This week has been full of decision making and un-making decisions. Marlin and I traveled to St. Louis to consult with a radiation oncologist and follow up with my surgeon (6 month check up). I wanted the specialists at Barnes-Jewish Hospital to review my case again, since the chemotherapy is essentially complete. The recommendation from the radiation doctors was to do a special type of radiation called intensity modulated radiation therapy (IMRT) because it would be less damaging to my heart. Since my cancer was on the left side and I also received Adriamycin (chemo drug) which damages the heart, the physicians believed that conventional radiation therapy would not be safe for my heart. They did explain how radiation therapy would be done in Pittsburg, should I decide to have radiation locally. After their consultation, I was comfortable with having radiation therapy done in Pittsburg, since many women in America receive "conventional" radiation therapy without problems.
I had a followup visit with Dr. M, the surgeon, that went very well - return in another 6 months.
Thursday, I went to Pittsburg for an appointment with the radiation doctor at Mt. Carmel. He had changed the radiation treatment plan from what was explained to me by the doctors in St. Louis. Dr. J. was very re-assuring that what he planned was appropriate and would be safer for my heart. The plan he proported omitted radiation of my breast bone area - where the internal mammary glands are. The physicians in St. Louis were very adamant that the internal mammary glands be radiated. I was very confused, now, with the differing plans. I was doubtful, but agreed to have a first treatment.
Today, I consulted for the first time with Dr. Mathew, a medical oncologist. He is the doctor to replace the first medical oncologist I had (Dr. River). Dr. M. was very helpful. Marlin and I knew he had spent time reviewing my case, as he asked very pointed questions and discussed the radiation treatment with me. He was concerned that Dr. J. was not including the internal mammary glands in the radiation field and telephoned him, personally, to advocate for me. Dr. J. refused to change the plan. After much discussion of options with Dr. Mathew, Marlin and I agreed that the best option for me - with the very best chance of success - is for me to go to St. Louis for radiation treatment. I would have to stay in St. Louis for daily treatments for about 7 weeks.
I have been praying for wisdom in decision making. I have been praying for God's guidance for my physicians. I believe God has provided the path for me to continue my treatment. My devotions the last week have been chapters in Matthew of Jesus' healing (Chapters 8 and 9). By God's grace, he has provided guidance to me.
Keep me in your prayers -
Love to all -
Ellen
Friday, October 24, 2008
Monday, October 13, 2008
Praise the Lord!
PET scan results were very good!!! No spots of "activity" were revealed -- the chemo worked! I am filled with thanksgiving and praise!
I will continue treatment with radiation, but this news certainly influences the course of the therapy. I am so grateful for the blessings of God and your prayers.
Keep them up!
Thank the Lord because he is good. His love continues forever. Psalm 107:1
So let us be thankful, because we have a kingdom that cannot be shaken. Hebrews 12:28
Praise the Lord! My whole being, praise the Lord. I will sing praises to my God as long as I live. Psalm 146:1-2
Praise the Lord! and Love to You!
Ellen
I will continue treatment with radiation, but this news certainly influences the course of the therapy. I am so grateful for the blessings of God and your prayers.
Keep them up!
Thank the Lord because he is good. His love continues forever. Psalm 107:1
So let us be thankful, because we have a kingdom that cannot be shaken. Hebrews 12:28
Praise the Lord! My whole being, praise the Lord. I will sing praises to my God as long as I live. Psalm 146:1-2
Praise the Lord! and Love to You!
Ellen
Saturday, October 11, 2008
Fight or Flight
Stress and fear can create a response in the body that is called "fight or flight". The body gears up to run away from the enemy or to fight the enemy. I have been fighting this week. (Theme from Rocky begins to play.)
After my initial consultation with the radiation doctor in Pittsburg, I was very upset. He dismissed the recommendations from the physicians at Barnes-Jewish, stating his protocol was indicated and that "my insurance wouldn't pay for it anyway" (talking about Barnes' recommendations). I was so mad at this remark, that I quit asking questions and "turned off" anything else he told me. He did schedule me for a PET scan to evaluate the effectiveness of the chemotherapy for Thursday, but I won't know the results until next week.
