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Tuesday, May 21, 2013

"Anticipation, Frustration, Disappointment"

We arrived at MD Anderson at our scheduled time of 9:30am.  I had filled out a lot of paper work prior to my visit.  We waited about 15 minutes before my name was called.  We met with a lady and signed documents and returned to the waiting area.  After 3 1/2 hours of waiting we finally saw a doctor.  She was not the doctor my original appointment was set up with, but asked me a lot of questions, then left the room to consult with my doctor.  They soon both returned, did a physical exam and told Tony and I they would meet us in the conference room.  I'm not sure what I expected to hear, but my heart was very discouraged after our meeting.  We were basically told that with my diagnosis "clear cell carcinoma"', an uncommon residual of Ovarian cancer, would be better turned over to a clinical trial.  The chemo drugs I have been on would not be effective.  Tony and I left to go eat lunch and my heart was very heavy.  It could have been the fact that it was 2pm and we had not eaten lunch.  There is so much to be grateful for but at that moment all I could see was darkness of sick people all around me.  When you let your guard down, Satan moves in quickly to steal your joy.  I was mad at myself for being so emotional and couldn't seem to get it under control.  I went to have lab work drawn then returned upstairs to meet with a scheduler for tomorrow's appointments.

We met with the scheduler and were sent to have an ultrasound on my leg.  Since having chemo last week my right calf muscle has felt like an on going leg cramp and they wanted to rule out a blood clot.  I did not get done with my ultrasound until after 5pm.  The radiologist could not get in touch with my doctor.  I was told there are small blood clots in my leg and that my doctor would have to give me a treatment plan.  We left MD Anderson feeling very defeated today.  I felt like a "number" that was lost in some sort of processing.  We do not have any other appointments scheduled at this point.  I was told a CT scan would be done tomorrow and a meeting with the Phase 1 doctor for a clinical trial study would happen tomorrow as well.  We are not sure what the next step is.  I do know that I had set my expectations so high for coming to Houston and after a long crazy day yesterday of trying to get here along with the tiredness of the day of waiting, my emotional roller coaster went crazy.  We returned back to our hotel a little after 6pm emotionally drained.  We've decided to call it an evening and refresh ourselves with food and rest and praying for a better day tomorrow.  We know God is in control and will trust in Him and not in man.

"Today is the day the Lord has made, I will rejoice and be glad in it"

15 comments:

  1. Janet,
    You are experiencing God given emotions. That is totally normal. I pray that you and Tony have a restful night. I am praying for you and expecting the most from God!
    Love in Christ,
    Janice
    Wilton, NH

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  2. Praying for you in NJ. God is good!

    Megan

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  3. Praying for a better day for you tomorrow. I have been following your blog for a couple of months now. I was diagnosed August 1, 2012 with breast cancer at the age of 40. A lot of what you write is what I need to hear on the bad days - you have such a beautiful outlook on life. Stay strong! God bless you!

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  4. Don't be discouraged, Janet. I know very well the "darkness" of spending the initial days of work-up at M.D. Anderson. They are long and just feel tortuous. My mom did not think that she would even make it through some of those days. She had schedules that seemed a mile long and went from 6 a.m. - 5 p.m. on some days.

    It will get better and you will find that really are so much more than a number there. I am praying that you will sleep well and feel refreshed for whatever tomorrow brings. I pray that there will be less waiting and that you find solace in your new treatment plans.

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  5. Mrs. Pate,

    May the God of all comfort comfort you in every affliction that you face. These trials come our way so that we would rely not on ourselves but on God who raises the dead (2 Corinthians 1). I am praying for you. Persevere in your trusting in Christ. A day is coming when all things will be made right. The resurrection of Christ guarantees that this world will be made right again. I praise God for your example and the way you have demonstrated trust in Christ through this whole process. With you, I am longing for the day when Christ comes again and we reign forever with him without any pain or suffering. I hop on a plane for East Asia tomorrow morning and will be spending some of my time on that plane in prayer for you.

    Matt Tyler

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  6. It’s a blog with full of latest and spectacular information’s – This blog has helped me to gain much more information. I would like to appreciate the blog owner for his efforts Buy a Lift

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  7. Praying for your peace, strength, perserverance and comfort. Even in the dark times, you continually praise God. Thank you for your inspiration! Hope today is better for you!

    Susan in Indiana

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  8. Just popped over from Kelly's blog to check on you. I hope that you feel refreshed after a night of rest and that today goes much better. Praying for you and your family. May you have strength that comes only from the Lord.

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  9. Praying for a better day today.....I feel your despair in your words....Jesus be with this family

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  10. The first days at MD Anderson are frustrating but as you go along you will find that the people there are wonderful and want to help you as much as possible. Praying that things become brighter for you as you continue your journey.

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  11. Praying for you and Tony and the doctors and other medical personal you see at MD Anderson,\. Do not let yourself feel like a number. You are important to God and he is with you'll in this journey. Prayaing for brighter days ahead in KY.

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  12. Janet,

    Hi, I found your blog through Kelly's blog a few months ago and have been praying for you ever since. God has also used your blog to encourage me in my own walk with Him. Your faith has been such an inspiration to me. Know that I am continually praying for you.

    Sincerely,

    Julie (from Houston)

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  13. It's understandable that in a strange place; far away from family and friends, it all feels very impersonal. Praying for better days and further healing. Chin up! You've been so brave and cheerful. We love you for it and your faith in God is a witness to all of us!

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  14. Don't be discouraged! It is a process to get you to the right doctor. My mom got the same response, she did a clinical trial (was in it's 5th year, don't let the words "clinical trial" scare you). She's had stage 4 lymphoma. She only had to have half the regime of treatments, and never lost hair or got sick. She's been in remission ever since. Once she got plugged in to the specific doctor it's very personal. Her doctor's nurse practitioner even comes to the my parent's beach house in NC sometimes. You'll build relationships. Sounds like you've made progress already - just seems to you maybe not. Maybe your expectations were built up so high that it could've never met them? It's still humans doing their best to treat humans with a tricky cancer. It is the place to be for cancer treatment. Keep your chin up - God has great things in store for you!

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