsa.  I miss going out to eat.  I miss enjoying a simple glass of wine.  

I miss my faith.  I miss seeing God in all of this.  I miss feeling peace.  

God, I am missing a whole lot right now.  I am hurting and in pain.  I am scared of enduring what the next couple of weeks will bring.  I don't think I can do this much longer.  Breath on me your peace and power.

Miracle of Long Ago

I recently had an encounter with two people that became very special to our family eight years ago when Mackenzie was born.  The first person is a doctor that frequently took care of Mackenzie in the NICU for 6 months.  He knew my parents as they attended Taylor University together way back when.  And he came very special to me and Jason during the many months we waited for Mackenzie to come home.  This doctor is amazing because he prays for each and every baby he takes care of in the NICU.  He knows that prayer is the only "medicine" that truly helped the babies in the NICU to survive. There were many, many, many times that Mackenzie should have died.  Yet, because all of the prayers she defeated the odds and lived.  This doctor and many of the other doctors in the NICU were amazed by the miracle she is.  

The other day, this doctor, again through ties to my parents and Taylor University, left a message on this blog to encourage me and remind of the strength we had to get through Mackenzie's birth and struggle to live.  I just cried when I read his message.  It meant a lot to me that he would take the time to write on my blog.   It also reminded me of the miracle of Mackenzie.  God was there by our side every step of the way.  He was there through the many surgeries she had. God loved her and cared for her.  He placed very special people in her life to care for her.  In fact, when I look at her life up until now, I can see God's hand in selecting the many people (doctors, nurses, therapists, teachers, schools) that have helped her overcome many obstacles in her life.  Sometimes on Sunday mornings at church I will sit and see many of these special people sitting in the congregation joining with me in worshipping God.  

Not only did we get to be very close with the staff in the NICU, but we became close friends with many of the parents that had babies in the NICU as well.   Unfortunately, many of these families did not have the outcome that Mackenzie did and we found ourselves attending many funerals of the babies that did not live.  Today, after walking out of the hospital we bumped into one of these very special friends that we have not seen since the NICU days.  We spent a lot of time with this couple supporting one another through the ups and downs.  Unfortunately, their precious little girl did not survive.  It was so sad and a very difficult time for these friends of ours and for us to watch them mourn the death of their baby girl.  But the bond we formed with these friends was so strong.  So seeing our friend today was very special for me.  He was aware of my battle with cancer and little did he know how much his words of encouragement meant to me.   This friend had been by our side through one of the worst times of our lives and here he was again supporting us during another difficult time in our life.  Getting encouragement from someone who has journeyed with us before was special.  I just wanted to cry and say "Can you believe this? Haven't we gone through enough?" But, words did not need to be said because we knew that he cared.  It was just understood.

So these two encounters were a much needed reminder...God took care of Mackenzie and he took care of us during our time in the NICU.  God had placed very special people in our lives to be a support to us during what was the most difficult time in our lives.   In fact, a lot of these people that were a blessing to Mackenzie are now a blessing to me through my battle with cancer.   And God has given us so many more people that have been a blessing and a tremendous support to us.  Little did we know moving into our neighborhood 5 years ago would we receive the outpouring of love and support from the friends and families that live among us.  They have made sure there is food on the table for my family.  They have taken the girls for playdates. Many of you that followed Mackenzie's journey through her website are once again showing us support through this journey.  I have a Junior High Social Studies teacher that has faithfully been praying for my healing since day one.  Dear college friends that I have not spoken to for years have gone out of their way to show me that they care.  Childhood family friends that still call me "Susie" have sent endless cards with words of encouragement.  A group of anonymous women sent me a box of hats to wear.  Our parents have taken turns each week staying with us to care for the girls and to drive me to the hospital.  I could go on and on.  God cared for us back in the NICU and he is showing he cares for us now.  With God's grace we survived and we WILL survive this.  

The verse that was given to me at the very beginning of my journey has popped back into my mind.  "Will the Lord reject forever?  Will he never show his favor again?  Has his unfailing love vanished forever?  Has his promise failed for all time?  Has God forgotten to be merciful?  Has he in anger withheld his compassion?  Then I thought, To this I will appeal:  the years of the right hand of the Most High.   I will remember the deeds of the Lord; yes, I will remember your miracles of long ago.  I will meditate on all your works and consider your might deeds."  Psalms 77:7-12

Moving Mountains

I think I have hit an all time low. I find myself breaking down and sobbing throughout the day. I am physically and mentally done. I am having a hard time finding it within myself strength to get through the last few weeks. I just want to crawl into a hole and never come out. 