BYW, I did call my insurance company and the representative told me there was a way for my case to be reviewed and they would consider payment, if deemed necessary.
I called the oncologist in St. Louis, Dr. Bose, and asked him to talk to the radiation doctor in Pittsburg. He returned my call Friday and told me he was scheduling me to have a consultation with a radiation oncologist in St. Louis at the time I see my surgeon for follow up - Oct. 21. I was comforted by the fact that another doctor will be reviewing my case.
Anyway, I have been fighting this week. I am aware that people with little knowledge of the medical system, how to navigate the system, or have no advocate, are at the mercy of the doctors and "the insurance companies".
Through all this, I have asked myself and asked God "why?". Not "why did I get the disease?", but "why did You give me this experience?" and "what will be the purpose?"
I have to believe that there is some reason. Perhaps I will be more of an advocate for others. I will need to listen more closely to God's voice.
I want to thank Lori for her caring card during my low time last week, with encouraging scripture written in -
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10
Continue your prayers -
Love to all -
Ellen
After my initial consultation with the radiation doctor in Pittsburg, I was very upset. He dismissed the recommendations from the physicians at Barnes-Jewish, stating his protocol was indicated and that "my insurance wouldn't pay for it anyway" (talking about Barnes' recommendations). I was so mad at this remark, that I quit asking questions and "turned off" anything else he told me. He did schedule me for a PET scan to evaluate the effectiveness of the chemotherapy for Thursday, but I won't know the results until next week.
BYW, I did call my insurance company and the representative told me there was a way for my case to be reviewed and they would consider payment, if deemed necessary.
I called the oncologist in St. Louis, Dr. Bose, and asked him to talk to the radiation doctor in Pittsburg. He returned my call Friday and told me he was scheduling me to have a consultation with a radiation oncologist in St. Louis at the time I see my surgeon for follow up - Oct. 21. I was comforted by the fact that another doctor will be reviewing my case.
Anyway, I have been fighting this week. I am aware that people with little knowledge of the medical system, how to navigate the system, or have no advocate, are at the mercy of the doctors and "the insurance companies".
Through all this, I have asked myself and asked God "why?". Not "why did I get the disease?", but "why did You give me this experience?" and "what will be the purpose?"
I have to believe that there is some reason. Perhaps I will be more of an advocate for others. I will need to listen more closely to God's voice.
I want to thank Lori for her caring card during my low time last week, with encouraging scripture written in -
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10
Continue your prayers -
Love to all -
Ellen
Sunday, October 5, 2008
Nothing to Fear
It's true. Fear had a choke-hold on me the last few days. The frustration with the doctors, radiation treatment, and ending chemo piled up on me and I was frozen. I have been praying more fervently and asking God for His healing touch and His direction in the decisions that face me with this disease treatment. It is overwhelming . . . then, God provided peace in my devotion last night.
God is our refuge and strength always ready to help in times of trouble. So we will not fear, even if earthquakes come and the mountains crumble into the sea. Let the oceans roar and foam. Let the mountains tremble as the waters surge! Psalm 46:1-3
Be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9
I have the last of 12 doses of Taxol and Herceptin tomorrow and have a PET scan on Thursday. I need your prayers this week to boost my courage. I feel your prayers have lifted me throughout this journey.
Love to you-
Ellen
God is our refuge and strength always ready to help in times of trouble. So we will not fear, even if earthquakes come and the mountains crumble into the sea. Let the oceans roar and foam. Let the mountains tremble as the waters surge! Psalm 46:1-3
Be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9
I have the last of 12 doses of Taxol and Herceptin tomorrow and have a PET scan on Thursday. I need your prayers this week to boost my courage. I feel your prayers have lifted me throughout this journey.
Love to you-
Ellen
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