Monday, June 22, 2009

Bonfire anyone?

These past few days have been rough.  I have been an emotional wreck.  When my family tells me you can do this, I just want to yell back and say NO I CAN'T!!!  THIS IS AWFUL!!!  The pain is intolerable.  This morning I broke down and just sobbed...I did not want to go to my appointments today.  Unfortunately, I had no choice if I want to live.  So I dragged myself out of bed and got ready.

8:00 AM - Appointment with Lucy. She is the Physician Assistant that works with the Oncologist.  If it weren't for Lucy, I would not have gotten this far.  She is so understanding and gives me the perspective I need to calm down.  After discussing the pain I have been experiencing, she decided to put me on another pain medication that is given through a transdermal patch.  It will give me constant pain relief when combined with the other pain medication I have already been taking.  Lucy also gave me some medications that will help with the mouth sores.  She was not surprised at the level of my pain - patients that get reduction chemotherapy before radiation have a tendency to experience the side effects much earlier and more severely.  We also decided that this week I will have a feeding tube put in. I am feeling relieved, but anxious at the same time.  I had such a difficult time with anesthesia with my port surgery.  But I think it will help me get through the rest of treatment and through the recovery period.  

8:30 - Chemotherapy Shmeeotherapy -  Yes, that is how I am starting to feel about chemo. So done with it.  At least I am not getting the nausea I had with the reduction chemo. Back to the hot and cold flashes as a result of the pre-meds which includes a steroid.  I might as well be going through menopause.

2:30 - Radiation - I think I am going to burn the mask they put me in when this is all said and done.  Bonfire anyone?  I have a love/hate relationship with radiation.  Love that it will cure me...hate that it is the only path to a cure.  

The hardest part of it all...I feel like I have hit a wall.  I have been shaking with anxiety about what is to come.  I can't take my Ativan because combined with the pain medications I would not be able to stand up straight.  So I am going to have to learn to manage it mentally. What amazes me is that I make the conscious decision every day to subject my body to the things that cause pain and mutilation.  It's crazy!!!  Amazing what one will do to survive.   

I love the messages that everyone left me on my last posting.  They bring tears to my eyes. Please keep them coming.  I cling to each and every word written.  

Much love,
Sue

10 comments:

Anonymous said...

Sue,
I can't even begin to imagine what you are going through..but what I do know is that you are one strong women!!! I know it must of been a tough decision to make to go through with the feeding tube, I remember how tough it was to make that decision for my daughter Lexcy as it was for yours with Mackenzie. But look at what a wonderful thing it is...so much less stress about that part of life. I think of you often and pray that there are brighter days ahead!!

Alecia Gunderson

Anonymous said...

Sue,
I pray that somewhere somehow you find the stregth to carry on. When you are one, two, three, five, ten and twenty years out from the terrible pain and treatments, it WILL be worth it. During the treatments it doesn't seem possible to make it through but someday it will be. Hang in there for your husband, your daughters, and your future family. May you feel the arms of Jesus wrapping around you today and the Holy Spirit taking over for you when you can't.

Julie Dahl

Connie said...

Keep on keepin' on, Sue! Through all this horror, you're keeping a sense of humor ("Chemotherapy, Shmeeotherapy!") Yay! and Good for You! There'll be NO keeping this good woman down for long. I just know that.
And you may feel like crying out, "I can't DO this any more!" But you know, deep down, you will. Because you must. Love, Connie Stephens

Anonymous said...

Sue, a song for you:

Jesus, Jesus, bright Morning Star
Everlasting Father, Prince of Peace

Emmanuel, God with us
Jesus, Jesus, welcome to our world

Love,

Sally

Anonymous said...

Dear Precious Sue,
You are an amazing writer. Your honest, creative, heartfelt words are a blessing to me. You have the courage, strength and faith to make it, plus the prayers of many. Lowell and I have kept you in our prayers from the beginning. God loves you and has you in His arms. He is our refuge.
Love, Julie Johnson

Anonymous said...

"His eye is on the sparrow, and I know he watches me." I love the song you have playing on your blog. Matthew says the birds of the air neither sow nor reap, but the Heavenly Father provides for them their every need.

Lord, thank you for Lucy. Thank you for medicine, and feeding tubes. Thank you for everyone providing meals, and prayers, and daily words of sustenance. Thank you that Sue's name is engraved on the palm of your hands--the very arms that wrap her in LOVE.

We love you Sue.

Cheri

Anonymous said...

Sue,
I wish I had great words of wisdom to share, but I don't. I do know that any time you have weakness, and feel that you just can't keep on, look to your wonderful husband and two beautitul daughters. There are so many reasons to keep on. Continue with your scripture readings, God left those words for times just like these. You have many wonderful folks lifting you up daily, what a gift to be a rich woman in so many ways.
Love you,
Derek, Connie and Bella

Anonymous said...

Sue,

May the Holy Spirit pray when we do not know how or what to pray. Thinking about you and praying for you daily.

"Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered."

Mark K.

Anonymous said...

Hi Sue,
I can't imagine how hard and lonely this whole experience must be for you. It is you who has to choose to get up each day and fight and it is you who has to endure the pain. I am so sorry you are going through this. Please know I pray for you daily.
I wanted to share a little something I read in a book about survivors. The book was all about amazing stories of people who survived unbelievable challenges. It talked about each story and what the people had in common that were able to survive and overcome their challenge. The things they had in common were faith and the ability to control their thoughts. Each day they would focus on that day and what they needed to do to survive that day. They would keep their minds occupied with positive things. They would plan out their day and focus on a variety of tasks. They would not allow themselves to focus on the hopelessness of their situation or any other negative thought. They disciplined their mind to put all their energy toward positive outcomes. Sue take it a day at a time and focus only on that day and what you need to do to stay in the fight. Think of things that you can occupy your mind with that are positive and fun for you. (i.e- books, puzzles, scrap-booking, meditating on things you are going to do when you are well, planning fun vacations in your mind, reading funny books or sharing funny memories- anything that can relieve stress and make you smile, learn to do a new skill, rest when you need to, but keep your mind active and engaged in positive things. The people in the stories who controlled their minds and thoughts survived horrible situations. You can too!! Once you get this pain under control I think you will be able to better focus on each day and choose to fight and be positive. The brain has such amazing power to heal. Sue you have amazing strength and a Heavenly Father who is walking in this journey with you. Keep fighting and persevering and don't allow any negative feelings to overcome you.
What a day of rejoicing it will be when you can have that bonfire and burn up all the bad memories, eat what you want with no mouth sores and be declared CANCER FREE!
Love and peace,
Nikki

Beth said...

Sue,

You don't know me, but I'm one of the "girls" in Cheri and Sally's group. My heart breaks when I read of your anguish and pain. Your honesty and faith inspire me. I am praying that God's comfort and healing would surround and fill you every moment of every day. And that God would protect you and your family during this awful time.

Blessings, Beth Thompson