I think I am also down because Fourth of July weekend has always been a highlight of my year. This year, I have to sit and watch the fun and activities take place all around me without being able to participate.  By the time I am done with radiation therapy and have healed, Summer will be over.   

The only thing that is going to get me through these next few weeks is an overwhelming sense of peace and the presence of God.   It is going to take a miracle to get down the other side of the mountain.

I want you to face the mountain

so that you can see,

when the mountain is out of the way

all there is left is Me.

Only I can move the mountain,

only I can push it away,

only I can conquer the problems

that you face today.

Your only job is to believe, 

to listen to My voice,

and when you hear what I command,

obedience is your choice.

But I will not make it too difficult 

for the victory is already Mine,

and I will fill you with My Spirit and through

you My grace will shine.

Not when you are perfect,

like you think you need to be,

but when your heart is willing to become

more and more like Me.

"Not by might, nor by power, but by My Spirit...says the Lord of hosts."  Zechariah 4:6

A Day in the Life of Sue

I thought you might like a glimpse into what my days are like. They are mostly filled with attempts to prevent or overcome the side effects of the radiation. Now I know why most cancer patients lose their hair - because they don't have the time to fuss with it after all of the things they need to do to survive chemo and radiation!

Morning:
1. The moment I wake up I am usually in pain so I take my pain medication right away.
2. My nose is also very stuffy and sore so first I do a saline rinse to clean out my sinuses.
3. Then with a Q-tip I rub Aquaphor in my nose to keep it as moist as possible. Right now it is very sore and irritated.
4. My eye is getting very dry and irritated so I place Liquid Tears eye drops in my eye.
5. I take my other medications: Zofran (nausea), Protonix (heartburn), Synthroid (for my hypothyrodism), Claritin, and stool softener to prevent constipation from all of the pain medications.
6. Apply Aloe to my face and neck to prevent skin deterioration.
7. Rinse my mouth with a salt and baking soda solution.
8. Rinse my mouth with a steroid solution to help the sores in my mouth. Yesterday the doctor said they were among the worst they have seen.
8. Attempt to eat something solid by mouth to keep my swallowing muscles active. This usually means yogurt or something soft.
9. Dump one can of Ensure Plus into my feeding tube.
10. Apply Lidocane to the sores in mouth to temporarily take away the pain.
11. Give myself a Lovenox (blood thinner) shot in my stomach.

Mid Morning:
1. Pain medication is starting to wear off so take another dose.
2. My nose is stuffy and sore again so I use a saline spray and try to clean out my nose as much as possible. Reapply the Aquaphor.
3. Dump another can of Ensure Plus into my feeding tube.

Lunch time:
1. Apply Lidocane to the sores in my mouth so that eating lunch will be a little easier.
2. Attempt to eat something solid again.
3. Use nasal saline spray and apply Aquaphor to my nose again.
4. Rinse with salt and soda solution again.
5. Rinse with steroid solution again.

Mid afternoon:
1. Take pain medication again.
2. Leave at 1:45 to go to radiation.
3. Get radiation therapy at 2:30
4. Arrive back home at 3:30
5. Dump another can of Ensure Plus into my feeding tube.
6. Take another dose of Zofran.

Dinner:
1. Rinse with salt and soda solution again.
2. Rinse with steroid solution again.
3. Apply Lidocane to mouth sores so that eating dinner will be easier.
4. Attempt to eat something solid by mouth.
5. Dump another can of Ensure Plus into my feeding tube.

Bedtime:
1. Take pain medication again.
2. Take another dose of Protonix, Zofran and stool softener.
3. Give myself another shot of Lovenox.
4. Do another sinus rinse.
5. Apply Aquaphor to the inside of my nose.
6. Do another salt and soda rinse.
7. Do another steroid rinse.
8. Brush my teeth and floss.
9. Brush with fluoride. (These two steps are important to protect my teeth. Patients going through radiation can easily get cavities)
10. Place Liquid Tears eye drops in my eye again.
11. Apply aloe to my skin again.

In addition to the above cares, I will now be giving myself IV fluids at home. It will start at 3 days a week and will eventually lead to every day IV fluids. It is getting harder and harder to keep drinking a lot of water. The nurse will be coming to day to show me how to do it.

Things have been going OK this week. It is getting tough to manage the sores in my mouth. The doctors have been giving me every possible solution they know of to help them heal but nothing seems to work. My Radiation Oncologist gave me the steroid rinse and I am hoping that will be an answer. Time will tell. Thank goodness for feeding tubes!

Please pray for the sores in my mouth to get better or to a level that is manageable!